Last night was another sleepless night in the Ortiz home. Sadly, this time it was not Gs fault.
I checked TJs CGM on my way to bed last night (like always) but this time it said “below 40”. That’s the first time I’ve ever seen that on his pump and I panicked!
I ran to the top of the stairs and called down to Tony for his kit (meter, strips, and lancet) and juice and told him what the CGM readout said. He threw the kit up the stairs to me and as I ran back to TJ to poke his finger he found a juice box and brought it to me. As I waited for the meter to tell me his actual BG I prayed that the CGM was wrong.
Thank God it was! However, we was at the other end of the spectrum. While 40 is definitely too low, 302 is too high. And the CGM is only supposed to be off by 20%. We double checked the meter (maybe I didn’t clean his finger well enough) and while this time the number was slightly better (low enough that we don’t usually dose for it at night).
After a 45 minute phone call the only new info I had was that we should calibrate at least 3 times a day and that I shouldn’t have calibrated after a bolus (dose of insulin). I don’t understand how my calibrating the second his bolus was done affected his CGM since it takes 1 hour for the insulin to start working (and usually doesn’t affect TJ until 1.5-2.5 hours later). But whatever! It’s not FDA approved for that, or for kids under 7 or for any body part other than the tummy, so I guess we’re breaking all the rules and the CGM shouldn’t work? The rep kept recommending I talk to TJs Endo about alternative sites/options/whatever because she couldn’t tell me to do anything that isn’t FDA approved.
I am definitely going to talk to his Endo (thankfully he has an appointment this Monday!) but not about better ways to use the Medtronic CGM. I’m going to tell her all about its inaccuracies and about Medtronic’s inability to explain why it worked fine for the first 4 months but doesn’t any more. And then I’m going to fight for a prescription for a Dexcom G4 CGM. It’s newer, more accurate, less painful, and just better!
Tonight I stay awake waiting to calibrate (over 1 hour after a bolus or carbs– more like more than 4 hours so his numbers are stable). Another sleepless night. Not because of crazy lows (or highs) but because I don’t know what his sugars are doing. I don’t know if they’re going up and he needs more insulin, or if he’s headed super low and needs juice. I just don’t know. I won’t know until his sensor is ready to be calibrated and it starts giving me numbers and trending. So I stay awake and wait. Wait for it to beep and let me know its ready. Then I’ll finally go to bed, but I’ll be waiting and sleeping fitfully while I wait for it to beep again because it requires two calibrations in the first 6 hours after insertion.
I really don’t feel confident that I will know even once his CGM is calibrated. It’s been so far off so many times lately that it almost seems useless. Almost. It’s been close for about 2 of its 3 day life. So, I guess that’s why I keep insisting that we put a new sensor in.
I would rather see the arrows and hear the alerts even if they are wrong 40% of the time (because its right 60%, right?)
It lets me sleep, because it wakes me up if he’s out of range. And I would rather be woken up for a false alarm than have no idea what his sugars are doing. It’s my security blanket right now, a very inaccurate, frustrating security blanket and I can’t wait to switch it out for a newer more accurate, less painful (and intimidating) blanket that I will hear even better than this one at night!
I’ll leave you with something funny. Last night, before all this drama, G and TJ were having a lovefest on TJs bed. And then G decided he’d had enough.