Reece had a steady day today. The doctors feel he has plateaued a bit, but considering how sick his lungs are right now, they are not surprised. He continues to rest on the ventilator. He looks much more like himself, which is good. Although, as a parent, it is almost harder now that he looks like himself because you actually see your child lying in the bed. It makes it even more real to see him true to form. Nevertheless, with the help of Prisma (the 24-hour dialysis machine), he is able to keep his fluid status down, which assists with breathing and weight management. He went back on Prisma after his body reacted adversely to the dialysis machine that only runs over four hours. Since Reece is sedated anyway, it makes sense to use Prisma as it is much more gentle on the body and they are able to balance his fluid input and output more effectively.
Reece’s lungs are quite sick from Adenovirus. The Infectious Disease (ID) doctors find this to be the most concerning disease in his system. While he tested positive on two different types of fungal cultures, his CT scan of his lungs does not indicate shapes and formations of fungal infections (although they could still be in there as well). I’m not sure ID added any information to the mix that we didn’t already know.
It’s actually quite interesting–for lack of a better term–to work with many different consulting doctors from various functions. Renal, pulmonary, ID, PICU, wound care (nursing), respiratory (techs)–they all have a different take on things. They all show up with various information and at various times. We have learned to continue to take the BMT docs words as a way to stay focused on the bigger picture of Reece’s health. Certainly, the BMT docs consult these various doctors for their specialized knowledge. But the BMT kids are a very special group with many underlying needs. Until BMT (and now we also feel we are part of the “PICU family”, so we place a heavy weight on their words) weighs in, we don’t try to get to spun up over the details relayed by these specialty doctors or we would be having meltdowns every day. I think the best thing to do is to not get lost in the minutia of every day, but rather try to take a step back and look at the larger picture. That is what BMT is doing. That is also why I am not blogging a play-by-play here every day. If you look at Reece’s body, he doesn’t look like a healthy child, but his body looks peaceful. That said, he has lots going on inside that little frame of his. We have to trust that the doctors and nurses, for the most part, have the details covered. We have to keep looking at the bigger picture of overall health to understand how Reece is really doing. Right now, he is doing ok. He has a long way to go.
Every time we run into someone who is from the BMT family (docs, nurses, other staff), they ask how Reece is doing. That’s a tough question. How does one answer that? Ok? Decent? I know they are concerned for him, but when your kid is in the PICU, it means he or she is not well. The truth is, he has good moments and tough moments. I don’t post it all because it would take energy that I don’t have to hash it all out. But regardless of outcome, we have a long and painful road ahead of us.