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Type 1

The Midnight Hour

by james s. hirsch

It’s 1:24 a.m., and time for Garrett’s last blood sugar check of the day. Or maybe it’s his first check of the next day. Whatever. I grab the glucose meter and head into his bedroom, where my son is visible in the nightlight’s amber glow.

Garrett is eight years old and has had type 1 diabetes for five years. As parents, our biggest fear is a nighttime low – his blood sugar crashes while he’s asleep, and he doesn’t wake up and doesn’t make any noise that would alert my wife or me.

To be sure, medical technology can make overnight lows less of a threat. Continuous glucose monitors are designed to alarm if your blood sugar falls below a certain level, and the alarms are loud enough to wake the whole house. False alarms can be quite aggravating, and whoever is sleeping with you may be looking for a new partner if the thing keeps going off in the wee hours of the morning. But make no mistake: preventing overnight lows is one of the most compelling features of this technology.

I know that some kids use the CGMs, but that’s pretty rare – it can be too much technology, too much hardware for a child. Future generations of CGMs will be simpler and more integrated into pumps, so perhaps their use by children will be much greater. Garrett uses the OmniPod insulin pump, but we still check his blood sugar the old-fashioned way, with a finger prick and a meter.

In many ways, Garrett’s day revolves around blood checks: before breakfast, and then – with the help of his school nurse – before morning snack, lunch, and afternoon snack, and then before dinner and then before evening snack. That Garrett, and many other type 1 kids, subject themselves to that routine and rarely complain is a miracle, nothing less.

Garrett plays soccer, basketball, and baseball. The coaches are great, but we would never expect them to tend to Garrett’s medical needs, so I attend virtually every game and practice with his meter and a juice box. Sometimes we’ll test at half time or between innings. One time Garrett was standing on first base and he yelled, “Daddy! I think I’m low!”

That’s a helluva time to tell me, I wanted to say. I asked if he wanted some juice. He said no. When he got back to the bench, I tested him, and he was fine.

The burdens and cost of testing can be significant, but the alternative is worse. Home glucose monitoring began in the late 1970s and early 1980s. Before then, maintaining near-normal blood sugars with urine tests was virtually impossible. And with children? Forget it. Their erratic schedules, unpredictable diets, and growing bodies cause their insulin needs to change by the day if not the hour, but back in the Dark Ages, without home blood tests, the parents lacked the information they needed to make the adjustments.

My heart goes out to those parents, 30, 50, 70 years ago, who would put their diabetic child to bed and just hope their precious bundle would wake up in the morning.

Nowadays, many parents set their alarm clocks for overnight checks, but I’m a night owl, typically at my computer long after everyone else has gone to sleep. So I don’t mind doing the checks, though this isn’t exactly the routine I would sign up for. Sometimes I have to drink a cup of coffee to stay awake. Sometimes I have to drink a glass of wine to fall asleep. But I do the checks, every night, between midnight and 2 a.m.

James’s son Garrett (right), Camp Joslin’s very own “Mr. Hustle”

Garrett knows this is the routine, but he never wakes up, which is kind of nice. If he’s high (over 180), I’ll correct him by pressing a couple of buttons on his insulin pump. If he’s low, I’ll prop him up and put a juice box to his mouth, and he’ll sip from the straw without opening his eyes. I don’t think he’ll remember it in the morning. I love it when he’s right in range – safely between 100 mg/dL and 150 mg/dL – but I’d be lying if I said that happened more often than not.

It’s 1:24 a.m., and time for Garrett’s blood check.

At least he took a shower before bed tonight, so he has that freshly scrubbed fragrance that reminds me that sometimes boys do get clean. On the field, he’s fast, coordinated, and wiry – at Camp Joslin, he was voted “Mr. Hustle” in basketball. But he pouts when he loses and will cry after striking out and his teachers are concerned that he’s too competitive when he plays four-square at recess. But now he sleeps soundly beneath his Spiderman blanket, and I quickly prick his finger – more than 12,800 finger pricks in his young life, but who’s counting?

I apply the drop of blood, and the reading comes out: “321.”

Damn. I check again: “311.”

He was 91 at evening snack, so we screwed up somehow. Maybe it was the extra cheese on his pizza at dinner, or maybe I miscalculated his carbs at snack, or maybe the recent lowering of his basal rate went too far, or maybe this is the metabolic life of an 8-year-old boy – chaotic, random, inscrutable.

I deliver the insulin, walk out of the room, and flip off the switch in the hall.

The morning light is a few hours away.