Something happened on the way to the kids’ school today that made me realize how psychologically dependent I am on Bisi’s CGM, and, beyond that, the Dexcom Share program that we just installed a week or so ago, that lets us see on our iPhones what Bisi’s glucose level is at all times. (As long as she remembers to keep her own iPhone –which has been stripped of anything potentially fun or tempting, and whose only purpose is to transmit CGM data to us–paired with her CGM.) Our mornings have always been a mad rush—and they’re even madder now that they involve testing blood sugar, dosing insulin, making a diabetes-friendly breakfast and lunch, and writing out the carb counts for the nurse. I always stick Bisi’s pump, CGM, and, now, iPhone in a small pocket of her backpack just before we leave, then we take off with our dog and walk to school. This morning Bisi was running on the low side—72—but I knew that her breakfast carbs were about to hit (low carb waffles and syrup with berries), so I figured I would just keep an eye on the CGM and test her if necessary when we got to school.
When we got to her locker, I went to grab her CGM and phone to stick in her classroom—but the backpack pocket was unzipped, and the CGM wasn’t there. She tested herself—79, on the way up—and I told the teacher I was going to walk back along our 10-minute route to try to find the CGM.
I scanned the sidewalk and the road, hoping the CGM hadn’t been crushed (like Bisi’s Omnipod!), and started panicking as I got closer and closer to home without finding it. Maybe I’d forgotten to put it in her backpack after all? I searched the kitchen, but I could tell from the display on my phone that it had lost the CGM’s signal just a couple minutes before we’d gotten to school. At this point I decided to call the school nurse, to let her know the situation and ask if anyone had found the CGM and turned it in—and was told that the nurse was out for the day and they were trying to find a substitute. I panicked a little more. Not a good day for Bisi to be without her CGM.
I walked more slowly back to school, looking everywhere, and, on the off chance she could help, telling my dog to “Find Bisi’s CGM!,” since she’s so good at sniffing things out (and since she knows Bisi’s name). Then, I saw it, sitting up on a stone wall, where someone must have placed it. I delivered it to Bisi’s classroom, left the school, and felt a huge sense of relief as her number popped back up on my screen—96.
I realized that in the past year we’ve had the CGM, we’ve become so reliant on it that I felt a sense of cold dread at the idea that I might have lost it, and that she wouldn’t have it as a safety net that day. I think this is partly just the natural way that we all come to rely on the technology around us, and to feel that we can’t live without it. But I think it’s also that over the past year, as Bisi’s insulin needs and the unpredictability of her blood sugar have increased, we have had moments when the CGM has really saved Bisi–saved us. Moments when she was plunging low, and we probably would have missed it without the CGM.
But the Share software, where we can see her number on our phones, has been in our lives for just 10 days. Already, I don’t know what we’d do without it. I’ve called the school nurse when I’ve seen a number that’s worrisome; texted babysitters, and watched her number from the sidelines of lacrosse games and gymnastics practice. Knowing her number is never more than a click away gives us peace of mind, yet it also means that there’s never a time we’re off duty. (It can also cause extra worry, as when Mark and I sat at a Red Sox game and saw Bisi’s number plunge from 80 to 40; after panicking for a minute, and asking the babysitter to do an extra test, we realized that it was one of those weird Dexcom things that happen particularly when Bisi is sleeping on her back: when the Dexcom number drops way below what her blood glucose number is.) It feels a bit like Big Brother (or Big Mother?). Mark and I have been joking with each other lately that with all the tools available now, “It’s such a great time to have diabetes!” (Joking, because as anyone connected with type 1 knows, it’s hard to find anything great about it.) But the truth is, the tools that have been released just in the last year make this disease much easier to manage. It just takes being without them for a bit to bring that sense of appreciation to the fore.
This new diabetes-related development must be such a relief for parents, whatever its shortcomings. I was diagnosed in 1972, when we used urine testing. If someone had told me that a CGM was going to be available in 2010ish I’m not sure I’d have believed them.
I know how you feel. After 30 years of wearing a pump, I freak out at the thought of being off the pump at all.