Trying to make sense out of the impossible

Ava is doing her own thing in the PICU today. She is sleepy. This is mostly because she is up at night. They plan on trying to start the CPAP trial again today. Every three hours, an hour on two off. She seems to have something going on in her left lower lung now. Maybe pneumonia, maybe not. She's still retaining some fluid. Not sure what that is all about. Could be the transfusion, could be something icky. They are going to get speech, OT and PT in. I was talking about that today and the Attending was thinking it too. That's all fine and good. In the same discussion the Attending informs us that it's very concerning that she does not require sedation while on the vent. We know this is a concern.

I am concerned with the notion that they are prepping us for some tough choices that we don't feel qualified to make. We don't have a definitive answer. We don't have much direction. I tried to page our contact at CHOP to see what is going on in their worlds. I would like to talk with our Neurologist so he can make sense out of this somehow. We know that there are more "experienced" places out there. But with a deficiency in complex IV I wonder why should we try? There are no answers and today it feels hopeless.

I can't even imagine a funeral for Ava or burying her. I am so not there. I so don't want to be there or have to try and . How do we decide what life is worth living? Eric made it easy for us to know what decision to make for him. I assume God will tell us too. Right now I feel like we are swimming upstream in a river of mud. And while we are trying to do that Ava's getting a little bedside OT/PT.

I do have to say on a little night sleep, we are not ready to deal with such an emotional blow. We will be fine. He is holding us. We just have to process and see.