The water is pretty deep when you have a young child with diabetes. It’s great fortune to have a good boat: supportive family, understanding friends, a knowledgeable medical team, and the welcoming embrace of the diabetes online community. As good as this boat is, well, we’re navigating The Perfect Storm. Water’s been in the hull since we left the harbor on March 6, and we’ve been trying our best to bail out and plug the holes.
I measure how well we’re doing using a variety of standards. How well Madeline is feeling and functioning (we do okay in this department), how close we get to the target range in a given day (that’s laughable), how well I’m able to recognize patterns, test hypotheses and make necessary adjustments (Rut Ro). And then, there’s judgment day when we meet with the endo team, get the meter downloaded, find out her A1C, and answer the myriad of questions.
Frankly, I’ve felt woefully inadequate by most of these standards. This was reinforced to some extent by today’s endocrinology appointment. The numbers tell the story: Madeline’s glucose levels have been higher than target 68% of the time, and her A1C went up since last testing. Rut Ro, indeed.
And yet, a wonderful thing happened that left me feeling like we might actually be able to keep this boat afloat. Today was the first time that I personally met Madeline’s endocrinologist. I’ve spoken to him by phone–usually around 1:30 a.m.–countless times. So many times, in fact, that he knew who we were when we walked in. All of her previous appointments have been with wonderful, extremely knowledgeable nurse practitioners and nutritionists. But they’re not The Endo.
It was a difficult, and yet enlightening and empowering discussion that I had with Madeline’s Endo today. He asked me questions and I felt stupid that I could not answer them. Things like, “what patterns do you notice?” Say what? I told him that I search for them every day, but can’t put it together. “Do you think that her glucose level drops by 40 points when you give a correction?” Uh, was I supposed to know that? I have no idea, I told him sheepishly. Going into this appointment, I had a plan to lobby for a fresh consideration of moving to pump therapy. I had kept being told that it was not an option until 6 months after diagnosis. But, I have my reasons. As I stumbled through his questions, though, I felt my chances of winning the Pump Lobby slipping away.
Then a funny thing happened. Instead of telling me what was going on with Madeline, he began explaining some things to me. Walking me through why this made sense, but that did not. He verbally processed the information right in front of me, instead of leaving that within the confines of The Endo Mind. We problem-solved together. He did not just tell me what new correction factor to use… he explained WHY. Over the course of an hour, we (well, ok, He) isolated four different aspects of her treatment that needed adjustment. We established a plan to tackle each adjustment. He walked me step-by-step through each one, making sure I understood what to do.
And then, the Best Thing Ever happened. It’s time for the pump, he said. There are strong clinical reasons why it’s necessary, he said. You clearly are trying to get tight control of the beast, he said. You are good at analyzing the information, he said. It’s time, he said. We’ll get the paperwork going. Please come to the pump class on Friday. We’ll have it up and running well before the summer is out.
The pump is not the perfect solution, but maybe it will help plug some holes and keep the hull dry. Thank you, The Endo.