Day 405

Ava had a great night and was awake at 7 am playing and smiling. She had an awesome day as well, but I found out that they didn't go down to a peep of 8. I guess they were writing it incorrectly for a couple of days as well as her peep valve wasn't set properly. I also heard from our nurse that Ava wasn't sick from a trach infection or pneumonia. They had the doctor from infectious diseases and illness come and check out Ava's blood and trach cultures and from what I heard he said she became ill somewhere on her steroid wean. I am not quite sure what is going on and why they are not communicating with us. Did her heart rate drop to zero because she couldn't handle the smaller amount of steroids? Did we go through all of that because of improper steroid dose? And again, no communication with the parents. I can't possibly be there all day, every day waiting for the doctors to find me to speak with me. They should be picking up the phone to speak with us. I was there from 1pm today until 11pm. Ariana and I stayed with Ava most of the day, but it is exhausting having a child that is not sick hang around the hospital and keep busy while taking care of your critically ill child. I really hope it's not too much longer. Ava needs to be home with her sissies who love her so much and you can see how much she loves them from the video.

Thanking God for Ava's progress and praying that we can get her home to our family and keep her there safe and sound...