More than numbers
Grace sees the greatest pediatric endo around. She is smart as a whip, funny and knows her stuff. We adore Dr. B in many, many ways. We see her about 2 out of the 4 times we go a year. Otherwise, we see the CDE in the practice. We have one mainstay who is terrific. She's kind, thoughtful, smart and really knows Grace.
While they are great, I always feel like I am missing something when we go to her quarterly endo appointment. Sure, they weigh her, they take her height, we give blood for her A1C, they check her thyroid, they do all those things that are important. But all those things are one small, small, piece of her care.
Our endo downloads her OmniPod PDM in the office. She has access to the graphs of her Dexcom, if she has worn it or is wearing it. And faithfully, her endo and her CDE sit down with me and we look at them together. And my eyes want to roll far, far, far back in my head. I almost want to laugh, but I don't. I don't want them to think I am laughing at them, because I am not. It's just we find ourselves in this situation where we are looking at specks of sand in the desert.
"What happened here on Wednesday? Why the 54 BG"
"Look at this high, why didn't it come down? What did she eat?"
"Thursday had two lows, we should adjust her basals."
Those are the kind of comments that they say. And they mean well, bless their hearts. They do. They want to fix. They want the steady line on the graph, the in-range numbers, the perfect dose for the perfect carb count.
"Grace has dance on Wednesdays for two hours straight with no break. We've already reduced her basal with a temp basal rate for 2 hours, the 54 BG was her coming home, at 9 PM, after dancing a routine for close to two hours. I think 54 was pretty damn good."
"That high was the result of going out to eat with friends. She had the pasta and then decided to eat two more breadsticks, then have dessert. We carb guessed it all and I kissed it up to God. The three hours of getting the high down was worth the night of fun."
"Thursday night she had play practice until 6 PM, then I had to pick her up, she ate in the car, then had to be across town at her dance class until 8 PM. She had a hoagie and some chips, but only ate 1/2 the hoagie as she was full. So, I backed out of the dose by throwing in a decreased temp basal for 2 hours at 30%. I calculated it. It's not her basal that needs adjusting."
Then they just look at me. And each time, they tell me I am doing 'a great job.' And her A1C comes back and it's 6.4, 6.7, 5.9, 6.2. They marvel at a great A1C in a pre-teen. And I smile. They must think I am a freaking rocket scientist. Alas, I am not. I am barely making it through each day.
As much as they want to understand, they do not. I want to give them Grace, or any Type 1 child, only for one week. I want to tell them - "Lead a normal life with this child, and you calculate every dose, work full time, and have two other kids. Make sure she is always in range, never has a low, never has two lows in one day, and most of all, never has a high that refuses to come down. Oh and make sure you always have enough supplies. Be ready to fight the insurance company for everything she needs. Good luck!"
I want our healthcare experience to mirror the reality we are in. I want to talk about the insurance fight for ketone strips and how they can help me. I want to talk about the bionic pancreas and the future of technology in diabetic care. I want to address the emotional needs of caring for a child with a chronic illness. I want them to address with Grace the feelings of having diabetes. I want them to not give a shit sometimes about the A1C. I want Grace's healthcare to address the whole person that she is. And I want to see the desert, not the specks of sand.