Our family friend with Type 1 diabetes always made diabetes look easy to handle. Maybe I was just a young child or naïve adult who didn’t have a clue, but he always handled himself with assurance and grace. He has had diabetes for 50 years and it just seemed second nature to him. As I grew up around him, I saw he needed to eat at certain times, eat a certain amount of carbohydrates and inject insulin before eating, but I never knew what really went on behind the scenes. The hypoglycemia, the hyperglycemia, the almost going unconscious, the actual passing out, the dosing errors, the calculations of how much carbohydrates to eat or insulin to inject depending on current blood glucose level and physical activity. I did not realize diabetes is literally a full-time job, and a mentally exhausting and physically challenging one too.
At his adult age, my friend was very likely able to manage diabetes better than I’m doing for my son, because he could feel what was happening with his own body. As the mom of a diabetic 6-year-old, I do not have that know-how. I rely on Casey to tell me how he feels, although at his young age, he is not able to always express it. At times, before we had his Dexcom monitor, I admit to testing his blood glucose manually for peace of mind excessively and, of course, I turn to my mother’s instinct. One book on diabetes said not to treat blood glucose numbers as good or bad, but just a number. That’s hard. Whenever the monitor screen shows a spinning circle before his number pops up, I find myself holding my breath and saying, “Please don’t be low. Please don’t be low.” I fear seeing something below the target range of 70. As the number pops up on the screen saying 76, I breathe a sigh of relief. I’ve caught his low in time.
Perhaps this is because I have learned that low blood sugar, hypoglycemia, is more dangerous at this point than high blood sugar, hyperglycemia. And it is also more common on a day-to-day basis. I remember driving to a family restaurant for lunch on the way to the grocery store to buy more juice for Casey. For those of you who don’t know, juice has become a lifesaving entity in our house and we resort to it several times a day. It’s the only item that can bring Casey’s low blood sugar back up fast enough. On the way to the restaurant, Casey’s sugar got low, about 60, and all I had were glucose tabs. I gave him four but he got sick as we got out of the car to get him juice. In the restaurant, Casey lay down looking near comatose and incredibly sick. I had given him twice as much juice as normal to treat his extreme low, but it had yet to kick in. His number had dropped to 48 with a down arrow, which means his sugar was plunging. Eventually the number disappeared and all the monitor said was “Urgent Low!” I sat in fear not knowing if I was about to watch my son pass out or, unthinkably worse, die. I checked to make sure I had his glucagon, which is like an EpiPen for diabetics. They can’t ingest anything once comatose, so you have to inject them with glucagon. His older brother checked on him, worried.
For what seemed like an eternity, maybe 30 minutes, I watched the monitor and waited. And waited. I needed to see a number appear on the screen. Here I was in a public place, in complete anxiety wondering if my child would be OK. I messaged his school nurse and asked her what to do. I was scared. She helped get me through this. It was like using a lifeline call on “Who Wants to be a Millionaire,” except it was life or death, not money on the line. Eventually 48 popped back on the screen and slowly, slowly I started to breathe again. We are only five months into our new normal, and I’ve already been through a few traumatic episodes.
On another day, Casey’s blood sugar soared so high during the night. His Dexcom had lost signal before bedtime so I set my alarm to test him at 2 a.m. Upon testing him, his monitor read 529. I retested him to be sure, and the monitor then read “Extreme High Glucose,” which meant his blood sugar had flown past 600. I remembered it was 676 when we almost lost him to ketoacidosis. I couldn’t sleep after that. I tested him for ketones, which was negative. I gave him insulin as high as his dosing chart went before saying “Call doctor” and retested him every 15-30 minutes to see if his blood sugar was going down. It took hours—an eternity—before his reading went down. In the morning, I started breathing again once it reached 300.
Then there was the time when we were headed out for my birthday dinner when Casey went to test himself. He insisted on teaching himself this in his first week of diagnosis. As he carried his medical bin over to the table, the lid popped off and the bin dropped. Out flew his last vial of insulin. I watched it make an arc through the air and come down to shatter on the tile floor. I looked down in horror as the insulin spread through the shattered glass. The synthetic smell of insulin immediately hit my nostrils bringing me back to the smell of the hospital and the fear I felt was like his life could potentially flatline. Insulin to a diabetic is like gold not just for its obviously heavy price tag, but because it is a precious commodity to keep a diabetic alive. We had to rush to the pharmacy and spend a long time there trying to get more insulin. Had it not been called in the day before as a future refill, they might have had none, and even then some insurance issues made it difficult to obtain what insulin they did have. I ask myself, what is a diabetic to do when insurance provides no extra insulin for emergencies? I’ve learned, I would need to rely on my friends with diabetes. They would drop everything to bring me more, truly knowing better than anyone how precious insulin is. Thankfully, we left the pharmacy with more insulin.
Perhaps the scariest episode of all for us as a family was accidentally dosing Casey with too much insulin. We should not take for granted that anyone else would understand his medical equipment as well as we do. And we should explain it as if it is the first time even to a veteran of diabetes. Accidentally overdosing is not uncommon. Why is that? The reasons are many. So many people are asked to be doctors who aren’t trained; the needles vary; insurance won’t approve equipment for proper pediatric dosing of insulin, making dosing both less accurate and more prone to error; and because we are human and make mistakes. Even nurses and doctors make dosing errors. The first dosing error of 10 times the amount of insulin miraculously went by without an effect on Casey because he got so hungry, a side-effect of low blood sugar, that he ate a large protein pack of meats and cheeses. I believe this blunted the insulin significantly. The second accidental overdose three hours later was caught almost immediately. I remained calmer than one would guess upon discovering a scary situation perhaps because Casey had already been given a lot of carbs to start counteracting the overdose. When we called the hotline to ask what to do, the doctor on the line was reassuring and even laughed. You know what he said? “It’s Casey’s lucky day! He gets a candy party for the next few hours!” We loaded him up on Skittles, Resee’s, M&Ms, juice, etc. To his credit, he protested at the beginning, exclaiming, “I’m not allowed to have all this with diabetes!” We explained the dosing error, and off he went eating the candy. We even fed him Skittles while he slept. For the next few hours, we had to test him every 15 minutes and give more candy until the insulin wore off. Meal-time insulin generally stays in the system for three hours and that amount of insulin for Casey was a hypoglycemic rollercoaster that went only downhill.
We have survived these scary and trying episodes, but we are only five months into a lifetime. And while they tell you not to look at glucose readings as good or bad, but just neutral facts, I’m not sure that’s possible. Not now, not yet. They say this because they don’t want you to feel bad about your inability to attain normal levels of blood sugar. It can be quite discouraging on a day-to-day basis to be wildly off in every direction and not understand why. But when you are the mother of a diabetic 6-year-old, numbers are all you have. And when you have a child who is always on the go, and the world is not a nutrition menu laid out for conveniently counting carbs, trying to get to a consistently normal blood sugar is like trying to fly a kite in intermittently peaceful and unexpectedly strong winds. The kite takes off flying smoothly, later gets a strong gust of wind and flies too high out of control, only later to lose its wind altogether and come crashing down. And why the wind was perfect for a bit, became blustery and later stopped, is just as inexplicable as why his blood sugar is at times so volatile. There is still so much that is unknown and hard to manage about this disease. We call diabetes a silent disease, because diabetics make it look easy to manage to the unaware onlooker. But behind the scenes it is a full-time unrelenting, exhausting and scary job. I hope one day Casey will give someone else the impression of assurance and grace that my adult diabetic friend does and that in coming years I will be more confident in his care like other mothers of diabetic children. My husband and I are already showing signs of progress.
Lisa Seitles
Hammonton
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.