Day by Day

No News Is Good News

2009-07-06T11:44:00.000-07:00

The biopsy came and went uneventfully. We traveled down on a Sunday after I taught my yoga class and we spent the night in a hotel. Monday we woke up and went to the pre-biopsy clinic where we were happy to learn that Joaquin has grown quite a bit since his last appointment (which was pretty obvious to us by looking at all his pants turn into highwaters). The doctors were very pleased with this as well as his labs. His creatinine is back down in the .3 range. Back in October/November he had jumped up to .5 and then seemed to have settled in the .4 range. Either way that's good to see. After the appointment we drove out the ocean and the boys played on the beach naked most of the day. It was so nice and relaxing.

One little bump in the road was having our biopsy time bumped back 2 1/2 hours but I figured as long as that was the only glitch, I could handle that. Thankfully it was. Joaquin was pretty hungry by that time since he wasn't allowed to eat anything after midnight the night before. So over 12 hours of no eating in a kid that has a bottomless pit of a stomach is not so pleasant.

He came out of anesthesia very well. When I was finally able to go back and see him after his procedure he was already pretty alert. No one under 18 is allowed in the post-surgery area so Chris had to stay back with Sage. Post procedure we are supposed to stay in the hospital (we were in the short-stay/day hospital) for 8 hours. He is sup

posed to lay flat the whole time and take it easy for the first 48 afterward at least but that's hard for an active little guy like him. He was able to have a popsicle shortly after he came out of anesthesia and did fine with that so he quickly moved up to solid foods, which he was happy about.

We were released a little after 10 o'clock. We had planned to stay in a hotel for the first two night and I think Chris was kind of thinking we would drive home after the biopsy but we decided after talking with the doctors that it would best to stay one more night. I agreed with the doctors when they said they would like him close by in the unlikely event that he would have any complications. We received notice from the Ronald McDonald House that they had a room available for us on the last night, Wednesday. We were happy about that since it's only $10 a night whereas the hotels they get for us at a reduced rate still run about $60.

We got up early in the morning on Wednesday and got home around noon. Chris went into work until 6 o'clock so at least he didn't miss too many days of work. We have not heard anything from the doctors yet but we kind of think (and hope) that no news is good news. The whole experience was positive. There wasn't the fear and urgency of the last biopsy. Chris and I both felt/feel that everything is good with him since he's growing so much and eating so much.

So otherwise things are great with us. We are loving our new house and living in the mountains. Donner Lake is about 5 minutes from our house so we pack up for the afternoon and head out there for a few hours to play on the beach. Joaquin's getting so much more confident in the water, wading out up to his chest. He still won't put his head under the water like he does in the bathtub but I figure that will come in time as his confidence grows. I'm not pushing him. I do take him out there and float him and show him how to swim. Sage says the water is "too cold, mama." But once I get him out there he kicks his legs and splashes.

Joaquin and Sage play so well together and run around all over the place together. They scream and fight occasionally but rarely do I have to step in. I usually just let them work it out - I only get involved if it gets violent. Joaquin is a great big brother - he's very loving with Sage. It's very neat to watch them interact with each and see Joaquin teaching little brother stuff. It gets overwhelming with the two of them but overall life is great right now.

Biopsy Tomorrow

2009-06-22T11:03:00.000-07:00

Please keep us in your thoughts and prayers tomorrow, June 23rd. We have a scheduled, follow-up biopsy for Joaquin. His latest labs are looking great and he's in general good spirits and good health. I'll update as soon as possible. Thank you!

The Big Move

2009-06-08T15:21:00.001-07:00

Greetings everyone! Life has been so crazy busy for us recently. I sent out a mass email a while back but for those of you who didn't get it, we are officially California residents - or I am at least. Chris still needs to get his driver's license, I already have mine. I only got one wrong on the test. Yay! We stayed overnight for the first time last Sunday but thankfully we were able to move our stuff in about three or four trips. My Dad and Mom helped us as well as Chris's parents when they were up here. One is most definitely faced with the amount of stuff one has acquired when one must move all said stuff to a new location. One plus is that we purged a lot of stuff that we didn't need anymore. We still brought a lot of stuff up with us.

The house is great. It's an A-frame house with plenty of room for all of us. I finally feel like we aren't living on top of each other. Plus it's in a better area. Our old neighborhood was getting a little too sketchy for me, especially since I had two curious young ones.

A big factor in our decision to move to California was that Joaquin's Medicare benefits run out at the end of August, his 3 year kidney anniversary. We were expecting this and thankfully there are more programs to help out little guys with this unlike adults, it's still stressing and worrisome for some reason or another. So we are in the process of applying for MediCal and CCS, a program for kids like Joaquin which will act as secondary to MediCal. Kind of how Medicaid is secondary and Medicare is primary for Joaquin. We have to switch pharmacies as well. I'm not too worried about a doctor up there - I did get in contact with the local pediatrician office and they seemed comfortable to take on Joaquin. We never saw our pediatrician here in Reno much anyway. Joaquin always seems to get sick on the weekends or in the evening when the office is closed anyway. And then about a month ago, I get a call from his current pediatrician's office in Reno saying that as of November 2007 they were no longer taking Medicare. Um, okay. Thanks for the heads up - 1 1/2 years later!! It was and is laughable and great timing since we were in the process of moving. So long story short, California has better programs and support for kids like Joaquin.

Speaking of Joaquin! He's turning 4 on the 15th of this month! He wants to have his customary party at Idlewild like all other years and then he wants to go bowling. So cute! So that's the plan! Don't tell him but we are going to get him a little razor scooter (don't worry, he has a helmet) and something else - maybe a poster of Sponge Bob or Lightning McQueen for his bedroom.

And then on the 23rd of this month we are planning another biopsy. A follow up biopsy to the one in January. We've tried to reschedule it about every month but some thing or another came up. So it looks like this will be a go finally. I don't know how to feel - I mean, of course I'm scared but I do feel like otherwise he's doing good. He's been eating so much lately and his little pants are getting to be high waters or capris. He's got great color, he's playing a lot, really active. I'm always scared about rejection, you're probably well aware of that now, but everything feels good right now. I just pray and pray that everything looks clear on the biopsy. Please keep us in your thoughts, please pray for Joaquin that his kidney is still okay. Think good thoughts for him and us. Thank you so much.

p.s. Thank you to Ms. Audrey Love for the beautiful pictures of my children. She took the pictures posted on this new entry as well as the last one. I love them.

The Short Haul

2009-05-02T11:00:00.001-07:00

After I had posted the last blog we were looking at another possible 10 days in the hospital because the type of bug Joaquin could only be treated via IV. It was a daunting outlook but we really had no choice but to push through. We would make it.

The next day I was at work and my Dad was at the hospital with Joaquin. I get a call from my Dad saying that the doctors had in fact found a drug that he could go home on. So a few hours later he was released.

I just wanted to update since the last post just said we would be there for another 10 days. Not so!

That's What Counts

2009-04-17T12:35:00.000-07:00

It is so hard to keep a positive attitude sometimes. So hard. Joaquin developed another UTI Tuesday and was admitted to the Reno hospital. He was started on two antibiotics that are pretty strong while they waited for the urine culture to come back. Typically it takes about 72 hours but after about 48 hours preliminary results generally come back. Yesterday they figured out that it was the bacteria pseudomona. It's a pretty strong bugger and can be hard to kill. The next thing was to wait for the culture to finish culturing and find out what the sensitivities of the pseudomona was so that they could take him off of IV antibiotics and put him on an oral antibiotics.

The good news is that the antibiotics he has been receiving since Tuesday night were working because his fever went away and he didn't have any pain complaints. The good news is that after he was able to sleep more he wanted to eat again and play. The good news is that his kidney appears to be happy and "normal" according to ultrasound results as well as blood tests. The good news is that he's in good spirits.

The bad news is that the type of bacteria is not sensitive to any oral form of antibiotics. So the bad news is that he may need to be hospitalized for up to 14 days total (including the three days he's already spent - so about another 10 tops).

Why does it always seem like the bad news outweighs the good?

We were supposed to go down for a repeat biopsy at the end of the month. Now it looks like that will be pushed back. I'm okay with that.

As far as what is causing the repeat UTI's - we're still theorizing as to why they keep coming back. The big one is that he is in the midst of potty learning and therefore learning to hold his bladder. Perhaps it's that he is not fully emptying his bladder. The other cause could be that he is not circumcized and that the foreskin is too tight. It may be that we have not been able to give it the proper cleaning. There are options to consider and try out before they would actually fully circumcize him. If I were to know that he would stop getting the UTI's then I would seriously consider a circumcision. I question whether or not it was smart of me to hold on so tightly to my beliefs against circumcision but I think that they were perhaps right and that the way he was treated as an intact littly boy may have compromised his genital integrity, leaving him vulnerable to more UTI's.

Some options in order to loosen the foreskin would be to apply hydrocortisone creme to foreskin surrounded the tip of the penis to thin the skin. Another option would be to do a dorsal flip, which from my understanding would require making a cut in the foreskin. The last resort would be a full circumcision.

So the good news is that he's in great spirits. The good news is that he's playing in the playroom right now. The good news is that he's getting better and he'll be out of here as soon as possible. The good news is that his kidney is happy right now.That's what counts, right? Right.

Hospitalized and Released

2009-03-26T12:51:00.000-07:00

As many of you know, we were hospitalized again Sunday night for a urinary tract infection. Saturday Chris and I dropped the boys off at Grandma and Grandpa's house while we attended a class. As we were about to leave Joaquin had to go to the bathroom. I had already left the house to get in the car but when Chris joined me out there he said Joaquin had complained about it hurting to pee. Oh great, I thought to myself. A few hours later my Mom called and said that Joaquin was running a fever. So we took him to urgent care but the renal doctors wanted some blood work done and I knew the urgent care wouldn't get the results back for a few days so we decided to take him down to the ER instead.

They did a urine analysis as well as a blood culture, urine culture, and blood chemistry. The urine analysis showed some leukocytes - meaning a possible infection - so they gave him two shots of a strong antibiotic in both his legs and sent us on our way telling us that we would have to come back for the next two days to repeat the antibiotics.

In the morning Joaquin woke up and was still running a fever. Although we have been told by the doctors that it can take up to 48 hours for the antibiotics to kick in I still didn't feel good about the situation so we called the doctors again. They wanted us to go down to the ER again to be seen by a physician as well as get his second dose of antibiotics. This time they opted to put an IV in since he was still complaining of pains in his legs where the first shots were given. They also needed to do another blood draw so putting the IV in would allow them to draw blood as well as administer the antibiotics without the pain in the legs.

We left and went back to my parents' house. A little later we get a call from the doctors in Palo Alto saying that they want to admit him to the hospital down there. Chris put his foot down and said that it would be hard on our family and wondered if they couldn't just do the same thing at the hospital in Reno. The doctors would have liked to see him first hand but agreed that he could be admitted to the hospital in Reno. So we went to Renown to check in.

We had to wait over 72 hours for the urine cultures to come back and tell us exactly what type of bug we were dealing with in his urine. In the meantime they were giving him a strong antibiotic called vancomyacin (I may have misspelled that). This drug was supposed to cover about 90% of bugs or bacteria. The only down side is that it can be toxic to the kidneys in too high of doses. So they were needing to check the levels of drug in his system before every other time the drug was administered. For some reason or another, the doctors were not able to get their poop in a group and one day they kept forgetting blood draw orders they wanted to get and so he was stuck 3 times. When the nurse came in to tell us that they were going to draw another time for something else Chris said, "No, you're not. He's had 3 sticks already today. You can get it in the morning." He said it with absolutely no attitude. The nurse was a little shocked but agreed. She said that she might be able to draw it out of his IV, which she was able to.

Finally the culture came back and we were able to identify exactly what type of antibiotics it was sensitive too. And after that his fever went down and stayed away. The renal doctors wanted him to be a-febrile (or fever free) for 24 hours. His last temp was Tuesday night at 8:30 p.m. but the renal doctors had him stay overnight anyway.

It was so nice this time to have my parents able to help us. My Dad would stay overnight so that Chris could go to work and I was able to take care of Sage. My Mom would bring Sage with her in the morning and so after my Dad would leave it would just be me and Joaquin - so I was able to give him special attention. We just had such a great system worked out. I am so thankful.

I just want to express again how thankful I am for all the thoughts and prayers sent our way. After I sent the email I could literally feel them. Thank you.

VCUG And Biopsy Update

2009-03-02T14:09:00.000-08:00

This time we did make it over the mountain, although there was a point in the journey, right as we crossed the pass near Donner Lake where I was having flash back from our previous attempt since there were snow showers. That morning Sage and woken up with a runny nose and Chris had been complaining for a few days of sore throat. When I picked Chris up from work that day we left he sounded awful. I was concerned about taking us all down there. I was feeling fine and Joaquin appeared fine but since the whole family wasn't healthy it did make me concerned especially since we would be around people whose children were also immuno-compromised like Joaquin. I know how I feel when I hear a kid cough even though most of the time once the symptoms appear the contagiousness has passed. But we pressed forward.

We arrived at the hotel in the late evening, we should have been there earlier but we were thisclose to being involved in a car accident in the freeway. It was a route we had never taken before where Chris thought we could avoid the tolls and wind up almost exactly in the place where our hotel was. Anyway, we witnessed a two car accident that took place right in front of us. It was scary but we were unharmed as well as our car. As we settle into our hotel room Joaquin starts in with a cough. He'd been having some nasal drainage so I thought maybe he was just clearing his throat but at the night when on it kept going.

In the morning the cough was not gone. We headed to the hospital since we had an 8:15 a.m. VCUG appointment scheduled. We were a little late getting there so we had to wait a little bit before Joaquin's name was called. The day before I had called the Child Life Specialists at our nurses' request in order to prepare Joaquin for the procedure. So before we did anything we went into this room with the CL lady and she pulled out all these toys that were small replicas of all the real equipment that would be used. Joaquin was vaguely interested. I think it prepared me more than him. I think it honestly made him a little nervous having it all spelled out for him and having everyone make a big deal out of it. The CL lady set up a Thomas the Train video for him to watch while they were doing the VCUG. Believe it or not he had never seen Thomas the Train so he was very interested and he stayed still for most of it but he did experience a little pain. The procedure itself only took about 10-15 minutes total. They cathed him and then filled up his bladder with a dye and took pictures with an x-ray machine. During the procedure the doctor did comment that there was a little reflux but I didn't ask any questions as we had a clinic appointment next so I would be able to ask more there.

After we were finished we had about an hour and a half before we had to be at our pre-biopsy clinic. We walked around the Stanford campus which is beautiful. We arrived at our clinic appointment and had a bit of a wait before we could be seen by our nurse. In mean time they gave Joaquin a little mask to wear since he was coughing. When we were seen by our nurse she said that she couldn't say for sure but that we would probably have to cancel the biopsy since he was coughing and they don't like to put kids under anestesia when they have any kind of upper respiratory stuff going on.

We ended up waiting to be seen for two hours! Towards the end we were all cranky and tired. But finally we did get to see Dr. Grimm who told us that the VCUG study showed a little reflux but not enough to do anything about. He thinks it has to do with Joaquin potty learning and just recognizing when he has to go to the bath room and learning to completely his bladder. Apparently the bladder only refluxes part way up the ureter so it doesn't even go into the kidney. Good news! Dr. Grimm also confirmed that we would not be doing the biopsy. He looked at Joaquin and said, "Hmmm, what would I do if he were my kid. No, I wouldn't do it." I agreed. I want Joaquin to be completely healthy so that everything has a better chance of going smoothly. So we left clinic, checked out of our hotel room and left for home.

So Joaquin is still fighting his cold which is largely in his chest. Chris has the same thing and Sage has a baby-version of the cold, which probably has to do with the fact that he's still breastfeeding and therefore has some of my antibodies. I had a little bit of a chest cold a while back but I seem to have escaped the big one that the boys are fighting. We are waiting for Joaquin to get better before we make the next appointment.

Sorry there are no pictures this time. I'll be sure to upload and post some soon.

Drama On The Mountain

2009-02-12T14:13:00.000-08:00

Yesterday I picked Mom up in the new (to us) Subaru and we hit the road, destination Palo Alto. Joaquin had a VCUG study scheduled for today (Thursday, February 12th) at 9 am followed by an 11 am transplant clinic appointment. The weather report said to expect snow showers and so we were thinking that it meant we would be fine. We were not anticipating snow storm. Around 3 pm we stop by Chris's work in Truckee to say good bye and we were on our way over the pass. The clouds were ominous but were producing little to no snow so I figured we would cross the pass with ease. About half way over the pass traffic slows to a stand still. Apparently there is a major accident up ahead of us. We wait and wait - probably close to 45 minutes. The boys get restless and so we take them out of their car seats and let them play in the front. People have put their cars in park and have wandered out of them to play in the snow or converse with fellow drivers. A group of men pass our car on foot presumably to check out the cause for the back up. As they had back to their cars I ask if we will be going soon. The man replies in a thick Australian accent that they said it should be soon. I see a group of men up ahead run back to their cars and I see brake lights light up. We put the boys back in their car seats as the line starts moving.

Okay, I'm thinking, this should be so bad. We'll be two hours or so behind on our schedule, no big deal. Traffic is going slow. The truck driver who was stopped next to us on the interstate took the opportunity during the long wait to put on his chains. He says the road is, "slick as hell" as he kicks his boot into the snow. I'm not worried, we have a four wheel drive car. Not more than 15 minutes after we start driving again the traffic stops. Okay, I'm starting to get annoyed. I ask Mom if she thinks we should turn around and just reschedule the appointment. She says I should call my Dad and get a weather report. I call him and he tells me that there is a winter storm warning in effect for the Sierras and apparently we are sitting, "in the thick of it." You're telling me, Dad, I say. He laughs. He said that they anticipate the warning to cease at 4 in the morning on Thursday and be clear until the afternoon/evening of Thursday, right as we are planning to return from Palo Alto. I do not want to be stuck in traffic again. Mom thinks we are putting the boys in danger by doing this so I decide to turn around and go back to Reno. I cannot get ahold of Chris at this point because he is at the gym. So I call Joaquin's nurse and let her know we will not be coming to Reno. I see an sign announcing that the Blue Canyon exit is 3/4 of a mile ahead and I decide this is where we will turn around. About the time I get off the phone with the nurse, I notice that the car is starting to sputter like it's going to die. I tell Mom this, she looks nervous. I am nervous but I'm thinking once we get going it will be fine. Problem is that the traffic is still stop and go. About 400 yards or less from the exit the car dies. The car has a little momentum going so I pull it off to the side of the road, just barely.

I try starting it. No luck. The car is dead. I call AAA because I'm hoping that by some fluke or grace of God we still have a membership with them. No luck. The lady does give me the number to a tow company in Colfax, CA. I'm not sure we are even close to Colfax. I filled up the gas in Gold Ranch, about ten miles out of Reno and reset the odometer and when I look at it, it says we have gone 64 miles since we filled up. We call 911. The dispatcher says that no highway patrolmen can come to us since they are dealing with multiple accidents. My Mom gets a little pissy with her and says that we will be the next accident because we are not far enough off of the road. Finally she acts interested in our plight and says she will send help. At this point a man in a pick up truck pulls up next to us and asks if we are alright. Mom says no and explains that we have no heat and two babies in the back seat. He says he will stay with us until help arrives. At this point the snow is coming down, the sun is setting and our car is beginning to be buried under snow. It was a crazy situation. I had the most overwhelming sense of being helpless, of being completely isolated and at the mercy of the elements even though cars were crawling past us.

Not too much longer after that the patrolman pulls up. I have called the tow company in Colfax who says we are too far away and gives me the number to a tow company in Nyack, CA, about a 1/2 mile up the road from where we are. I call the number and the woman says someone is on their way but that they are stuck in traffic and it might be a while. I just want my boys and Mom in a warm place so we move everyone to the patrol car and I plan on staying with the Subaru until the tow truck arrives. The patrolman says he is going to find out how long I'll have to wait, if it's too long he recommends me going with them. When dispatch gets back to him she tells him that the tow truck is about 45 minutes from being there so I decide at that point to go with the patrolman. As I'm grabbing the essentials from our car the tow truck pulls up. The car won't even go into neutral so he has to drag the Subie onto the back of the truck. Mom and the boys have already left for the Nyack junction and I follow behind with the tow truck driver. Apparently, the patrolman had two little boys of his own and so he turned on the lights and the siren for Joaquin. He was thrilled!

Problem with Nyack is that it does not have anything except a gas station and a Burger King. No lodging, no car mechanics. At this point we are about equal distance from Auburn, CA and Truckee. I really, really, really do not want to go to Auburn because it's about 100 miles from Reno and all I want to do is get closer to home. So I convince the tow truck driver to drive us back to Truckee, where our car repair man is at anyway. It going to cost us, he tells me. $280 an hour. We really have no other option at this point. He's a little hesitant to put us all in the cab of the truck but I explain that we are all rather small and that we'll fit. He says we could call a cab but I ask if we could even get one at this point because apparently the interstate is closed due to white out conditions. He agrees that we probably can't. I just want to go to Truckee. So we load up everyone in the truck, the Subie sitting on the bed of the truck and we hit the road again, back towards Reno.

Mick, the tow truck driver, figures it will be about an hour to Truckee from Nyack because of the roads. The conditions are pretty much white out blizzard but I feel oddly safe in this huge truck and this burly truck driver. He begins to talk and says he's been doing this for a long time and he's used to driving in this kind of weather. He's a mountain man. He drives tow trucks, used to drive school buses, and also plays drums in a band. Sage pretty much immediately wants to nurse, he's tired, and falls asleep. Joaquin's eyes are wide and he's retelling the story of how the car stopped and Mom couldn't start it again to Mick. He's loving every minute of this adventure. My Mom and I were both scared at first but while I was on the phone with my Dad he basically told me I needed to remain calm otherwise the boys would get scared, so I think that helped me to remain rational about the situation.

We pull into Truckee. Chris had told me that my Dad was on his way to Truckee to pick us up but apparently there is another accident right outside of Gold Ranch and because of that and the weather, they were not letting anyone who did not have proof of Truckee residence through. Right next door to the car mechanic was a hotel that we had planned on staying in. Mick thinks that problem with the car, based on what I told him, was the alternator had burned out. I ask Mick if he thinks I could jump the car and drive it to Reno. He thinks I would probably get half way and it would die. But our car mechanic is in Truckee anyway. So at the gas station we square away the payment - it ends up costing us $560 to get the car towed to Truckee. Mick turns out to be a real nice guy. He could have charged us much more but he was just going to charge us what he could get away with. I wasn't looking for any deals. I knew he needed to get paid and I needed to get closer to Reno.

Chris tells me that our friends are coming to pick us up. They are going to let us stay with them. While we are waiting in the gas station the attendant asks me if we want him to start working on the car in the morning. I tell him that I need to speak to my husband first and that we have a mechanic we would like to take the car to. I can immediately sense his attitude shift. That does not make him happy and he grumbles something about possibly having to charge us $30 to store it overnight. My Mom turns to me and says, "Get some jumper cables, jump the car, and we'll drive it over to the mechanics." Another customer in the gas station hears and says he has some that we can borrow. Mom thinks the gas station attendant probably would have tried to charge us to use the jumper cables too. So when our friend, C, arrives we are able to jump the car and drive it over to the mechanics. We arrive to our friends' house around 8 pm, 5 hours after our ordeal started.

Oh, but the drama does not stop there. After we arrive, Joaquin is excited to be playing with his friends. They have a wood burning stove. Sage was wondering around and ended up walking up to the stove and burning the pads of his four fingers, the only one without burns was his little thumb. Poor little dude. They have no aloe vera. The only thing that ended up making him feel better was sticking his whole hand in a glass of cold water. He was up screaming well after everyone had gone to bed. I finally had to give him a dose of Tylenol. He fell asleep with his hand in the water. I just prayed that he would sleep alright and he did.

This morning my Dad came and picked us up. Chris called not too long after had left and said the mechanic said the alternator looked fine and that it was the battery. So it will end up being cheaper than we thought, thankfully. For some reason or another we were not meant to go to Palo Alto. We have rescheduled the VCUG for the 26th of February, the day before the follow up biopsy. I don't know why we didn't just plan the VCUG and biopsy in the same trip. But anyway, we are home now and happy. And we have quite the story to tell.

The Follow Up

2009-01-28T15:32:00.000-08:00

Within the week after we returned from Las Vegas I opened a letter from the renal clinic and our nurse saying that they wanted him down in Palo Alto on February 12th for the VCUG reflux study. We had been expecting that but the more I think about it, the more I feel uncomfortable with it. I don't think that my uneasy feelings about it weigh very much to the other people involved in his care, including Chris. I would like to believe that they wouldn't do anything to him that wasn't absolutely necessary so we will probably do this study. The study included catheritizing him, or placing some sort of tube up his penis. That is what makes me so uncomfortable. He already has a problem with his "plumbing" and urinary tract infections, I would think that pushing something up someplace that should only have things going out could pose problems in the future. I worry that it will push up all those bugs and other germs that are not meant to enter. But, really, what do I know?

The other part of the letter from the clinic was indicating when our follow up biopsy would take place: February 27th. At some point we were told we would need one and that it would probably take place 6 weeks after the original biopsy. This time it appears that it will be an outpatient thing instead of inpatient would mean that we would not be admitted to the hospital at all. I'm going to stay positive that the biopsy and VCUG will be complication-free so that we can just go back to our life as quickly as possible.

At first I was a little upset by this. Part of me feels like the doctors are taking advantage of the fact that we allowed the biopsy at all, but I recognize that as most likely being an irrational thought and not at all the doctor's intentions. Another part of me feels a little irritated that they are scheduling this two things in February and so close together since it will require Chris taking off more work. I'm sure that I could go down and handle it myself along with another adult to help with Sage but I know that Chris wants to be there too. I feel like it's a little inconsiderate of our family as a whole but at the same time, Joaquin is their concern, not us. So I guess I understand.

I am mostly okay with all of this. I wish we didn't have to go through it again but it wasn't as horrible as I had anticipated it to be. I'm hoping and praying that both procedures and quick, virtually pain-free, and complication-free so that we can return to our normal lives as quickly as possible.

Joaquin has been doing remarkable since the biopsy. It was like a blip on his radar. He recovered so quickly and has been doing so well since. Growing like a weed, eating like a horse, and chattering like little people tend to do. He can count to ten alone and today we counted to thirty together. He can count to five in Spanish and to three in French. He's recognizing his numbers better every day. He's saying the funniest and sweetest things.

The View From The Hospital

2009-01-21T13:40:00.000-08:00

I was finally able to upload some pictures although blogger is not making it easy for me. These are from our time in Palo Alto at the children's hospital.

This is the boys playing in a playhouse on one of the decks.

Friday was the first full day in the hospital. They placed the IV on Thursday night when we were admitted and so all day Friday he had to wheel around with him. He was hooked up to the IV because he needed to be NPO (meaning nothing by mouth) for at least 12 hours before the biopsy.

Another one of the boys playing. They do have lots of fun stuff for little guys to play with there.

Joaquin was NPO for about 16 hours after the biopsy. He was grumpy and starving after his procedure and finally he was allowed a popsicle which he shared with little brother.

Obviously enjoying his first post-biopsy meal.

Sage and I tried to keep Joaquin occupied for the 8 hours he was supposed to be mostly immobile following his biopsy. That was hard but we got through it.

Chris talking on the phone while we spent time outside on the roof of the hospital.

Sage and Joaquin playing on the roof of the hospital. Note the wagon: we made good use out of it!

Sage checking out the train station set up on the first floor of the hospital. This was the morning we left for Reno after his last blood draw.

Not Going Down That Road

2009-01-19T14:54:00.000-08:00

Sorry to have just left this blog hanging after I was posting so much. We arrived back in Reno on Wednesday afternoon and left Thursday night to come down to Las Vegas to visit Chris's family.

Tuesday before being discharged we made a plan with Dr. Alexander to stay overnight and do labs again in the morning. Joaquin's Prograf level was very high and he was on a very low dose of Prograf. The doctors were thinking that the steroids he was given may have artificially raised his levels, since that can happen. The lab that we go to in Reno is not able to do the Prograf levels for us and they fly it down to Las Vegas. So the turn around time is longer than at Stanford where they can receive same day results. On Wednesday his level was back in his "range" but they kept the dosage the same and so we had to do another test on Thursday morning. We won't know about the results until tomorrow.

So basically what we know and what Chris and I have been able to understand is that when looking at the preliminary results on Saturday from the biopsy on Friday the pathologist saw inflammation in the kidney which would lead them to think rejection and/or infection. Since he also tested positive for donor specific antibodies (DSA) they thought it would be one of two types of rejection: 1) cellular, or 2) humoral. Chris and I are thinking they thought it was humoral since that's the type that corresponds to a kidney transplant patient having the DSA's present. Dr. Grimm was still optimistic about it but I could tell that he wasn't totally optimistic just by his voice and face.

I really thought that it was humoral, unfortunately, since there were the DSA's present and they said he was having a case of rejection. We had to complete three days of steroids and 14 days of antibiotics. Monday he finished his last dose of the steroids and Dr. Alexander wanted us to stay in the hospital until we heard back on what type of rejection it was since if it was humoral rejection we would have had to do an IVIg. I guess you're supposed to wait a day between the steroids and the IVIg. So we would have started that on Wednesday and it would have taken 10 hours to complete the full treatment via IV, of course.

So in the late morning Dr. Alexander came into the room. Looking back on that I don't know if it was as he walked into the room or later after he had left that I noticed he was in a good mood. At the time it didn't really affect me because we were coming to peace with this whole rejection business. We start talking to Dr. Alexander and he said that there was no humoral rejection and gave us a big smile and thumbs up. I looked over at Chris and he looked at me. We were catching a break! He went on to say that upon closer look and more testing they were thinking that it wasn't rejection at all but infection. He also had a positive urine culture. Now, if y'all remember, back at the end of October Joaquin was sick and also had a urinary tract infection. Since then he had tested negative, but apparently Dr. Alexander did not know about that. The certain type of bug he had tested positive for is a tricky guy that is hard to get rid of. I remember Dr. Alexander said, "That's it!" when we put all the puzzle pieces together. In a sense it's both a good thing to have so many doctors and a bad thing since all the information about one patient sometimes does not get to all the doctors. But that's what we parents are for, right? We keep all the information straight.

Dr. Alexander was saying that there was no need to keep Joaquin in the hospital anymore. We are planning to go down to Stanford in another month for some more tests, specifically one to see if he's refluxing into the his kidney. Joaquin's always had "plumbing" issues - it was the whole reason for his kidney failure in the first place. Dr. Alexander said that no surgeon would ever admit that his plumbing didn't work but that it sometimes happened that way. The refluxing could be the reason that he's having so many UTI's. And since Joaquin did test positive for DSA's, there's a chance that we will most likely go down and do an IVIg. The reflux test and the IVIg can all be done in the same visit when we go down again.

This all just felt like a miracle to me. I didn't think once the words "rejection" were spoken they could ever be taken back. I thought we were going down that path, that we'd have a rejection under our belt. I just never thought that we could go back to not being in rejection. I was worried that even if he did have little to no scarring that once his body started trying to reject my kidney it would be a bumpy road. I couldn't believe that Joaquin's kidney was rebelling. Turns out it wasn't.

We are flying back to Reno tomorrow morning early and I imagine I'll have a lot of unpacking and resettling to do so I'm not sure when I will be able to update again. I plan on putting up some pictures of our time. The one I posted is from the night we were released from the hospital and we're all in our hotel room. Good times. Joaquin was so excited to be out of the hospital. We were too.

Thank you again for all your thoughts and prayers and for helping us get through this.

No Rejection?!

2009-01-13T12:57:00.000-08:00

We have crazy news for you all. After seeing more of the biopsy results today the doctors are thinking that we are dealing with infection and not rejection!!!

Chris and I are in a bit of shock and I'm still processing the information and so I don't feel like I can put it down coherently right now but hopefully in the next few days I can. We are still waiting for a few more results but as of right now Dr. Alexander is thinking that it is most likely not rejection.

They want us to stay down here until tomorrow morning so we can have one more blood draw as his Prograf level is still very high and we aren't sure why. We plan on making a trip to the ocean today to celebrate and give thanks.

Thank you so much for your prayers and good thoughts, from the bottom of our hearts.

More Waiting

2009-01-12T22:02:00.000-08:00

Today our day nurse came into the room and said something along the lines of us possibly being discharged. I was a little shocked since I'd been mentally preparing myself to be here until Wednesday and I'm not sure why. We were supposed to hear back more results from the biopsy today but we heard nothing. Around noon I thought the doctors were going to come into our room since they were rounding but we were skipped. Later our nurse explained that they were waiting for the blood work that had been drawn in the morning that had never been run. I still was not thinking we would be released today.

Around four, Joaquin and I went back to the hospital room. The Forever Young Zone (FYZ) is open almost every day from two to four and Joaquin has been waking up in the morning asking to go. Today he wanted to leave early because he was hungry. I thought he was a little tired too so we went back and I washed him up some grapes and he sat in his bed and snacked them. About half way through he patted his tummy and said, "That's what I needed." Not too much later the nurse came in and asked if we had spoken with his doctors today. When I replied no she said she would go and page a team member so we could know the plan. I got butteflies in my tummy again. I've been afrain that there's more bad news coming for some reason.

Close to an hour later a pediatrician came into the room. I thought she was just a floor pediatrician, not related to the renal team but Chris says that she is. I'm not sure. Anyway, she said that they were waiting for more results from the biopsy to come back and that they hadn't come back today. They would be in no later than Wednesday. What they're waiting to find out is what type of rejection is it. It could be two different kinds: 1) cellular - which they would have treated with this three day course of steriods; or 2) humoral - I don't know that I'm spelling that right but what it has to do with is the donor specific antibodies that were present in the blood test they ran earlier in December. If it is the 2nd possible thing then they would need to start the IVg (I don't know if I'm spelling that right, either) and then we would come back in a month to do another one. Today was the last day of steroids but Dr. Alexander wants to keep us around in the hospital until the test comes back.

So what that basically means is that we're just sitting here waiting. I was a teeny bit upset but then Chris put it into perspective for me that at least it wasn't "bad news" and that we were just waiting around versus something being wrong. He's right. We could hear the news tomorrow or we might have to wait until Wednesday. If it comes back as being the first we are done and out of here. The pediatric doctor or whoever she is told us she was sorry that we had to wait so long to hear of the plan and that she would talk to someone about talking to someone who could possibly speed things along in the lab.

Either way we're holding out okay. Joaquin is in good spirits although sometimes the IV bugs him because the bandaging gets too tight. He's really good about being careful with his IV too. Both the boys are getting a bit of cabin fever as we are all living out of this hospital room and the car. But there's lots to do around here and we try to get outside often.

So hopefully we will hear more tomorrow and maybe even be released but like I said, I'm mentally prepared to stay until Wednesday. Thanks for all the well-wishes, love, prayers, everything. It means a lot to us and gives us strength throughout this time.

I Never Thought It Would Happen To Us

2009-01-10T21:05:00.000-08:00

I think the hardest part of all of this for Joaquin was having to stay rather still in his hospital bed for 8 hours following his biopsy. It was important for him to do so because it would lower the risk of bleeding. We watched about three or four movies while Chris and Sage were out and about.

The other hard part was not having anything to eat or drink by mouth. He was on IV fluids so that he would not be dehydrated but it was still hard for a snacker like him. Not too long after he was situated back in his room the doctors okayed him having a popsicle. He was so excited and had about two and a half of them. He shared a little bit with brother too. After he demonstrated that he was able to hold down those they allowed him solid food. He made up for lost snacking time. Around eleven o'clock he was able to get out of bed and run around.

I woke up this morning feeling nervous complete with butterflies in my stomach. I didn't know what to expect. Things were definitely going on with his kidney but to what extent we were all uncertain. The waiting was hard. When I got to the hospital we all went outside on a little veranda to enjoy the sunshine and fresh air. Chris and I were just talking about the doctors when Dr. Grimm turned the corner (kind of an ironic name, huh?) along with one of the fellows. He came out onto veranda with us to deliver the news. His face wasn't very telling but he didn't seem ecstatic at all looking back on it.

Basically, he told us that an unbiased pathologist (he prefers not to know whose kidney he's looking at) said that the kidney tissue looking inflammed and that based on that he would say rejection was going on. My heart dropped. The news we did not want to hear. He said that the good news (yay! good news!) was that he did not see any scarring which means that the rejection happening was reversible.

I have to be honest, my initial thought was that all those prayers didn't do anything. I was crushed. I lost faith. I felt shaky and a little weak. But I didn't cry. I clung to the hope the good news offered. Soon after I had that thought, I thought to myself that the prayers did work because there was no scarring. His kidney was not going to be lost. His kidney was healthy and if it was not healthy it could be again. Chris told me that maybe prayers didn't work specifically, if that makes sense. I figure that God or the universe had it's plan or path for us and that it will all work out.

It's sad, and Chris would probably say that I'm feeling sorry for myself, but I've lost a little faith in my own motherly intuition. Motherly intuition does not readily lend itself to kidney transplants, I've decided. To me, motherly instinct and intuition are natural things. Kidney transplant are not natural things. Perhaps I shouldn't lose complete faith, and I haven't. My motherly intuition falls short in all things concerning his transplanted kidney which ironically is my kidney. I told the doctor that I felt a little hurt that he would my kidney would reject him to which he quickly corrected me that it was his body rejecting my kidney. He also said that it's just a warm up for the teenage years. He said there are lots of complicated emotions surrounding donating kidneys. I guess I had just hoped that we wouldn't have to face rejection.

Dr. Grimm said that this type of rejection happens to about 30% of patients so relatively not uncommon. I asked if it perhaps was the emergence-c that we had given him when he was sick. His numbers got weird right around the time he got sick at the end of October - that's when all of this started to happen. The first indication being that his creatinine raised. He said it was a possibility and that when the sickness happened his body could have gone into red alert and that while running around fighting the nasty bad guy viruses it stumbled across the kidney. We'll know more on Monday and I'm sure I'm leaving something out here but I feel like I got most of it down.

I'm really not that scared although I did hit a wall today. We are going to be here in Palo Alto until probably Wednesday. They're starting him on steroids and antibiotics for the inflammation. By Monday we'll have the full picture. I'm thankful to have a little bit of info, though. I'm glad that part of the wait is over.

I've been trying to get pictures up but the computer around the hospital are not making it easy for me so hopefully sometime soon I'll have some to share. Joaquin has been in great spirits throughout all of this. The doctor said one of the side effects of the steroids is that he may develop a "voracious" appetite. I thought to myself, I don't know how much more this kid could eat. He already eats so much! So we'll see.

Thank you for keeping us in your thought and prayers. We appreciate it.

So Far So Good

2009-01-09T21:46:00.001-08:00

Well, I am relieved to say that the biopsy went off without a hitch. He was scheduled to go in about 3:30 p.m. but they said it could be sooner or later since they were fitting him in. Around 2:30 p.m. they came for him and it was a good thing cause he was a hungry little dude. He sat in my lap as we were wheel chaired down to the pre-operative room. Sage came with us and we all hung out waiting to see the anesthesiologist. Once she had visited with us, asked her mandatory questions, and filled out the appropriate paper work we left for the pseudo-operating room (it had an official name but I can't remember it now). Sage wasn't allowed in there and since he still has a preference for mama I was trying to take him out but before I did I needed to give Joaquin a kiss goodbye and tell him I loved him. He asked me to stay with him so I handed over Sage to Chris and stayed. I do not like seeing him go under anesthesia and so I had sort of envisioned Chris staying with him but since he asked I knew I had to stay no matter how it made me feel.

The care team was all really great and I stayed with him until they administered the drugs to make him go to sleep. His head slumped against my chest and it was time for me to go. The nurse thanked me and I slipped out into the waiting room with Sage and Chris. I cried just a little bit but it felt different this time watching him go under. I felt he was going to be okay.

The doctors had said that it would be about 30 minutes to prepare for the procedure and about 20 minutes before the actual biopsy the main doctor showed up and explained in a little more detail what would happen. After he left we sat around and said a prayer for Joaquin and his kidney. Chris decided he needed something from the hospital room so he left and Sage had fallen asleep. The doctor came out and showed me a little vial that had clear fluid in it. He showed me a couple of little pink strands in there and said that those were the pieces of his kidney. He said that Joaquin had done an excellent job and that everything had gone "perfect." He said that they were going to apply pressure to the puncture site for 5 minutes to make sure there was no bleeding but that the ultrasound had shown none along with no irritation to the vessels around the kidney. After the 5 minutes were up they would begin waking him up and then they would take him to recovery and that we could follow and wait in another waiting room. Patience is a virtue in the hospital!

Soon the door opened and we saw him being wheeled out. He was sleeping and we followed him to another part of the hospital. They said that he would wake up soon so except to be notified any time. We waited.... and waited. I began to get a little nervous since it was taking longer than I expected. The phone in the waiting area would ring whenever a patient was ready for his family. The lady at the front desk kept leaving and the phone would ring and ring. I felt it might be Joaquin because there was only one other family in the waiting room. I paced. I wanted to answer the phone so badly but I refrained. Finally we were notified he was ready for us.

More later... and pictures too.

Biopsy Day

2009-01-09T12:26:00.001-08:00

We are currently at the hospital where everything is going smoothly. We checked in last night at about 9 pm after driving down from Reno. Our nurse was great and they were able to place an IV quickly. Joaquin didn't cry or get upset in the least. He is currently is in great spirits.

The biopsy is scheduled for 3:30 pm, which will mean another overnight stay since he needs to be monitored for 8 hours following the procedure. It will take about 1/2 hour to prepare for the procedure - making sure he is sound "asleep" and doign an ultrasound for precise location of where the needles will be placed. The actual biopsy - where they take a piece of the kidney - will only take about five minutes.

We should get preliminary results tomorrow (Sat.) and will get the whole picture by Tuesday or Wednesday. Depending on the preliminary results we will either go home tomorrow or Tuesday or Wednesday. Not sure yet, the results of the biospy will dictate that. The course of treatment will also be determined by the biopsy results as well.

Please keep us in your thoughts today. We could use a lot of strength and good, healthy kidney vibes. Thank you.

Sooner Than Expected

2009-01-07T20:49:00.000-08:00

It was quicker then expected but Chris received a call from Amy today saying that they couldn't get us into the outpatient clinic until the 10th of February and so instead they wanted us to come down tomorrow (Thursday) and check him into the hospital overnight and then fit him in some time of Friday. There's no set time for the biopsy.

I wish we didn't have to be admitted to the hospital because this procedure is an outpatient one but it looks like this is what is going to have to happen. I'm not really too happy about how this has to all go down as it seems to make things much more difficult and stressful for our family.

I plan on bringing the laptop down to Palo Alto with us so hopefully I'll get to update. We're hoping to do the biopsy and then be released Friday from the hospital but there is a real chance that he might have to spend the night again. Please keep us in your thoughts on Friday. We could use a lot of strength and good, healthy kidney vibes. Thank you!

Silver Lining?

2009-01-06T19:08:00.000-08:00

First, I wanted to thank everyone who sent us their love and support - we really needed it and most definitely felt it.

I don't really have to much to update on. We didn't even hear from anyone at Stanford until today and it was only after both Chris and I called multiple times. At first it irked me that they would call and give us news and information like that and then take over a week to get back to us (after we called them!) and while it still does irk me a little I'm also feeling like that meant it wasn't urgent. If it was something that needed to happen quickly then we would have been down there last weekend. No matter how flaky they can be, they are on top of the care of their patients for the most part and tend to always want to "play it safe" which I appreciate So that's good, I guess.

Finally today Chris got in touch with Amy. She's making it sound like it isn't urgent at all and that it may not even be that big of a deal. She told Chris that at their Joaquin conference (a conference they have for all of their transplant patients) there was no mention of the word "rejection." So that's good!!!! We are going to go ahead with the biopsy since he did have the antibodies and both Chris and I feel like it's time. Ever since that sickness at the end of October his numbers have just been all wonky - we'd like to make sure everything is okay and that we're not missing anything. The doctors have never had a biopsy on Joaquin and they would just like to see an very clear picture of how it's doing. When I talked to Dr. Wong she really made me worry but their actions (as far as not making it an urgent thing and taking over a week to get back to us) have made me wonder if she wasn't just making sure they got this biopsy. We've always told them that if there was ever cause for concern we wouldn't hesitate and they know that. They've tried a few different times to "talk us into" getting a biopsy but we never felt it was warranted. Well, now we're all on the same page.

A big concern with doing the biopsies and Joaquin is that he didn't do too good with anesthesia the last two times he's been given it. He's much bigger now than when he had his last incidences and we feel like they are well aware of how wary we are of using it. We've talked to Joaquin a little bit about what the doctors told him and asked him what he felt about it all and he says his kidney's good and that if he just eats more pears, apples and bananas then it will be even better. He's such a character.

So as of right now we're waiting on Amy to let us know when they can fit us in. Some time this month, but we're not sure when just yet. I turned to Chris the other night and said, what if we just prayed that he didn't have any antibodies at all! Miracles happen. I just pray for a healthy kidney, both Chris and I feel like he's doing really well and so is his kidney. So, he's not sick. He's a happy, healthy, extraordinary 3 1/2 year old kidlet!

Thank you for all the prayers and I have to request that you keep sending them. Our prayers and blessings are with all of you as well.

We love you.

Another Bump In The Road

2008-12-31T12:26:00.000-08:00

I'm going to just copy and paste the email I sent out last night since we are rather busy around here but I wanted to update and let everyone know what was going on. We still haven't heard from his nurse in regards to scheduling his biopsy. Chris and I talked about it last night and we are willing to go down at any time. We would prefer it to happen right now so we know what's going on and we're not in suspense. We both are very hopeful about everything. I turned to Chris last night and said, "Why don't we pray that when they go in and take the sample they don't find any antibodies at all anymore. We can pray them away!" So that's what I'm praying for. Here's the email from yesterday:

As much as I don't want to be writing this I am. We got a call today from the doctors in Palo Alto that Joaquin is going to need a biopsy. They performed a donor specific antibody test (just a blood draw) that shows he's got them which means that if they are not already attacking his kidney, they will. They do not know if he is have a case of rejection yet, the biopsy will let us know. We don't have a date scheduled yet but it will hopefully be in the next couple weeks.

The courses of treatments are relatively simple. If it's showing he is not having any form of rejection, we would his current dose of cellcept. If he is mildly rejecting then we would give him an intravenous IVG which would wipe out the antibodies and if it's worse than that there is another medication they would give him. This is not acute rejection which means he will most likely not need steroids, just meds to wipe out the antibodies.

I feel peaceful about it. I feel like we will at the most need an IVG - which is not bad. In order to do a biopsy he will need to go under general anesthesia and they will pluck a small sample of his kidney. It's not something that requires him to be hospitalized overnight. If everything goes as plan we will need to go in to do the biopsy and then he'll be released. Please send us positive results and overall kidney healthiness. All of your prayers and those you've contacted to pray for us have worked. I'll let you all know when we know more. I'll update the blog. You can pass this message along to anyone you wish. In fact, we would appreciate it.

________

Joaquin is doing really good. He's acting healthy and he's eating and playing so we take that as a good sign as well. But at the same time if he has this donor antibody thing going on it's a slow way to kill the kidney, it's not something as obvious as acute rejection which would be fever and pain or tenderness over the sight of the kidney. That's why it's so important to get in there and figure out exactly what's happening. We've been looking forward to getting down there but since we got the call last night we are even more anxious. It couldn't come fast enough.

Here's wishing you all a great New Years Eve!

Gallbladders, Stitches, and Such

2008-12-22T15:24:00.000-08:00

We've had an eventful week around here. First off we did an abdominal ultrasound on Tuesday or Wednesday (in mommy world the days just blend together) and then on Friday Sage got his first set of stitches!

The abdominal ultrasound was because his liver levels were a little high and it could be caused by one of two things: 1) a gallbladder blockage; or 2) growth. I personally think it's growth. The kid has been eating non-stop. And remember how they wondered why his creatinine had gone up a little? Well, there you go. Everything is pointing to him growing down to his favorite basketball sweatshirt becoming a three-quarters length shirt. We haven't heard anything back from them yet about the ultrasound but I'm really not worried. Amy, his nurse, told me that they are just playing it extra safe, like they always do.

Otherwise, he seems to be doing really well. There was a while there where he looked a little pale and I was wondering if this was because of low iron levels or just his natural skin tone. They had checked his iron levels back in October at my request and said they were fine. On the last big panel of blood work they suddenly wanted to prescribe him iron. So I don't know if they just missed the ones in October or it was declining or what.

So then on Friday, Sage is playing near Grandma and Grandpa's fireplace hearth and fell while grabbing for a book. I was out of the room when it happened but I heard "the cry" - you know, the one where you just know they are hurt. I race out to the living room and even from down the hall I see the blood and I just know that he's going to need stitches. Grandpa was right there and blood is dripping down and I run to get a paper towel so we don't have a big mess. Oh man, it was deep. So deep. He cried for a couple of minutes and I'm just getting myself ready to go to the urgent care. Joaquin was a little scared and cried a little but we all reassured him that brother would be fine and by that time Sage wasn't crying anymore.

Mom came with me to the urgent and when the doctor came in he told me that he could do stitches but that he knew how kids freak out and since it was on his face he wanted me to the emergency room because they would have better skills and more hands to hold him down. Turns out that Sage was really pretty mellow. They put some cream on his head that had to sit for 45 minutes and by the time they got around to stitching him up he was sleeping. I think he was more angry about having to be held down more than anything. The doctor did a great job. We thanked him. When they told us we would have to go to the emergency room I was thinking this would be a long time since they are notorious for long waits, but the total time spent from Grandma and Grandpa's house to the urgent care to the emergency room was 3 1/2 hours. I think that we probably would have been fine doing the stitches at the urgent care but none of us knew how Sage would do so I'm fine with our decision to go to the emergency room. I didn't end up needing to give Sage any pain relief. He seemed fine and not in any pain. So now he's got 3 stitches and a nice scar on his left temple.

Other than those mini-dramas, we are gearing up for Christmas and New Years! We are excited to spend time with our family and friends. We plan on just staying in Reno and having the Martin traditional chili and clam chowder (although the Martin tradition is usually oyster stew - same same, right?). Now that my parents are out here we plan on making our own family traditions so clam chowder it is! We'll keep the chili because almost everyone, no make that everyone, is a big fan. Especially my chili. Sorry Mom! But your chili was my chili's muse.

Happy Holidays to you and your loved ones!

Happy Thanksgiving!

2008-11-25T15:44:00.000-08:00

We are gearing up for Thanksgiving around here - lots of talk of turkey and "cranberry soup" that Joaquin wants to make. We bought some cranberries at Whole Foods recently because I think that since cranberries contained the word 'berry' he thought it would be similar to blueberries or raspberries or strawberries. He wasn't too happy when he discovered how tart they were so he decided that we would make soup out of them. I'll try, I hope he likes it!

We are doing well around here. No sickness *knock on wood* since he flu-like bought of sickness he had in October. His levels are slowly coming back around. His creatinine is still at about .5 which isn't too much of a concern but at the same time it kind of is. They have added more water to his daily regimen in the hopes of bringing it down. His Prograf has been exceedingly high since his sickness so the doctors are thinking it could be one of three things. The first being mild rejection, the second being toxicity in the kidney due to the high Prograf, or third it being just him growing. He might just be at .5 - it's a real possibility. I tend not to think that it's mild rejection, I don't know why. I just don't think that what it is. I tend to lean more toward the second or third. He is growing fast right now; his Prograf was really high which could be a little stressing on the kidney. We had labs again today and I won't even begin to go into what a mess that all was. I'll maybe save that for another post.

So pending labs we are considering a kidney biopsy. Since we refused the routine biopsies, we've always told ourselves that if there were anything that made us or the doctors suspect anything was wrong with his kidney, like rejection or toxicity, we would consider a biopsy. Part of me has always wanted to do one because I don't like going against doctors' recommendations but at the same time I always felt like everything was fine. Another part of me just wants to be told that his kidney is fine and dandy. With toxicity coming from too high a dose of Prograf, they like to do a biopsy to see if a lower dose could be in order. He might not require the dose he's at - and they would never lower the current level until they did a biopsy. Hands tied.

When Chris and I discussed it a few days ago, I felt at peace but then when I started thinking about what a biopsy entails... Joaquin is much older now than when the last time he went under anesthesia, it could be a whole new ball game now. He might tolerate it better. I just don't know. It's so tough, I wish it wasn't such an invasive procedure, I'm sure I wouldn't hesitate to do it.

I'm just having a really hard time this season with worrying about sickness. I know I can't prevent it, I know it's going to happen. I just hate the feeling of the impending sickness. I wake up in the morning and wonder, will today be the day he starts another fever. That kind of mentality drives Chris up the wall because he's a glass is half full kind of guy. We are very vigilant about always washing our hands after we come back from being in public and before we eat but even that can't prevent air-borne germs. Last night he was running around the house crazy-like and rather than being annoyed at the noise, I was so thankful that he was just feeling good!

As I've mentioned before, it's just so hard for me to differentiate between what's normal toddler and what's toddler with a kidney transplant. Is there a difference? Are the two mutually exclusive or not? I don't know. There has never been a clear answer from the doctors. I just don't know how other parents are able to go on with their lives just not knowing because I can't imagine them knowing more than us. After all, we ask a bazillion questions and the doctors are always saying that rarely does anyone ask so much. I can't imagine other parents who ask less questions knowing more.

But Joaquin is doing amazing right now. He's growing so fast and learning so much. I love the age he's at because it's easier to reason with him and he understands what I'm saying and I understand what he's saying. I can talk to him about things pertaining to his health, he can tell me better how he's feeling. I don't want it to seem like his this sickly kid, when he's really not. He's doing so great right now and really thriving. He's such an awesome little kid!

Sage is doing well also, he LOVES reading books. He follows us all around the house with his books. He does a little sign language, and he says more and more all the time. His newest thing is saying "milk" when he signs for it. He really likes dogs. He also loves to snack - the kid is like a little goat and will eat pretty much anything, be it edible or not.

So Happy Thanksgiving to you! We are staying in Reno and having dinner at my parents house. We are having some friends over but it will be a pretty intimate Thanksgiving compared to the last few years. I don't mind, it will be good food and family no matter how many people are present.

No Rejection!

2008-11-01T12:55:00.000-07:00

The title of this blog pretty much sums it up: no rejection!

Yesterday I was out running errands when I got a call from Joaquin's nurse. She said, "Meghan? I have good news! His Prograf level was crazy high." And so that solves the mystery of the high creatinine! We both agreed that we've never been happier to see a high Prograf level. It's not a good thing for it to be high but it eases our fears.

When Prograf levels are too high it can cause the creatinine to be high. His BUN was looking excellent and I don't know if you remember from way back when in October 2006 but I explained that when the creatinine and the BUN rise together it usually indicates that a person needs more fluids because they are too "dry." When creatinine rises without the BUN, that's worrisome. We knew he wasn't dehydrated, so what was causing the rise? The two main culprits are usually high Prograf or rejection. Usually, but not always. The nurse said that she hadn't even spoken with the doctors yet, but that she just called me right away to tell me. When she had called I had just parked the car so after I got off the phone with her I sat in my car and screamed at the top of my lungs. Talk about relief. I called Chris right away and his first words were: "I knew it!"

At the end of September he had a high creatinine reading and it was caused by high Prograf. The next creatinine reading was at his usual .3 so we really clung to the hope that everything was alright since his creatinine had come down since that higher reading (.6, I believe). So all we are needing to do is just adjust meds accordingly and that should fix the creatinine.

Relief. Oh my. Such relief. This week was a nightmare. It brought back so much of the same fear, uncertainty and worry that we were feeling around the time of transplant. Such an awful place to be. It's a helpless place to be, especially as a mother. There were times I would look at Joaquin and wonder, "Is this it? Has our worst fear come true?" I would feel a sense of peace but the fears would wash over me and drown that feeling so quickly. Time seemed to slow to a snail's pace - the agony of waiting and wondering is maddening.

Joaquin's renal ultrasound went well. Usually the technicians don't say much and don't have much information to offer either because they don't know or don't feel it's their place to tell. When we first arrived Joaquin had been sleeping and so when he first started looking at his belly he noticed his bladder was full. I asked if we should jump up and empty it and he said no, he can wait until we're almost done. So we spent about 10 minutes peering inside of Joaquin's abdomen. The kidney was just relaxing in there. It's amazing how they look like actual kidney beans. It looked smaller then I remember but then again, Joaquin is bigger than the last time I'd seen the kidney on the screen. That's my kidney in there, I remember thinking to myself. Joaquin was a little nervous about this whole ultrasound business but we assured him there would be no poking, nothing would hurt him. He was fascinated by the whole experience too.

So after about 8 or 10 minutes the technician told us to go use the restroom and then we would finish up after that. So I take Joaquin into the restroom. At the beginning of the appointment a nurse (I'm assuming, she never introduced herself, but she was kind and smiley) had come into the room to observe and maybe help if need be. When we were in the restroom I hear them talking in low tones so I couldn't make out much of what they were saying, the only word I could make out was "rejection." Of course, my stomach dropped. I hadn't planned on asking about how things were going but after that I felt like maybe this guy knew something so we walked out and got Joaquin back on the table. I asked him, "So, how are things going?" I don't honestly remember what he said to that but then I asked, "When we were in the bathroom I heard you say something about rejection. What was that about?" And he went on to explain that ultrasounds can be diagnostic tools in assessing whether a kidney was in rejection but that there was arguments amongst the ultrasound community as to how good ultrasounds are at truly diagnosing rejection. He went on to say that his number looked good, the kidney looked nice and profused, etc. So I walked away from the appointment feeling good. And Chris said, "Why would he bullsh*t you if you were going to find out the news anyway?" True.

So.... everything is okay now. Chris and I held Joaquin's hands before going in for the ultrasound and said a prayer for a happy kidney and a return to our "normal" life (again, what does normal mean? See my thread for our definition of it.) And it looks like our prayer was answered. I feel bad for losing a grip on my faith in Joaquin's kidney. I've always felt like everything would be okay, even from the beginning. It's like I had to go to those dark places in order to get to the positive place. It was awful but I made my way through somehow. Actually, I know how.

I said this in an email today but I wanted to make sure everyone heard it: Thank you for helping me through this time. Thank you for the voices of logic and rationality when I had none. Thank you for keeping me level headed.

Update

2008-10-30T14:30:00.000-07:00

I don't know if it's good news or bad news as the nurse was rather vague on the phone but his creatinine was .6 today versus being .7 yesterday. So it's come down but not as quickly as they would have hoped for. So, erring on the side of caution they're trying to get us in for a renal ultrasound today. She said that his BUN looks good which means he's hydrated so we don't know why this creatinine is up. One thing is that we haven't receieved the Prograf level back yet and if that are high, it could be what it causing the high creatinine.

I don't know. I feel pretty peaceful, although Chris and I are both feeling like we want to crawl out of our skin right now with all the waiting and wondering.

Joaquin is doing good today. I'd say he's close to 100% better than he was while sick. He's playing and eating and drinking. Now if we could only figure out what's going on with his kidney.

I'll keep you updated.

Thank you for all the prayers and love.

Stay Positive

2008-10-29T23:37:00.000-07:00

Today we received word back from Amy today regarding his labs. We checked creatinine, BUN, white cell count, and Prograf. We won't know Prograf for another day or so but we did learn that his creatinine is a little elevated at .7 when usually it sits around .3 - .4. So while that's not alarmingly high, it is a little alarming that it's elevated since his creatinine has been so steady. Our nurse did not seemed overly concerned, I would even say she sounded calm. His last creatinine on the 13th of October was at .3 so it's somewhat safe to assume that his five day fever could be the culprit. When we went in for labs yesterday his phlebotomist said commented on how he was dehydrated since none of his veins where showing up. Today he said, and I quote, "Well, this is a little better."

So the nurse said that after consulting the doctor, they would like to increase his fluid intake by 500ml or 1/2 a liter. Seems like a lot but when you're willing to do anything to get the numbers where they need to be, it's not so bad. And really, it's not so bad. We have a little 4 ounce cup that we fill and make him drink all at once. It would surprise you how (relatively) easy it is to get the required amount of fluids in. I'm going to wake up a few times in the night and get him to drink a cup, which I'm sure he's not going to be happy about but it's also not a permanent thing. I'm not sure if we're only going to need to tack on an additional 500mLs tonight or if this will need to continue for a while - labs tomorrow will give us a better idea.

So the nurse said that since his last creatinine level looked good, she's theorizing that he's just needing the extra fluids and that it's not rejections. However, if his creatinine does not responde to the extra 500mL's of fluid then there we will move on to the next steps which would be IV fluids and/or a renal (kidney) ultrasound.

Pray, pray, pray that this is just a little dehydration from the sickness and fever. I'm nervous and worried and scared but at the same time I do feel peaceful and also that this is just because of the sickness. All the little pieces of this are pointing in that direction.

We are repeating labs in the morning and should know more by the afternoon.

Thank you for all the love and support today, we really appreciated it.

All The Prayers We Can Get

2008-10-29T11:17:00.000-07:00

I sent out a mass email yesterday to lots of you requesting prayers or whatever you've got in you for our Joaquin. I don't mean to be an alarmist; I think I just needed the comfort and support of those who we love and love us. The more I think about it the less worried I am. The more responses I read in return from my email the better I feel.

Saturday morning Joaquin woke up with a fever and red splotches all over his body. I called his Stanford doctors and they were pretty confident it was just a symptom of the virus that he was fighting but since they didn't have him in front of them to confirm this they suggested that we take him in to be seen. Chris took him in and the doctor agreed that it looked viral. The doctor in Stanford that Chris spoke to a day later about this said that it was a good sign that he was fighting something viral along with the fact that the rest of our house was also fighting something as well. The concern with flu-like symptoms and a fever is, of course, rejection because those can be symptoms of rejections - but not always. The doctor said it made him feel good that he had the red splotches along with his flu-symptoms and fever because it all pointed to a viral infection rather than rejection.

Anyway, so that day at the Urgent Care they took a urine sample and saw his urine had some suspect stuff in it. It wasn't a "clean catch," which means that Joaquin hadn't had a shower in a couple of days. Usually when we do a urine sample we take a shower or bath and then clean the area up really good. There have been a couple of times that a urine sample has come back saying he had something in it when really the culprit was a "dirty catch." So Chris brought him home, Joaquin took a shower, we cleaned him up good and we did a clean catch at home and took it back to the lab. They did a urine culture this time, in which means they let the sample sit for 48 hours to see if it would grow anything. In the meantime, the doctors had prescribed some antibiotics that not only are good for urinary tract infections (UTI's) and pneumonia, among other things. After the clean catch was returned we started the antibiotics, just to be on the safe side. Usually, I don't like to do antibiotics "just to be on the safe side" but there were other factors influencing my (and our) decision to start them before we had received the results.

So like I said before, we got a call back from the Urgent Care and they said that the results said "proteus" which is something found in the gastrointestinal tract and is usually uncommon in causing UTI's. What they usually see as the cause of UTI's is e.coli. But they said that proteus was sensitive to the type of antibiotics Joaquin had started taking already and that by now he should be feeling better. And he is.

Naturally, after I got the message from the Urgent Care I started getting worried about what if this is rejection. There is no link between UTI's and rejections. Joaquin's nurse was saying that he probably had a virus and a UTI - a double whammy, so to speak. I asked if they were concerned about rejection and she said, "Let's just do labs tomorrow and we can ease everyone's concerns." Now, Joaquin's nurse has never been very good at easing my fears or making me feel better but there was not an urgency behind getting the labs. They just wanted them done this week or Monday. So we went in this morning for labs.

Every day I'm seeing improvement in him. Every day he's getting off the couch a little more, he's needing less Tylenol, he's eating a little more, he's drinking better. We went in for labs yesterday and they were not able to get any blood so we had to go in this morning again. We were successful this morning, thankfully.

So we will most likely have results from the labs late this afternoon and I'll update everyone then. Thanks again for your love and support.

Holding My Breath

2008-10-24T15:25:00.000-07:00

Joaquin came down with a fever yesterday afternoon. I got him into the doctor shortly thereafter just to be seen. Since he had been a little stuffy with a runny nose I was pretty sure that it was viral and the doctor that we saw (his regular pediatrician was off) confirmed those suspicions. He was feverish all night and into the morning. Before Chris left for work at about 5:30am he gave him another dose of tylenol. Joaquin has been doing very, very good at drinking his fluids for the day. He went above and beyond what he needed - which needs to happen since he was running a fever. He's been in good spirits the whole time which puts me at ease a little because the times when his illness has been super serious he was not in good spirits.

This morning he threw up his meds twice. The first time he did it, it was too soon after taking them so he had to take them again. The second time enough time had passed to where I felt comfortable with not re-dosing. I spoke to the doctors in Palo Alto after the first upchuck who advised me to give him another dose since less than 20 minutes had passed. My Mom said it looked like lots of phlegm so it's a good thing he's getting it all out of his system.

I've just been on borderline panic mode. I just want him to be well. It's always so hard to see your little one sick but couple that with being fearful of rejection... well, it can be nerve racking. We were conditioned from before the transplant about rejection and one of the signs is a fever. Later a doctor told me that it's one of the last symptoms of rejection and since he gets regular blood draws that's not something to be worried about. Then when he got sick back in January while he was staying with my parents and we were out of town another doctor told me that they aren't so concerned about fevers this far out of transplant.

And while that's all very reassuring, I'm still so ingrained with fear of rejection. I can understand that it's better to have parents on hyper-vigilant mode but at the same time I'm the kind of parent that wants to know everything about everything. I want to know at what point should we be worried? At what point does it cross from being about the kidney and be about just normal toddler sickies? I understand it will always be about the kidney to some extent but this worry is so hard for me to deal with. I just want to cry about it. I feel like I'm such an instinctual parent but my instinct goes out the window when it comes to Joaquin being sick. I feel helpless and that's enough to make most mothers mad. I look to Chris to allay my fears - is he really bad? Is this really bad? How do you feel about this Chris, cause I can't tell!

I mean, everything is alright with him. My Mom said she would call me if something were to go down today and so far I haven't got a call. I just cannot wait to exhale cause I feel like I'm holding my breath! There is like a black cloud hanging over my whole day. I cannot wait for the fever to go away and for him to be on the mend. Our two hospitalizations last year around this time does nothing to help my current mind frame either but we aren't dealing with the ng anymore either...

I think more than anything I just needed to get that out there. So thanks if you've read this. I appreciate it.

p.s. ~ Could you send some healing vibes to Joaquin please? Thanks.

'Tis The Season

2008-10-23T19:15:00.000-07:00

The cold and flu season that is! Today marked our first (of hopefully not many) visits to the doctors for a viral bug that Joaquin and Sage are both fighting. Sage has nothing to show for it except his snotty nose - which isn't too snotty. Unfortunately Joaquin doesn't usually escape so easily from colds and flus. He usually ends up with a fever but luckily at this point in the game we don't have to rush to an emergency room. Nowadays we make sure he stays well-hydrated. Right now we're doing 1.5 liters of water, or about 1500 ml's. Yes, we have had to increase it since the last time we went down from 2 liters to 1.3 liters.

On our last visit to Stanford, which was October 13th, his creatinine was up just a tad so they decided to increase water intake. It really isn't too bad having to add that extra 200ml's. There are some days that are harder to get the required amount of water into him but those days aren't that many thankfully. They said that his creatinine was expected to increase as he grows bigger and that will also means he needs to drink more fluids. When I say that he needs to drink 1.5 liters that is not exclusive to just water that can also be other fluids like juices (or the occasional pop -not a whole pop!) We prefer water just because juice tends to be mostly sugar.

We didn't see any of the regular doctors that we usually deal with, we had a couple of doctors who I have never met in person but I have spoken with one of them on the phone. He was actually the doctor that I spoke with back in January when we were out of town and Joaquin was running a fever back in Reno. He was the one who told us that they aren't so worried about fevers anymore as being indicative of rejection. More or less, fevers now just means staying extra hydrated.

Beyond that a few other minor details we really don't have anything major to report from our visit to Stanford. Joaquin is still a wee man at 31.5 pounds and little bro is catching up at 21.9 pounds (yes, we weighed him on their scale at the doctors'.)

We made a little mini vacation out of our trip to the Bay area. We visited some family on Chris's side in Antioch, CA. Keith and Alene have been major supporters throughout Chris and I's life together starting mainly with Joaquin's birth yet we had not met them in person until that weekend. We stayed with them Saturday afternoon, got up on Sunday morning, had pancakes and hit the road.

We drove down to the Santa Cruz area and met up with our friend Kim at a park right outside of Santa Cruz. From there we went to a redwoods tree park and went for a walk. After that we went to the beach. It was a good trip.

I would like to write more but my computer is running so slow so I'm going to end it here. Hope all is well with everyone!

Goodbye Summer

2008-10-08T12:39:00.000-07:00

We had a great summer. But I'm ready for the fall. Our friend told us about an organic apple orchard so we decided to all go apple picking one weekend day. It was so much fun. I just finished processing them all, so now we have lots of applesauce! I've included pics of our good times.

We recently had an appointment in Palo Alto this past weekend. We decided to make a mini-vacation out of it so we left Saturday morning and stayed with family Saturday night. Sunday we made our way to Santa Cruz where we met up with another friend. Monday was our appointment. I'll post an update on the appointment and some more pics in the next update! Hopefully it will be sometime this weekend!

Winding Down Summer

2008-09-10T23:23:00.000-07:00

We have had a great summer. I can't speak for Chris but I'm confident that he feels the same when I say that I/we are really enjoying our family. And when I say that I mean our little foursome and my parents here and Chris's sister and nephew and his parents and of course all of our phamily - close friends. We have such a great community of people who love us and our kids and who we love. We all take care of each other, support each other and love each other. It's great.

The end of summer was Joaquin's kidney anniversary with Sage's birthday following two days afterward. We had a nice birthday at Idlewild Park for him where lots of our friends came and my Mom made vegan chocolate cupcakes that were so delicious. It was a potluck birthday and everyone brought yummy dishes to share. In my opinion, you can't go wrong with a potluck! Sage decided that in honor of everyone coming out to share in his birthday celebration he would try out this walking business everyone talks so highly of. So just before the end of the party he tried it out and was successful! Since then he really hasn't done a whole lot more on the walking front. He tried it out here and there but his preferred mode of transportation is the bear crawl. He's a cautious Virgo so he's taking his time getting into walking since he doesn't like failure. He's funny.

This past weekend we were in San Francisco to see a concert called Power to the Peaceful. We were there 5 years ago (wow, 5 years!) and it was much more mellow and far fewer people. I guess in the 5 years between our last visit more people have caught on because there were so many this time. It's a free concert so I can understand. It's held in Golden Gate Park. The next day, Joaquin, Sage, Chris, me, Joaquin's bff Ranon and his Mom, Sommer all went to the exploratorium (which is where the picture above was taken.) It's the kind of place where you don't have to follow your kid around reminding him to not touch anything. They can touch everything there and it's interactive. We had a good time there.

I really have nothing new on the kidney front. Joaquin continues to drink enough and sometimes more than enough fluid every day so we are still living an ng-free life and loving it. We all just finished battling a cold about two weeks ago (although Chris didn't get hit and I suffered a little longer than Joaquin and Sage) and we all did fine with that. Joaquin wasn't really wanting to drink a lot but that's not really an option for him. He must drink.

Anyway, I was thinking that I might make this blog more about our family now that we are so far out of transplant. I will continue to update with any and all transplant related info but I'd like to include more about what our family is up to as well. Hope you don't mind. Didn't think you would. At the bottom of this post I'm going to include a video montage that I made for Sage's first birthday. Enjoy!

Photo and video editing at www.OneTrueMedia.com

Happy 2 Year Kidney Anniversary!!!

2008-08-28T21:32:00.001-07:00

Today two years ago I was in a pretty drugged up groggy state having just had one of my kidneys removed and placed into my 14 month old son, Joaquin. At that point in my life the future was kind of dark and uncertain since undergoing that kind of operation is never without risks. Would we make it to two years? I didn't know but I really, really hoped and prayed a lot about it. Turns out we did. Going into the transplant I felt good about it - I didn't figure there would be any problems. Joaquin's aunt Dawn said something to me around the time of Joaquin's birth and kidney failure diagnoses, she said that she had a feeling of peace that everything would be alright. It was one of those moments of fleeting clarity where I knew and felt that too.

So now we are two years post-transplant. After Joaquin's transplant I stopped worrying so much about how he compared to his peers, I felt a sense of peace in the midst of the post-transplant storm. Instead, after the transplant I felt like finally we were moving forward instead of just waiting in limbo. Watching Joaquin thrive made it feel like it had been the right choice after all. It's like we finally exhaled.

Joaquin doesn't really understand the whole transplant deal yet - we talked a bit about it today and he gets the gist of it. Mom took her kidney out and gave it to him. Some day he'll have a better grasp on what exactly that means. To me it's not a big deal and would rather have the spotlight off of me in these days because I am just so thankful and humbled by all the powers that be who watched over us and all the prayers and support we received. It's such an intensely scary thing to have to go through but all of the people who kept up in their thoughts and prayers really helped to bring us through to the other side. So we thank you, again, from the bottom of our hearts. We love you all.

I put together a little montage of our experience up to date for your viewing pleasure.

Make video montages at www.OneTrueMedia.com

Health and Happiness

2008-08-12T00:40:00.000-07:00

We love summer around here. What I especially like about summer is the lack of sickness. Yeah, I here about someone catching something here or there but over all it's just a time of year when the colds and flus are far and few in between. *Knock on wood* we haven't had any sickness this summer. I think the last time that Joaquin was sick was in February or March when we all dealt with a flu bug of some sort. Now that we don't have the ng tube anymore I'm hoping that we'll skate through this winter without pneumonia or any major illnesses. I do expect the colds but one big cause of Joaquin's upper respiratory illnesses were because of the ng. We were told this by numerous doctors.

Nana and Papa were up visiting this past weekend. They are always lured up here by the prospects of not only seeing the grandchildren, but it's also Hot August Nights here - which means lots of cools cars. Grandpa, Joaquin, Sage and I walked downtown one early afternoon to check the cars out. It's still pretty hot here so we didn't spend a whole lot of time there but Joaquin did enjoy himself. We spent some time with Chris's sister and brother-in-law while his parents were in town. He and his cousin Aiden (Chris's nephew) are at a great age where they play so well together. Cousin Aiden is way into Batman and all sorts of superheros and Joaquin loves to play along.

Joaquin's thing right now is "Cars" the movie and just cars in general. He likes to run and pretend he's a car complete with the car noises and everything. He's also an avid reader - we read lots of Berenstein Bears book as well as Mercer Mayer's books.

Life without the ng has been great! We haven't had to put it back in since Sage took it out, although we have had to put the threat on the table when he's not being cooperative about drinking his water. That doesn't happen very often, thankfully. He's getting less and less resistant to drinking what he needs to during the day. There are those days where it's like pulling teeth but we always manage to get all he needs. It's nice to have him drink all his water in the day, that way he's not getting it over night and soaking his clothes and the sheets. This would happen usually every night. The other night he fell asleep and I hadn't put a pull-up on him and forgot to until it was morning and we were waking up. I asked him if he was wet and he said no. Sure enough, he wasn't and got up right away to use the bathroom. So much change for Joaquin since he's turned three - it's like the big boy golden age or something.

Sage is doing well too. He's standing and cruising around. He's cautious about walking on his own but I think that's his Virgo nature. We anticipate those first steps any day. His first words were "dada" and "mama" (which sounds more like, "mooma"), but his first officiall word besides the usual was "ball". He likes to say it often. He's also pointing and identifying objects like when I asked him where la bella luna (moon) was he looked to the sky where she was and pointed. The developmental changes that just seem to come from no where never cease to amaze me.

Our summer is winding down but we've had lots of fun. We don't have much of anything else on the agenda for the rest of it except more bbq's and swimming!

A Little More "Normal"

2008-07-18T00:56:00.000-07:00

We have had an awesome accomplishment in our home - Joaquin has been ng free for almost a month! One morning baby brother pulled it out. Apparently Sage had decided that it was time because ever since then we have not had to put it back in. I didn't think it would be happening so soon. At an appointment either in January or April, Dr. Alexander was saying that it would probably be another year before he could have it out.

So now he's officially drinking 1.3 liters of liquid a day. At first it was like pulling teeth to get him to drink it all but we've noticed that it's been getting easier and easier and we find ways to make it easier for him. Things like pouring smaller amounts into little cups or using straws. Juice boxes are our friend and we also have a little water bottle (called a Kleen Kanteen) that holds 12 ounces. It's rather easy to know how much he's drank every day.

We are now almost 2 years post transplant. Joaquin is able to go swimming now. We are obviously staying away from stagnant lakes and the like, but since he never really swam before this he's been taking his time warming up to it. A friend of ours gave us a free season pass to the local water park Wild Waters. Chris and I were talking about how Joaquin like the energy of the waters parks, like all the kids running around, but he's not so sure about the water. We're taking our time and easing him in. I'd like to do some swim lessons with him eventually too.

The beginning of July always means festival season for us. High Sierra Music Festival is always fourth of July weekend - which is also Chris's birthday (well, July 5th). So we all went. This was Sage's first festival but definetly not big brother's first. He's been to 3 High Sierra Festivals. He really enjoys himself. Loves playing in the dirt, camping and partying. This year he was way into the kid's zone area. Lots to do and lots of kids to play with. Thankfully this year it wasn't as hot as last year!

I always thought that having the ng tube out would be such a dramatic difference in our life. True, now I don't shield Joaquin's face anymore from nosey people, but I don't feel like it's as big of a deal as I thought it would be. Kind of like after we didn't have to do dialysis anymore. It's just another step in the direction of "normal" - whatever that means. I guess for us normal means feeling like our lives are more than a kidney transplant. When Joaquin would have to wear the ng tube it's all people would see. It's all people would ask about. It was this giant elephant in the room. Now we go places and we don't get stared at. We don't have people coming up to us and asking what's wrong with Joaquin (which I find incredibly rude). The only time we've talked with an outsider about what happened to Joaquin was at High Sierra when he was at the kids' zone and had his shirt off. A little boy noticed the scar on his chest and asked what had happened and we told him. This little kid thought Joaquin was some kind of super hero for having "his stomach cut open!" It was actually pretty amusing. And I didn't mind talking about it.

Happy 3rd Birthday!!

2008-06-16T00:37:00.000-07:00

I know what you're thinking - Wow! She's updated three times in almost a month span! She's on a roll! Yeah, I guess you could say I'm on a roll - there's just a lot that has been going on in our lives. First it was preparation for the benefit and everything that goes along with that and now comes a birthday. Joaquin Zion Rubin has officially been earthside for three years or 36 months at exactly 2:53 p.m. on June 15th. We held his birthday party at Idlewild Park, the same place we held it last year.

At one point during the day I was reflecting on how three years ago at this time we, he was in the hospital. I thought about how different it was that we were celebrating a birthday in the park and what a stark contrast it was to being in a hospital. And being very thankful that we were at a park instead of in a hospital.

So today we celebrated three years of Joaquin. Three years seems like both a long and short time. A long time in a sense that he seems like he's been here forever, like I can barely remember what life was like before Joaquin; and short in a sense that, holy guacamole! (in the words of Joaquin) he's been here for three years already!

Joaquin is in a rapid period of growth right now. In pictures taken of him only three or four months ago he has made this leap from baby to boy. Even when I look at his little body I see the changes. Usually when you are with a person on a day to day basis it's more subtle but it seems like there are mornings when he wakes up that he literally looks bigger than the day before.

We haven't had a blood draw in about three weeks. It's time, not only because it's been three weeks, but because he needs his monthly labs drawn. With monthly labs they draw a lot of blood, pretty much the limit of what they are allowed to draw. He does well with it. It's been nice not having to go so often.

We are having another fundraising event for Joaquin. I was approached by a couple of people, one of whom owns a salsa dancing studio. Every Saturday they have salsa dancing where people pay $10 at the door and receive a free lesson and then every dances the night away after that. The nice thing about this event is that we have had to do virtually nothing. All we're responsible for doing is spreading the word. Today Kassia, the person who's helping to put the event on, dropped off some flyers for us to pass out. I'm looking forward to the event, I haven't ever salsa danced before so I figure not only are we raising money - we're also learning to dance and just dancing!! I love to dance.

Benefit!

2008-06-11T23:09:00.000-07:00

The benefit we held for Joaquin on Sunday June 8th, 2008 was a success! We had a good turn out and raised good money. Joaquin was a little late showing up and when he did he was a little intimidated because of all the people. He sort of knew that everything was for him and I think that was a little overwhelming for him. Thankfully, his good buddy Ranon was there and so they ran around playing together.

Sol Jibe and The Mark Sexton Band were great! Both bands were very enthusiastic about being there and played great. We're looking forward to working with them again in the future.

All in all, we raised about $2500!

Joaquin on the news!

2008-05-30T15:37:00.000-07:00

We got interviewed for the upcoming benefit by the local news yesterday afternoon.

Here's a link to it: http://www.kolotv.com/kids

Look to the right of the page and you'll see a picture of Joaquin and Sage. Click on the "play" button and watch the video.

Joaquin was very excited to see himself on the news. He had to watch it a couple of times. The icecream cone he was eating was the reward of a bribe on my part. He didn't want to take the time to come and talk with the cameraman so I told him if he did then he's get one. It's my first time bribing him like that and look how well it worked!

It's also cute where he pulls up his sleeve and talks about Buckey poking him in the arm. That's the phlebotomist we see numerous times a month. He really likes Buckey and so when they were asking him about the doctors and the hospitals that's what he talked about. So cute. Otherwise, he was a little camera shy and wanting to show off his pedaling skills. The clip was supposed to air this morning on the news but never made it on for some reason so we've just been pointing everyone in the direction of the website. Please pass along the link and share!

Upcoming Benefit

2008-05-28T23:11:00.000-07:00

We are proud to announce another benefit in Joaquin's honor. It's being held June 8th, 2008 at the Great Basin Brewery in Sparks, Nevada. We have Sol Jibe and the Mark Sexton Band playing for us and they all seem very excited about it. Please save the date and join us!!

Other than planning for the upcoming benefit, we are also looking forward to Joaquin's 3rd birthday on the 15th of June. We plan on having his party at Idlewild Park again, near the same spot as it was before - over by the lion family. Joaquin's excited about it and talks about the people he wants to invite.

Joaquin and I had a stomach bug a couple of weeks ago and it was no fun. Joaquin had diarrhea and his creatinine and BUN were both a little elevated. We made sure he was getting plenty of fluids. His last lab on the 22nd of May was a good one with his creatinine, BUN, and Prograf level all being perfect. Diarrhea can be scary for a little guy like Joaquin because it can dehydrate the kidney. We could tell it was a little on the dry side since he creatinine and BUN were both up, but he maintained a good appetite. I was a little worried for a minute that we might have to hospitalize him but we were able to get lots of fluids into him.

Other than that he's been doing fabulous. He's growing like a little weed and eating like a large horse. He's singing his ABC's well and can count into the teens. He's doing well identifying his colors and animals. Little brother Sage is becoming more fun to play with as he's more interactive. We have to still remind Joaquin to be gentle with little brother. I try to warn Joaquin that little brother isn't always going to be "little" and that he better be nice to him.

If you have any questions about the benefit, we can be reached at: kidneybeanboy@gmail.com or you can call one of us.

Bugs and Blood

2008-03-05T15:24:00.000-08:00

We all recently fell victim to the flu in the last month. First the boys were a little sick, no fevers and then I got sick and the next week was Chris. I thought we had all made it through but then both Joaquin and Sage got sick again. Sage sailed through it fine, minus the copious amounts of snot and a bit of a cough. I was never concerned about him as he is still exclusively breastfeeding and should be mostly protected against nasty bugs.

Joaquin did get a fever. Chris woke me up just before he left for work and asked me to feel Joaquin's head. At first he felt a little warm but as I began to wake up more I felt that he was actually quite hot. I took a temperature on him and it was 102.6! Wow. He was actually awake during this and he was chatting with me and asked him how he felt. He said, "fine." I told him that he had a fever and when he has fevers we usually need to take him to the emergency room and asked him if he thought he should go see the doctors and he said no. I kept remembering the conversation that I had with the doctor at Stanford during the last fever and so I put an after-hours call into our pediatrician and meanwhile gave him a dose of Tylenol. The fever immediately responded to the Tylenol (which is a good sign - when he had pneumonia the last time it did not respond to the medicine) and when the doctor called back he said that I was doing everything right and to keep an eye on him for the next couple days.

Joaquin did pretty good, he held onto that fever for about three or four days and finally on the fourth or fifth day I decided to make an appointment with his pediatrician because I had read in my Dr. Sears book that a fever lasting longer than 72 hours in a toddler should be examined by a doctor. The morning I took him in he was complaining of a back ache. What could that mean? It kind of scared me because I was thinking - what if it was a urinary track infection? We had to wait a long time to see the doctor (about an hour) and I just stood outside the germy office and held Joaquin the whole time. Joaquin wasn't totally lethargic; he was still talking with me and joking a little bit but he kept complaining of a back ache. Finally we got into the office and our ped came in quickly - within five minutes probably. He did the three things that I wanted him to: 1) listen to his lungs. 2) check his ears, 3) check his urine. All three things came up fine, no infections. Yay! There's nothing they could give him, it was just a virus that had to run it's course. The doctor agreed with me that we would only give him Tylenol when he was obviously in pain. Since fevers are not an illness, just a normal, healthy response to the body fighting an illness I feel it's just best to let them do their work.

I gave him a dose of Tylenol after we left the doctor's office because he said his back hurt and that seemed to help him out. That was the last dose that I had to end up giving him because by that night his fever was gone and he was nice and cool from that night on. I was getting freaked out on the way to the doctor's office that he was so warm but he was still talking with me. The last couple times he's had a bad fever and we've taken him to the ER he was really listless and lethargic. So that was a good sign. I spoke with his nurse the other day and she was saying when it comes to the fever, just treat it symptomatically and to make sure he's hydrated because dehydration is the main concern with it comes to sickness and fevers. He just had labs done Monday for his monthly labs and his creatinine and BUN are both perfect.

Speaking of labs. We have been blessed to fine an amazing phlebotomist. His name is Bucky and he is amazing. He's very calm and very good. It has made our whole blood draw experience much less stressful on all of us. Before we would have to wait so long to get in and now it's no more than 10 minutes usually. Also, Bucky always gets it. There have been a couple times that he's had to poke a second time but usually it's on the first poke. Joaquin doesn't scream or get upset anymore because he knows it's not going to be as painful. We were just at this point were none of the best phlebotomists at the outpatient labs could get any blood. We were having to leave and go long periods before getting blood. And it was so stressful. The lab we go to now is in the hospital, Renown. We feel so thankful that we found Bucky.

We are leaving Friday to go to Arizona once again. We did this last year around this time. Chris's parents have a timeshare in Flagstaff so that's where we will be staying. I'll hopefully have lots of good pictures to share once we get back. Take care! And thanks for reading.

Long Time No See!

2008-02-15T11:23:00.000-08:00

I know, I know, it's been a while since I last posted. I swear, I have the best intentions to do so and then something else comes up.

Things are here have been good. I prayed and prayed that we would get through Christmas and New Years without any colds and my prayers were answered... for the most part. Joaquin started up with a little cough on New Year's Eve and after dropped him off at his favorite place on earth - Grandma's house - every time my phone rang I was worried it would be a call that Joaquin had a fever. Luckily he made it through that cold without any fevers.

Last year we didn't have any colds and his immune system was weaker than it is now and this year we've had about 4 so far and supposedly his immune system in "tough" (in the words of one of the doctors down at the hospital that I recently talked with). While we were out of town last weekend we left Joaquin with Grandma and Grandpa only to receieve a call one or two days into the trip that Joaquin was running a fever. We were about 5 hours away - talk about feeling helpless. So they had to take him down to the ER just to get it checked out. My Mom was saying that he did *not* want to be there and was real quiet the whole time they were there (5 hours!). What I learned from the last fever was that - go figure - water helps to bring it down. So I told her to have him start drinking lots of water, which wasn't hard because he was already asking for water. They gave him a little Tylenol while he was there and that helped to bring the fever down. And there was no hospitalization required from this visit, thankfully.

While we were out of town and dealing with Joaquin having to be in the emergency room, I was talking with a doctor in Palo Alto and he was saying that at this point, since he's so far out of transplant they're not as concerned about fevers as they were in the beginning. That's was news to me. We were so ingrained to the idea that a fever was bad news for Joaquin because of his compromised immune system but apparently his immune system is "tough" - in the words of the doctor. We were not aware that his immune system would ever be considered tough - we've always thought that since he was on immunosuppresants that his immune system was really weak. We still need to take fevers seriously with him, but it's not as serious as it was in the beginning. The doctor was saying that maybe if he had just gone through a bought of rejection in the back 2 months that would be the case but he hasn't had any problems since transplant *knock on wood.* He said that after a bought of rejection they have to give such a high dosage of steroids that it puts the patient back in the same likeness of someone freshly transplanted.

Other than the occasional bought with pneumonia, he's had a couple fevers. It seems like Joaquin is your typical toddler catching every bug and germ that comes within a five mile radius of him. We don't see much of our little (read: toddler) friends because everyone seems to be sick all the time. We get a bit of cabin fever, but luckily Joaquin also has adult friends who aren't sick as much.

We've also been dealing with Prograf woes. His Prograf has been running consistantly low since probably October which means raise the dosage, do a blood draw in two days, see levels are low, raise the dosage, do a blood draw in two days, etc., etc., etc. Finally, the last time we took him we got a dose that was in his range. We think that he's just metabolizing the Prograf differently because he's growing so fast. We saw the doctors in October and then when we went back down again for kidney clinic in January he had already grown 3 -4 centimeters. I can see the growth - shirts that were too big are fitting nicely now. Pants that were too long fit. It's so awesome to see that the kidney is doing him good. He also eats like a little horse. Sometime when we go out to eat, he can eat more than me! It seems like he's constantly snacking throughout the day - which I suppose toddlers are prone to do.

Joaquin is still wearing the ng tube. We are probably looking at another year with it. He needs to be able to drink 1.3 liters and right now he's average about 300-400 mL per day. Some days he has good days where he drink half or a little more than half of his daily requirement and then there are days when he just his 300 mL. Progress. He's very sensitive about his ng and if he notices that it's coming loose he'll let me know right away. For as much as we loathe it, it's a part of him and has always been. He doesn't know otherwise. Soon he will.

Joaquin is a great big brother and Sage adores his big brother. My Mom says that he's the most un-jealous big brother she's ever seen. He's never rough or mean towards Sage. He's very kind and loving and gently with him and Sage lights up whenever big brother comes around. Having Sage is such a different experience than Joaquin. Sage is much fussier than Joaquin - for all the Joaquin went through he really was a great baby. Very mellow and easy going. There are times when I'm picking Sage up and taking him to another room late at night or we're running a late night errand and I'll think, I never could have done this with Joaquin cause he would have been on dialysis. And dialysis seems like such a distant memory.

I've included some pictures to share.

Joaquin's first time sledding - he didn't know what to think of it!

Happy Thanksgiving!

2007-11-24T14:34:00.000-08:00

We had another stay in the hospital after the last one in the beginning of October. It was pneumonia again but this time it was not the crazy, scary even it was last time. Joaquin started up with a cough on Tuesday night so I decided to just make an appointment right away with his pediatrician. The doctor said that he was wheezing a little bit so he prescribed Albuteral (I don't know if I spelled that right or not). He told us to do a treatment every 6 hours and call him if it wasn't better in a week. By Sunday he was getting tired and sleeping and when we felt his head in the evening time he was warm. After getting a thermometer reading of 101.7 degrees we called his doctors in Palo Alto and they said to take him to an urgent care or emergency room. We decided to just take him down to the hospital he was at before and an x-ray showed a shadowy area in the right upper lung. They assumed it was pneumonia and began treating it. His fever kept getting higher and higher and he was sleeping while we were in the emergency room. They were thinking that we would just get some antibiotics and we would go home but his fever was going higher and he was seeming to get worse. His oxygen saturation also wasn't that great. So they admitted him.

We ended up staying in the hospital for about two days. He got better quickly and we were discharged and told that we needed to do a follow up appointment with our pediatrician. When we saw the pediatrician he said he sounded good but was thinking that since he had pneumonia again so quickly and that it was located in his upper right lung that he might be asperating - possibly from his stomach. So he recommended us to see a pulmonary specialist. It's no rush or anything but he would like to figure out if it's a problem or not before it might become a problem.

So otherwise he's doing good. We celebrated Thanksgiving with family and friends and it was very nice. Joaquin is loving being a big brother. Sage is growing and starting to smile. He's not so serious anymore. We're hoping that Joaquin will be able to have his ng tube out in about six months. On good days he's drinking a little over half was what his daily water requirement is (which is 1.3 liters).

We also wanted to share some pictures!

Modeling some pants that Mama made out of one of Dad's old shirts:

Doing a breathing treatment (he didn't like doing it - had to sit still too long.)

Grandpa's Birthday! (November 21st)

Going Home

2007-10-24T16:22:00.000-07:00

Tomorrow after Joaquin's last antibiotic shot we are going home! We are scheduled for the shot at 3 p.m. at the day hospital, but when we were there today I asked if we could come in a couple hours early so that we could get on the road faster. They were fine with that. It will be another big day for Joaquin, he will have a blood draw in the morning, clinic afterwards, and then his shot, but we will be going home after that.

He's been doing very good and is fully recovered, I would say. He's been tolerating his shots very well although I think sometimes that anticipation of the shot is worse than the actual shot. Today he barely cried. There are dogs that come to the day hospital Monday through Thursday that are really helpful in Joaquin getting past the pain afterward. He likes playing with them and of course the million toys in there too.

Sad news on the camera. It's lost. We lost it in Santa Cruz last Friday and were hoping that our friend who lives there and was out of town until today had it in her back pack. No luck, so no pictures from this whole experience. I'm really bummed. We'll figure out something.

I'll update more later.

Hopeful

2007-10-20T10:50:00.000-07:00

Tomorrow my parents are driving down here and Chris is leaving to go back to work. They will be bringing the equipment along so that I can upload photos to the blog. I really like having the pictures accompanying the entry, but oh well.

We were discharged from the hospital on Wednesday night. We pretty much knew Tuesday night that Thursday would be the day, but our experience from previous hospitalizations let us know that it wouldn't probably happen until later in the day since everything moves slow as molasses around there. So we physically left the hospital at around 6 p.m. Joaquin was very excited about leaving, he had been asking about going home for a while but we had told him that we weren't going home and that we were going to the Ronald McDonald House. There's lots of fun stuff to do around here so he's not to upset about not being at home.

We decided to do the shots, versus the PICC line. The shots, while not pleasant, are do-able and much less invasive then the whole PICC line experience. When Chris took him to the day hospital, the nurses were asking why we didn't do the PICC line. We just can't believe how basic and simple they make it sound. Sure, lets put him under and surgically place a PICC line! Easy! No big deal! I digress.

On Thursday before we left, Dr. Weintraub came in and talked with us for over and hour. I was so appreciative of that. We got to sit and pick her brain and ask her questions and just talk in general about kidney transplant. It's what we sorely needed. Both the doctors and we feel like communication lines were in desperate need of attention and mending. There were many assumptions made about Joaquin's care on both ends. We've finally cleared most of them up and I'll discuss in another thread exactly hat I mean and what happened. I think we may have had a very scary, dismal outlook on what transplant is but after talking with her, I feel much more hopeful about Joaquin's kidney's future.

We now understand that we can expect his kidney to (hopefully, if all continues to go well) last for 20+ years. She was saying that he's in this era of transplant where in a sense kidney transplant is pretty common, whereas the previous generations were steroid based and before that a very radical, extreme measure. Basically a last ditch effort at saving someone's life and that in the 1960's and 1970's people's whole immune systems were irradiated and that once their immune systems recovered they had a 50% chance of losing the kidney. She was saying that by the time that Joaquin's kidney's life expectancy is up, they might be able to take a little of his blood and grow him a new kidney where he wouldn't have to take anti-rejection medicines and we wouldn't have to be fearful of losing his kidney to rejection.

The fact that Joaquin had a transplant so young is actually an advantage to him. They statistically see that children under 5 have very low chances of kidney rejection. They aren't quite sure, but feel that somehow and young child's immune system hasn't, in a sense, fully realized what belongs to their body and what doesn't. Whereas a person who is 50 and their body has fully realized what belongs in the body and what doesn't. He's also got the advantage of receiving not only a living kidney, but a relative and his mother's kidney.

We are always so scared of him losing his kidney. When I go to the emergency room after Chris had taken him in, I had brought along his transplant manual that we are supposed to bring everywhere. I rushed in and started talking about his kidney and the doctor stopped me and basically said that while they were aware of the fact that he had a kidney transplant, it was secondary if not tertiary to the fact that he was having seizures. He had to actually explain this to me a few times before I understood that we were not dealing with just his kidney and that his kidney was not the cause of this nor would it necessarily be affected by this. I understood this finally and said to the doctor that I was sorry, but that our whole world was his kidney. He understood me. I calmed down.

So yesterday we went to Santa Cruz and visited the ocean for the first time since June when Joaquin and I made the trip out there with our cousins Brenda and Gina. It's always such a healing experience. It was Sage's first trip to the ocean.

Tomorrow we look forward to going to the farmer's markets around town and they are having "Art from the Heart" here at the Ronald McDonald House, which I am really looking forward to. We will be painting.

So with the next post and update, expect pictures! Thank you for reading and listening and for all your love and support.

Closer to Home

2007-10-16T11:28:00.000-07:00

No picture to accompany this blog today, sorry. I have been taking lots of them but don't have the means to upload photos, didn't think we'd be here for this long. But I promise lots of cute ones when I got home or if my parents bring them down here for me.

Joaquin continues to improve, in fact, I would say that he's 98% better. The only reason that we are here in the hospital still is because he needs to have his antibiotics and they need to be given one of three ways: 1) through the IV, 2) through a PICC line or 3) by a shot. Right now they are giving him them through an IV. We've already had to replace the IV one time since we've been here but the nurses and doctors are all well aware that he is a hard stick so they call in the big guns to place the IVs. And Joaquin is very cooperative through them.

They wanted to keep him in the hospital until they finished weaning him off of the anti-seizure medicines, which they did yesterday. Now, it's a matter of figuring out how we want to administer the antibiotics. They really want us to have a PICC placed, but we are not comfortable with putting him under anesthesia to do so. The other option beside staying in the hospital so they can be given through an IV is to give him two shots once a day. Apparently the only reason that the doctors are not so keen on giving the shots are because the nurses consider them to be, for lack of a better word the doctors says, inhumane. Or cruel. Now, I can see how a person would see this but I guess I would say that I view putting my child under anesthesia, for which he has proven that he does not tolerate well, cruel.

I remember vividly the last time we put him under, the nurse was joking with me about how he was feeling good since he had this far off, dazed, glazed over look in his eyes just before he passed out. Yeah, that's really funny. It actually broke my heart.

So today we will figure out what exactly we want to do as far as administering the drugs. We will have to stay down here for the duration of the antibiotic treatment, but we will stay at the Ronald McDonald House, our home away from home. When packing to come down here I really didn't figure that we'd be here for so long. It'll be two weeks by the time we come home.

On the upside of things, the doctors are very pleased with Joaquin. He's weighing in at a little over 28 pounds and he's 33 inches tall. The last time that anyone here saw him was in February and he's really made the leap from being a baby to a little boy. He's eating well, drinking well.

He hasn't had his ng tube in since last Wednesday. They took it out in the ER at St. Mary's in Reno and haven't put it back yet. They've decided that instead of giving him 2 liters of fluid, they will only be giving him 1.3 liters. They figure that he will have the ng out in about 6 months! He's been drinking around 6oo mL every day, which is about half of what he now needs. So what we'll be doing is not giving him anything by ng during the day now and give him what ever he didn't drink during the day over night. While in the hospital, they have been giving him the rest of the liquids he needs by IV, so it's been nice. This is the first time he hasn't worn an ng for his whole life. Sad, but exciting! They figure that a reason why he had the seizures was because he was getting too much water and one of the doctors was saying that after the first year of having a kidney so hydrated that the chances of the kidney doing good, research shows, is very good. Joaquin's so used to having the ng in that he doesn't' really mind it anymore. We've been talking to him about how he needs to drink more water or liquids so that he can have it out, but he doesn't really grasp that yet. I think he will very soon though.

So that's a little bit of an update. The doctors think he should be discharged by tomorrow. Thank you for all the prayers and good vibes and love. Thank you.

Trouble

2007-10-14T20:29:00.001-07:00

On Wednesday night Joaquin we took Joaquin to the emergency room. He was having seizures and he had a very high temperature. They found that his seizures were caused by a high temp and/or low sodium. He also had strep pneumonia and an ear infection and possibly a blood infection.

On Thursday night Joaquin and Chris flew down to Lucile Packard Children's Hospital so the doctors could keep a close eye on him and protect his kidney (which is just fine). He is being treated with antiobiotics and is feeling very well right now.

It was scary and rocky for a while there but he pulled through. He's a tough cookie.

If you haven't already heard about it, now you know. I will try and update and explain things more in detail once I get a better opportunity.

For those of you who sent and are sending your love and prayers, THANK YOU! They are once again one of the major healing elements working on him right now. Thank you, from the bottom of our hearts.

Big Brother

2007-09-28T23:51:00.000-07:00

We welcomed the newest addition to our family on August 30th, 2007 at 9:33 p.m. in our home. His name is Sage Francisco Canyon and he is healthy and happy.

So now Joaquin is a big brother! I always wondered how he would react to having someone new around to take some of the attention away from him, but he's been taking it all really well. He's very loving with the baby, always wanting to hold Sage or give him hugs and kisses. We have to remind him sometimes that he needs to be giving gentle kisses because he just gets so overly lovey. I am definetly feeling a little overwhelmed by having another little one that needs me, but I am so happy for Joaquin and Sage that they have each other. Being an only child, I always wished that I could have had a sibling (but I'm sure my parents are very happy with just the one child - I was a little colicky... and sassy). Sometimes I just can't believe that we have two boys now.

Joaquin is doing very well. He is stringing together words and thoughts to make sentences now. He very good at naming different animals and can sing his ABC's with a little help. Sometimes when he's misbehaving I'll start giving him the count down that means he needs to get to doing what I've asked of him and he'll start counting down with me. It's so hard not to laugh in those situations but I've come to realize as a parent that while consistency is key, you've got to pick and choose your battles.

Joaquin is an avid book reader. He's always bringing a book around for us to read to him. He's also a big fan of the bath tub after he realized how fun it was to play in water this summer. We would go over to our friends' house and play in their little kiddie pool and let the boys play in the water in their birthday suits. He loves it.

We are in the process trying to set up an appointment to go down and see the doctors in Palo Alto. They want to do a biopsy - it's been a year since the transplant and by now most patients would have had three. We just do not feel comfortable going through with it and we feel our reasons are valid. I really don't want to seem like we are being uncooperative, but we've also been very compliant as far as appointments, blood draws, etc. We want to protect Joaquin and do what is best for him.

I do want to go down and see the doctors if not for anything, but just to show him off. They haven't seen him since February and I feel he's made the leap from baby to boy. I also have lots of questions for them like: how do we potty learn a kid who drinks 2 liters of fluid in a day? He is peeing and pooping in the toilet, but he also pees a lot at night. How do we wean him off the tube? When the doctor called last time to try and talk us into the biopsy she was saying that we need to get him drinking more during the day and he is doing better with that. He's drinking anywhere from 200-500 mL a day, which is good! I think once we get him drinking the majority of his 2 liters during the day, he'll pee less at night. I figure it will all work itself out.

Good news for us and my parents! They are actually doing it and making the move sometime in the next two weeks! We are all excited. I was always sad that my parents weren't here to watch Joaquin grow up. Now it looks like they will be here afterall.

1 Year Anniversary!

2007-08-28T16:35:00.000-07:00

Today marks Joaquin's 1 year post-transplant anniversary! The year has gone fast and Joaquin has changed so much. We do consider today to be Joaquin's 2nd birth day because it was a start of a new life. Thank you so much for all your love, support and prayers over the year - words cannot express how appreciative we are for it. Blessings.

Joaquin's Summer

2007-08-22T23:24:00.000-07:00

So much has happened since I updated the blog last. My computer tends to heat up too fast so by the time I actually get around to typing something up it overheats. Excuses, excuses, I know.

Joaquin had a great summer! We started it out by celebrating his 2nd birthday at Idlewild Park with all of his friends on June 15th. He had a great time running around the park with Grandpa Johnsen chasing him (and Grandpa loved it too!) One of his favorite presents was a little car that he can get in and push around. It was similar to the one that he played in at the Ronald McDonald House - it's called a Cozy Coupe. Lately he'll get in it and say, "Bye Mom! Leaving." And when I ask him where he's going it's either Oregon, Lauren's Store, or Trader Joe's.

I've been working for a friend who recently opened a store in Sparks called Prism Magic Clothing and Imports. It's a nice part time job where I can bring Joaquin with - her name is Lauren and that's where he says he's going sometimes when he gets in his Cozy Coupe. He's a very well-behaved little guy when we are working. We have lots of toys for him to play with but he's a little social butterfly so he's usually talking with customers if he's not playing with his toys.

Joaquin's vocabulary is coming along nicely. He's putting together his words to make small two and three word sentences. One of his current favorite things to say is, "What are you doing?" He'll ask me that many, many, many times a day. He's also getting better at remembering things - like where he's put something. We can ask him and he'll go and find what we're asking for or show us. He also remembers watching monster trucks at his friend Aaron's house -so he'll ask to watch it whenever we go over there. Our midwife has a little motorcycle that he loves to play with when we go for prenatals and so whenever we talk about Diane, he'll talk about the motorcycle he plays with there. She says she's flattered by that.

Joaquin's Grandma and Grandpa Johnsen have been out to visit twice this summer and always enjoys their visits. They are planning on moving out here in the very near future - which will be so nice for everyone.

We also attended two festivals this summer. Our first one was at the beginning of July out in Quincy, California called High Sierra Music Festival. It was four days and nights of camping and music and Joaquin had so much fun. I've never seen him get so dirty but he loved every minute of it. He really enjoys camping (we've gone camping a handful of times too). He made lots of friends while he was there.

The second festival was up outside of Portland, Oregon. It was at this little fishing resort called "Horning's Hideout." It was also about 4 days and 5 nights of camping and music. There was lots for kids to be doing. I took it easy for most of the time so Joaquin and Chris and some friends hiked around the fairgrounds doing different things.

It's been a good summer but now we're slowing down and getting ready for our newest arrival to make his or her appearance. We are expecting his/her arrival sometime in the beginning to middle of September. Joaquin likes to talk to my belly and tell the baby he loves him/her. But I'm not sure how much he comprehends the idea of a baby. Sometimes I think that he thinks the baby is my belly.

Joaquin's kidney has been doing very well. He's creatinine and BUN are both holding steady and we've only had a few issues with Prograf but all in all there haven't been too many blood draws. We are coming up on his year anniversary of transplant on August 28th. I can't believe how fast the time has gone. We always knew that he'd be doing good but we never knew how good he'd be doing. He's incredibly active and has a huge appetite for both food and life. He loves to meet people and read books and play with trucks and cars. We're pretty sure that we are not going to do the year biopsy because there really hasn't been any reason to think that his kidney isn't doing fabulous.

I will try and keep up with the blog. Thank you for checking in on us. We're doing great! Here are some pictures we wanted to share.

Grandma and Joaquin at Lake Tahoe

Joaquin playing around at Lauren's store.

Joaquin and Grandma at his birthday party!

Getting dirty and lovin it at Horning's Hideout.

Chris and Joaquin

Washing the Cozy Coupe.

Smooth Sailing

2007-05-28T23:40:00.000-07:00

My friend mentioned the other day that he checks the blog every now and then and doesn't see updates anymore. I told him that since everything was going so smoothly I felt I didn't have as much to write about. He reminded me that I didn't need to just write about the transplant-related drama or unpleasant things we were going through, but that maybe ya'll would just like to hear that things are going really good and some pictures to go with it.

So, things are going really good with all of us! We were having issues with his Prograf levels going up and then going down until *finally* it leveled out. And it's been leveled out for about 4-5 blood draws - which means of course that we haven't been going multiple times a week. Woohoo! And it was about time because his little veins were pretty shot. Hopefully it will stay level for a while and we don't have to go through that again.

Joaquin is an amazing person and every day I feel so blessed to have him in my life. Sometimes I can't believe how well he communicates or how well he comprehends what we tell him. He's getting better at putting words together to form sentences. He likes to tease me and call of the our cars "Dad car." We'll go back and forth, him saying "Dad car" and me saying "Mom car." He's also getting good at naming animals and what they say. When we go over to our friend Mitch's apartment he says, "Mitch's house" and he can recognize certain friends' cars.

He still very into sports, especially basketball. Sometimes he'll tell us that he wants to watch "teebee" and when asked what he wants to watch, he says "baketball." He likes to throw balls and has a pretty good arm for an almost 2 year old. He points out "big trucks" and accompanies that with a "vroom vroom." He also loves to read books. He's been known to stradle one of our bongo drums, pound on it and then stop to sing a little. We'll even catch him singing to himself sometimes. So cute!

I'm happy to say that he is not a picky eater, thankfully. And I'm hoping that it stays that way because as it is, he'll try anything and only really doesn't like spicy foods. Since the summer season has brought more fruits, he has become quite the fruit eater - he likes watermelon, mango, and especially strawberries. He also likes bananas and apples. He's a big avocado and tomato fan and still loves bread. We haven't been eating a whole lot of chocolate around the house lately, but that doesn't mean he isn't constantly asking for it. He is still a big pizza fan as well. A special treat every now and then is string cheese, he loves cheese of any kind. We love that he is such a snacker, he's always munching on something.

Something new he has gotten to experience is camping. We couldn't go camping last year because he was on dialysis so we are going to make up for it. We went for the first time on Friday up in between Reno and Truckee with some people from Chris's work. He had a great time, but always has a good time wherever he goes. We've also been hanging out at the beach at Tahoe. He's been having a great time playing in the sand.

So we're finally feeling like we are getting to experience the things that most families take for granted. We plan on going to a handful of festivals this summer and we know that he's going to have a great time. He's such a social butterfly, not shy at all to go up to people he doesn't know well or has just met and befriending them right away. People always seem to be impressed to find out that he's not yet two years old. He is a very smart little boy. We are planning to have a birthday party for him either Saturday June 16th or Sunday June 17th at Idlewild Park and if would love if you were able to make it! The more the merrier!

Relatively Normal

2007-04-14T00:39:00.000-07:00

It's been a while since I've updated. Nothing transplanted related has really been happening besides us refusing the 6 month biopsy. It passed without anyone saying anything. During one phone call conversation with Amy, the transplant nurse coordinator, she asked if it was true that we had rejected the biopsy - no judgements or anything - and I replied yes. A few weeks later Joaquin Prograf late had been consistently running on the high side - which can lead to kidney toxicity. That's the catch with the anti-rejection meds. We're not sure why his levels were running high - they kept asking us if we were feeding him something with grapefruit in it because apparently grapefruit is the only food that affects the medicine. I'm pretty diligent about checking for grapefruit in anything, but you never know. Nothing we could think of had grapefruit that would be causing it to run high. Another thing we found out in talking with Dr. Weintraub is that it could just be the rate at which he's growing. His body could be metabolizing the medicine differently now.

After about the 7th or 8th time of getting a higher than we're comfortable with Prograf level back we took it into our own hands to try and lower his Prograf. Around this time Amy called to try and push the biopsy on us. When she was talking to me about doing it I started crying. Things have been so peaceful around here - we've actually got to pretend that things are normal for a while for once. It upset me so much to think of taking him down there and having to put him under anesthesia. Not to mention that he's always that 1% of things going wrong. Amy said she's never seen any bad come from biopsies but in the same sentence she said how it always seemed like anything that could go wrong with a procedure seemed to happen to Joaquin. That really makes me feel good Amy, thanks.

We called and talked to Dr. Weintraub that weekend about it because we really felt as though we didn't have enough information to make a big decision like that. Part of me just wanted to go ahead and do it to get a piece of mind but the other part thought about that small risk that the kidney could become infected or other things. Dr. Weintraub said that in about 10% of biopsies they find rejection. But there is no conclusive evidence that catching early rejection will prevent rejection in the long run. Apparently there are two studies out of Canada about catching early rejection and one said that catching it early could prevent chronic rejection and the other one said catching it early could not prevent chronic rejection. At Stanford they are amongst the first to go the steroid-free route with kidney transplant so they like to see how that prevents rejection in the long run. Basically, the biopsy is a surveillance thing. So we haven't decided either way. We were going to wait for the next Prograf level to come back to help with our decision and when it came back a little on the low side - well, I guess it made up our minds for the moment. But I can't help but feeling some sort of "tone" with Amy whenever I speak to her. It's like disappointment or something.

Otherwise, things are going very well with all of us. In the middle of March we took a family trip to Las Vegas where we met up with Chris's parents and then drove over to Flagstaff, Arizona where they had a timeshare. Chris's sister and nephew, Dawn and Aiden, joined us as well. We had so much fun exploring the area. It was yet another time when I felt thankful for not being on dialysis. I should have pictures to view (like over 150) here soon.

Big news around here is that Joaquin is peeing on the toilet! We've been talking about it with him for a while now asking him when he's going to start going to the bathroom on the toilet like mama and daddy. Finally one day it all worked out and here are the first pictures from it:

He's so proud of himself. Now we're working on getting him to go poo on the toilet too. It all works out well because I don't want to be changing two sets of diapers. Oh, did you hear the news? We are expecting a little brother or sister for Joaquin in September! We're excited. I think Joaquin and the baby will be a nice age difference apart. He says hi to the baby and gives my belly kisses.

Joaquin's been really good at responding to our questions with yes or no answers. I really like how communication is improving between us. I've been volunteering at the local food co-op and Joaquin comes with me. He really enjoys meeting new people and making friends. There's been a couple times when he's been so sad that his new friends are leaving that he'll cry. Recently a woman came in who had been there before and before she left she said, "You know, I've been thinking about your son all week. The last time I was here you told him to wait a minute while you helped me, and he listened!" She thought it was so amazing how well he listened and the way we communicated. Sometimes I'm so amazed at what he knows and what he picks up. He's been making some small two word sentences like, "My ball," or "Daddy's car." He's obsessed with basketball right now and pretty much talks about it all the time. He runs around saying, "baketball" all the time. He likes to shoot hoops either through his little hoop or through a set of arms.

Other favorite foods include: pizza, tomatoes ("matoes"), chocolate ("cocky"), avocado ("cwado"). Actually he's not very picky. We've been making lots of stir fries and he'll eat a bowl full right along with us. I'm really loving that he's into avocados again since I'm also into avocados. We'll sit and eat a salted avocado or two.... or three.

Anyway, I promise to make an effort keep this updated more. Things are going so good with us right now. Things feel relatively normal.

In Arizona at Indian ruins.

On the way to Sedona from Flagstaff via Oak Creek Canyon.

More Pictures

2007-03-01T23:08:00.000-08:00

I wanted to share a few more pictures. Please check the post below for an update!

Growing Up

2007-03-01T21:32:00.000-08:00

February 28th was our 6 month post-transplant anniversary! I was just looking at pictures of him when he was a little guy and it's amazing to see how much he has grown in the last (almost) 2 years. His big 2 birthday is coming up in June and sometimes I'll look at him and the skills that he's mastering and find myself awed by the fact that someone whose less than two years old is doing or saying something like that. I'm like, "wait, he's not even 2 yet!"

The 6 month anniversary also marked the time for his routine, scheduled biopsy. If you remember, we declined the 3 month biopsy, although the doctors were right there with us in agreement that we would not do it. The six month was more unclear because at our last appointment they were waiting for some donor antibody blood work to come back to see if the 6 month biopsy was necessary. Now, I'm not exactly clear on what it meant, so I can't go into detail but we never heard from them and still haven't heard from them on the results of that. Anyway, we started receiving calls from anesthesia and PACU talking in preparation for the 6 month biopsy. We had already firmly made our decision that we were not going to do it. Come Monday we received a call from the clinic asking us where we were because he had a pre-biopsy clinic appointment scheduled for 11 am. Well, we were still in Reno, so I didn't see us making that one. In addition, the weather probably would not have permitted us to safely make it over the mountain pass. The I-80 had been closed for a day or two starting Sunday, the day we would have traveled. I took it at a sign and confirmation of our decision to fore go the biopsy. Once I received the call from the nurses about the appointment that we missed, I called Chris who called them and explained that we never received the results back from the blood work-up and that we were not going to do the biopsy anyway. The nurse said, "Alright. I'll look up the blood work then." And left it at that. I guess I'm always anticipating a confrontation from them, but at the same time, they are well aware of our feelings of the biopsies. If we had reason to believe that perhaps Joaquin and his new kidney were not getting along, then it might be a different story. As it stands, the risks outweigh the benefits of the biopsy, we've decided and our family is in agreement with us as well.

So Tuesday, the 28th, I was getting Joaquin changed and dress and ready for his day and I couldn't help but reflect on how today could have been a very different, stress-filled day had we decided to go through with the biopsy. I am thankful for his health and thankful that we did not need to do it. It's hard to believe that it's been 6 months since transplant. Honestly, it's felt much longer than that to me. I was looking back on his baby pictures and it feels like so long ago. To think that Joaquin has only been with us for 20 months...

Currently, Joaquin is obsessed with keys. When we are leaving the house to go to the car he says "keeees, keeees!" and wants to hold the keys and help me open the car door. He wants to hold them in the car and get upset with me when I take them from him and explain that I need them to drive the car. He runs around the house with the keys trying to unlock doors by standing on his tip toes.

He also likes trucks and cars and always points them out. A while back Chris and some friends took him to a monster truck rally and now whenever he sees a commercial for one he gets all excited and yells, "tuck!" and claps his hands and says, "vrooom."

He still loves balls of all different sizes. He's got a rather good pitching arm and he's fine tuning his kicking skills as well. He likes basketball, football, and baseball and whenever he sees the sports either on tv or in real life he says, "b-ball!" while throwing up his arms.

Currently, his favorite foods are chocolate chips, goldfish, anything with tomatoes - fresh, raw tomatoes, pizza, pasta... you name it. He's also a fan of cheese and specifically Havarti Dill Cheese. He also likes crackers. I try to get him to eat more raw, fresh fruits and veggies but unfortunately he's developed an opinion and he's become a little picky. Hopefully we'll work through that by not always having his favorite foods available so that he will have to eat other things or at least give them a try.

He really amazes me how much he's growing and how quickly he's learning and absorbing new things. While he still communicates with some sign language, he's getting better at naming items in his world too. During the day many times he'll stop what he's doing and say, "Daddy?" And I'll tell him that Dad's at work and he'll say, "Oh," and smile. When I'm gone he asks where I am too. If one of us leaves he becomes rather sad and it hurts my heart to hear him crying once I've closed the door, but what can you do? From my experience it only lasts a few seconds and then he's off on the next big adventure.

(Notice the mismatched socks - I can never keep track of a pair!)

Long Time

2007-02-08T10:36:00.001-08:00

Yet again it's been a while since I've posted. A friend emailed recently and said how she missed the updates but figured that no new is good news and that is definitely the truth.

We had our last xenopax infusion on Monday, February 8th. No more IV's unless something comes up where he would require one, but that doesn't seem likely. We also did our first blood draw in a month; that's right - no pokes for a month. But it was only because of a miscommunication between the doctors and us. I guess we were supposed to recheck his Cellcept levels in two weeks but it was never clearly stated and we just went with it because we really felt he needed the break. At some point Chris and I questioned why they would let us go that long without blood draws and decided that in the future, until we are farther out, we would do one every two weeks.

So I was nervous as usual because clinic appointments always make me nervous and we hadn't had blood work done in a month. But Joaquin was thriving, eating well and seeming like a happy little toddler. But, a few days before we went down he started exhibiting some signs that something was brewing along the lines of a cold. He had a clear runny nose and dark circles under his eyes and a sore bum. When I looked up the dark circles under the eyes, the search led me to possible food allergies. So we were thinking maybe it was a food allergy. He had diarrhea as well.

The xenopax went off well and the lab results returned saying that his creatinine and BUN were great. But, his liver number were elevated - which could mean a few things: namely a cold or an inflamed liver due to the meds he is taking. It made sense that he would have these elevated number since he seemed to have a cold or something but they wanted to do an ultrasound of his liver and kidney "just to play it safe." I felt it was unnecessary, but it was done anyway. Long story short, his kidney and liver looked fabulous.

So we return home from Palo Alto on Monday night late because they wanted to give him some fluids intravenously since he had an IV in already and he seemed a little dry. Then they wanted to do the ultrasound - which wasn't scheduled until 3 pm. We didn't end up getting the ultrasound until around 4 pm.

The next day he's beginning to feel a little warm. I check his temperature and it's 99.1, which doesn't concern me since he's got two teeth coming in (the last two!). A few weeks back Joaquin had a gnarly looking rash around his diaper area and so I called his pediatrician's office and found out that he was not there anymore. Through the grapevine I found his new number and office location and decided to call to make sure that we could continue seeing him since I really like him and he knows Joaquin. Fortunately we could still see Dr. Shaji and at the end of the conversation with the receptionist she asked if I would like to schedule an appointment and I decided that it would be a good idea since he had a cold and I wanted to ask some questions about possible allergies.

Well, I'm thankful I made the appointment. On Wednesday morning he still had a little fever and he was getting progressively warmer. He was also very lethargic and I could just tell something was wrong. So we went to see Dr. Shaji. The nurse took his vitals and his temperature was 102.6! This was very alarming for me since the last time had a temp like that he had the UTI. I wasn't really worried that it was related to his kidney or anything since he had symptoms like a runny nose, gunky eyes, cough, and diarrhea - plus all his lab number looked wonderful.

I sat in the room for an excruciating amount of time waiting to see Dr. Shaji. I was holding Joaquin, who was like a rag doll and practically sleeping in my arms, which is very uncharacteristic for him. I was preparing myself to have Joaquin hospitalized - telling myself that just a few days wouldn't kill me, that we'd get through it. Dr Shaji comes in and asks me a few questions. I tell him about the symptoms and the first thing he does is check his ears. "Aha." He says, "It's an ear infection." What a relief. A relief because we nailed the cause of the fever and hence the infection immediately. He told me he would write me a prescription and have me out and on my way. I try to make the most out of my five minutes with Dr. Shaji, would have liked to talked about allergies with him because I think that it might be a culprit, but he was far to busy. Too bad.

After that I bring Joaquin home and give him a small dose of Tylenol to help the fever. The nephrologists have always told me to not treat the fever with Tylenol right away because it masks the cause of the fever - an infection. It's important to find out the source of the infection. I layed Joaquin on the couch and called our good friend Mitch to see if he will come over and watch Joaquin for a few minutes while I run and pick up the prescription so that I can just let him rest and not haul him around. Joaquin sleeps the rest of the afternoon and finally wakes up around dinnertime to eat a few crinkle cut french fries with us.

Today he's feeling a little better, still a little warm, but improving. He's been sleeping a lot and is still pretty lethargic. He's been even more of a snuggler than he usually is. I love it, but I also wish him a speedy recovery.

Otherwise, things have been great with all of us. Joaquin is two teeth shy of a full set of chompers. He's communicating better with us through sign language and his ever expanding vocabulary. When he's hungry he will say "nummy nummy" while rubbing his belly. He says, "b-ball" for football and basketball and will say it if he sees one of the sports on TV. He says "apple" for most fruits except for bananas because those are obviously "nanas."

His appetite has been great up until catching this cold or whatever it is. His favorite snacks are goldfish and he likes cereal. He's also a fan of eggs and burritos. And now he likes french fries with ketch up.

We've been trying to do more things with other children because he really like interacting with other little ones. I took him to a playdate in Truckee recently and there were tons of little kids but he was way more interested in hundreds of balls that were at the play center. He was just running around and picking them up and showing me while saying, "ball!"

A New Year

2007-01-10T23:43:00.000-08:00

It's been a while since I've updated - I guess you could assume no new is good news. Sometimes I feel like it would just be the same old blah blah blah if I didn't update more often because right now our lives are blissfully uneventful.

Ever since we switched to the new Prograf we haven't had nearly as many blood draws as we were doing. The people at the labs would even roll their eyes and make it seem like I *wanted* to bring my baby in to have him poked by needles. I wouldn't be here if I didn't have to people! And then the week before we went to San Francisco for New Years Eve I got a call on Friday saying that they had messed up and didn't have enough blood (even though we had gotten more than enough) to check his Prograf. So we had to bring Joaquin back in. We decided that we would bring him in at night to check it near the time of the when we give Prograf. They ideally want the blood drawn in the morning, but we figured night was good enough since we were leaving early in the morning the next day. Well, they weren't able to get the blood drawn for some reason or another so we had to wait until after New Years to get the Prograf level drawn. I wasn't too worried about it since it had been pretty stable in the weeks before.

We had a wonderful time in San Francisco and had a great New Years. Joaquin got to spend lots of quality time with Nana and Papa (Chris's parents) and he even behaved himself. We got back on the 1st knowing that we had to turn around and be down in Palo Alto again for our appointment on the 8th. I was nervous, but I tried to stay positive.

Before the xenopax appointment at 10am we had to have blood drawn. Since I'm the one who usually takes him during the week, I let Chris take him in for that. I went outside and tried to calm my nerves and when I came back in I fully expected to hear Joaquin screaming his little lungs out... but I heard nothing. I thought to myself: Could it be that he's done? I looked in the lab and he wasn't there and so I went to the day hospital and there they were! Chris said that they got the blood drawn on the first try! That does not happen very often.

So next was the xenopax. Every one before it took them at least three tries to get the IV placed and they would have to end up putting it in his scalp. It had been a full month since the last one and so the nurses had us warm Joaquin up in a blanket to expand his veins and they checked his feet and saw some juicy veins so they decided to try his foot first, which we agreed to. I figured I'd give them one shot to try somewhere other than his scalp. Joaquin wasn't even too upset and I heard the nurse say, "Yes!" She placed it on the first try! That never happens. Chris and I exchanged thankful glances and we soothed Joaquin until they were done taping the IV down. It all went so smoothly.

After that we went over to clinic to see the doctors. Joaquin developed a gnarly looking rash around his diaper area and we were sure what it was but I was afraid that they were going to want to admit him because it seems like that's their favorite thing to do. Dr Alexander agreed with us in thinking that it was yeast related. He prescribed some nyastantin. And that was pretty much the extent of the visit. He's grown more and has gained a little weight. We want to take him off the formula that he receives over the course of the night and even though Dr Alexander agrees that he's back on the growth chart he still wants the extra "insurance" that the formula provides. Joaquin has a voracious appetite. He's always signing that he wants to eat more and saying "mo, mo!" meaning he wants more!

Our next appointment is in February - they have also scheduled a biopsy, but we've decided that we do not want to do it unless something arises that would warrant it. Something that would make us possibly decide to do it was if his creatinine was going up or something, but we just do not want to ruin a good thing. Chris and I feel the risks out weigh the benefits of the biopsy. So we are going to tell them soon. And they made no mention of when we needed to have the next blood draw! I'm thinking it will be next week some time.

Sorry it's been so long to update! Thank you to everyone's whose checking in on us! We're doing good and looking forward to good health and much more happiness in 2007!

I'll post more pictures soon.

Happy New Year!

2006-12-29T21:33:00.000-08:00

Tomorrow morning we are packing up the Subaru and going to the Bay. We are seeing one of our favorite bands in San Francisco for New Year Eve, although Joaquin will not be seeing this concert with us, it's a little too late. Instead, Chris's parents are going to get a room in the same hotel as us so we will be able to go out and enjoy ourselves... together.

Things have slowly been returning to normal. Our next appointment is January 8th - it will have been a month since our last visit. The next appointment includes a xenopax infusion, which always makes me a little anxious because putting the IV in is a little stressful. After that infusion, we only have one more in February. I'm not sure what will happen as far as clinic visits because eventually we will only be going down to Palo Alto once every three months. But I don't know if that will be happening too soon - it's a possibility.

We've only had to do one or two blood draws in the last two weeks. His Prograf levels have been looking good, along with his other labs, so we have been given an extended holiday. I'm hoping that it's not a holiday and that we can move there permanently.

Joaquin continues to thrive, as you can see from the pictures. He had a nice Christmas and had fun opening the presents he received. We made a yummy Christmas morning breakfast and sat down and enjoyed each other. Later we went to Chris's sister's house for Christmas dinner where Joaquin got to play with his cousin, Aiden.

Joaquin's appetite continues to increase, too. He's always coming after me saying he wants "yum yums!" while rubbing his belly - which is actually sign language for please. His favorite snacks are date and nut balls that I make, bananas, eggs, cheese, hummus, and - well, mostly everything. He's not a picky eater at all, and I hope that we don't have to go through that. I'm just so happy and thankful that he wants to eat and is asking for food.

Other than that, things have been very mellow and somewhat boring around here. It feels good to be home and to be away from doctors. We hope that you all have had a happy holidays! We think that 2007 is going to be a good year.

It Feels Like Home

2006-12-16T21:13:00.000-08:00

It has almost been a month since we've moved back to Reno from Palo Alto. And while I miss the farmer's markets and close vicinity grocery stores, I don't miss being down there away from home. After being home for a while I realized just how displaced and unsettled I felt down at the Ronald McDonald House. We made the most of it, as did/do so many families. A person doesn't really have any other choice than to just adapt to a situation like that.

We've been going in for a lot of blood draws because of the Prograf levels being so weird, but I think we've come to a unanimous conclusion that the levels were wacky because of the way the pharmacist mixed it in Arizona. Now that we have in on some different Prograf from the compounding pharmacy in Reno his levels have been where they want them to be. Last week we did labs Monday, Tuesday, Wednesday, and Thursday. The phlebotomists at the labs were never too happy to see us, it felt like. On a day that they had drawn extra blood we came back the next and the phlebotomist told me that they had drawn more than enough, we shouldn't be back. I had to explain a few times that it doesn't matter how much was drawn the day before because the levels can fluctuate from day to day and we need to monitor that. By Thursday I told myself that I wouldn't come back in for labs on Friday even if they told me to. I was going to draw the line. No more. But I never heard from the doctors or Amy on Thursday and so I figured no news was good news and we slept in the next morning. I got a call in the early afternoon from Amy saying that we didn't have to get labs again until Monday because Prograf levels were looking alright. So hopefully things will continue to look good and *hopefully* we'll be back to our desired once weekly labs.

Joaquin is working hard at pushing about 5 teeth through his gums right now. One night the poor little guy was inconsolable because his teeth hurt, but he ended sleeping alright after a good cry. He is fine-tuning his walking skills and has even conquered a new move: to go from sitting to standing by getting up on all fours and then pulling himself to standing using his balance and tummy muscles! The first few times he did that we all cheered and he was so proud that he strutted around all the while smiling at us. He is learning new words and practicing his old ones. Some new words include: apple and puppy. And he loves exercising his new-found opinion by saying "No!" and shaking his head at everything we ask him. He's also still snacking on everything. He likes his bananas, avocados, hummus, butternut tomato coconut soup, and of course his raw brownies (which Chris likes equally as much.)

I can't believe how fast the Christmas season has snuck up on us. I'm the queen of procrastination and Chris is the king, so we are just beginning our shopping tomorrow. Hopefully we'll get as much done as we can or as much as Joaquin will permit!

A Whole Month

2006-12-12T00:37:00.000-08:00

It seemed like we were gone longer than a day when we rolled back into Reno tonight around nine o'clock. But our trip had only begun the day before when we left to go to Palo Alto for our clinic appointment and xenapax infusion. I, of course, was nervous about today just like I'm nervous about any appointment we have at the hospital - even if it is just a clinic appointment. But one thing I've noticed about it: if I remain positive and lighthearted about it all, everything seems to go smoother. I can't decide or tell if it just feels like it's going smoother or if my positive attitude really does affect the situation. Probably a little of both. So last night, after we were all snuggled into our cozy hotel room at the Stanford Motor Inn (Ronald McDonald had no room for us) and the boys were asleep I promised myself that I would remain positive throughout the following day just because even if things don't go right, at least the situation won't be made worse by my bad mood.

I woke up this morning a little nervous but I told myself that everything would go alright. I always get nervous about going into the hospital because I'm always afraid that something will go wrong and we'll have to end up being admitted. But there was no reason to even think that we would be hospitalized.

The blood draw went smoothly, the phlebotomist listened to us when we showed him what arm was drawing the best and he got enough on the first poke. Joaquin barely cried. Now that is a sign of a good phlebotomist. Afterward we went over to the day hospital where they informed us that the PICC team (who also place IV lines) were already notified that we were coming in today and they would be there promptlyl at our scheduled time to start the xenapax: 10 am. They don't order the medicine until the IV is placed because they don't want to waste it in the event that they weren't able to place an IV.

We showed the IV nurses which arm they had luck placing the IV before and that there was also the possibility of placing it in his scalp like we had before. I don't know why some hospital staff don't listen to us when we tell them these things. We would know which arm worked best - we were there for it last time! So they tried poking him twice before they started listening to us. They were about to try and get one in his wrist when we decided that the scalp would be the best one. The one in his wrist was skinny and wimpy while the one in his forehead was fat and juicy. Luckily she got it in his scalp and we were on our way to getting the xenapax taken care of.

Towards the end of the week there was all this talk about a big storm coming across the Sierras and on Saturday night it was raining/snowing in Reno, so you can imagine what was happening in the mountains and especially at the summit, which we had to pass over. We didn't know if we should risk making the trip and just reschedule, but getting an appointment in the day hospital isn't easy. The whole reason that we were hospitalized the last time was because there was no room for us in the day hospital. Plus, the next xenapax isn't until January 8th so we figured that, with all of the holiday craziness and togetherness, the doctors wouldn't be expecting us to make the trip back down to Palo Alto in another two weeks (not that we would have... well, maybe.) Instead of worrying about when we could get another appointment scheduled for the day hospital, we decided to brave the journey. After all, we didn't buy our four-wheel drive Subaru for nothin'!

When we finally made our way over to clinic the place was a zoo! Kids running, screaming, climbing, crying all over the place. They got us in and out of our appointment so fast we think we broke a record for the all-time quickest clinic visit. But that can be both a good and bad thing. If you're not prepared with questions or ready to have them read off, you might miss your opportunity. The good part is that we were out of there quickly! And we were right: we don't have to go back down until January 8th. A whole month with no clinic and no doctors! Finally.

Joaquin is still having issues with his Prograf levels; they are still running on the lower end of what they would like to see. We are starting to think that it's the way the pharmacist in Arizona who compounded the Prograf. Also, his white cell count is on the lower side too. So Dr Wong was saying that he shouldn't have any raw foods. Chris and I have been eating lots and lots of raw food as of lately and whatever we're snacking on, so is Joaquin. His favorite things are raw brownies! And he also likes bananas and avocados. We wanted to say to Dr Wong when she came back in: "So, no fresh fruit or veggies, but he can have all the Cheetos and Oreos he wants?!" Dr Alexander thought it was silly that he couldn't have anything raw. He just said as long as we're cleaning the produce off good then we should be fine. All Joaquin eats pretty much is raw fruits, veggies, and nuts right now. We make a conscious effort not to feed him processed, pre-packaged, high fructose, partially or fully hydrogenated products. We want to teach him to eat the healthiest things possible for his body so that he remains healthy, and therefore his kidney does as well. I think about how when we eat something that has a dairy substitute in it or something to that effect it doesn't taste as good as the real thing but we only consider it the "real thing" because that's what we were raised on. People have a powerful connection to food because it can be comforting or remind them of the good times eating their mother's homecooked meals. But what if you were raised eating things besides just dairy and meat, sure you would try meat and dairy at some point, but maybe you would find your way back to eating what you were raised on. Maybe you would be able to tell how the fresh fruits and vegetables made you feel better than the dairy and meat and refined sugars. Just a theory. No matter what Joaquin decides for himself to put into his body in the future, I would like to lay a healthy foundation of a taste for fresh, organic produce. And also teach him to clean his produce thoroughly!

So we have another week with a few blood draws. Luckily they are only monitoring his Prograf level, which can be done so by just doing a finger poke. His veins are healing, though, but we would like to preserve them for when he needs larger amounts of blood drawn. It's nice that we can have that done and out of the way early in the day so that we have the rest of the day to do whatever we want do - or whatever needs to be done.

In Control

2006-12-06T15:59:00.000-08:00

No, we don't have our holidays mixed up, but we do wish we would have had this costume for Halloween! It was passed down from some good friends of ours. Joaquin's been growing like a weed lately and I had thought that we needed to get him some long sleeved shirts for the cold weather we have returned to, but I found plenty of them - along with a bear costume! We also found some little shoes that fit him now, as you can tell in the picture.

Since we've been home, I've been feeling better. I feel more relaxed and in control of our situation now that we're a good 250 miles away from the doctors. Don't get me wrong, they're all good doctors, it just feels good to be out of their clutches. Joaquin has been thriving even more since we've been home. He's getting very good at walking - I think he prefers walking to crawling. He's got two more teeth and he's working on another tooth.

He's a snacking monster lately too. He loves to snack on whatever we're eating, especially a little treat that I make: walnuts, dates, coconuts all put together in a food processor and then rolled into balls. They're his favorites. He's also a fan of bananas, bread, and veggies. I made a really yummy butternut tomato soup that he devoured. I'm a big fan of spicey things and Joaquin's made it very apparent to us that he's not into spicy foods, so that's one thing I've got to learn - to tone down the spicy.

We go back down to Palo Alto on Sunday because not only do we have a clinic appointment, we also have a xenopax infusion. The xenopax is only an inpatient thing and should be done with in a few hours. The only thing about it is that they have to place an IV and that can sometimes be tricky with Joaquin.

As far as everything else, Joaquin's been doing good. His Prograf levels have been low and we're not sure why, so we've been doing the blood draws liberally - as in every day. No fun, but must be done. We've found two phlebotomists in town that do a relatively good job drawing blood from a little guy like Joaquin. I'm hoping that soon his Prograf levels will decide to settle into something more consistent so that we don't have to do blood draws (almost) every day. Sometimes I feel down about doing blood draws every day still, but then I realize that after we do that, the day belongs to us. I don't feel like we are just waiting around to go back to the hospital or to clinic. And once we go to once a month clinic visits, I will probably feel it more.

Home Sweet Home

2006-11-29T10:56:00.000-08:00

Monday we woke up early so that Chris could take Joaquin over to get labs and I could finish cleaning up our room at the Ronald McDonald House. We went back down late Saturday night so that we could go to the farmer's market in Menlo Park and Mountain View. We did most of our cleaning Sunday so that we could leave Palo Alto as soon as our clinic appointment was over.

After I finished cleaning the room, I went down to the front desk and turned in our key. No need to get sad or sentimental, we'll be back. Families at the house were saying that they'd miss us - but I told them they wouldn't have a chance to because we'd be back for clinic appointments.

I got to the office as soon as I turned in our room key to the front desk at the RMH. Amy, our nurse, had just gotten to the room, so I hadn't missed anything. As our appointment came to an end we were told that we wouldn't need to go back down there for two weeks! I didn't expect that, but I am thankful.

The drive back to Reno was smooth except that there was a winter storm that had come in the night before and made the driving conditions at the summit a little hairy. Luckily our new(ish) Subaru has four wheel drive, so we weren't required to put on chains, which saved a little time. Chris did a good job driving and we were home by six. Some friends of ours, Aaron and Kelly, called to invite us over to dinner and so we went and had yummy, warm, hearty soup.

It is so nice to be home. We are slowly smoothing things out with our prescription insurance, but they're still giving us a hard time with some of our prescriptions. I vaguely remember going through all of this when we came home after Joaquin was born, but it seems to be more of a hassle this time around for some unknown reason.

Joaquin is just amazing us every day with how smart he is getting and how quickly he is mastering walking. Just a few days ago he became confident enough to walk from one place to another and now he's is walking everywhere! It's so funny to see our little baby toddling around the house and getting his nose into everything! But I can't complain, he is obviously feeling good and his kidney is obviously doing him justice. Joaquin's got more words and he is combining consonants and making two word sentences. He says, "apple," "bye-bye," and "banana" (which I guess is actually a three consonant word). Just the other day he said: "Go bye-bye" when we put him in his car seat. He likes to take one of our cell phones, open it and say, "Hi." But he'll do that to pretty much everything he picks up - he thinks everything is a cell phone! His appetite is getting better and better. He really likes my raw brownies that make for him that are made out of dates, walnuts, and cocoa powder (and not cooked). He still likes bread and last night I got him to eat avocado. He likes soups and he likes to chew on raw veggies - his favorites are cucumbers. He also likes beans.

I feel like there's less anxiety of having to be admitted to the hospital now that we're 250 miles away. Our future is looking brighter, like there's something to look forward to - or just that we can actually move forward with our lives. Our lives don't feel like they're on hold anymore now that the transplant has come and went. The other day someone was talking about their summer plans and I was thinking to myself that we have so much more freedom this summer. All of the past year, our future was waiting for transplant time to come - even when I didn't thing we were going to do the transplant. I felt like we were waiting in limbo. But not anymore!

Happy Day of Giving Thanks

2006-11-24T14:53:00.000-08:00

Exactly three months to the day that my Mom and I packed up the car and drove down to Palo Alto we arrived back home to Reno. It has only been a few days since we've been home but has been oh so nice. I don't feel like we're completely here yet because we still haven't settled in and we have no moved out of the room at the Ronald McDonald house. We have a clinic appointment on Monday, so we're going back down tomorrow some time and coming home (for good) on Monday afternoon after we clean our room and give back our keys. It will be bittersweet.

Yesterday we went to our friends' house for a Thanksgiving feast. It was so great to be home and to see all of our family and friends. I can feel us moving back into some sense of normalcy, being home really helps me to feel it.

Joaquin is getting better at walking. Just now he is feeling confident to walk to where he wants to go without prompting or having someone waiting for him. He used to want to hold my finger while he walked even though he didn't need it but now he's doing it by himself. He's also dancing - taking little steps quickly. He always used to dance by putting him hands in the arm and waving them up and down, but now he's got the footwork to go with it.

The past few weeks we've been dealing with his white cell count being low - which leaves him susceptible to infections. We were having to pay for the GCFS out of pocket until we can get insurance to cover it. Yesterday I was at the pharmacy in Reno and the shot was a larger dose and was going to cost us $429! And then the pharmacist told me that she had called Wellcare and they said we had been terminated. I was fuming, knowing we are not terminated and that they always try to say we're terminated, so I called them right there in the pharmacy. I had to wait there for over an hour but in the end I walked out with the GCFS shot and only having to pay the $3 co-pay. I felt victorious, but sick of always having to fight to get things covered. Even the pharmacist yesterday didn't understand why they put us through all of this when it's something he needs.

And then I get a call from the doctor at the hospital who checked the lab work we got in Reno and he said that Joaquin's white cell count was on the higher side, so he wouldn't even be needing the shot! It was good news that his white cell count went up. I was thinking about how last year before we came home he had issues with high blood pressure and once we were home it went down to normal. I'm hoping that being home will make everything smooth out for him as well. I'm thinking it will. Even though he's still getting used to being home, I'm sure he can sense that I'm happy to be home and feeling more relaxed having our friends and family surrounding us.

Packing Up

2006-11-22T00:18:00.000-08:00

Chris called me when I was almost to the hospital this morning. He said that the doctors had been through and they were talking about us going home for Thanksgiving. I had not had my heart set on going back to Reno for Thanksgiving even though I wanted to because of the way things had been so up in the air. What they meant by us going home for Thanksgiving was more along the lines of going home for good. I had thought that I was going to have a little time to prepare to go home, like go through all of the stuff that we had accumulated over the past three months. So we are leaving tomorrow after labs and tomorrow is the 22nd - 3 months to the day that we arrived here in Palo Alto.

Everything is all lines up back home. We called the local pharmacy that we had been going to when Joaquin was still on dialysis for our medicines. I looked on our prescription insurance's website and the pharmacy was on their list of providers, but when we called the insurance company they said they weren't and when we called the pharmacy they said they were. But they said that they can compound Joaquin's meds so we don't have to go through the Walgreen's in Arizona, of all places. I'm hoping that will work out because I'm ready to get this all settled. I think part of the reason that they're hustling us home so soon is also because our insurance keeps wanting to pull stunts on us and the doctors think that once we're home it will be happening less... I'm not so sure of that but I'm just ready to go home. We have enough meds to last us for a while and so I can worry about that in the next few days.

The plan as far as follow up care is that we will be coming back down to Palo Alto every Monday for clinic appointments for a few weeks and then we will probably be going down twice a month and then soon it will be just monthly visits. Part of me doesn't feel like we're ready or stable enough to go home but if the doctors are the one's pushing for it, then they must feel like we're ready. I know once I get home I'll feel more better too. I remember last year when we were going home after Joaquin's birth and our subsequent stay in Palo Alto. I was so nervous about going home and then as we drew closer and closer to the mountains and then to the summit and down into Reno... I was so excited. I know it'll be this way this time. Our friends and family are excited for us to come home and we're going to be together with everyone for Thanksgiving when I thought that we weren't going to. It's funny how I thought for a while that we'd be home by Thanksgiving and then I didn't think so and now we are. I'm glad it all worked out.

Catching A Break

2006-11-21T01:39:00.000-08:00

It's late. I just got home from the hospital a little bit ago and decided before I went to bed I would update the blog since I haven't done so in a while.

Today we had clinic, which was uneventful. Joaquin's white cell count is down again and has been since Friday. On Friday night I receive a call from Dr. Su telling me that his white count is down and that they're going to need to give him a shot of GCFS to persuade his bone marrow to produce some more white cells. This medication is still pending with insurance, meaning that we're not quite sure what our prescription insurance is going to do about it. We need to send them more paper work because it seems as though they lost the prior authorization forms for this medication as well. The GCFS shot is not cheap if you're paying out of pocket like we have to: it's $279 per shot. So on Friday they told us that we would get labs in the morning on Saturday and then depending on what his white cell count was we had two options: 1) pay for the shot out of pocket - and more shots if needed, each running $279 or 2) admit Joaquin to the hospital so that our insurance would pay for them. As long as Joaquin is admitted to the hospital, insurance will pay for meds without prior authorizations. Now, don't ask me why they would rather have him hospitalized and pay thousands of dollars for being a patient when they could just make it easier on everyone by not making us jump through all these bureaucratic hoops. Chris and I checked our funds and made sure that we would be able to pay for the shots while awaiting either reimbursement from insurance or COTA and still afford our rent and other necessities. It was a tight one, but we decided that we would rather be (temporarily) out the $279 rather than admit him to the hospital. Dr Su said that usually when kids need these type of shots, they need more than just one - usually three (you do the math) and she knew that would be getting a little pricey but she ended up talking with the pharmacist and the dose that is in each shot is enough to cover two days worth of medication, so we were covered for the weekend and didn't have to go in to the hospital. Instead we had a lovely time with our good friends Aaron and Kelly.

I knew that Joaquin would probably need another shot, but I figured as long as we get through the weekend we'll figure out what to do on Monday, today. So at clinic, towards the end, I mention to Dr Wong how he still hadn't received his xenopax infusion that he was supposed to get last Monday but didn't because he was running the fever and had the UTI. She seemed a little alarmed and thanked us for reminding her. Amy, the nurse, came back in and said that the day hospital was completely booked up this week and that we would possibly have to be admitted to the hospital to have the xenopax administered. When we do it in the day hospital, it takes 15 minutes. Amy said how we could probably just go the hospital, get it administered and then leave. I knew better. That's not the way it works with the hospitals or the insurance companies - I knew we'd be spending the night. And we are.

The xenopax may only be a quicky little 15 minute deal, but it must be given via an IV. So that means trying to find one on Joaquin - which at this point is close to impossible. We've been doing finger pokes for blood draws because his little veins are shot. Luckily the finger pokes work and Joaquin seems more mesmorized by the bright red blood coming out of his finger than the fact that he's having his blood taken, so it all works out. So tonight by the time they get around to getting the orders from the doctors all set up, it's around 10 o'clock before they start coming around to do the IV. The first nurse we told right away that his veins are shot and that they've been having the best luck with putting the IV in his temple - but she didn't seem too comfortable with that. She tried twice and then they called in the OR anesthesiologist who gave about four or five half-assed attempts and gave up. We were about to give up and wait for the morning so that we could have the same nurse who put it in his temple that last two time do it and pray that she was even on tomorrow, but our nurse mentioned someone down in the PICU who did a good job. She came up and got it on the first try on the inside of his wrist. By this time it's a little after midnight and Joaquin is in good spirits in between pokes - this nurse comes in and just has this air of calmness around her - maybe it's confidence - and I just had a good feeling about her. We were all so relieved. I didn't want to wait until the morning because that would mean that much longer we'd have to stay in the hospital tomorrow. So hopefully we should be out in the late morning tomorrow.

I feel like lately we've been hitting all these little bumps in the road to going home. It's seems rough but then I realize that it's not like it's his kidney having problems, so I'm thankful for that. I just wonder sometimes why we were chosen to go through this - I try and make sense of it and it's really hard. I realize that I may never know. I try and see the lessons learned but sometimes it's hard to accept it all as lessons learned when it's my son's health and well-being that's at stake. How could a God be so cruel to make me learn some life lessons by way of making my son go through this? Or perhaps it's Joaquin's that he's got to work out and go through and I'm just along for the ride. He picked Chris and I to be his parents - he must have seen something in us.

But sometimes I just want to catch a break. I felt like tonight we did when the nurse finally placed the IV after almost 8 tries. It's these minor victories - placing an IV or getting a medication authorized at the last minute so that we can be released from the hospital - where I catch my breaks. Where I get a fleeting sense of excitement that maybe things will be alright and it's not all just uncertainty on my horizon. Where I feel like someone is watching out for me and making this go our way for once. Sometimes I have to step away and remember that it's not me with the health problems. I'm so caught up in Joaquin because he's so young and depends so heavily on me that it feels like I'm the one who was on dialysis, and had a transplant... I feel it all so acutely - probably because I'm a mother, too. Sometimes I just wish I could come up for air. It's hard to get perspective on a situation when you're in the middle of it. But I feel like someday we will catch our break and I will come up for air. I look forward to a time when we can look back on this and just barely remember what it was like to be going through all of this. But I hold no regrets about bringing Joaquin into our lives. I feel blessed to have been chosen by Joaquin to be his mama. It's all for a reason even if I never figure out what that reason is.

All this weekend Dr Su talked about us going home and today Dr Wong mentioned nothing of it until we brought it up. It's all an issue of having a pediatrician all lined up (which we do), a compounding pharmacy (working on it), and a lab to have blood drawn at (already have.) So now it's just a matter of getting everything in order back at home and soon we will be there. We only have a few more weeks to go.

Bumps in the Road

2006-11-15T23:32:00.000-08:00

It was a close one, but we got released from the hospital this evening. They were going to try and make us stay for the night because we, of course, are having issues with our prescription insurance. Two of the most important forms that we faxed over to them on Saturday so that they could have the pre-authorization necessary to fill the prescriptions were either lost or misplaced. So today me and another doctor scrambled to get things in place so that Joaquin could be discharged. I've never felt the physical impact of stress until today. I'm just thankful at this point that we got discharged and didn't have to stay another night.

The reason they would have wanted him to stay another night is because if he's in the hospital, the insurance will cover prescriptions through the hospital pharmacy, but as soon as we're discharged, we have to go through a Walgreens in Arizona to fill his compounded medications because no Walgreens anywhere but Arizona can do this for some reason. I don't completely believe this, so I'm going to work on getting a Walgreen's pharmacy in at least Nevada. I was speaking to another transplant family who are from Las Vegas and they seem pleased with where they're getting their prescriptions from, so I'm going to look into them.

We had a hard time believing that he needed to stay the night last night, but we were compliant because the doctors felt it was best. In the afternoon we decided that there really was no reason for us to be sitting in the hospital room and since the nurses only come through every four hours to do vitals we decided to go for a walk. Chris saw Dr Alexander and mentioned it to him and he said, "A walk would be good." So we packed up Joaquin in his stroller and we strolled him right out the entrance of the hospital. We walked over to Trader Joe's and got a few things and then walked back. We were gone for a total of about 2 hours and no missed us at all. Sometimes I forget that it's not like we are in prison when we are in the hospital. I mean, if your child is sick, then it probably wouldn't be a good idea to leave the hospital, but since we were just basically sitting around waiting to leave - we saw no harm in a nice walk. The fresh air and exercise did us good.

Chris stayed the night in the hospital with Joaquin and I went back to the RMH to get some sleep - which I appreciate because I have a hard time sleeping at the hospital and Chris can fall asleep anywhere. Most of the time when Joaquin is in the hospital Chris actually falls asleep before I leave, so I just kiss them both goodnight and duck out to go get some quality sleep.

The doctors usually do their rounds in the morning where they go to each room and discuss the patient and the plan. Parents are welcome to listen in on the conversation but if they don't chose to then generally the doctors come in and let them know what is going on. When I got there this morning the doctors had already been through and Chris said that we would not have to get labs drawn tomorrow or go to clinic and - this is the exciting part - at clinic on Monday we would discuss with Dr Wong about going home! The doctors are all in agreement that the biopsy is not taking place at the end of this month and everything has been going so well as far as his kidney goes... So I'm happy to eat my words when I said that I didn't foresee us going home around the 100 day mark because now it looks like we will.

Chris left tonight to go back to work. I'm so thankful that his work is so understanding about letting him have the time off work when we need him to be down here with us. It's always hard to be in the hospital with a little one because not only do you need the moral support, but you also need a break to step out and go make or pick up some food. I would never dream of just sitting Joaquin in his "cage" or hospital bed and walking out. First because he would never let me, but also because it's always best to be with your little on at all times in the hospital so that you can be sure that they're not doing anything wrong. And it's not so much about them doing something wrong, but you know you're child the best. Sometimes it's just good to have another set of eyes when they bring in medication. I know parents who have stopped a nurse from giving the wrong dosage or medication because they double checked. Once small mistake could mean a huge consequence or set back. Doctors and nurses are humans and therefore prone to error, just like anyone else.

So the rest of our week is looking (hopefully) uneventful. We have to get blood drawn on Friday and then we have clinic on Monday where we are going to discuss moving back to Reno. Joaquin is still nurturing his confidence in walking. He's been such a snuggle bug lately too. Always wanting to snuggle up and give me hugs and kisses. We're both feeling good that we're out of the hospital. I was thinking today while he was sitting on my lap that even though we were in the hospital, I was just thankful that it wasn't something major like rejection. Thankful that all of our little hospitalizations are for minor, non-kidney related issue. When we have these little minor issues I always wonder if I'm not praying or giving thanks enough or if prayer is not applicable to this, but when I step away and look at the big picture I see that all of our prayers are working and guiding us through this without any major complications. The doctors always tell us that we are having a relatively smooth post-transplant pre-100 day time. I have a hard time seeing that when we are sitting in the hospital but I've always felt like giving Joaquin my kidney was the best thing for him. I just don't see how his body could reject it, you know? My Aunt Pam said that she had a peaceful feeling about all of this and I have to say that I agree with you, Pam. I get scared about how this will all work out, but I've always felt good about him getting my kidney. I think I am so prepared by the doctors and nurses for the worst that it overshadows the positivity I feel deep inside. Thank you to everyone who are thinking about us and praying for us.

The Long Road Home

2006-11-13T21:21:00.000-08:00

Joaquin was admitted to the hospital today. He felt a little warm last night as he was going to sleep and then this morning I took his temperature and it was 99.1 - which isn't alarming since it wasn't over 100 degrees. Then we got to the day hospital where we had a scheduled xenopax infusion and he was running a temperature at about 102 degrees. I, of course, got scared because that was a symptom of rejection. But Dr Weintraub reassured us that in all of her years working with post-transplant care, never have they seen rejection that started with fever. Joaquin's immune system is still suppressed more so than it will be in another few months so he's more susceptible to infections. Once he's a few months out of transplant, they will lower the dose of immunosuppressant drugs and his immune system will be better at fighting these things. With small guys like Joaquin they worry about dehydration that commonly accompany fever, but his creatinine looks fine so they are just giving him some antibiotics. Luckily we were able to quickly pinpoint where the infection is coming from: his urinary tract. So they were able to give him a more specific antibiotic rather than just giving him a really strong one and then testing and ruling out what it could be.

So we are staying at the hospital for a while. We were told in the beginning before it was determined that it was a UTI that it would probably be for 72 hours. In out-side-hospital life that might seem like nothing, but in the hospital it's forever! But now that they know what the infection is coming from it might not be as long. Also, they couldn't get an IV line in him. They tried three different times. Fortunate for Joaquin, these antibiotics can be taken orally and he is keeping fluids down. I think not being able to place an IV line actually worked to Joaquin's advantage because now they won't have the excuse of keeping him to do the antibiotics intravenously. I'm hoping that we can be released tomorrow if things continue to remain stable and his fever does not raise. It's already down to 99 degrees - so here's hoping.

Every time something like this happens it makes me feel like a failure. And I know that it's only in my mind. I always want Joaquin to be the exception, to make it through the 100 days without hospitalization. To me it feels like he's been hospitalized a lot but when were talking with the doctors today they said that they don't consider the last few times to be true hospitalizations because they weren't really that serious. They were more or less for monitoring. And that is what this hospitalization is turning out to be as well because he's not hooked up to any monitors. Every time we go into the hospital we put Joaquin at risk for infection because of all the people coming through. I voiced my concerns about this to the doctors and they feel the same way too so hopefully we will leave soon.

So please Joaquin in your thoughts and prayers. Send him healing energy to help his body overcome this so that we can get out of the hospital soon and so we can go home to Reno soon. I don't think we'll be moved back by Thanksgiving like I had thought a while ago and I'm not so sure that we'll even be home by December 4th, which is the 100th day post transplant. They said that they're goal is to have us home by Christmas and at this point it's sounding more realistic than Thanksgiving. I'm prepared to stay longer but I'm also so ready to get home. I think that Joaquin will only get better and do better once we're home.

On The Same Page

2006-11-09T18:56:00.000-08:00

We had a positive day finally. I feel like there was a while when things were not going as well as I would have liked them to and now they are finally swaying back in our favor. We had a blood draw today and the first two pokes didn't go so well so they were going to try a third and last time. I said that we could try a third time and if that didn't work we should try to just do a finger poke and get the absolute necessary labs. They said that they would be able to get everything they needed with a finger poke. Joaquin didn't cry when they poked his finger and just watched them as they squeezed his finger to get the blood. Only towards the end did he cry and that was only because he didn't want the lady to hold his finger anymore. I'm hoping that we can just do the small labs this way now. Sometimes we have labs where they want to screen for everything and then there are days like today when they just want a relatively small amount of tests. I don't know why no one ever said anything about that before, but from now on, we know.

After the blood draw we went across the street to the clinic. When Dr Wong came into the room we talked more about his formula change. As of last Friday we switched to half Pediasure, half Nepro. Since Joaquin had been on the Nepro, his appetite had decreased which was very disheartening for us as his appetite had picked up after the transplant. We think that it was also that the Nepro was just nasty; it obviously was upsetting his system. The Nepro also had a higher caloric content which means that if he's getting all his calories that he needs for the day with the Nepro, then he wouldn't have the drive to eat. Now that he's on the half and half his appetite has returned. Also, today Dr Wong charted him on the growth chart and he is right about dead center for both height and weight now. She said that the half Nepro and half Pediasure wasn't giving him all the nutrition and calories he needed, but the fact that he's growing and gaining weight means that what we are feeding him is making him grow.

And then Dr Wong starts talking about how after everything has happened to Joaquin with the anesthesia and then the Pentamodine, she doesn't think that it would be a good idea to put him through the biopsy. We had not yet told them that we were going to refuse the biopsy. I feel so good about the fact that she was the one to bring it up to us. I told her I agreed completely. She said that we would do the 6 month, 1 year, and 2 year biopsies, but we'll cross those bridges when we get there. It feels good to be on the same page with the doctors finally. Dr Wong said that the Pentamodine disaster put her over the edge and that since Joaquin was looking good and his number were so good that she would talk to the rest of the transplant team about not doing the biopsy that they had scheduled for the end of the month (but we were going to refuse.)

We were also having issues with our prescription insurance telling us that we were terminated and that we would not be eligible for prescription coverage until next month - which we would mean that we would have to pay for prescriptions for this month. Amy, the nurse, said that prescription for one month could be up to $17,000. So I called the prescription company today and told them the whole situation. They had said that they would reimburse us because it was their fault, but how are we supposed to cover them until they reimburse us? She transferred us to the pharmacy section and then she got the Medicare people on the phone and we were able to figure everything out and make it so that were eligible today. I don't know why we were told it would be a month, but it's relieving to have that resolved. It's the last thing we want to be dealing with right now, but insurance companies always seem to be doing stuff like this to us.

So it was a good, positive day thankfully. We have no labs tomorrow and hopefully we will be back on our once weekly lab draws once again. I don't know why were in that little funk a while ago, but the funk has seemed to lift.

Walking Joaquin

2006-11-08T19:38:00.000-08:00

He's walking! Joaquin took his first 4-5 steps all alone today and did it later on this evening! It's so exciting. Everyone's warning me how now it's all over and I'll be wishing he wasn't walking. But I'm so thankful that he's feeling good and making these little milestones. When you have a child that had a rough start, I think it makes the milestones even more special.

Drawing the Line

2006-11-06T17:33:00.000-08:00

The past week we had to do blood draws every single day. On Saturday Joaquin's veins had had enough and decided to quit giving blood. The phlebotomists tried three times to find a good enough vein to draw blood from and ended up having to just do a finger poke. It wasn't enough blood, but it was an adequate amount of blood to check his Prograf level and his white cell count. After Chris and I left we had already decided that even if his blood levels weren't good enough to give him a day off, we would take it off anyway. Sometimes there's a point you reach as a parent and an advocate for someone when you draw the line. Luckily his Prograf came back fine and his white cell count was rising, so we had the day off yesterday.

Today the phlebotomist did a good job and got the blood on the second try. I really feel like it takes confidence and experience in a phlebotomist to draw blood from a patient like Joaquin, or any baby and small child. She felt confident today and drew the 10cc's of blood they needed, which is a lot for a little guy like Joaquin.

They decided to stop giving Joaquin Septra, which is an anti-bacterial medication, because his white cell count had been low. When a kidney patient's white cell count starts to lower, first they lower their CellCept, which is an immunosuppresent drug that also affects how the blood marrow produces, then if that doesn't work they take them off Septra and give them another drug called Pentamodine. The Pentamodine is one that can either be given through an IV or by placing a mask over the patient. One would think that it would be easy to give a small child a mask, but some small children don't like it and they have to end up doing the IV. When she said that some toddlers don't like it, I knew Joaquin would be one of them even though she was saying how he'd be fine because he's so mellow (yeah, she obviously doesn't know Joaquin, right?).

Joaquin sees the mask and immediately gets upset. So Chris holds Joaquin in his lap and I hold the mask to his face and the respiratory therapist holds his legs. The whole treatment only takes about 4-5 minutes, but Joaquin struggled and struggled. I remember the RT (respiratory therapist) saying how he was finally calming down but I just knew that something wasn't right. I even asked if he was alright and she said that he was fine and I asked if he could breath alright and she said that there was oxygen coming through the mask but to me it looked like he couldn't breath. I feel as though Joaquin was throwing a tantrum and was so angry that he held his breath or the mask wasn't really putting oxygen through and he couldn't breath. Either way, right at the end he didn't look alright. It's an image in my head that I'll always have and I wish that I didn't. He was turning blue and he wasn't breathing. Chris sits Joaquin upright and I hit the bottoms of his feet and call his name. The RT had rushed out to the nurses station to alert them to what was going on. She comes back in and tries to give him oxygen and I turn away and start crying... I can't really remember what else I said. The nurses rushed in and by that time he was crying, so I knew he was alright, but I was so shaken. They took me out of the room and gave me water.

When I came back in the room, Joaquin was sitting on Chris's lap still and Dr Wong was in the room. He looked groggy and grayish. I picked him up and he almost immediately fell asleep on my shoulder. It felt good to hold him and listen to him breath. His oxygen saturation was a little on the lower side and his color still wasn't that great. Dr Wong was talking about admitting him. She said that they would admit him and if he was okay by the night, they would release him that night or the next morning. When they called up to 3 West they said it would be another 2 hours before he could have a bed.

They moved us into another room and we finally gave him some food. He had been without for a few hours and it finally dawned on us that perhaps it was all an accumulation of being without food - hyperglycemic - and the blood draw and the passing out that made him so slow to recover from everything. Once we fed him he perked up and his stats looked good. They wanted us to stay until six o'clock, but they released us at around four-thirty. The appointment was at eleven o'clock and we were told it would only be about twenty minutes.

All of his labs from today came back okay, so we don't have another blood draw until Thursday and they'll see us in clinic that day too because we didn't have a chance to see them today. I think that I was upset not only because of Joaquin's reaction to everything - they think that it was a reaction to the Pentamodine, but Chris and I don't - it's that this all had to take place. It feels like every time we go into the hospital something like this happens. We are so unsure about doing the biopsy and now we are almost sure we are not doing it - especially after this.

Chris and I have always believed in instinctual parenting, trusting your parenting abilities and intuition, and this applies to modern medicine. I realize that the doctors have Joaquin's best interest in mind, but nothing is for certain with western medicine and especially in transplants. They are still learning as they go along. Although they would probably never admit it to us, I think there are other reasons beyond checking for early rejection by doing the biopsy. Stanford is a research and teaching hospital. There are little lies that we've caught the doctors in- like today Dr Wong said the the day hospital was booked and so that would mean we would have to be admitted to 3 West. Later we heard the day hospital nurses say that there were barely any patients... things like that. And sometimes we feel as though we are being talked down to and that because we don't have the medical knowledge we don't know what's best for our child. I completely appreciate what they've done for us, but at the same time I've also got to trust my instincts and know where to draw the line when it comes to my child and realize that I may know what's best for my child and not the doctors.

I hope you all don't think that I just come here to complain. Or that I'm unappreciative. I haven't had easy access to the internet lately and I'm not able to download any new pictures and I've got some cute ones! Joaquin is so close to walking. He's taken a couple of wobbly steps and he can hold on to just one had and walk along beside me. He is such a blessing and today was so scary. As we left the day hospital, Chris and I said: "Run!" We wanted to get out of there as fast as we could. I held Joaquin all the way home on our walk from the hospital and we gave each other hugs and pointed out the planes in the sky.

Strength

2006-11-01T18:27:00.000-08:00

This morning was the 3rd day in a row that we had to do blood work. We also have to do it tomorrow along with an ultrasound because Joaquin's creatinine is a little higher than they usually see with him. On Monday it was 0.31, Tuesday it was 0.29, and today it was 0.30. Looking back on the creatinine info that I listed in a blog entry in September, that's totally normal for an infant, but of course I'm worried. And really there's no reason to be worried about it because it's not like his creatinine is rising, or rising alone. Amy was saying that this might just be where his creatinine numbers level out at because he's not on 24 hour hydration anymore, but just to be on the safe side they want to do an ultrasound. I have no problems with ultrasounds because they are non-invasive, no sedation involved and Joaquin doesn't seem bothered by it. Another thing to consider is that his formula was changed, which could also throw is numbers a little off. My biggest fear is that it's rejection, but even if it was rejection it does not mean that he would lose the kidney.

Just to be clear and not scare anyone, they are not considering this to be threatened rejection - they feel as though it's just his kidney requiring more hydration. But either way, please keep us in your thoughts and say an extra prayer for Joaquin and his creatinine and BUN levels - that this is nothing more than Joaquin's body adjusting to it's new kidney. And send me a little strength, because I'm a mama and worrying is what we do best.

Happy Halloween

2006-10-31T11:16:00.000-08:00

It's Joaquin's second Halloween and although he's still too young to really understand what's in it for him as far as trick-or-treating and candy, he does love all of the decorations that are around the RMH. He likes the jack-o-lanterns and bats - he likes to point out all the decorations that are hanging around the house too. We have to stop to touch and look at them. It gets pretty festive around here and there is trick-or-treating at the hospital. Some of the mothers at the house have decorated the play room to make it look like a haunted house. I think next year Joaquin will really understand and appreciate this fun holiday, but this year it still isn't too important to him.

We had blood labs and a clinic visit yesterday. Chris is down in Palo Alto for the week, so came with us. One thing that we were discussing with them was his biopsy that is scheduled for November 28th. A biopsy is where they put him under (again) and put a small needle through his belly and take a small sample of the kidney tissue to look at and test to make sure that rejection is not taking place. I am part of a group on yahoo for people who have had kidney transplants. Most of them are adults and a while ago there was a brief discussion about biopsies and many of them had never had one. At LPCH they have them scheduled for 3 months, 6 months, 1 year and 2 years post-transplant. Many of the people on the yahoo group feel like there is no reason to do a biopsy unless rejection is suspected because no biopsy is without its risks. They feel like why mess with a good functioning kidney. And with Joaquin, we all know what happened the last time he had to go under anesthesia.

Dr Wong assured me that all of the doctors would be there to make sure that didn't happen again and I asked, why did you let that happen in the first place when doctors know that anesthesia makes the blood pressure drop and that is not good for a kidney patient. She had no answer and I knew that it was worthless to ask at this point because it's said and done. But they feel like biopsies are important because with a baby and small children they have less muscle tone so rejection could be taking place and they would not see it from their blood work. For an adult, the reason that they generally don't do biopsies is because it usually is detected in blood work. We're still not sure whether or not we are going to go through with the biopsy because of the risks involved, but you do want what's best for your child - still, it's scary. Sometimes I don't understand why they are so willing to just put these children under anesthesia time and time again because with any kind of surgery, be it large or small, what also goes along with that is morphine and other drugs to "make the patient comfortable."

When Amy called yesterday with the lab results from the blood work she told us that his white cell count was a little low - which could make him more prone to infections. It's because they raised his Cell Cept dose - they lowered it yesterday, but now we have to be careful of crowded places and uncooked food for a few days. Also, his creatinine was a little higher than they would like it to be. But along with the creatinine being a little higher, his BUN was too. BUN stands for Blood Urea Nitrogen, a waste product normally excreted by the kidney. The BUN level is determined by your kidney function and your protein intake. It's a little less worrisome that his BUN and his creatinine were a little higher together because it means that he just needs a little more water. If it had just been his creatinine going up, that would be more cause for concern. So we just gave him some extra fluids yesterday and took him in for labs again today. Hopefully his creatinine will look better. I feel like it will.

Happy Halloween everyone!

And Then There Were Two

2006-10-27T12:06:00.000-07:00

The time is quickly approaching when my Mom has to return home. Thankfully she was able to work it out with the school district so that she could be here for this long - I don't know what I would have done without her. I don't think that we would have spent so much time together in the last year and a half if Joaquin had not been born. And if he had been born with no health issues, we still would not have spent so much time together and she would not have been such a huge part of Joaquin's life because of the distances separating us. If something good could have come from Joaquin's health issues, it would have been the time she spent with us. It doesn't really help to make sense of why this happened to us, but it's comforting in some way.

I'm a little nervous when faced with the prospect of all of this one-on-one time with the baby beast, a.k.a. Joaquin. I stayed at home with him his first year, but if I had a rough day with him I could just pass him off to Chris at the end of the day and get a little break. Once she leaves, it will be just me and Joaquin. I know that we will work it out and be fine. I was nervous last year when we returned home and she had to leave because she had been so much help and then throughout the year Joaquin and I got into our groove and I always had Chris to help out in the evenings and weekends.

I don't think that we will be by ourselves down in Palo Alto for more than a couple weeks. We are at a point where we are seeing the nurse and having blood drawn once a week. Chris and I have talked about having Joaquin and me move home and just come down for the weekly visits - because that will not be a long term thing. It's something I would like to discuss with the doctors, obviously. To be honest, though, I'm also nervous about leaving the closeness of the hospital. But there is really nothing that could happen that we wouldn't be able to just jump in the car and be down here in four hours. I was so nervous last year about leaving Palo Alto when we took Joaquin home on dialysis and look how that turned out. No problems - although it is a little different having a kidney instead of a dialysis machine.

Joaquin is finally adjusting to the new formula and last night we all slept through the night without Joaquin waking up because his tummy hurt and he was gassy. He is thisclose to walking - today he stood unassisted, but he is still a little hesitant to make those first few steps by himself. He just needs to build his baby confidence.

Thankfully we have had a relatively uneventful post-transplant experience so far. I attribute that to all of the thoughts and prayers we have been receiving and Joaquin's resilience.

Once a Week

2006-10-23T23:34:00.000-07:00

Whew. Everything went smoothly today.

This morning we got ready to go to the hospital and left the RMH by nine o'clock, give or take a couple of minutes. We arrived at the hospital and went through admissions to receive lab slips for the blood draw and then miraculously there were no people waiting to have their blood drawn. Sometimes it can get swamped, especially when all of the transplant kids come through in the morning before they take their Prograf.

We got his blood drawn quickly, no digging around for a good vein, they got it on the first try. And that's the way his veins will draw as long as they have a week in between draws. His little veins cannot support daily blood draws - we would run out of spots. That's why the PICC line was so important in the beginning, but it came with it's pitfalls. It's a double-edged sword, that PICC line.

We arrive at clinic a full half and a hour before our scheduled 10 am appointment. I figure this will give the nurse enough time to round up a team to place an IV, but I figured wrong. Also, they won't order the medicine until they have a line placed, so after we place the line we had to wait until the medicine came before we could actually begin the infusion.

The IV nurse came in and was eyeing his chubby little arms and his feet, but right away I mentioned how we had success on the first try with the IV in his temple. She wanted to do an arm or foot, but I convinced her otherwise and she placed the IV on the first try. It went beautifully except for the fact that Joaquin is a sweaty little beast and the sticky dressing that holds the IV in place did not want to stick, they even wrapped some bandage around it. I ended up having to actually hold it in place, which wasn't so bad because Joaquin was a little worn out from his screaming fit while they were placing the IV, and so he relaxed on my lap and watched some TLC with me. The infusion only lasts 15 minutes, but since they placed the IV in his head, they ran it at half the amount of time - so it ended up lasting about 30 minutes instead. Which was fine by me, I was just grateful that they had placed the IV so quickly - I just wanted to do the infusion and get out of there.

So even though we arrived at the day hospital at 9:30am, the infusion didn't actually start until around 11:30am and we weren't completely finished (because after the infusion is complete, they want to "monitor" him for another 30 minutes) until about 12:30pm. And you know what? I didn't even raise a stink when they were lagging and made us wait a long time. I think even though my hospital tolerance has gone down, my patience has gone up... Just a little. I'm still going to keep them on their toes - in a good way, of course.

After we finished the infusion we went straight over to transplant clinic, as is the usually norm for Mondays. We were running late and I had even received an "urgent" call from one of the receptionists wondering if we were coming to clinic today that scared me because I thought it was Amy calling to say that something was horribly wrong with Joaquin's lab results. I stressed all the way over to clinic with butterflies in my tummy and everything. I think the main reason why I was stressed is because I'm a little more responsible for making sure he receives the full 2 liters of fluid every day and now that we're not doing 24 constant hydration. I need to make sure that throughout the day he received the other 1 liter of fluids that weren't given overnight. But I had been doing a good job with it, so there was really no reason to worry, but I still did. Especially with all the rejections and threatened rejection going on around me. I need to remind myself on a daily basis that every child is different.

We saw the nurse Amy and Dr Alexander even made a guest appearance and had nothing but praise for Joaquin. And of course Joaquin hammed it up for Dr Alexander - giving him his cutest faces and his funniest noises. Amy still hadn't received the lab results, but I expressed my concerns and worries that I had been having and she seemed reassured that everything would be alright. She said she would call me later in the day with the results.

Around 4:30 and 5:00pm I still hadn't received work from her. I'm taking it as a good thing because if things were not right we would get a phone call immediately. Anyway, she called with the news that his creatinine looked wonderful - 0.24 - and his Prograf was not back yet but since we're going down to just once weekly blood draws it wasn't urgent that the doctor call us tonight so we could expect to hear from her tomorrow morning. I think I was finally able to breath after that.

I'm not sure when our next clinic appointment is - whether or not we see them on Thursday or Monday. It's a nice feeling to look forward to another week filled with doing thing we want to and just getting ourselves back to normal.

Joaquin's throwing a bath toy out of the tub cause it's what he likes to do best.

8 Weeks

2006-10-22T22:47:00.000-07:00

Our boring week has ended and after tomorrow hopefully we will have another boring week that follows. But tomorrow we have a few things going on and one of them is Joaquin's xenopax infusion. There is no reason to think that tomorrow will no go smoothly. We have no PICC line to deal with and so right away the nurse will arrange for someone to come down the day hospital (where he has the infusion done) to place an IV line. We are scheduled to be there at 10 am, but we need to have blood drawn before. The good thing is that it's taking place in the morning and so hopefully it won't be a long ordeal. And thankfully it's not too early in the morning cause I'm no early bird - and neither is Joaquin

I was thinking how having a week where there were no blood draws and no doctors and no hospitals makes me anxious for a little thing like tomorrow. It's like I was so steeled from the transplant, the hospitalization, the constant blood draws and nurses that when we finally got a break my tolerance for it all went back up. It could easily change to where we are in the hospital being monitored, but hopefully it won't.

Lately at the RMH there have been a few families dealing with organ rejection and that's scary for me but not an indication of how well Joaquin will or will not do. It's a very real possibility. Lots of families deal with rejection, and some don't. We were warned that these first 100 days, the first year even, has the potential to be rocky. I think the reason that it's been on my mind is because it's all I really see at the RMH. I only meet the families who are going through rejection, so it feels like everyone is going through rejection. And I know that there are plenty of organ transplanted kids out there doing just great... I just don't meet them.

The company who supplies Joaquin's formula finally delivered it on Thursday. Along with the formula they were supposed to also deliver some protein powder to add to it, but it didn't arrive. I called the company and they overlooked that on the prescription that I faxed them, so they had to send it out separate again. Friday night into Saturday was our first try at the new formula. The way they worked it out was that he would receive 1000mL during the night and then it was up to us to give him the other 1000mL during the day by either having him drink it or bolous it - meaning put it down the ng tube. The new formula upsets his tummy a little bit because he woke up Saturday morning and threw up and was a little gassy. This morning he work up a little upset and again threw up and farted a lot. I'm hoping that he's just adjusting to the new formula. During the day I make a mixture of water and juice - yesterday it was organic apple and grape juice and today it was an Odwalla Berries Go-Mega drink. I'm thinking about doing some fresh squeezed fruit juices or getting a drink that Trader Joe's carries called "Carrots and Greens." I feel now that since Joaquin is getting to an age where he is taking in more solid foods and not just the formula the doctors prescribe, I want to get as much whole foods in him, like lots of fruits and vegetables. My hope is that by starting him out with healthy, whole foods that it will be a life pattern and may help his kidney last longer and stay stronger.

This weekend we made a much needed trip to the beach. The weather was sunny and warm - people were wearing their bathing suits and I wished that I had brought mine so that I could have jumped in the ocean. Joaquin just wanted to walk up and down the beach. He liked when Chris would wait just a second before the tide was about to reach Joaquin and then pick him up. Joaquin liked the feel of the sand on his toes and his little feet smacking against the watery sand as he walked along was so cute. He is getting better and better at walking every day.

After the beach we went to a local fish restaurant where we pigged out on fresh fish as we sat ocean-side. The day had been clear and beautiful but just as night fell the fog came in from the horizon and blanketed the whole coast. Joaquin enjoyed the clam chowder and sourdough bread. It was a beautiful day followed by good food.

We are nearing the end of October - today we have been living in Palo Alto for two months. Tomorrow we are heading into the 8th week post-transplant - and soon we will be two months post- transplant. It's amazing how fast it's gone and how much we've gone through - and I don't mean that in a bad way - just how much we've done and what we've been through and where we are at now. I was thinking today about how just a little while ago we were doing daily labs. And now we are looking forward to going home.

Home Stretch

2006-10-19T23:44:00.000-07:00

This week we were busy being bored and doing nothing - and that is not a complaint. Joaquin has had a week full of no doctors, no nurses, no needles and no hospitals. He's been working on his new skills such as walking (with a little balancing help) and crawling and climbing. And he's also adding more words to his ever-expanding vocabulary.

While we were in Reno last weekend eating dinner with our friends who had a staircase, Joaquin discovered the the excitement of climbing stairs. We are on the third floor of the RHM and we usually take the stairs to our room not only because it's exercise, but also because the elevator is the slowest moving thing ever! Now Joaquin has to climb the last flight of stairs or else. He has also found how he can get himself off the bed without our help. He flips over to his belly and scoots to the end of the bed and then gently eases back until his feet hit the floor.

He also points out all of the artwork on the way up the stairs and likes to say, "up" as we go. The other day I pointed to the sky and said, "plane" as one passed overhead and a little while later he pointed up and said something that I know meant "plane" but might not be discernible to the untrained ear and only to those who are with him on a daily basis. Last night he was snacking on some penne noodles and tomato sauce during dinner and, as such is the case with most babies, he managed to get spaghetti sauce in his air, up his nose, and in his ears. It was plain to see that it was time for a bath.

We were never able to give Joaquin a true bonafide bath before because he had the dialysis catheter in his belly that could not be submerged. Usually we would just fill up the tub a little bit or bring him in the shower with one of us. After transplant he had his PICC line in and that could not get wet or it might get infected. Once the PICC line was removed we were able to really give him a good bath and let him play on the bathtub. We bought him some little sea creatures that he likes to toss out of the bath and onto the floor. He likes being on his belly splashing the water. He'll be playing contently in the bath and every once in a while say, "bath." Even when his little hands are wrinkly and cold, and his little jaw is chattering, he doesn't want to get out. But all good things must come to an end sometimes and that includes bath time.

Our next clinic is Monday, along with another xenopax infusion. I'm anxious about the infusion because now that he doesn't have his PICC line they have to put an IV in somewhere. I'm thinking about just having them put it in his head again because that seemed to be the easiest and the less traumatic for him. The clinic appointment will be a breeze because we are not seeing any physicians, just the nurse so that he can get weighed and have his blood pressure taken. Simple.

I'm hoping that we are in the home stretch and will receive the go-ahead to return to Reno. At this point everything is going very smoothly and as long as Joaquin continues to do so well, we are on our way.

p.s. ~ Anyone who is interested in finding out how to donate to Joaquin's fund can check out www.cota.org and go to Joaquin's patient campaign site. Thanks to all who have helped out!

Good Times, Great People

2006-10-16T23:33:00.000-07:00

What could be better than spending a beautiful, sunny, slightly windy October Sunday afternoon with all of your closest friends and family? Not much more except hearing some great music, raising money for Joaquin and awareness for organ donation!

I'm almost at a loss of words (if you can believe that) as to how I can express my deep gratitude and appreciation to everyone who took the time to come down to the Great Basin Brewing Company to support us. Thanks to all of your donations we raised $3,434! Everyone is very pleased with how well everything went with it being the first fundraiser. And all of the credit goes to our fabulous friends and family: Meredith, Ryan, Aaron, Kelly, Mitchell, Bob, Bobbie, Jenn, Brooke and everyone else who helped in putting things together. Also, a thank you to the Great Basin Brewing Company for being so gracious in lending the space and the hospitality. And we can't forget the bands who made it out: Sol Jib, Native Root, Frame of Mind, and Anthony Postman!

We packed up Saturday morning and left after I dropped Grandpa Johnsen off at the airport. While I was doing that, Mom took Joaquin to the hospital to get his blood drawn. We arrived in Reno around three o'clock. One of the things I miss so much about being away from home is our family potluck-style dinner so of course I wanted to round everyone up to get together for dinner. We made lots of yummy food and there was lots of great conversation.

Sunday morning we slept in a little and after we got dressed we loaded into the car and drove down to the Great Basin. The festivities were supposed to start at two o'clock, but things didn't really pick up until around three, which was fine because the Great Basin didn't mind that we ran over the four hours that we had originally planned the event for. It was scheduled to run until six, but Frame of Mind didn't end until ten o'clock.

It was so wonderful to see all of my friends and family there supporting us and listening to the music. There was a couple there that had read about Joaquin from a flyer that was hung up somewhere in Truckee and came down to support us. It was hard to believe sometimes that this was all for Joaquin and it was humbling to see all of the love and support from everyone.

I am so ready to come home. And being home for that short amount of time really makes me realize how much I miss my home and my friends and my family. But I think it's great that I am able to spend so much quality time with my Mother and that is one very positive aspect about being down here for so long. We both have time together and he is able to spend time with and get to know her grandson.

So we had to leave very early this morning to make it back to Palo Alto for clinic. Although we didn't have a set appointment - which can be good for it's flexibility aspect but bad for the amount of waiting it sometimes involves - we still wanted to be there before noon. One of the question that I wanted to ask in clinic was when did they think that we would be going down to just one clinic appointment a week, which is usually what happens after one month post-transplant. Amy, the nurse, usually writes down the questions we have that she can't answer so that the doctors can respond to them during their (brief) visit.

Dr Sarwal was the physician among many physician on any given day and any given rotation that came to see us. She asked how much water or fluids would Joaquin drink. I told her that I wasn't too sure but that before the surgery he was drinking a fair amount. I said that I would know better once he wasn't on 24 hours hydration.

And apparently that's what she wants to find out as well. We are trying out a new formula to bring down the potassium until the Prograf dose is lowered and we are also just hydrating constantly over the course of about 12 hours or until he gets 1 liter of water and then it's up to us how he gets the other liter. He can have juice, water, milk, etc. We are so excited about not having to be on 24 hour hydration because he's getting to this point where he wants to start walking and he's really mastered his crawling skills and it's hard to follow him around with his feed pump - not to mention annoying because it pulls on his face. We had been told by Cathy that he would have to be on constant hydration for the first year after transplant but then she ended backing that down to three months. I think that she would just rather over-estimate the amount of time rather than tell us a shorter time, and that's understandable.

Also, our next blood draw isn't until next Monday! The last one he had was Saturday, so that's over a week of no pokes. Our next clinic appointment is next Monday and that will just be a nurse visit, no physician until the following Monday. While Dr Sarwal was telling us this, Mom and I are sneaking glances at each other and when she leaves the room and it's just us and Joaquin we start giggling and have group hug with Joaquin in the middle.

All of this was sprung on us so quickly but I love it! This is just leading us closer to home. Our exact date of expected "discharge" from the RMH is December 4th, but Mom has to report home to the resume her teaching duties in the middle of November and I've also (not so) secretly hoped that we might be able to move back to Reno by Thanksgiving. If we aren't allowed to leave at that time I think we would just make the trip up there, but that's only about a week or two until the scheduled date. It's mainly up to Joaquin and his continued healing - as long as he keeps doing as well as he's done we might get to come home early!

These are just a few of the many photos taken yesterday. If anyone has any more they want me to put up or link to just email me at mjohnsen@rushmore.com - Thanks again to everyone for making it a memorable and wonderful weekend! We love you all!

Road Trip

2006-10-13T00:01:00.000-07:00

This weekend we are making a trip to Reno to attend Joaquin's fundraiser. We got the okay from Dr Alexander today at clinic and he didn't seem reluctant or concerned about it at all. We will do our labs Saturday and then not have any until Tuesday. Two whole days without labs! But it won't be the first time because we don't have to do labs tomorrow and we didn't have to do any today - all we had was clinic.

Clinic was uneventful - which is always a good thing. They made a few changes in his formula mixture and are talking about changing the type of formula he is getting. His potassium is a little on the high side, which is something we've always struggled with pre-transplant and apparently now post-transplant, but the two are unrelated. And I was confused as to what it meant that he had high potassium post-transplant because it was my understanding that once he was transplanted we wouldn't have to worry about this stuff. Amy wasn't helpful in clearing up the matter when I asked her, but today in clinic Dr Alexander explained that this was caused by his Prograf.

In the beginning of post-transplant life, Joaquin's on higher doses of anti-rejection medicine. After a certain period of time they back off on how much anti-rejection medicine he receives and when they back down on that, his potassium issue should clear up. Apparently, the kidney does not know how to properly deal with potassium when it's simultaneously dealing with larger quantities of Prograf. I'm sure that will come in the next few months along with other changes. Around the 100 days mark, we stop giving other medicines as well such as the anti-viral medicine. I think that by around the six month mark he will be down to just two medicines that he will take the rest of his life.

This week we took my Dad to San Francisco to see the city and to let him indulge in seafood. I had originally enticed him with the clam chowder in a bread bowl but he also had some crab cakes and his favorite: fish and chips.

Today we drove out to Half Moon Bay to just visit the beach. I found the beach that we had frequented last summer but this time you couldn't walk down to the beach because apparently there were some seals that needed to not be disturbed. So we enjoyed the view from the top of the cliff until the clouds rolled in, covered the sun and chilled our bones.

Saturday I will be dropping my Dad off at the airport so that he can fly out by 10:30 a.m., meanwhile Mom will be taking Joaquin to get his labs done after which I will swing back through to pick them up and then we are on the road! And I'm pretty sure I can speak for Joaquin when I say that we are so excited to see everyone!

PICC Line Woes

2006-10-09T23:53:00.000-07:00

I found myself wondering today why we couldn't just catch a break with all this PICC line troubles. Joaquin was scheduled to have his xenopax infusion at 7:30 a.m. and when I went to flush his PICC line last night before bed I noticed that fluid was seeping from underneath the dressing. No good. I was hoping and praying that it would work but knowing deep down inside that wouldn't be the case. I just knew that it had finally bitten the dust.

And I was right. We had one fleeting glimmer of hope that it was flushing properly with no fluids seeping out but then we saw it. The nurse called the PICC team to come down and look at it. It was the same nurse who had dressed it before we left the hospital after our last visit - her plan was to undress it and then try and pull it out a little. Her thought was that perhaps a little fibrin - which is the body's natural defense to foreign object and forms a coat over the object to make it more like the body - was causing the problem. She thought that by pulling out the PICC line a little bit (because we can't push it in for concern of contamination and infection) it would loosen the fibrin and allow the PICC line to work again. Or, the other problem could be that his vein is just shot. The later turned out to be the case. Around noon the PICC nurses came down to remove the PICC line and place an IV so that Joaquin could receive his xenopax infusion.

I didn't know that it would be so difficult. The tried twice to place it and both times they had no luck - his veins were just too small. They called Dr Wong to tell her and when she arrived we had to discuss the possibility of another surgery to place a better PICC line that would be performed by surgeons but would also involve anesthesia. Chris and I had discussed this before because they mentioned it while we were in the hospital last time. We had decided that we did not want to have the surgery. Joaquin only has about five or six more xenopax infusions. He's also at a point where his Prograf is remaining steady (yay!) - which means less blood draws. But the problem with placing an IV so that we could do his mandatory and very important xenopax infusions could mean we might have to consent to the surgery.

The nurses had been eyeing the veins in Joaquin's little head. They thought that they saw a good one along the side of his head. Dr Wong left and said that if they could place the IV today then it would be two weeks until the next infusion and then we could discuss our options again at that time or if it was not placed today then they would go ahead and start making the arrangements for the surgery.

After Dr Wong left the PICC nurses turned to me and asked what I wanted to do. I asked them if they felt confident in trying to place the IV in his head and if that was a good shot. They felt like it was although she said that she is never too confident placing IV lines in little guys like Joaquin. She said that parents just didn't usually like seeing their kid with an IV in their head! At that point I didn't care because the IV would be out in about an hour anyway so no one would even see him. I said that we would give it one more shot and if it didn't work we would be done. And we finally caught our break. They were able to place the IV line and he was able to receive his infusion. I wish I would have had my camera with me because they had to put a little mesh cap-looking thing that was open at the top which made his hair stand up. He looked so funny! If having an IV in Joaquin's head means no surgery, I think I can deal with the minor aesthetic aspects of it.

After he was well on his way to be infused, Dad and I left to go find some lunch. When we got back Mom said that Dr Alexander had been in and he asked about the PICC line and Mom said it was out and he said good. He felt like we would be able to get by without another PICC line as long as they could get an IV. Like I've said before, it good to hear Dr Alexander say that because he's one of the main doctors on the renal team, very experienced, and only has Joaquin's best interest at heart.

We arrived back to the RMH late in the afternoon feeling relieved that we had mad it through the day without having to schedule surgery. Now it was time to await the blood test results from this morning's labs. It's like I would love to relax and feel good about everything but we also had to see if his Prograf level okay. And it was... So we don't have to have labs drawn tomorrow!!

Tomorrow we plan on driving up to San Francisco and go to Fisherman's Wharf. Dad has never been there and Joaquin wants to go bark at the sea lions. I also enticed Dad with the prospect of clam chowder in a sour dough bread bowl. He's never been to Fisherman's Wharf or San Fran except to fly in and take a bus to Palo Alto last summer. And then Chris is driving down tomorrow with some friends to go to the Roger Water's concert at Shoreline Amphitheater in Mountain View, just a few miles down the road from Palo Alto. We received the tickets from a friend as a wedding gift and we are looking forward to it and spending some time during the week together. Grandma and Grandpa are looking forward to babysitting!

Joaquin's COTA fundraiser

2006-10-09T00:37:00.000-07:00

Half Way There

2006-10-08T23:40:00.000-07:00

On Thursday we arise on a cool October morning in Palo Alto and drive ourselves over to the hospital. His procedure is scheduled for 8:30 a.m. and that means we need to be there at 7 a.m. We are on time and they take him in right around 8:30, after which Mom and I go find some coffee for Mom and hot water for my tea. I have an appointment with Dr Concepcion at 10 a.m. over at Stanford, which is connected to the children's hospital. I arrive a little early and am in my room waiting to see the doctor right at ten.

It's a good thing I brought some reading material with me because I ended up sitting in that room waiting to see Dr Concepcion for around two hours. One of his fellows came in and asked me a few routine questions like, how am I feeling? any pain?... Good. Not any pain. Fine. So he says that Dr Concepcion will be in shortly. Well, some how Dr Concepcion thought that I had already left. I don't know why I didn't go and find out if he was coming to see me sooner because I must say I felt a little foolish waiting for so long and not at least asking! Dr Concepcion came in apologizing and I couldn't help but accept it because he is a nice man and one of the doctors that I really like and respect.

I was thinking all the while that I was waiting on the doctor over at Stanford that Joaquin would be done by the time I got back. The anesthesiologist had told us that it could be as short as 45 minutes or as long as 2 hours. I'm thinking that he would be in and out quickly - but I was wrong. By the time I got back there it was close to noon and he was still unconscious from the drugs he was given to go to sleep for the procedure. I could tell right when I walked in that something was not right - I looked to my Mom for assurance and she said it was alright, but I didn't really feel like that. All of a sudden nurses were swooping in and around him - one was waving an oxygen mask in front of his face and that was making him very angry because he was disoriented as he was coming out of his sleep. He was very agitated and I kept wanting to hold him, but his oxygen saturation was going down and things were getting a little scary because the nurses are moving faster and Dr Alexander is hovering near the bed.

What had happened was that during the procedure, Joaquin's blood pressure dropped, which is completely normal for anyone who receives anesthesia but not a good thing for kidney patients because that means the kidney is not getting enough blood flow. So to bring his blood pressure up, they pump him full of fluids (around 750 mLs) which caused him to be fluid overloaded. It does not take long for the body to absorb fluid, but it takes longer for it to get rid of it. And when it gets the lungs, it can take even longer for it to be taken off the lungs. They had medicine that they give for the body to release the fluid. So, Joaquin's lungs had too much fluid on them and he was having a hard time absorbing air.

Joaquin is very mad and agitated at this point and so they want to give him morphine - which I am against. He's already been given drugs to be put to sleep and I just want his body to get rid of those drugs and for him to wake up and they want to put more in him! After a while it becomes apparent that they're not going to leave him alone and so he's not going to settle down and he gets the morphine along with another sedative. And that helps and he settles down, but he's still not saturating that air and so they give him a nasal canula - which is a little thing that goes in the entry of both nostrils and pushes air into his body. It doesn't bother him too much and his stats are looking better. But now he's out. After that I break down and a little and asked the nurses how scared I should be because I'm scared! Is he going to be okay? They assure me that he's going to be fine and that this not too uncommon to see - which makes me a little more at ease.

Dr Alexander was confident that he would bounce back and that we wouldn't have to be admitted to the hospital but that he wants him to stay in the PACU for a few hours longer even though the PACU likes to push it's patients out in around an hour - that's what it's designed for: to monitor that patients until they come out of their sedation. I felt good that Dr Alexander was okay to let him go home because he's a pretty conservative doctor and it doesn't matter what I want as far as being admitted to the hospital - he wants what's best for Joaquin and I couldn't agree more. Dr Alexander comes back a few hours later and Joaquin's still not able to keep his own saturation up without the oxygen and so we get the dreaded news: He's going to be admitted.

I call Chris and tell him the news and he's as upset as I am. The thing about all of it is that it could have been prevented had the nurse who put the dressing on incorrectly not have tried to do something that she clearly did not know how to do. Chris decides to take Friday off of work and to drive down to Palo Alto that night. Meanwhile we are waiting for our room on 3West but at the rate at which the hospital works I know we could be waiting in the PACU for hours - which we did.

Around 8:30 p.m. the nurse shut his oxygen off - he was doing fine by himself. They left us alone for the most part and we knew we would be released the next day. I ended up talking to the charge nurse about what happened and just explained to her that my purpose was not to be revengeful but that I just wanted to make sure that this didn't happen to anyone else - or us for that matter. Changing a PICC line dressing is too big of a deal to let just anyone or any nurse change it. I told the charge nurse that I would like to file an incident report. All of this would have never happened and shouldn't have happened.

Oh, and to top it all off, they were never able to place another PICC line. He will either have to have another surgery to place a different type of PICC line or he will have to be stuck with a needle. Luckily, Joaquin's Prograf levels have been steady for over a week now and generally the second month the patient goes down to two blood draws a week versus every day. So I feel like he's at that point. Plus, Chris and I are vehemently opposed to having surgery done because of what happened and what could easily happen again. So hopefully we will keep seeing steady Prograf levels! We are about half way through out 100 days - tomorrow is 6 weeks from the day of transplant!

Saturday Grandpa Johnsen arrived and we picked him up from the airport. He's been helping Mom change diapers. What about me helping with diapers, you ask? Well, when you donate a kidney then you don't have to change diapers either!! Mom and Dad bought Joaquin some very nice clothe diapers as well. We are going through a lot of wet diapers right now and so it's nice to have clothe diapers instead of buying them all the time.

Chris's parent arrived Friday shortly after we were released from the hospital with Grandma Joanne. We all ate a big roasted root vegetable dish with quinoa and salad made by the wonderful Chef Chris. They were taking Grandma Joanne up to see her sister in Antioch, California and so they stopped by again today to visit. So we've had lots of visitors this weekend, but we love it!

Joaquin's been coughing a lot, but not running a fever, and also has a runny nose. I talked with the doctors today but they don't seem worried as long as he doesn't have a fever. If he had a fever they would be worried that either his kidney was rejecting or that he would be dehydrated. We tend to think that it's because he's teething. He's got about six little teeth all threatening to pop out of his gums at once. He seems as though he's feeling good besides the coughing. We also think that it might be from all the water that was on his lungs. We are hoping to make it up to Reno this weekend for Joaquin's COTA benefit which all of our lovely friends and family are helping to put on.

This whole experience the last few days was hard and frustrating because it never should have happened. Another very frustrating aspect of it all was that everyone in the hospital that I spoke to about it didn't seem to be listening to me or didn't care. Only Dr Alexander asked if there had been an incident report filed. It's tough because I don't feel like I should have to divert my energy into an incident report because so much of it is used up by just this whole experience. I don't want the nurses on 3West to be angry with me because I don't want Joaquin's care to be anything less than exceptional. I just feel like this experience with the PICC line is very symbolic for how hospitals and western medicine handles health care: instead of taking the necessary steps to prevent, it only deals with the aftermath. Treat the symptoms instead of finding the root of the problem. Sometimes I felt like I should jut let it go because it's already happened and there's nothing I can do about it now. I guess I just feel like people should be held accountable and responsible for what they do, even if it just means that nurse realizes what she did wrong and hopefully she will know how to do it right the next time after being properly trained or just not doing it all.

Climbing the Mountain

2006-10-04T15:01:00.000-07:00

At a distance a transplant can seem like such like such an overwhelming event especially when the outcome is not certain. I don't think that a person realizes how good life can be when your body's organs are all working and doing their part until they are on the other side of the figurative mountain. For me and my life experiences, when I saw something looming in the distance and I had to prepare for it - it was like, how is this going to work? Am I going to be able to do this? It was similar to preparing for a natural childbirth and comparing it to climbing a mountain. Standing at the bottom of the mountain looking up can look pretty daunting and one questions whether or not it is possible, and if so, how? But once you're are doing it or your in the midst of it, suddenly you look around and you're doing it. And before you know it, you've climbed the mountain and your looking down or looking back on what you've just done and you think, that wasn't so bad. Hindsight is 20/20. I always think about when we will be home and looking back on this time.

Yes, there are scary times throughout all of this - every little sniff or sneeze or cough I hear Joaquin make causes me to worry whether or not he's catching a cold and will have to hospitalized or worse. I have to admit that my severe resistance of the hospital has deminished and I think to myself that if we have to go back, we have to go back and we can do it. I'm not sure whether or not it's a good thing my hospital tolerance has gone up. Sometimes I feel like my strong repulsion was what kept us out of the hospital the whole year he was on dialysis, but I also realize that that sounds a little silly.

But throughout all of the what-ifs, rejection warnings and precautions from the transplant team, I have begun to see how good transplantation is for those who need it. For as much as I honor the cycles of life, such as death as a natural occurrence, I also have found a deep appreciation for what the medical institution can do for people who need a properly function organ.

There are two teenage boys staying at the RMH - one who has had a heart transplant and one who received a kidney transplant. The other day I was outside with Joaquin while he was playing in his little red car and my attention was caught by the two boys playing catch with the football near the back of the house in the play area. Two boys who before their transplants didn't feel good and probably couldn't have played football even if they wanted to, and now they're out running around. Despite the medicines and the doctors and the hospital, these people have a new lease on life and I am continually amazed at how well all of the children who have had transplants at the RMH are doing. I've always said that I wanted to be an organ donor if anything should happen to me, but I never really understood what that means to the people who really need that organ.

Tomorrow we are scheduled to have Joaquin's old PICC line taken out and another one placed at 8:30 a.m. in the PACU. I also have a donor follow up appointment with Dr. Concepcion whom I saw today while we were waiting to have Joaquin's blood drawn. He asked how Joaquin was doing and then asked how I was doing. I can honestly say that I'm feeling around 90% better now. I can lay on the side that the incision is on and I don't feel too much stiffness, although the area is still a little sore and numb. Dr Concepcion gave me an enthusiastic thumb up and proceeded on with his no doubt hectic day.

Here's a picture of Mom and Joaquin (yes, she really is here and not playing hookey from work and lounging poolside at some Club Med resort!). I just recently purchased this sling from another mama and Mom decided to take it Joaquin out for a spin in it. I swear that he's almost as big as her now.

The Waiting Game

2006-10-02T23:21:00.000-07:00

Today started out like any other day for us. We woke up and got ourselves ready to go to the day hospital to have blood drawn and then a clinic appointment afterward (remember we're doing Monday/ Thursday clinics.) We get there and the nurse tries to draw blood from Joaquin's PICC line and nothing comes out. Keep in mind that this is the same PICC line we've had all along and it's just been progressively pulled out each time (with the exception of the last time) he has his dressing changed.

So the nurse decides to give him a medicine to try and unblock the line. Before she did this she called the Home Pharmacy people, who change PICC line dressings, to come an change him. She administers the drug and we wait for the HP people to come. And we wait. And we wait a little more. The nurse had wanted to let the medicine sit in his PICC line for a little while - around a half an hour, so she comes back out to check it and says that the HP person is on her way down, that she just had to run upstairs to grab something. And another half an hour rolls by. At this point we have been waiting in the germ-infested day hospital and all Joaquin wants to do is crawl all over and put every little germ-infested toy in his mouth.

Mom and I take turns putting Joaquin in the stroller and wheeling him around the main floor in hopes of distracting him just a little longer while we wait. Finally she shows up and we are ushered into a room in the day hospital. The nurse takes one look at the condition of Joaquin PICC line and how far it's been pulled out and says that it's probably no good, which I don't doubt. I feel like that PICC line has just been hanging in there for dear life for quite a while now. So they decide to redress it anyway and then call the doctors to find out what they want. Of course that involves... You guessed it, waiting. Waiting for the transplant nurse (because our transplant nurse has the day off) to answer the page, waiting for the nurse to talk to the doctor, and then waiting for the transplant nurse to get back to the day hospital nurse.

So by the time they decide they want to do the chest x-ray to determine where exactly that PICC line is located, we've been waiting for about 4 hours. I'm a little upset about having yet another x-ray done on Joaquin. He's had so many and who knows exactly how numerous x-rays affects a person. But it needs to be done so that they can see where the PICC line is at and if they can salvage it.

Long story short - they can't save it and so we are probably going to have to have another PICC line put in tomorrow. That involves Joaquin being put under (yet again) general anesthesia. I don't like watching him be put under at all. But it's time for a new one. And the sad thing is that this could have been avoided if that first nurse had known what she was doing when she was changing the dressing on the PICC line in the beginning.

This weekend our close friends came out to visit, Aaron and Kelly, and we all made a trip to the beach. The coast was a bit cold, but there was a little sunshine and not many clouds. We had another "holiday" on Sunday - no blood draw. We've been holding steady with a dose of 3.6 ml twice daily of Prograf, so this may be the start of fewer blood draws and fewer clinics, which of course means that we're that much closer to going home!

Giving Thanks

2006-09-28T21:49:00.000-07:00

I've thanked everyone for praying for us and keeping us in your thoughts and prayers, but there's more going behind the scenes of the Kidneybeanboy productions. Currently a group of our close friends are putting together a campaign through an organization called COTA - Children's Organ Transplant Association (www.cota.org). It provides fundraising assistance for children and young adults needing life-saving transplant and promotes organ, marrow, and tissue donation. You can visit their site to learn more about them and if you click on "patient campaigns," and find Joaquin's campaign. We only recently got our campaign up and (not completely) running, but I feel so blessed to have the great team members who have graciously given their time and energy into raising money for transplant related costs for Joaquin. Meredith Richmond is the campain coordinator, Bob Beaudoin is the trustee, and Brooke Noel is the media coordinator. Many of our close friends are also involved - you know who you are. Right now they are working on throwing a raffle and a concert to raise money that is scheduled to happen October 15th.

So I wanted to take this opporunity to thank everyone who is involved in the campaign and thank them from the bottom of my heart for everything you've doing and everything that you're doing. It's humbling to ask for help from people but always know that we would and will do the same for them.

And my Mother, who has also been here to help both Joaquin and myself through transplant and even before transplant, when Joaquin was born. She's taken off the time from school to be out here with us, as well as travelling well over a thousand miles - which means she's that far away from my Dad, her Mom, and her friends. Thanks Mom. We really appreciate all you've done for us.

Today it has been one month since Joaquin's transplant. It feels like it's been a lot longer. At times I have to remind myself that we are done with dialysis. Like my Mom has said, it's like I'm disappointed that I don't miss dialysis more. It's not that I don't miss it, I guess I was just expecting this huge change or difference. I think once I've returned home to Reno then maybe I'll notice. We had a fire alarm go off Wednesday morning around 7 a.m. - someone's waffles got a little too hot and so everyone in the RMH was evacuated into the surrouning parking lots in their finest nighttime attire. I remember thinking at one point that had this happened a month ago or when we were here last year what would I have done because he would have been hooked up to the dialysis machine. I had always been prepared in the back of my mind for if something happened during the night while Joaquin was on dialysis - what would be our escape plan as far as getting him off the machine without risking infection. But thankfully that never happened.

Revival of the Purple Sling

2006-09-26T22:26:00.000-07:00

Early Monday morning we woke up to get ready to go to the hospital for blood draws and clinic appointment. The walk over to the hospital in the morning is always very nice because the weather is cool and I always feel like a brisk walk is a nice way to start my day.

The appointment was fine; nothing new, just a few medicine changes. He is on Lasiks, which helps him pee - and by the weight and swiftness with which he wets those diapers, he doesn't need much help. His creatinine has gone up a little bit, but they think it's because of the Lasiks. Every time we go in they back down on the number of times we give it a day. When we were first released from the hospital it was every six hours, then it was every eight hours, then it was every twelve hours, and now it is one time a day.

Monday we also had another xenopax infusion (the anti-rejection med that he's given over 9 different treatments in the day hospital). I don't know if you remember the last time we did the infusion - it was a nightmare. Well, this time they said that the infusion would take 15 minutes and then he would have to be observed for 30 minutes. I was a little shocked as I had prepared myself for the infusion itself being around an hour and I asked the nurse if this time was different and she looked like she didn't have any idea of what I was talking about. She said it's usually always like that. I don't know what was up with the nurse we had that day, but Mom said that she remember looking at the machine that was dispensing the medicine and that it would say that it had about 10 minutes left, the nurse would come in and mess with it and when Mom would look at it again it said 15 or 20 minutes left. We think she didn't know what she was doing.

Joaquin also had to have his PICC line redressed because it was just down right nasty looking. I walked into the room after talking with Chris for a long time and saw someone redressing it and I was about to remind them to please be very careful when I noticed that it was the nurse who had actually taught us how to care for the PICC line and I instantly felt at ease. And the thing is, she did it by herself when every other time I've seen it redressed there are two nurses there, one to change the dressing and one to hold Joaquin down. She did such a great job - she definitely knew what she was doing. Finally! We get someone who knows what they're doing!!

We are still riding the Prograf rollercoaster, though. His Prograf level has been steadily increasing and today it was way too high - 19.5 when they want it between 10-12. He was on 4mLs and I think that is too much. I'm betting that they'll settle right around 3mLs. Part of me wants to say that I feel like it will be 3mLs, but really what do I know? I have to figure they have a method to their madness.

Today I was talking with a mama who is staying here at the RMH with her teenage son who had a kidney transplant on September 11th. Looking at her son walking around I would have never guessed that it had happened so recently. She said that they were just going about their business on Sunday the 10th and that night they received the phone call from the hospital saying that they needed to pack for two months and leave in an hour. The next morning, Monday, he was taken into surgery. I talked to him a little bit about it and asked how he was feeling. He shrugged him shoulders and said he felt "good," and I asked if he felt better than before and he said he definitely did. Every day he is required to drink 4 liters of water over the course of 14 hours. She said the kidney he received came from a 220 pound man who was 6 feet 5 inches tall and that when he is standing up you can see the outline of the kidney through the skin on his abdomen. He's a pretty skinny kid, though, from a restricted renal diet. It was interesting to compare our experience with the mama of the teenage boy - similar except the age difference.

Every day it seems like Joaquin is eating more and more. Before transplant he would try things, but he would just push it back out. Now he eats and then swallows it! We are so proud of him. Last night he ate almost a whole polenta patty by himself and when we made burritos later he snacked on some refried beans and loved them! He was bouncing up and down in his high chair and pointing to the beans. He's also a big fan of Veggie Booty, Snapeas, crackers, bread, fruits, steamed broccoli... Pretty much anything. Whenever I go to the kitchen to grab something to snack on, he's gotta have something too.

Another minor milestone for us is that I've been feeling good enough to carry Joaquin in the purple sling. And I love it. The way that he sits on my hip and wraps his little arm around my arm seriously makes my heart melt. Tonight he was sleepy pretty early because he didn't nap too long this afternoon and he fell asleep in the sling. Even though he was getting heavy, I didn't want to put him down because it felt so nice to have him sleeping in the sling and to just have him that close to me again.