So my son has had his insulin pump for over five months now. I keep waiting for it to get easier but it really doesn't seem to get easier. He has his CGM and his insulin pump but they aren't a closed loop so I'm acting as the moderator between them. I guess I thought it would be easier by now. I thought that once he was on his insulin pump and we got things dialed in that it would be better control than multiple daily injections. Some days it goes great and other days, not so much.
We've been in a "not so much" slump for a couple weeks now. My son is almost twelve and he is definitely growing right now. His favorite shirts are looking a bit small and clothes that were just a bit too big are now fitting him fine. This is good and exciting and exactly how it should be. It also seems to be affecting how well the insulin pump is working for him, or not working for him.
So we'd spent about a month with his BG in range about 80% of the time. That is about the same as we were getting on the multiple daily injections but his quality of life was dramatically improved with the pump. He could go about his day and I could give correction insulin or cover for an upcoming meal without giving him a shot and he much preferred that. I was much more likely to give extra insulin as needed too. His pump lets him have different basal rates throughout the day and we had spent a lot of time adjusting these to be just right. We never really had a pretty straight line like other people seem to post online. I know, I know, people post their best moments and show you their best days but I had hoped. We'd have some portions of the day with good control but each meal still seemed to cause a high for over an hour and sometimes we'd have a stubborn low for no predictable reason.
For the past several weeks though things have been wonky, wonky, wonky. It is currently 10:20 pm as I'm writing this and I'm up because his BG is at 282. He ate dinner at 5 pm and his BG was a nice little hill then on the lower side of in-range at 90 for several hours. Then, an hour before bed and with no additional food, his BG started rising and just kept rising. I gave 2 units of insulin and waited 30 minutes but the BG kept rising and was so far above range that the insulin on board wasn't going to bring him back under 200 so I gave 2 more units and watched that BG just keep rising. When I went to check if he was sleeping he said "this pod isn't working, I'm too hot, I just want to get some sleep." So we changed the pod, early. I also gave an injection of 3.5 units to try to get him back into a range where he can sleep. Now I'm just waiting for something to take affect. That was only fifteen minutes ago but I feel like I've been awake for hours.
His basal insulin rates haven't been keeping a line lately so we've been adjusting them. This is a slow process. You watch the data, make smart changes, watch the data some more and then when you think you have it right, your son has to do a fast for several hours so you can see if it is correct. A correct basal will keep within 20 BG for the time without food so you watch for that fairly even line. If you get it, GREAT, you move on to the next time of day and do the whole process some more. If you don't get it, BOO, you have to keep working on it. We've now increased my son's basal insulin from about 12 units per 24 hours to about 15 units per 24 hours and things are still not right. A basal rate will seem right for two days and then on the third day he either rises or descends for that period.
Admittedly, we've already determined that his insulin pods don't work nearly as well on day 3 most of the time and we've gone so far as to change our prescription so that we can change them every 2 days instead. We haven't fully committed to this and try to make the pod last three days. 1 in 3 pods works fine on day three for him so it still seems worth it to try. Unfortunately it feels like we are watching and tinkering and giving correction insulin and just thinking about T1D all day every day. Okay, okay, it is just me who is thinking about it all day. My son is living his life. My partner is living his life. I'm living as both a human and a pancreas and I'm feeling a bit of fatigue from the situation. This fatigue I get comes and goes with this T1D. Sometimes I feel like I've got things pretty well in hand and even though it is a lot of mental energy, I feel okay about my role. Other days I just want to throw in the towel. Say "eat whatever you want" and ignore the incessant beeping and alarms from the Dexcom. But I don't and I won't and I can't. Someday this will all be his responsibility. Someday I'll lay awake and night and wonder if he is doing okay, if he's low, if he's high, if he's eating right. So for now, I put on a good face and make the best decisions I can and try to model for him how to stay calm and carry on.
Well BG is down to 279...not much lower than ten minutes ago...maybe another fifteen minutes.
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