Kai had another appointment with the liver team today. His bilirubin level went up very quickly over the past week. They were less concerned with his liver enzyme levels and his general demeanor (varies between easily amused and laughing hard enough to poop his pants). But all things considered we need to plan for the worst and hope for the best, in his doctor's words. Since he is currently too small for living donation, he is going on the transplant list. We meet with the transplant coordinator tomorrow and begin his work up to go on the list. We will know more of the details tomorrow.
remember being told the same thing....he'll also grow which may enable living donation in the coming months too. my heart breaks for where you are. yet on the same hand are happy for the many amazing experiences you can have and the amazing people you can meet if you seek them out. good luck we will be here following and supporting all the way to the finish line!!
ReplyDeleteWe are thinking about all of you and sending loads of prayers, hugs, and positive thoughts Kai's way!!!
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