Every morning my eyes open a few minutes before my alarm goes off. First they flit to my clock to register the time, and then my hands reach for my phone. My phone sleeps with me in between my pillow and my husband’s pillow. For a long time this was the best setup so that both of us could hear any alarms for James’ blood sugar overnight. But these days my phone is unusually silent. And in the early-morning hours before my cognitive functioning is all there, that silence causes its own kind of panic. Did I sleep through an alarm? Did something stop working? I fumble clumsily through my apps, but when I go to look at his graph, I see a line that is only waving ever so slightly, representing blood sugar that is perfectly in range and has been for almost all of the night.
This is life with our new insulin pump/continuous glucose monitor (CGM) combo. My husband and I often wake up to look at the graph and marvel together, thinking how far things have come!
What I want to be clear is that the new system — technology that integrates blood sugar data from the CGM to insulin dispensed by the pump — is magnificent, but it hasn’t made life with diabetes perfect. In fact, we’re still dealing with some aspects of the new system that we haven’t quite gotten right yet.
One of the best features of the new system is the low suspend feature. When the sensor can feel that James’ blood sugar is low, it stops giving insulin. This alone is great, but it’s even better in the sense that it can detect his blood sugar dropping and starts making adjustments before he is low. This is so important to me as James is becoming more independent. This means that even without my watchful (remote) eye, his pump and sensor are working to help keep him from having a severe low incident.
The nighttime function of this new system has to be my favorite part. Over the years we’ve figured out a lot of good functional hacks (that at first didn’t involve a CGM and later integrated it) to help alert us to highs and lows that we needed to manage. Our goal for nights was stable numbers (especially no lows) and also a good waking number. We were able to achieve that most nights by working with our diabetes team and adjusting insulin dosages and food intake. This new pump does it without needing our intervention overnight. Since James started on the device a few months ago, we’ve only needed to intervene with a juice box on maybe three occasions. It did a great job of keeping his blood sugar up and also getting it down over the course of the night. By morning, his blood sugar graph is almost a straight line.
As I said, we love these features. Are there any things we don’t love about our new system? Maybe a few. First, there are some features that we’re still trying to figure out. The new device requires some adjustments to insulin settings. We’ve had instances where we had a hard time getting blood sugars into range when James was running high, and we had to work with our team to figure out a way around it. Some of the processes are new to us, and we’ve had the usual adjustments to relearning how to fill an insulin cartridge or put on an infusion set. We also still see lows during the day when they are related to intensive exercise. Although the device is built to catch lows, James sometimes drops so quickly that the pump isn’t quite fast enough. I expect we’ll continue to learn better ways to work with the pump technology to limit this. I also think we’ll see more innovations in the future, and I am definitely here for it!
We still have to count carbs, occasionally test blood sugar with finger sticks, and make adjustments frequently. Also, we aim for excellent numbers, and that still requires a little bit of work on our part daily. But it gives me great comfort that the two biggest concerns for us — unanticipated low blood sugars and overnight stable blood sugars — are now taken care of almost without a thought. When we chose our new diabetes tech, we realized that this will likely be the device that eventually takes James through his first year of college. In that respect, I feel very good about our decision. While much of his care will still be up to his own diligence, some of the scariest aspects of diabetes have been made significantly less so. And that helps all of us sleep at night.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.