Monday, May 16, 2011

Monday, May 16, 2011 9:15 PM

I wont go into detail about how ridiculous this day has been, but know that Matt and I have almost lost it MULTIPLE times.  But Elizabeth is doing well right now, so thats all that matters. Its so hard to deal with other people making decisions for your child, and having to be rude or forceful with your thoughts on it to get them to listen. But we've been doing it her whole life so far, and I foresee that being the plan for the future as well!!   
      She did really well today on the pressure support, she again did 10 hours on it, with a 2 hour trial on the trach collar. And she keep her oxygen saturation above 95 the whole time. It was pretty amazing to see, after her struggling so much last week. Hopefully this will continue, and we can start looking towards getting outta here soon.
    I would like to ask for thoughts and prayers for a friend of a friend. When we were inpatient at Vanderbilt in July and November, I found a local salon in Nashville to get my hair colored/cut. I met an amazing stylist Chris Pegram who became a big fan of Elizabeth and has followed her story and supported us since July!! His best friend, Jeff was diagnosed with lung cancer the same day Elizabeth got her new lungs. Please keep all of them in your prayers! They have been an amazing support system for us, and now its time to repay the favor!

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