Update

Soon after I posted on sat. evening, Avery ended up going to the ICU bc his blood pressures were very low. This has only happened in the past when he has been septic. With having a central line that is always a concern. Thankfully overnight fluids corrected the problem. They started him on a couple of IV antibiotics and he seemed improved by Monday. So I was feeling like this was gonna be a really quick stay. Silly me, things are never that easy. Turns out we have a few things to work out before going home. Firstly, his weight has dropped quite a bit so the first thing they adjusted to his TPN but now his labs are showing that maybe he is using a lot of his energy to breath and is burning a lot of calories. Therfore,he dries out very quickly which makes his respiratory secretions really thick and difficult to manage. The curveball is that in most kids you give them extra fluids and problem is solved. But in Avery's case, the fluid does not always go where it should and sometimes goes into his lungs so there is a fine line and not something I'm comfortable doing at home. Also he is requiring more hours of bipap due to his fatigue but they are finding his blood pressures are dropping overnight and his blood gases are low. Not sure how the bipap affects his blood pressures but it is. All of his cultures have come back negative and yet he is presenting like he has a bacterial pneumonia. So they are treating him that way with antibiotics. So I want to make sure these things are resolved before taking him home otherwise we will be right back here. He is able to move to the step down unit but there are no beds. I'm sure he will be there as soon as one opens up. Hoping the boy doesn't have any dramatic tricks up his sleeve and we can get out by the end of the week. I will keep you posted.

Oh and some good news, Make a wish approved a full-time nurse to we are all going in the fall. I'm nervous as all heck but I hear it's so worth it.