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.

Wednesday, August 14, 2013

T+20 Time flies when you are having fun!

And Coleson has been feeling pretty good (relatively speaking) for the past week so he's been out of his bed a lot during the days. To catch everyone up, his WBCs continued to climb to probably his "normal" level of 6.7 so they took him off the IVGH (or something like that) which is the drug to increase cell production. He was expected to fall back after that, which he did to about 4.7 which is still really good. He back up to the 5s now. The only thing really keeping us here is getting him stable on his G-Tube feeds in combo with his IV feeds. He is on the lowest dose of IV feeds (TPN) and is at 10mls/hr on G-Tube feeds. Eventually they want him up to 45mls/hr. I think he will eat regular food before then. He wants to drink water all the time but ends up throwing it back up if you give him more than 1oz at a time. They probably would have released us today but since he needs his enzyme replacement tomorrow and I need to get trained on how to become a nurse (not quite!) to administer all the drugs, TPN and G-Tube feeds. So that will all happen tomorrow and hopefully by tomorrow night we will get released to spend our remaining 80 days at the RMH. We will have come to clinic every day (labs, transfusions, etc.) so it really won't feel like we have been released.
Peyton has been having fun with her best friend at the RMH (A), but she was admitted for her BMT today so I think she will be really excited to have brother home with her. Although, he won't be able to be in the general public without a mask on and I don't know how much he will get out of the room. While the weather is still nice, I'm sure we'll take him out in the stroller.
We are looking forward to this weekend as my sisters and their families are coming for a visit. Peyton will be so glad to see her cousins again. Also we are looking forward to another Hurler family to arrive for their 2 year post BMT check ups. The mother has been a huge support system for me and it will be nice to meet her in person. We also will be saying goodbye to another Hurler family that has been here for the past 6 weeks for hip relocation surgery. I will miss them greatly as our boys are most alike. (And our girls are too from what I hear about her's). Hope the next post will be from the RMH...