The team was chasing sugar highs all night long. Which means, while My was more comfortable and sleeping better than the night before, they had to get finger pokes lots of times. They also had to have their phone checked to compare finger pokes to their CGM and adjust the insulin levels on their pump. This morning we were chasing blood sugars lows. We think the highs are because we are currently running feeds over night since My isn’t consuming enough calories yet. We think the lows are because My isn’t eating much during the day, since the day they got excited, ate a bunch and ended up puking sick and in pain for over 24 hours. The DISC team made some insulin adjustments on My’s pump to account for those two things. We still have the pump in manual mode, because everything is all over the place right now (whether it be blood sugars or the amount My is able to eat). Once things are more stable we should be able to have the pump in auto mode where we won’t have to talk to it quite as much.
By mid-day things had pretty much chilled out. Nausea loomed more mildly in the background. My was pretty sleepy and slept a good 3-4 hours in the middle of the day. We got out on a walk around the 11th floor, paused for an hour for some IV meds and then took another stroll around the first floor. My made jokes “How many times have you been in that room?”, when we walked past the G.I. waiting room on the first floor. They are getting faster and starting to stand up straighter. When we went to the first floor, we didn’t have to bring a single IV pole with us!
They say it’s still going to be a long time before the poor kid can shower, and they are gifted with my side of the family’s scalp. So today we brought in some dry shampoo. After letting that sit for awhile, I did some dry brushing with a boar bristled brush at the scalp. They said their head felt so much better after. The Twinnies said the brushing after pic is giving Hermione Granger lol.
We’re hoping this nausea will break and will get some more good and energetic My soon! Also, hoping that appetite comes back and the pain goes back down.
Daniel heads back to SD for some important work meetings for a few days starting tomorrow. Since we aren’t allowed to leave My without an adult (not that we have) this means I will be in the hospital 24/7 Mon-Thur this week. Here’s hoping we get those sugars in check so we don’t have to be woken up for lots of sugar checks and changes. I don’t know what the heck these twins are going to do. The Ronald McDonald House doesn’t want them to do anything alone. They aren’t allowed to go to the gym, even with parents! (They have been little gym rats at the YMCA since we got here since they can’t do their sports they are used to at home.) It’ll be interesting, but once Daniel is back, it’s just 3 more days of the twins and I here before we head home. I can’t even think about that yet.
