Any Progress is Good Progress

The last couple days have been filled with big milestones and new worries. Avelyn had her chest fully closed yesterday morning. This is a huge deal for our sweet baby. Her surgeon had to spread her chest wider than usual to reach her MAPCAs that were far out in her lung fields. Her chest gaped a good three inches at its widest point, so we were expecting a staged closure, meaning partially closing it then coming back a few days later for a full closure. We're happy he felt it safe to fully close but it does make her more fragile given she doesn't have nearly the same room in her chest. The full closure puts a bit of pressure on her heart and lungs, meaning she has to stay sedated for a few days to allow her body to accommodate to the change. Sedating her has been a feat in and of itself. She's built such a tolerance over the last month, that it's forced the providers to get creative with her pharmalogical treatment plan. 

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!