Thank you to everyone who has followed Evelyn’s story, prayed for her, and has supported our family. Currently, Evelyn has been admitted for increased ammonia levels, a bacterial infection in her blood, and ascites (fluid in the abdomen). 

This morning they drained almost several ounces of fluid from her abdomen. Hopefully this provides her some relief. The fluid is being sent it off to check for potential additional infection in the fluid and to see the makeup of it which would give them insight into what’s causing us, liver function, etc.

Her liver team has is going back and forth on Evelyn’s condition lately. They meet weekly on Thursday and will be discussing Evelyn’s case further. We commonly here that “Evelyn doesn’t present like normal cases of BA” (lucky us) so it’s hard for them to pinpoint what is happening, why she’s been so sick and irritable, and why she keeps getting recurrent infections. 

What is odd is that her liver numbers are great, meaning the kasai surgery she had in December is working and the bile is draining out of her liver. Her labs and liver numbers keep her lower on the transplant list. They’re going to discuss petitioning the board for more exception points to put her further up the list. 

A couple weeks ago we were told she wasn’t ready for transplant and we’re hoping we could hold off but now there’s concern that liver transplant may need to happen sooner because of the risk of repeat infection is greater than the risk of transplant. Nothing definite yet but hoping yo know more later this week. 

Please continue to share our story and help us raise $75,000 for COTA in honor of Evelyn! Anything you can give will help.