Saturday, January 15, 2011

Saturday, January 15, 2011 10:54 PM, CST

Not much happening here in Texas. Elizabeth remains as stable as she can be all things considered. Hoping to wean totally off nitric oxide tomorrow (Sunday). And just stay the course until we get THE CALL. She has been on the list for a little over a week, and the wait makes it seem like months. I guess before she got on the list we always had something to work towards,getting her oxgyen weaned down, getting the feeding tube, getting the trach, getting transported, getting insurance approvals, things seemed a little more controlable because there were actaual "things" that could be done by the people around us or by us . If that even makes sense. Now none of us have control of anything, its totally up to a higher power, when or even if Elizabeth will get lungs. I try not to think about the IF part, I always worry about her making it through the surgery, and about rejection and infections after transplant. But in all reality there is a chance that lungs won't become available in time. But only time will tell, and Elizabeth is doing ok right now, so I will try not to stress over that until I need too.
Hope everyone is having a great weekend. We wanted to pass on to everyone to keep little Brynlee and her family in your thoughts/prayers. She just got home from Cincinnati Children's after living months there for her bone marrow transplant. Her family is from the Chattanooga area, and we have become internet friends. SO happy and excited for them to be home!

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