Day by Day

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

Wednesday, November 29, 2006

Home Sweet Home

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!

Friday, November 24, 2006

Happy Day of Giving Thanks

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.

Wednesday, November 22, 2006

Packing Up

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.

Tuesday, November 21, 2006

Catching A Break

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.

Wednesday, November 15, 2006

Bumps in the Road

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.

Monday, November 13, 2006

The Long Road Home

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.

Thursday, November 09, 2006

On The Same Page

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.

Wednesday, November 08, 2006

Walking Joaquin

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.

Monday, November 06, 2006

Drawing the Line

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.

Wednesday, November 01, 2006


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.

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