Saturday

Ava is now settled in for the day. When we got here she was not herself at all. She was unsettled. Her heart rate was the highest we've seen it. She was all sweaty. She was uncomfortable and would cry. It seems her NG tube was not in the correct place. So once that was discovered and replaced she seemed to do some better. She was still uncomfortable though. oh, and she lost a little weight too. (Ever so slight but it's still not great. Understandable with being sick again).

Well, as it turns out, Ava definitely has pneumonia. Her temp is up and is now on antibiotics. She is actually a little more comfortable. But she looks like she doesn't feel good. The Attending thinks this is something she can help Ava get through. Tomorrow we will know the infection and see from there. For now she is on a 7 day antibiotic course.

I was talking with the doctor today about how I just don't get it. Eric was spilling over himself. He had no energy and he just gained weight. Ava, who seemingly has no energy, is burning calories faster than they are put in. It's the opposite. It makes no sense. The Attending and I are thinking a conversation with CHOP is in order on Monday. Our Attending also thinks that Ava may need to be transferred there. (Of course it did take 11 days to get a bed last time, so who knows how that will play out.) We don't know what we want to do or what is best for Ava. Or if we are going down a rabbit hole. For now, we are going to have to see what the rest of the weekend holds and how well so responds to her antibiotics.

I just wish there was something that I could put in her formula to help her get bigger and stronger. It's already rocket fuel formula so I guess that won't work.

Through all of this, we feel peaceful today. It's nice. We'll go with that for now.

Have I mentioned what a little fighter Miss Ava is?