Day 446

Ava had a great night and was put back on feeds today. The doctor decided to put her tummy to gravity and let her juices come out and then be thrown out. I am sure this was persuaded by the nurse since this doctor does not have much knowledge of Ava and does not pretend to know. We know how things work here. Her nurse also told me that if we are draining out her juices that we need to give her Pedialyte. So if we were draining her this whole time how she wanted, we should have been giving her Pedialyte? We never knew this to be the case??? The nurse also told our pediatrician that we were not putting her to gravity as if the hospital had decided that long ago, which is not the case. The doctors had decided before she went home originally to put her to vent and unfortunately this nurse was putting her to gravity when I was not there. We do follow the directions of the hospital prior to Ava coming home and I don't want our pediatrician to think that we do whatever we want. There was no consistency of care. Ava also spit up her bile when she was to gravity. Today, she still has clear foamy liquid coming out of her G.

When we came in tonight I found that she was put back on her Peptamen Junior without any knowledge of the change, even though I spoke to the nurse numerous times throughout the day. Ava also had no tests done on her because they were too busy to order the Isotope for the test. The unit was not full, but instead Ava sat around all day without anything being done about why she was back in. She also hadn't had a bath or had her trach ties changed since we did it the night we brought her in. When I came in tonight, I washed her and changed her trach ties or it wouldn't have happened again. She fell asleep pretty much immediately after I was done. Once we found out her feed was changed again and she sat around all day, Anthony called Strong Hospital and was told we could transfer her as soon as they had a bed. We were told people all over the world come to Strong. We also found out that our insurance would be in-network so we could go there. Children's wants to have a care conference with us sometime next week. I also spoke with Lung Center today and of course they are bringing up the venting versus gravity. Unfortunately I think this nurse has skewed their minds as to what could be causing this and why does Ava have so much tummy secretions and why would this cause her to stop breathing. Is it reflux, how severe is it and why does it happen at home and not in the hospital? She was many months in the hospital set to vent and not to gravity at night, and why would it happen at home when she has the same set up? So, the best situation is to leave and have a whole new team look at her GI since we wouldn't be able to get into Strong as an outpatient for a couple of weeks or months. It is not typical for a child with no previous GI problems to be put to gravity except for other reasons like I spoke about yesterday. It should not be decided by a nurse but a GI doctor. I don't believe either, that Ava had these GI issues until she came into the PICU but she also was only on breast milk. Anthony and I are the ones that are more vested in Ava than anyone and we want what is best for her. If it means to vent her to gravity, we will, but it must be decided by a GI doctor who has researched and studied Ava and specializes in Pediatric GI systems.

Thanking God for Ava and praying that we have discernment and figure out how to handle this...