Playing Frisbee!

Hannah received an isolated small bowel transplant on Feb. 13. 2004. Hannah was diagnosed with chronic intestinal pseudo obstruction and Waardenburg Syndrome at birth. Unfortunately due to a rare form of rejection, Hannah had to have her transplanted bowel removed in June 2006. She is now back on TPN and receiving Palliative Care due to our decision not to relist her for organs due to numerous other medical issues. She continues to amaze us with her strength and courage to live.

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Journal

Tuesday, June 16, 2009 9:57 PM CDT

Wow--I didn't realize it had been so long since I have updated the site. Quite honestly, it is hard to update anymore. Things are pretty status quo with Hannah---no big changes, no real setbacks and nothing new to report overall. The only real change is her increasing dependence on her ventilator during the day which is something that has been developing over the last few months. We have an airway scope next week that will hopefully tell us if it is an actual physical problem with her airway such as a granuloma or blockage or if it is her muscles just getting more and more weak. Hopefully, the scope will shed some light into this and won't bring us the news we don't particularly want to hear---she is growing weaker. We know this is her reality but so hard to accept. Only time will tell......

Blessings to you and yours!

Hospital Information:

Children's Hospital of Pittsburgh

Pittsburgh, PA
412-692-5325

Links:

E-mail Author: shdmiller@yahoo.com

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