What a week we've had. It started with the news that my grandma passed away. She had been sick for some time so it didn't come as a surprise but still sad news. She was loved and will be missed.
Before we could head up to Idaho for her funeral on Friday though we had several appointments for Eden at Primary Childrens' on Wednesday and Thursday to complete all of her pre-transplant evaluations and education.
Wednesday consisted of Transplant Education, Dr Book (liver dr), Pharmacy, and an EKG.
Thursday; Infectious Diseases, labs, Financial, Pediatric Surgery, Social Work, and Living Donor Education.
The conclusion from all of these appointments is that once insurance approves, Eden will be listed for transplant. It seems that although her Kasai was successful in restoring bile flow from her liver, her liver is still struggling. It is wonderful that her Kasai is working it has given us more time, but it also means her PELD score will not be as high because the PELD scoring system is in part based on bilirubin levels. Which means that she will likely not get a cadaver liver until she is much sicker. So I (Erica) am beginning the process to be tested to be a living donor for her. Hopefully all works out so she can get a new liver before she gets much sicker and it is harder for her to recover.
To top all of this off we have to head back up to Primarys tomorrow to have the fluid in Eden's belly tapped to check for infection. She has been having mild fevers on and off for a while so we will be checking it out. the fevers could also be due to fluid pressing on her lungs or the rash she has had for three months now. We will see.