Ava's gas was 59 this morning so we thought she was getting better. Today at 4pm, it was 69. She kept waking up a bit and having to be sedated more. I am so confused on how much sedation she really needs. I'm sure she's not going to wake up happy and smiling from being put under for three days...
I spoke with Ava's neighbor who has been in the hospital for almost a year. That baby's mom told me how aggressive she is with the staff. She also told me how she is constantly cleaning up the room. So I sanitized Ava's room pretty good today. She also told me how her daughter would smell around her neck from the nurses not cleaning her well when they changed her trach ties. So, now this mom takes care of her as much as she can when she is there. The past couple of days before Ava was getting sick I would try and suction her and take care of her, and the nurses were having a hard time letting me do it. The one nurse couldn't even handle me doing it and took over because she felt that I needed to be more sanitary and use one hand to be dirty - take the trach off, and the other hand to be clean - to suction her trach. I (and Anthony) will be Ava's primary care givers. None of the PICU nurses are going to be home with us. This mom also told us we should push to get trained sooner. They don't give anybody enough time to train. We will also both have to stay overnight at the hospital and take full care of Ava throughout the night.
Praying for Ava to get healthy and to never be infected again...
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