Day 388 - An extremely frustrating day...

Ava had a normal night since she was paralyzed. Her gas was actually 44 and twice we got 53 today. She was on 55% O2 but she had to go up to 60%. They think she is getting better because her lung and tummy looks better. But she needs 60% O2 instead of the 50% yesterday would tell me that answer is a no. Surgery would also not clear her tummy so she can have foods because she has not stooled yet. She is getting IV fluids, but I don't believe that would help her to stool. Food would help. She will be going 4 days without food tomorrow.

I am actually sickened by the lack of knowledge that the doctors have about Ava. I told them that she has been having problems exhaling since Saturday and the only doctor I spoke to today had no knowledge of that. Of course I find out the doctor is off tomorrow and done with her week today (since she is off). She had no answers but kept going between her tummy being extended to her left lung being slightly collapsed. I am very disappointed that they are not trying to find out more or just try and change the trach. It is due on Friday for a change. There is no reason not to. We are not finding out any real reason and with the up of her O2 she seems to not be getting better. Lung Center doctor (who is just coming on service and hasn't had Ava in months) says she is being ventilated well so we don't need to change the trach. I would understand that to be the case if she was sick, but we are not finding that to be the reason. I asked to speak with our "primary" Lung Center doctor today but he was busy. I am so upset about Ava's care and the lack of communication that I couldn't come in tonight. I am fearful for her life and I feel such a heavy weight on me as if this is totally wrong and I am supposed to be doing something about it. I feel that there is something else wrong like the trach. I'm not going to pretend to know what it is, but they will not listen to me. There is such a disconnect as if Ava is not my child, but rather the hospital's. If she had been home, they would listen to me, her parent, more. Her pediatrician would be looking up what could possibly be the problem. If only they would listen and explore the other ideas. They don't even understand where the origination of the belly film (which I was asking for on Sunday, and they wouldn't do) came from or the change of the trach. And why we only changed the trach and were going to go back to it, if there was a problem. The trach should have never been changed.

Thanking God for Ava's fight and praying for relief and for God to give our family the answers we so desperately need...