Day by Day

A mama blogs the journey to transplant and beyond...

Monday, July 06, 2009

No News Is Good News

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.

Monday, June 22, 2009

Biopsy Tomorrow

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!

Monday, June 08, 2009

The Big Move

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.

Saturday, May 02, 2009

The Short Haul

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!

Friday, April 17, 2009

That's What Counts

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.

Thursday, March 26, 2009

Hospitalized and Released

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.

Monday, March 02, 2009

VCUG And Biopsy Update

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.

patio furniture store
patio furniture store