Ananya developed massive ascites about 4 days after the liver transplant. Ascites is basically fluid that accumulates in the abdominal cavity. After transplant some fluid is expected - not the amount Ananya had. She weighs 18 pounds and was having about 2 pounds of fluid leaking into her abdomen daily. After transplant 2 drains are left in the abdomen. The main reason is to allow early diagnosis of operative complications like bile leak or bleeding. In this case we escaped those complications but did get a relatively uncommon complication of massive ascites.
Massive ascites is usually a manifestation of end stage liver disease and is not a pretty sight - the belly gets massively distended with fluid and the short term fix is to use a needle
to drain the fluid. Ananya had some drains already so she just kept pouring out of them. Along with this she stopped making urine b/c so much fluid was going into the abdomen. Also her fluid status became difficult to manage - she needed fluid to replace everything being lost in the belly but giving her more fluid means more fluid goes in the belly, the lungs - basically every where but where the fluid needs to be. Ananya was listless, tired and looked awful which made me terrified. The primary caretakers on the floor are physician assistants who are the eyes and ears of the transplant surgeons. They are v. Good but its a tad disconcerting feeling that your daughter is decompensating and there are no doctors around. Suffice it to say, I was highly stressed and wanted decisions made now by a doc before my daughter got worse. Too many times in hospitals I see bad things happen to patients b/c no intervention is made when the patient first starts to demonstrate warning signs. So as my daughters oxygen levels are dropping probably b/c of fluids we're giving her the solution IS NOT to just put her on oxygen.
When the transplant team did get up here Ananya was looking a little better but still cruddy. The team said that ascites sometimes just happens and it would get better on its own. Actually massive ascites does not happen frequently - docs would rather pretend to know what's going on than admit they're not sure. I was not sure if we would be able to support her through this b/c managing fluid status is so difficult and its not difficult to send someone into kidney or respiratory failure. So when told that rejection was a possibility, I inquired about empiric treatment of rejection (w/ steroids) followed by a biopsy later in the day. If the biopsy definitely ruled out rejection the steroids could be stopped. They said it was pretty low prob that it was rejection w/ liver #'s looking so good. So the biopsy happened the next day, ishani continued to leak out but seemed to be holding her own. (still looking cruddy) the results came back at 5 pm the same day - it was rejection. That was yesterday - she's now on steroids and we're hoping she responds to it......