Last month the New York Times (NYT) published a controversial front page article describing the exorbitant cost of care for Type 1 Diabetes. More specifically, it addressed the high price tag for technological advances of glucose monitors and insulin pumps Thousands of readers across the country were outraged and insulted, claiming that the article trivialized the development of these life-saving devices http://www.nytimes.com/2014/04/06/health/even-small-medical-advances-can-mean-big-jumps-in-bills.html. Since two of my three children are completely dependent on their meters and monitors, I was both shaken and surprised when I read it. I felt numb, then nauseous, and then grateful that I had a full Sunday of my sons’ activities to distract me.
Four days prior to this publication, one of these “gadgets” may have saved my son’s life while he was on a school trip to Washington D.C. It was Sam’s first time away from home other than sleepaway camp where , as camp doctor the first week each summer, I train the counselors to wake him during the night or the occasional a friend’s sleep-over, where I either call his phone or the parent wakes him to check. This school trip was a new experience. Two weeks beforehand, he started using the Dexcom CGM, a small device which continuously displays his blood sugar at any given moment . It is not perfect. It requires a separate needle and insertion site and calibration with the fingersticks several times a day, but it is very helpful in warning the direction of dangerous highs and lows.
The first day and night of his trip were non-eventful, and I barely heard from him. But the second night Sam called me at 2:30am to tell me that his CGM vibrated and woke him because he was running low, and he confirmed by fingerstick that his BG was 30. He took some emergency gel, went back to sleep , then woke up and called to tell me it came up to safe level of 150. I was 300 miles away, and my heart nearly jumped out of my chest. I told him he did a great job, he did the right thing, and I would call him each hour. I called his actual room, because he no longer woke up to his cell phone. I called each hour, annoying the front desk clerk each time to transfer the call because Sam never answered on the first five rings. At one point she sighed “Mam, it’s 4:30 in the morning, I’ll transfer the call, but they are all sleeping.” I called the school chaperone’s cell phone as well, just once that night, to make him aware of the situation. Sam was fine the rest of the night. And then, finally, it was morning, breakfast time. Sam sounded tired, but ready for the return trip and stop-over in Philadelphia.
A BG (blood glucose) of 30 during sleep can be terrifying. While awake, a person with a BG of 30 may be ok, or may seize, or become unconscious. If they are asleep, there is a chance they may never wake up. Hypoglycemic events are the most common cause of mortality in today’s young Type 1 diabetic population. It is the reason why parents wake their children during the night to check them. It is the reason why, when their child is out of their sight, the parent of a diabetic child may never truly relax. Sam had never been so low overnight. Why? Could it have been the travel, the sudden warm weather, different activity? We can’t know for sure.
As diligent as we are about managing diabetes, there is only so much we can do proactively. When emergencies happen, we need to be notified and react immediately. Sam’s CGM alerted him he was low, he somehow did exactly what he should have done, although I told him next time he needs to wake up one of his friends. He must know to make someone else aware of his situation. The whole experience shook me to my core. Most importantly, I was proud of him, and beyond grateful that he was ok. And yet I couldn’t (and still can’t) ignore my fears of the future, future trips, weekends away, and even the not-so-distant reality of college.
The technology of diabetes care has advanced and enabled us to do more, and feel more secure than we have before. Reading the NYT article was an unwelcome splash of cold water in my face. Many people were angry. I was angry, but more surprised and concerned that people did not acknowledge the importance of these life-saving devices. Anger seemed like a waste of energy. The article mentioned that before the widespread availability of insulin in the 1920’s, Type 1 Diabetics would rarely survive more than a year. This harsh reality, combined with the development of the insulin pump and glucose sensors, makes me appreciate these advances even more. The JDRF voiced their outrage at the article, and started a hashtag movement #notjustagadget. The NYT did respond thereafter by publishing how the advances in diabetes care have dramatically reduced complications in developed countries, and how it remains a global epidemic. These articles seemed to validate the diabetes does warrant a large expenditure to prevent severe complications and death throughout the world.
As for the “gadgets” themselves, for me, the strongest emotion I recall in regard to their importance is how I felt while waiting for Sam to come off the bus. I waited patiently for him to collect his bags before enclosing him in the strongest hug I could manage. I was grateful that we were giving his friend a ride so I could hear their laughter and eavesdrop on their comments, complaints, and recaps of the trip. It diluted the intensity of how I felt to have him home safely, gadgets and all.