News about Liam

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September 3, 2007

First of all, Liam wants to say THANK YOU to everyone for all of the prayers, the phone calls, the messages & the hospital surprises. He misses home so much and I think this connection keeps him fighting (and compliant with all of his medications, etc.) so that he can get home sooner.

The excitement of Liam's day was his 2:00 haircut (believe it or not, that was a big deal)! He loves the cut and thinks he is looking healthier because of it. I just love being able to see his eyes - they certainly are the window to the soul!

Medical update: Liam's marker numbers are all over the board right now. The doctors shared that although some have gone done, others have gone up. Dr. Healy seems to feel that we may need to do yet another biopsy either Tuesday or Wednesday, if the numbers do not stabalize. They are also having a difficult time getting Liam's antirejection medications at a therapeutic level. We will talk in rounds tomorrow, but it was suggested that maybe his anti-rejection medications be administered on a 3 times per day dasis, since his absorption is so poor (a condition of his Cystic Fibrosis). Also, he is eating like a beast for at least 1 meal a day and is being supplemented with 3600 calories in his nasal gastric tube. Amazingly enough, he is not gaining anything. We think it is time for the Cystic Fibrosis Nutricianist to be called in...A G-Tube may be an option for later, but for now, we need some fresh perspective.

For now, we are off to the cafeteria for dinner. Looks like power just went out. Gotta go - more later!