Sunday, June 28, 2009 Update

We are back home from spending the weekend with Shailee. We had her baptism done at the hospital on Saturday, and she had professional pictures taken of her today which will be on a website soon and i will post them so you can see them. we signed the DNR today as well. they are pretty much going to do everything the same other then they are no longer going to do any labs on her, they will not give her any new medications, and if she has a bad spell where her oxygen drops down to 10 or below they will not bag her back up, they also will not be wrapping her belly or putting her shoes on her anymore as that only makes her more uncomfortable. they will continue all of her current medications as well as her feeds and those will increase with her weight gain as needed, they will also contine to give her medications to help her relax such as the morphine and adavant as she needs it. as far as miss shailee goes, well she isn't doing the best. her oxygen settings are still very high they were at 71% when we left today, she is very irritable and not sleeping well without medications to help her relax. she is breathing very heavy and fast and her secretions are very excessive as well. they are constantly suctioning her and it just comes right back. they can't tell us how long they think she will make it they just said it could be days or weeks. her lungs are not showing any signs of improvment and they don't seem to think that they will change, also they said the higher the vent settings go the better chance there is that she could end up with a hole in her lungs which would lead to her needing a chest tube which isn't something that we want to happen either. but we all spent alot of time with her this weekend and spent alot of time holding her and just loving her and being with her. it is pretty much in God's hands from her on out. i will keep you all updated as much as we can. thank you for all of the kind comments they mean alot to all of us in shailee's life.