Perspective/Type 1 Diabetes
My son’s blood glucose (BG) alarm blares, waking me. I’m back in decision-land. Some nights, I’m there a lot, others less so. In daytime, I’m always there. It’s been almost two years since my now 7-year-old Casey was diagnosed with type 1 diabetes (T1), but mastering how to manage it is elusive, if not illusory. Its complexity and unpredictability makes me feel as though I’m trudging, half blind, through dense fog.
It’s exhausting because T1 requires making innumerable treatment decisions to keep BG within the normal range, not going dangerously high (hyperglycemia) or low (hypoglycemia). A 2014 article in Stanford Medicine reported that people caring for themselves or others with T1 make an additional 180 health-related decisions per day. T1 decisions are nerve-wracking too, because you can’t know, let alone quantify, all the many factors affecting BG at that moment. If wrong, your decision is problematic at best, deadly at worst.
Decision-land is strewn with booby traps and landmines. The many influences on BG are like booby traps waiting to be tripped. Examples include type and amount of carbohydrate, fat, protein, caffeine, alcohol, timing of insulin relative to food, dehydration, medications, time of day, hormones, activity level, illness, stress, amount of sleep and puberty. And life-threatening landmines explode out of nowhere demanding immediate action to contain the emergency, for instance, accidental overdoses of insulin, no access to insulin, delayed access to essential medical supplies or care, technology failing unexpectedly and errors by inexperienced caregivers or careless medical personnel. All increase the stakes and urgency of your decisions.
Navigating decision-land requires courage, perseverance, mental acuity, intuition, and adaptability. You must remain vigilant 24/7, understand your diabetes technology and the results it provides, call on prior experience and relevant medical information to exploit them effectively, and often make “scientific and wildly amazing guesses” of a meal’s carbohydrate content to calculate the right amount of insulin (termed S.W.A.G. in the T1 community). But a path previously traveled may not lead to the same place. Not surprisingly, we’ve been caught in many booby traps and stepped on some landmines. Despite our best efforts, some seem unavoidable.
We were recently ensnared by a booby trap, only to be blasted immediately after by a landmine. The result would have been catastrophic had not my mom, late at night and far away, opened her phone’s Dexcom Follow App showing Casey’s BG as measured by his continuous glucose monitor (CGM). The sequence began late one evening when Casey was hyperglycemic despite his BG having been in the normal range (70-180) earlier that day. His t:slim X2 insulin pump had predicted hyperglycemia within 30 minutes so had given him an automatic correction bolus (a one-time dose of insulin and only 60% of a full correction) to prevent it. But an hour later Casey’s BG was still rising. To counter persistent hyperglycemia, the pump gives automatic corrections hourly as needed. My quandary was, should I wait for the pump to deliver a second 60% correction in the next few minutes, or should I override it by having it give a full correction before that happens? Based on prior experience, I had the pump administer a full correction.
Two hours later the landmine exploded. I woke to my mom calling at midnight. She asked if I had treated Casey for hypoglycemia because his BG was alarmingly low (44) and dropping fast. I was stunned. I use Dexcom’s Follow App to sound loud alarms on my phone whenever his BG crosses a preset BG threshold for an extreme low (or high). But it hadn’t sounded. Neither had my mom’s. As his BG plunged past 40 into LOW, I woke Casey and he confirmed he felt low. I gave him glucose tablets and waited for him to recover from hypoglycemia.
Dexcom’s Follow App had failed to sound! We had to resave all our alarm settings to get them working again. But this technological failure shook us to the core, especially after learning other T1 families experienced it too. Had my mom not glanced at her Follow App, Casey might have died by morning. His BG dropped again that night but, thankfully, my alarm sounded. We greatly appreciate technology, but it can be hazardous when it fails. I therefore downloaded a backup alert system called Sugarmate. That app calls me during the night if Casey enters hypoglycemia.
Had I been wrong to input a full correction? One of Casey’s diabetes nurses said his data showed no problem with my doing that before, so thought it was an isolated event. In any case, his plunging BG wouldn’t have become life-threatening had the alarm system alerted me. As hard as you try, you can’t map out or avoid all traps in the T1 world. Sometimes it seems you’re damned if you do and damned if you don’t. Consider two occasions a week later when I opted not to override the pump. One evening it gave Casey three hourly automatic correction boluses for persistently high BG, and he repeatedly became hypoglycemic during the night. The next evening the pump gave him one automatic correction bolus for high BG, but nothing more after it entered a preset sleep mode (no automatic corrections given in this mode), and Casey went hyperglycemic all night. His nurse commented he could have benefitted from an additional full correction bolus.
The T1 journey takes you across a sparsely mapped and sometimes forbidding terrain. You quickly discover you must make myriad decisions without sufficient or consistent information. Sometimes you find yourself dazed and blindsided amidst the rubble of a landmine. The good news is that, with time, you learn more about the terrain and strategies for safer passage. I escape decision-land only when asleep. But then, if an alarm goes off, I am thankful for the timely warning about Casey’s BG—or the beginning of a new day with him.
Lisa Seitles and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.