So I took Eden back up to Primary Children's yesterday to follow up after her hospital stay last week. Her liver disease is progressing, but I already knew that. We have to keep increasing her diuretics to keep the fluid off her belly, she is not gaining weight at all, and to top it all off her bubble echo showed she has veins running through her lungs so she is not oxygenating as well. This was only a problem when she was sedated, but now we need to monitor that so it doesn't become a problem.
The hope is that with better nourishment and weight gain her liver will kick in and do it's job. I know she is on the road to transplant, but just hoping to delay it for a little while.
Despite all this she is still a smiley, happy little girl.