Day by Day

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

Tuesday, November 25, 2008

Happy Thanksgiving!

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.

Saturday, November 01, 2008

No Rejection!

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. 

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