@Michel this seems really tough. I have no advice really. You’re actually doing a fabulous job given what you’re working with – but of course you don’t control the conditions you’re given. Kaelen’s growing and there’s a lot of stuff going on in his body and his mind that you can’t anticipate with insulin. And then his schedule is all over the place. It took us months to feel in control of Samson’s BG during his one modest gymnastics class – I can imagine that having a gazillion activities would be near impossible to get on top of without someone looking at his numbers in real time as a full-time job.
I agree with others that a long acting basal could help – possibly untethered – although unlike others, I have a kid who hates shots and can understand how Kaelen would prefer the pump’s convenience and discreetness. I don’ think it’s worth abandoning altogether.
But I actually am hoping this may just be a crazy period that will wind itself down over time, that you guys will continue making micro-refinements, that you will have no one click moment necessarily but will have gradually gotten a handle on his numbers. Then sometime in the next few months you’ll look at the numbers and realize they really have gotten a ton better!
And most important – that you are p. I just think we can’t actually do a good job with our kids if we’re at a certain level of sleep deprivation. I’m still a total zombie and making tons of unforced errors during the day because of the baby but when I hit a crucial threshold I basically just crash and then everyone around me has to adjust. My work productivity plummets to ZERO. I get super screamy with my kids and wind up getting a huge migraine that forces me to lie down anyways. That’s not really a safe or good way to proceed. Could your wife take over for any length of time? What about family? I’m of a different opinion from some of the old-timers here; I think our kids have a lifetime to face waking up at night and personally think they should get sleep as much as possible. Maybe you do want to work with Kaelen for, say, one day a week on being in charge of his numbers overnight – but certainly not all week.
Also, maybe it’s good to have a policy like a “survival day mode” in which you just do the bare minimum at night. So agree in advance that after, say, 3 or 4 days with crummy sleep (say, less than 4 or 5 hours total each night), set your low threshold to 55 on Dexcom, set the high threshold to 250, and try to get as much sleep as possible. That can also be Kaelen’s “practice” wake up day.
One other thing. I’ve noticed over the past two months is that the peaks don’t necessarily dramatically impact average BG if they resolve quickly – so I’ve become much more relaxed when Samson spikes up to 200 and then goes back down. Since hormone peaks seem to be fast-in, fast-out, you might see what happens if you make a rule to just hit them ONCE with some fixed bolus amount (look over the data to see what that is, find an average, calculation the standard deviation in how you respond and then call it a day) and then just ride out the highs, with a reduced risk of needing to correct lows on the downswing. In the end, the lack of yo-yoing could wind up leading to roughly the same, or only slightly higher, average BG.