Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Thursday, August 8, 2013

T+15 Out and About

WBC = 6.7
Neutrophils = 5.2

Coleson is progressing so well that he got to go out of room today (just into the hallways of the BMT ward). He actually got the OK yesterday but ended up sleeping most of the evening. He didn't like his green mask at first but his eyes were wide open as we cruised past all the nurses stations. He also continued to drink from his sippy cup (although gags most of the time) and walked, sat in his red chair and played basketball. He was smiling and trying to talk (but his voice is too raw yet). We lessoned his morphine again and they are changing his TPN (IV Nutrition) so that we can try to start G-Tube feeds tomorrow. I really hope we make it out of hear off of TPN, although most kids don't.
Peyton and Rachel went to a huge farm today with the RMH kids. Peyton sat on horses and donkeys and had a ball. Both Paul and Peyton were big winners at Bingo tonight too. I got some much needed work done and got a chance to speak with many of my employees today.
We did get some sad news that one of Peyton's best friends here who is awaiting a BMT, her donor backed out today. It is a risk I worried about constantly right up until the marrow was hung on Coleson's line. They will revert to using Cord blood instead but it is not as close of a match. Please pray for N & A tonight as they need your prayers more than Coleson at the moment. N is here alone with her daughter and I can't imagine not having my whole family here with me during this process.