Post Transplant Updates
One of many milestones :) one whole week post transplant and our little guy is doing so well!
He did come down with his first (of many possible to come) infection and spiked a fever. They treated initially with two different antibiotics, while they wait for blood culture results to show signs of certain bacterias. His cultures were negative for some really bad bacterias, so he is down to only one antibiotic now :) knock on wood his fever hasn't come back. The downside to being sick on top of the transplant is the lack of energy....just like if you or I get sick, all we want to do is lay low in bed. But there are some big physical setbacks that happen so quickly, especially with the little babies. Jace was only inactive for 1-2 days, and his muscles significantly weakened. We are working with physical and occupational therapy to maintain his strength throughout the transplant period, both in patient and out patient.
He also is able to manage his pain better from the mucositis, now that we are caught up to be proactive instead of reactive, he is much more comfortable. It's got to be one of the worst pains....the nurses compare the pain to s canker sore, but imagine them all over and down your throat, all the way down to the bum. On top of that, his GI tract is secreting mucous, which is very difficult to swallow with a sore throat. The pain meds help this tremendously so he is able to still nap and sleep through most of the night.
Today is he first day he has really been able to play, not only in his bouncer, but on his play mat. We are taking advantage of the times he feels good, and continuing to push onward with the usual baby milestones.
He is down to only one small chemo dose left and then we are done with chemo! His sweet little head of hair is starting to fall out already....it's like having a cat shedding all over the place! I totally understand why patients shave their heads so they just get it all gone at once.
Back to play time!
Andrew, Becca and baby Jace