Another complicating factor is that Avelyn's kidney function has been declining over the last few days. It's due to her change in physiology mainly. Now that she has working tricuspid and pulmonary valves and a mostly closed VSD, her venous pressures are going up. This is causing her to get some ascities or fluid collection in her belly. I talked to her doc this morning, and won't go into the physiology of it all, but supposedly this is an expected occurrence. Her vessels should accommodate to the increased vascular pressures in the next few days and stop leaking as much. When that happens her kidney will naturally get more perfusion and regain function. Until then she'll be getting fluid replacements to try and rescue kidney function before her kidneys are actually damaged. She has a drain in her belly to drain off the fluid that collects in the paratenial cavity. This drain prevents a build up that would cause increased abdominal pressures and in turn increased thoracic pressures.
Another gigantic milestone for today is she'll restart feeds. It'll be very slow, only 5 ml an hour through her feeding tube past her stomach and into her intestine. The feeds will allow her body to recultivate her natural biotic flora and prevent intestinal infection common for folks on high doses of
Vanc, like c. diff. Hopefully she tolerates the feeds well and can have an increase in the next few days.
So that's the plan and happenings for now. We're proud of how well she's doing but all the changes make us uneasy. She has a long way to go and hopefully she continues to improve.
Best wishes to all of you! Thanks for the thoughts and prayers!