Tuesday, March 3, 2015

almost ready for dismissal! for real this time

With Papa Ron Glasgow and Gogo Marcia Swan Glasgow spending time in William's hospital room, I have time to spend in the Ronald McDonald House apartment doing, well, nothing. It's quite a pleasant break although relaxing is a learned and difficult task. Other type-A's can relate. 😊 We have a TV in the apartment with the BIG10 network, that's a good start.

William's little body continues to heal well. He's up to almost 19 pounds; he was at 14-15 pounds for about 5 months. I'm still getting used to seeing a little boy instead of a newborn. He turns 9 months old on Sunday! He will be getting one set of central lines removed tomorrow, still keeping one set in. He will continue to need blood and platelet transfusions as needed along with daily blood draws, so having a central line in will eliminate the need for IVs (no needles). When we leave for home in a few months, he will just have his g-tube. His feeds will be strictly enforced. Children with Krabbe Disease need to stay small, usually below the 10th %ile for weight. This evil disease has taken his ability to move and he isn't burning calories, plus it's easier on his body and joints to be smaller. Robert and I are not small people (Robert is 6'4"!), so it will be tough to keep him that small!

The doctors agreed to finally take him off of Valium. He's been on it for about 7 consecutive weeks (started on it during the strongest stretch of chemo and transplant until present). It will take the entire month of March for him to get completely off of it; weaning from benzodiazepines apparently is a delicate process, especially with a baby that has been on it for so long. Scary stuff. His care team does this often and are confident he will have NO withdrawal symptoms. I can't wait to see his eyes shine again. We will be discharged by the end of the week.

I guess those are the big changes to share for now. Now, back to doing that "relaxing" stuff people say I should try, although I think its highly overrated.

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