Thursday, September 20, 2012
We've added a new piece of medical technology to our arsenal. Yesterday, Grace was put on a continuous glucose monitor (CGM). A CGM is a piece of equipment many diabetic folks use to help them get a really solid idea of what their blood sugar looks like. Over the summer, Grace had two extremely low blood sugars that were almost 100% asymptomatic. A normal blood sugar is around 100. We give sugar to Grace any time her sugar starts to drift below 75. A low blood sugar can come from physical activity, too much insulin, or, it can be pretty random. Typically people feel lightheaded, have shaky legs, or become confused. Grace didn't really exhibit any symptoms when she had a 28 and a 32. This is extremely unusual. I emailed Grace's doctor and I knew it was bad because he called me back right away. He was concerned that Grace might be experiencing more low sugars than we were catching and that she may have become desensitized to the low sensation. He encouraged us to immediately book an appointment through the office for an ipro CGM.
The CGM is inserted under the skin very similar to Grace's insets for her pump. A long tube stays in the skin and takes glucose readings every five seconds. That's pretty insane to me. It stays in for a week and then the doctor pulls the data and can tell us exactly where we need to make adjustments in Grace's insulin. Ironically, we are now experiencing problems with high blood sugars that climb over night. The data from the CGM can also help us address those.
Grace was very anxious about the CGM and neither of us really knew what to expect. Our favorite nurse educator was going to place the sensor. We love Erin-she helped us get started on the pump. But what we didn't expect was the large audience that came to watch. Grace was the first kid at CHOP to have the latest release of the sensor. In our room we had two nurse educators, 3 Medtronic reps (the company that manufactures the sensor), and, at the end, one of the senior doctors in the practice. I felt bad for Grace. She was giving everyone the "pursed" smile. The insertion went great and is very similar to having a pump site inserted. What we didn't anticipate is just how big the thing is. The sensor is under the skin but the chip that collects the data is seashell shaped and sits above the skin.
We waited for a while for the sensor to start working and then met with Dr. W who supervises our doctor. Our doc (I mentioned this before) is a "fellow" at CHOP and is overseen by the senior physicians. We've met Dr. W before but always very quickly for him to sign off on our visits. Yesterday, he came in, and walked right over to Grace, put both hands on her knees, looked her right in the eyes and said, "You're going to be ok sweetheart. I promise you-you'll be just fine." Grace looked right at him, again with pursed lips, and nodded. I inhaled and exhaled. Grace was worried the sensor site had a good amount of blood near it but the doctor assured us it was normal and actually a good sign of a well-placed sensor. He cracked all kinds of jokes which made us laugh. He explained to Grace why she would wear the sensor and confirmed that those bad low blood sugars were very concerning. He went on to say to Grace, "Dr. G tells me your mom worries a lot about you. We don't want moms and dads to worry too much so we have this cool technology to help them. Mom loves you so much, she wants to keep you safe. It's only a week you have to wear it and you're done. Then mom can sleep better." I was basically staring at the ceiling, biting my bottom lip, trying not to sob. CHOP gets it. It's not just about bodies, and blood sugars, and aren't these little people interesting with their medical problems? Our team had discussed me, my concerns, and came up with a plan to help all of us. I walked out of there relieved, tired, and wanting to curl up under the covers with Grace for a week til this is over.
Next Wednesday the sensor comes out and we can see what it tells us. It's a relief to put this issue in someone else's hands. The doctor was honest and explained the data could be all over the place and we might have to try again in 3 months. To me, it's worth the risk and inconvenience. Grace has been handling it all like a champ. She's annoyed by the size of it, it's itchy, and kind of bothers her when she sits. I hate seeing it on her. She has her site for her pump and now this. She's looking somewhat bionic which is really disturbing me. But she's happy. She went off to school today and barely a word was said about it. We're off to soccer in a minute and she hasn't said a word about it. So I leave her alone. My issues are not her issues. I think this is a good policy to stick to.