Perspective: Type 1 Diabetes
Imagine having to carefully monitor your internal physiology or your child’s to make sure it doesn’t head into one of two danger zones. Either can kill: one within hours and the other slowly, usually after years of disabling complications such as blindness, limb amputation, heart disease and kidney failure. You not only have to remain vigilant 24 hours a day, but also actively prevent hazardous developments by administering proper treatments throughout the day and by taking corrective action when danger seems imminent. You try your best to calculate proper treatments, but the condition is so complicated that you can’t be sure that your treatments will have the desired effect. Would you ever rest easy? What about while you’re sleeping? What about while you’re working, learning, playing, public speaking or at a party? Can you imagine how watchful you must remain among all the distractions and obligations that characterize life, and ironically be just as vigilant when all those distractions and obligations go away while you’re sleeping? This is life with Type 1 diabetes.
So, what is most essential for treating, controlling and correcting out-of-range blood glucose levels every day? For us, it’s vigilance, a juice box, insulin and an alarm. I never held juice in such high regard until my son Casey developed Type 1 diabetes. Juice is often as essential to a diabetic’s survival as the air we breathe. It’s almost magical how it brings blood sugar back up from a hypoglycemic low. And without insulin, no diabetic would survive, period.
And then there are the alarms, which generally have a negative connotation for most people. I don’t know many people who love hearing their morning wake-up alarm, a fire alarm or any other alarm. However, we live by alarms now, ever grateful for them. They go off at all times of day or night. They come both from Casey’s Dexcom receiver alerting us that his blood sugar is too high or too low and from my phone alarm alerting me to when to give him his daytime doses of “bolus” insulin and reminding me to inject his crucial 24-hour “basal” insulin in the evening.
You would think we’d be used to alarms by now, but they are always jarring. Just when we are about to sit down and relax, they startle us right back up. I’m not sure you can ever get used to them since their timing changes day to day, hour to hour, based on when Casey eats, his health and what he is doing. Despite Casey’s Dexcom sending alerts during the night about blood sugar levels needing attention, the mom part of me will jolt awake randomly throughout the night if I haven’t heard an alarm. I rush to check his Dexcom receiver, fearing I failed to hear an alarm in my sleep. Alarm or no alarm, I’m alarmed.
What might Casey’s Type 1 look like on more challenging days? Picture night time. Casey is already sleeping. I check on him before I go to bed and his blood sugar has gone low. I urge him to wake up enough to drink, stick a straw in his mouth and make sure he drinks the entire 16-carbohydrate box of juice. Casey has become used to sleep-eating and -drinking. Despite treating his low, the Dexcom receiver continues to signal falling blood sugar. It’s actually likely to be rising, however, because the Dexcom lags in registering the juice’s effect, so you can’t go back to sleep yet. You have a choice: either wait about 20 minutes until the Dexcom receiver indicates return to a safe blood glucose level or else go through the time-consuming process of manually testing it with a finger stick.
But Casey’s blood sugar still keeps dropping. I don’t know why. I checked him manually and the Dexcom confirmed the drop. I think I went through two juice boxes, a special glucose drink, a spoonful of peanut butter, and some glucose tablets over the course of the night. I barely slept. Casey asked me the next morning why I kept waking him up all night. I was trying to keep him out of the dangerously low zone.
The next day Casey’s Dexcom receiver gave blood sugar levels that contradicted the results of manual testing. And the discrepancies were huge. Where the Dexcom showed his blood sugar in the low 200s, manual testing showed it to be in the high 500s! Now his blood glucose was dangerously high. We were horrified. Something was obviously wrong. After some investigation, it turned out that the transmitter attached to Casey’s Dexcom sensor had passed its expiration date a week earlier. A transmitter’s life span is three months. The Dexcom sends an alert when the transmitter is expiring, but we never saw the message because it can disappear when Casey or anyone else presses buttons on his hand-held receiver. Lesson learned. I now keep the expiration date in my phone calendar. I changed his sensor and transmitter, dosed him with enough insulin to bring his high blood sugar down and waited for our world to recover some sense of normal. Type 1 is a rollercoaster ride that doesn’t ever allow you to get off for a break.
I felt like a zombie that day. I had been worried sick, confused, sleep deprived and frustrated. It was our holiday with family and all I wanted was for him to have fun and me to happily relax. Instead we both ended up in tears. Technology is not foolproof. Humans are not foolproof. Managing diabetes is not a recipe you follow. It’s a relentless job requiring constant problem solving. It’s a day job and a night job, too.
Casey will one day have to take over this critical work. He may have to wake up to alarms all night long, stop playing in the middle of a sports game, leave a conversation suddenly and drop what he’s working on. And there isn’t a choice. You can’t opt out. You can’t just go back to sleep, ignore the alarm and sleep late. You can’t keep playing soccer, partying, or working just because you don’t want to stop. Whether you’re tired or not, busy or not, having fun or not, you must act. A vigilant person. A juice box. Insulin. An alarm. It sounds so simple, but it’s not. Maybe it will be someday.
Lisa and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.