Ally hospital update 2/12/10 4 am

Mommy and Ally

Ally was having quite a bit of trouble yesterday afternoon with BIG desats during treatments and eventually no air moving in her left lung, so we switched her to the hospital Vision bi-pap (breathing machine) at 3:30 pm. We also switched her treatment to every 2 hours. I wasn’t surprised that she was getting worse, before better, but of course, I was a little more stressed and worried.

I’m happy to say that the Vision bi-pap (at the same settings, but a stronger machine) has made a world of difference. We immediately saw her breathing improve and her left lung began to move some air. The treatment every other hour is helping too. The nurse and therapist continue to get a ton of gunk out of Ally, but we are staying ahead of the game by doing it so often. Ally is not able to rest a ton, but she is not getting so worked up and no more BIG desats. Of course, it helps for her to be familar with the therapists and most nurses treating her. She has slept a little between treatments and is now watching her cartoons.

I slept from about 11pm – 2 am, which doesn’t seem like much, but I feel okay and I’m wide awake. I can’t sleep here unless really tired, so I’ll just get some computer/paper work done and rest later. I am beginning an application to eventually get Ally a canine assistant/companion. I also have to finish my paperwork to attend an SMA family weekend in Kentucky at Camp for Courageous Kids in April. There’s always something to do to enrich Ally’s life or get her things she needs and deserves. Too bad I don’t have my taxes here to work on, but that would make a big mess with receipts and stuff.

My mind is a little unsettled going into the weekend and not knowing who might be working with Ally in regards to doctors, nurses and respiratory therapists. One of our favorite nurses, Desty, took care of Ally Thursday daytime and will be with her during the day on Sat. and Sun., but we don’t have any clue who the rest of therapists and nurses might be. Of course, there are sicker patients that need to be focussed on first, but I’m praying the management might be able to give a tentative schedule of who might have Ally for a few days. This relieves some stress of the unknown and I can step away for a few minutes or possibly plan a meal out if she is with RNs and RTs that know her and her unique needs well. I’ll see what can be done on Friday, but don’t want to be demanding since overall things are going well.

Thanks again for prayers and support.
Hope everyone else is staying healthy and warm!

Tina, Ally and Family