I haven’t been very good about sharing our CGM experiences so far. Sorry about that. So busy lately. There’s always something going on. Today we celebrated Ben’s fifth birthday with a carnival-themed party in the back yard. I’m still picking whipped cream from my ears and eyeballs from the pie throw game. Seemed like a good idea on paper. Man, those kids launched those pies at me with a vengeance!
So, the CGM (continuous glucose monitor).
Started off really good. Got a little bad. Then good again. And bad at the moment. Not so much the accuracy of it. That’s been surprisingly on the money for the most part. Just some of the baggage and burdens of it affecting Charlie.
Here I thought the first week of CGM-ing was a roaring success. Charlie seemed to like the control of seeing his sugars. It definitely eased his anxiety a bit. And not one mention of the sensor being uncomfortable. So, I was surprised when Charlie asked for a break from the CGM after the initial six days.
We ended up taking about a week vacation from CGM and then Susanne and I nervously performed our first sensor insertion without doctor/nurse supervision. If you’re a reader of the blog, you’ll know that Charlie freaks out during every site change and it takes a very steady hand to get that infusion set in without a gory scene. The CGM is no different. Actually it is different. The needle is about the size of a tent stake. We are using the numbing cream, but the process still frightens Charlie quite a bit and that part of it is not pleasant.
Susanne, who always does the changing of the infusion set, was prepared to press the trigger, shooting the large needle deep under his skin, reaching his interstitial fluid. But she couldn’t do it. She couldn’t snap the trigger. It’s daunting and frankly, pretty gross. So, it’s me. Her hired thug. With my finger on the button, I didn’t want to do it. I too was pretty gun shy. It was like having a frightened bunny in your cross hairs. I just cringed and pressed the button and prayed it went in quickly without him screaming bloody murder.
Tonight the issue du jour is the beeping. He was afraid to go to bed because the random beeps coming from the pump scare him in the middle of the night. So much so that he was crying and upset and suggesting that we remove the sensor only to put in a new one tomorrow simply to avoid a possible overnight beep.
We really should know better than to do this right before bed after a long day when he's tired.
Fear of beeps. Fantastic!
Two thoughts - I've been using the Dexcom since November, and occasionally put the CGM in a far away room just to avoid hearing it at night. But for a long time, I've had it set on vibrate, not beep. The vibrating is irritating, as well, but slightly less so than beeps.
I wear mine on vibrate too, but if I feel like I need a break I either change the high/low threshold alarms so it only kicks off if I'm really high or really low, or I turn the alarms off completely. It defeats some of the purpose of a CGM but means you get a quiet night and can still look at the CGM numbers when you wake up, but without the irritating noise.
I too hate the beeping. I keeps you up, and is annoying. I actually turned all the high/low alarms off. I look at the thing so often anyway, and felt to lows and highs well before it ever told me so. But I guess it is different with a young child. Do you have the Dexacom, or the one intergrated in the pump? I also go through stages of going off it for a break, but always end up back on, missing it more than I thought I would. A good way to avoid the beeps from errors like "sensor error", and Cal error", and to not have that 2 hour wait time is to put it in before bed, but not turn it on. Turn it on first thing in the morning, and it will ask for a BG reading right away. I thought it was hilarious that you compared it to a tent stake. The day they make that smaller, or even better, have it and a site the same so there is not 2 injections, would be awsome. Thanks as always for sharing Carey. I am an advid reader, and think you have such a charming and funny way to write about your adventures.
Thanks for the update, Carey. Still doesn't sound like anything I'm ready to do with Riley yet.
Thanks guys. I don't believe we have the vibrate option for the Minimed 522 and if we did, that might frighten him even more than the beeping.
Stephbrom: I like the idea of putting it on but not starting the sensor until morning. I think we'll try that. Thanks! And thank you for reading the blog. I appreciate it.
I have the 522, and yes it has a vibrate mode. Funny for me, an adult to have the kid one, but it was smaller and seemed easier to hide it.
Hi, I would love to know more about the continuous glucose monitoring system! I want to know what you think of it and is it worth the hassel and the cost. I will be getting a new pump in August and I am thinking about trying to get one of those to go with it.