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Powered by LifeTypeFaith's surgery is scheduled for 7:30 this morning. We don't know how long it will take for the lab to process her marrow and then get it to Grace yet.
Here are some pictures from yesterday.
I woke up at 6AM because it turns out that is when the hospital does weekly generator checks which involves the power going out, which shuts off the ventilation fan briefly and triggers these color changing lights (that we didn't know about previously, see below), and so the nurses run around to turn off the lights in everyone's rooms. Seems crazy to me that the test is scheduled like that. I have thought multiple times that Boston Children's Hospital should hire my company, Medallia for patient and employee surveys, because there are a handful of obvious things that all patients and employees know, but the people in charge must not, because they could save money, make the hospital a better place for employees and for patients and generally make things more efficient.
The last long update ended February 3 in the evening. In the wee hours of February 4 (Sunday) she got a blood transfusion for her hemoglobin level, which was expected. (They’re killing off her bone marrow, so her own body is not making as much blood.)
The first round of tshirt orders has come in!
Local people can come pick up anytime. Please bring payment when you come if you haven't prepaid. Noah will be mailing faraway people's shirts soon.
I'll update later with how much has been raised for David's House. We haven't gotten all the payments in yet.
If you haven't ordered one and want to, just let us know what size and color you want! (Details here.)
The last post left you with Jon and Grace down in ultrasound. That procedure took two hours. They took hundreds of pictures - exploring all her internal organs. She does have vessel constriction in her liver, wgich is not unexpected with JMML. So since then, she has gotten another prophylactic med for that.
Jon and I finally finished chapter 1 of our Escape the Crate, which was fun. This context definitely requires us to do the untimed version.
After that, we played Board Game Arena with the kids at home and that was good. Then all of a sudden it was bedtime!
I spent that night (Thursday) at the apartment again and I slept much better on the different mattress. Jon, however, did not sleep well at all because of all the hospital things in the night.
T-minus seven days and counting. Transplant Day is Day 0 and they count all other days from that.
Yesterday, I left off while Grace was still sleeping. She woke up slightly grumpy, but soon was fully awake and her normal self. Chemo every six hours, blood draws every half hour (!) plus other meds, and she was hooked up all day. (At the end, you'll get to read about the fun time she had with Daddy before bed when she was finally unhooked for a while.)
A physical therapist came in to play and assess her current levels of moblity. During that time, she twice fell over for no apparent reason. Sometimes, her lines get in the way of walking and balance, but these two, she was just standing there and fell over like she had vertigo. The doctors did say that it would not be a surprising side effect to be dizzy. However, after those two episodes, it did not happen again. We do hover near, though, to catch if necessary. She also slipped in her "grippy" socks, which turned out to have the grips in the arch. But they got her a bigger size sock and the grips are more numerous and over the entire bottom of the foot.
She has a number of meds to take by mouth as well, which she has done fine. One yesterday (that turns out to be a once-a-week on Wednesdays) she actually reacted to with a yucky face and tongue out. So hopefully that will not give us trouble in the future.
She took a three and a half hour nap in the afternoon, hardly disturbed by vitals checks and med changes.
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