I Can’t Count All the Snows

“I didn’t know it was morning,” Henry said as I raised the blinds in his hospital room. “How did it get morning?” he asked.

“You went to sleep last night, and got better. Now it’s morning. And look,” I said gesturing to the window, “It’s snowing.”

He looked out of the window, his arm held straight, but at an odd angle by its IV splint.

“I can’t count all the snows,” he replied as his eyes darted from heavy flake to flake melting just above the labyrinth of the hospital’s lower roofs.

My eyes felt like someone had rubbed them with sandpaper. Less than twelve hours before, in the ambulance ride from one hospital to the other, I tried to count the number of his hospitalizations, the nights I’d slept beside his isolette, in his hospital bed, or not at all. I lost count after fifteen.


But this is not that sad story. There will be sad (and happy) stories to come, and more nights to spend in his hospital rooms. That’s life with type 1. Instead, this is a story of advocacy; there’s power in knowledge.

Tummy bugs can be dangerous with type 1 because ketones develop quickly, while blood sugars often drop. As if this weren’t complex enough, the nauseous person can’t keep anything down so it’s dangerous to give the insulin and fluids needed to clear ketones. If ketones are high enough long enough, then DKA develops. Thankfully, an IV with a sugar drip is a simple solution.

This time, it took two hospitals, an ambulance ride, and eight attempts to start his IV. Early in the morning, on the pediatric unit, his ketones moved from large, to small, to trace, and we took a deep breath, once again witnessing the “difficult magic” of diabetes.

I watched Henry sleep and thought of the tense moments last night as the sixth or seventh person dug in his hand, searching for a vein while Henry cried out in fear and pain, his blood sugar teetering at 68 and large ketones, the blood work showing that he was becoming acidotic, the well-meaning medical staff, whose experience with type 1 was nascent.


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Outside, the first flurries of snow were falling, after a warm and protracted fall. Finally, the season’s cold was descending. In a few hours, we’d be on our way home from the hospital with another reminder that type 1 diabetes is a balancing act between highs and lows, too much, too little,—an emergency and the everyday.

 

A Time Diabetes Bossed Us

Henry’s recent love of Angry Birds Star Wars on his iPod and the curvy roads back East let us know that he gets car sick. About 40 minutes into our 571 mile trip back from the beach, (which should take about 9 hours) he began to feel sick.

Car traveling jacks up Henry’s blood sugar, so to compensate, we increase his basal temporarily to deliver 80% above his normal basal rate, which usually keeps his blood sugar between 80 and 150. However, one look at his continuous glucose monitor (CGM) told me his BG was falling. I tested his blood for the glucose level and ketones. His blood sugar was 62 and he had moderate ketones. We’d entered the terrible T1D paradox of nausea. Insulin and fluids are what flush ketones out of the system, but with a low BG and a sick tummy, it’s difficult, if not impossible, to take in or keep down carbs so that insulin can be delivered.

I climbed to the back seat and canceled the temporary basal increase. I coaxed Henry to eat or drink any carb he wanted, but apple juice and Airheads made him gag. We pulled into a gas station, and after some really dramatic moments, he managed to swallow a Dramamine with some apple juice. We walked around, and I panicked purchased a number of candies that came in a gel form, a sleep pillow, and a roll of paper towels.

Within half an hour we were back on the road, two arrows up on the CGM, Henry drinking sugar free liquids, insulin delivered, and ketones gone. It took a while before he felt like eating, but when he did, we stopped at a place Henry named. When it came time to place his order, big tears welled up in his eyes, and he said he didn’t want to eat there. Normally, Henry loves mealtime, so this behavior threw us. Finally, he decided on a bowl of rice, black beans, chicken, and cheese, and we bolused for half of it.

Henry ate half, and saved the rest for later. Later arrived, and we bolused for the rest as Henry grazed in the late afternoon. I  watched his blood glucose rise to 200, then 265, then 310, then 381, then HIGH (on a CGM this means it’s above 400). All the while, I rage bolused more insuiln, .5, then .75, then 1.5. I poured on the fluids. With a high blood glucose and lots of fluid, we got to visit no less than 7 gas stations (and a bucolic roadside) before dinner, which we were holding off on until his blood glucose was below 300, so the kids had an 8 p.m. dinner.

Recently, we were at the Friends for Life Conference in Orlando, FL, where the closing keynote speaker challenged the audience to think of how diabetes had enriched our lives. When presented with this question, my first thoughts were sardonic. It’s easy to think of all the negative ways that diabetes has altered my life, and most significantly and importantly, my son’s life. However, the easy type of thinking is not very useful. Diabetes is difficult, and demands a complicated response. The way I see my son is beautifully difficult. I see a five-year-old with a generous spirit, a kid who has endured more medical procedures than me, even though I’ve been alive seven times longer than he has. I imagine the courageous person he is already becoming because he has to live with type 1. Diabetes has allowed me see me son, and yes, I mean, “I see you,” in James Cameron Avatar kind of way: a great empathy that is a heart always breaking open to need and contentment.

 

A few more gas station stops later, we were finally at our destination eleven and half hours after we started the trip. We’d blown right past bedtime, and when I tucked Henry in he said, “I don’t like diabetes.”

I said, “I don’t like it either. Why don’t you like it?”

“I don’t like diabetes because I have to wait to eat yummy candy like Airheads, and they taste delicious. It’s not fair”

Henry’s starting to realize that his diabetes makes him different. The times when he tells me that he doesn’t like diabetes are hard, and I know it’s imperative for me to be really present in these moments, but my thoughts spill out like paint splatter. Immediately, I think it was a poor decision to introduce candy as a treat for lows. I wonder how we could have been so shortsighted. I think about watching family members who are able to give their kids lemonade, crackers, juice, and candy without a second thought. I’m with Henry, it’s not fair.

“You know what, Henry,” I said. “It’s not fair, but because you have diabetes, that means we take really good care of you, and you’re going to be healthy when you grow up.”

I think about telling him that candy is like medicine for him, but think better of it. I want to keep as much of his childhood diabetes free as I can. I want candy to be just candy.