It feels like it will be forever

So Amirah has been at the rehab for 5 days. She's doing really well. I thought that when she was admitted that the doctor understood our position. We agreed to send her to rehab for a week at the most. We really wanted her to come home. The nurses we dealt with at PICU didn't quite understand why she was going to the rehab.

Andy and I are more than comfortable with all that she needs. But we understood why her pulmonologist wanted her to go to the rehab. They wanted to make sure she would remain stable on her home vent at her new settings, and for any additional vent weaning we could do while there. But today, when we asked how things were going her doctor at the rehab mentioned she wanted to try and continue to wean Amirah and get her tor trach collar trial before coming home. This would mean an additional two weeks at the rehab! We let it be know right then that we would NOT be staying that long. We want to come by the end of the week. Yes we want to see Amirah get to the trach collar, but we do NOT want her to be there for that long.

It is IMPOSSIBLE to have any sort of normal life while she is in the rehab. Amirah is stable. She is ready to be home with us and I feel like every time we have to deal with a new team of doctors I feel like we get an incredible amount of resistance to how we want things. No one has given us an medical reason she needs to continue to be at rehab and I am hoping we won't have to fight to get her out. But if it comes to it we will fight.

There's not much else to say right now. Trying to be strong and positive, but really we just want Amirah to come home.

Here's a photo of her asleep with her Daddy on Saturday

And sitting in her Bumbo