Monday Update

So the Docs were'discussing' sending her back to the floor and even changed her meds so that they can be given by g-tube but Arianna has had other ideas. She has been awake and fighting her c-pap all day. She does this thing that her nurses have dubbed 'the crocidile death roll', and blows her tubing apart. They have had to give her so much adivan to get her to calm down that now that she is asleep she is d-sating, so they up her o2. I am now confident that she will remain here in the PICU. I told the docs that she would come right back here if they sent her to the floor, so she proved me right even before she left. I really feel like they try to push her to hard too fast, they know her, know her history and they still treat her like a kid without her syndrom. But with that said, they also treat her like she isn't going to survive because of her syndrom. 'Please stop' is all I ask , give her a chance to fight, she may be slower to recover but I truly believe and know in my heart that she is meant to be with us for a good long time.

I know that she is going to make it through this, I really expected that she would be intubated long ago, but she has done well on the C-pap and has not need to be on the vent. I am greatful for that fact, she is very hard to extubate. With all that said I have to go home now to give the computer to Matt. More updates tomorrow!