Day 226

Ava's gasses were 72 and 70 today. Not really great. She did sleep most of the day and had her hearing and sight exam with a machine that tests her brain waves.

I had a bad situation with one of the PICU nurses today. I called and spoke with the nurse in the morning like I normally do. Of course the first thing out of her mouth is how fussy Ava was or is. I told her that Anthony and I will be in to get trained on Ava's trach change at 1pm. She then got very volatile and said that she can't have another trach change since she had two yesterday and that another one could cause her harm. The only reason I even told her about it was because the nurse the day before did not know that we were coming in and changed the trach. So I let the night nurse know to tell the day nurse to expect us. Well, she basically yelled at me and told me that she was going to tell the doctors when they go on rounds and that we won't be able to be trained. She also asked why would we need to rush since Ava's nowhere near ready to come home. "She's not even on a home vent." I proceeded to tell her that we started training in May and still have not completed it and we would like NYS to have to have the info that we completed it so Ava can be closer to coming home. She knew nothing of that, but told me that she would talk to our trach teacher. I told her that I am sure our trainer wouldn't want to put Ava in any harm and that she knew what she was doing.

Well from what I heard, shortly after, she told the doctors that we cannot do another trach change and then she even called our trainer flipping out to her that we cannot do that. I tried to call the trainer to seek her advice, but I couldn't get her since she was a nurse on another floor. Meanwhile, Anthony and I prepared to go in and even after I called in and couldn't speak with the nurse, nobody told me that the trach teaching was canceled. Anthony took off of work and we even drove separate cars since I had a dentist appointment.

We came in and the nurse who was so nasty to me earlier was on lunch. Another nurse was watching Ava and they proceeded to tell us after I asked if Tammy was coming, that changing the trach would stretch out Ava's hole in her neck. We must have had three fellows and a nurse in there telling us. It was unbelievable. They were not being very family friendly (like it says on the website) and were in a way attacking us. I spoke up and said that my husband took off work etc. We later found out from the trainer that the nurse told her she would call us to make sure we didn't come in and she never did that. I told the nurse who had taken over on the lunch break, (who I later found out is a charge nurse and is supposed to be a parent advocate) that our nurse was very rude on the phone. She looked shocked and totally defended this nurse and made us feel crummy. We finally got the trainer down after we said she had been a nurse for 26 years and she must have a reason to change the trach and would never do anything to hurt Ava. She came down and unfortunately right then the tech for Ava's hearing and sight test came down. We spoke to the trainer for a bit and she told us that we could change the trach as much as we wanted and she would never be injured. We could change it once a day or even three times and it wouldn't matter. And she said that was coming from ENT. She said she would speak to the nurses about it.

She spoke to the nurses and fellows about it and they sounded so rude to her too. They didn't want to believe her and they kept arguing that Ava's not ready to go home so why does it matter?... We are basically utterly frustrated with most of the staff who is annoyed with Ava when she's "fussy". How that nurse acted today shouting at me and getting involved in something like that was absurd. None of the staff had to act that way. Would we really want to do something that would hurt Ava? I think not! We should do something about this to protect Ava but to also help future families. We have no idea who to talk to especially since I found out tonight that nurse that got snotty was a charge nurse and is supposed to intervene in situations like this. The nurse did apologize for not telling us to come in and was nice about it later. But I am so confused about what had happened. Sorry for the long gripe but I am sure some of you are may be interested.

In other news, Ava's crib is coming in the mail this week and the girls have their bunk beds and are happily sleeping away in them tonight. Ava's room is almost ready... We just need Ava.

Praying for Ava's tests to be perfect in God's image...