So we're back up at Primary's. Eden is now 5 for 5 this year. With a hospital trip in Jan, Feb, Mar, April and now May. She has had a fever for the last few days and her labs came back a little off, Bili is up and Sodium and Potassium are LOW. At first we suspected colangitis, liver infection, but we're not quite sure that is what is going on. So we wait. Her potassium has gone up this morning and her fever has come down with the help of some Motrin, and she is sleeping soundly right now. The only other concern is that her oxygen levels were dropping into the 80s and below last night as she fell asleep. So we sucked out her boogies, put her on oxygen and went down for some chest x-rays. She is now off the oxygen and her levels are staying in the 90s. Not sure what was going on there but glad she is off the O2. I was afraid for a second that it may become a permanent thing.
In the meantime we will meet with speech this morning and possibly do a swallow study later to figure out why she won't eat. I am excited about this because she is definitely interested in food but she just doesn't swallow it. It will be nice to have some answers hopefully.
Also, while she is here we are going to start some of the pre-transplant evaluation. I have mixed emotions about this, but I know of some many kids who are doing well post transplant and it will be nice to have her finally growing and doing well.