In Which I Finally Get My Christmas Wish and It's Not Quite What I Expected

It's been a long time since I posted here. So long there's been an update to blogger.com I didn't know about :). I'd been on a monthly posting trend, but now it's been nearly  two months. The handful of you who regularly check this blog had probably begun to wonder if I'd abandoned it altogether. The fact is, the original purpose of this blog was to get me back into a regular rhythm of writing, and it has accomplished its purpose. I spent most of the last two months working on a manuscript for a new middle grade novel that I've now started submitting to agents.

That said, I find I still have things to say about parenting and invisible disabilities, so I'm not giving this space up altogether. In fact, I have some thoughts that have been simmering for awhile now, so, if the kids let me, I may even go back to posting every day for a week or two while I wait to hear back from agents. 

Do you remember at Christmas when I  posted about wanting a closed loop insulin pump system for Kittygirl? Remember in February when I posted about our frustration that Kittygirls' endo was not giving out prescriptions for Control IQ and not giving a timeline for when that might happen? After that post they actually sent out a letter stating that they were not giving any prescriptions for Control IQ for patients under the age of 14 because it was not yet FDA approved. We figured we might have to wait until the system was FDA approved for younger kids, which, of course, was slowed down thanks to the pandemic.

Then the first week of May Kittygirl had an endo appointment via telehealth. Mr. Engineer thought the idea of a telehealth endo appointment in our case was incredibly stupid. The fact is, we make all of the diabetes decisions involving insulin rates and ratios ourselves, so we don't get any input on that at endo appointments. The only practical things the endo does for us is to measure Kittygirl's A1C and check her pump and CGM sites for scarring. Those two things can't be done in a virtual appointment.

However, we have to have a quarterly appointment to keep getting prescriptions for insulin and other diabetes supplies, so of course we proceeded with the appointment we thought would be total waste of time. It turns out it wasn't for one reason alone. Mr. Engineer mentioned that we'd really love to be able to get the Control IQ prescription soon so that we could get used to it over the summer  and make any needed adjustments so that it was running smoothly by the time school starts back up in August (presuming in person school starts in August, but that's a whole other post). The endo said that she'd check with the diabetes educators about the status of prescriptions for  kids and get back to us. She never got back to us personally. The next day, Mr. Engineer received an email from Tandem that the prescription for Control IQ had been received. It makes me wonder when we would have gotten it if we hadn't directly asked, since we were never contacted and the CDEs should have been well aware that we wanted it ASAP, but that doesn't really matter at this point.

You know the phrase garbage in garbage out? Well, it turns out that applies really well to hybrid closed loop systems. If you don't have your settings exactly right, a hybrid closed loop system is no better than a regular insulin pump. In fact, in some ways it's actually worse because the "smart" actions it tries to take can work against the things you've taught yourself to do to try to keep your/your child's blood sugar in range.

We had many of Kittygirl's settings optimized for Basal IQ, the prescursor to Control IQ, which shut off insulin delivery when blood sugar began to drop. We even changed the duration of insulin action time to 5 hours months ago to get used to it, since that's the unchangable insulin action time for Control IQ. However, we had done nothing to change Kittygirl's correction factor, even though we gave more insulin than the pump wanted us to give every.single.time we gave a correction and she rarely went low when we did so.

I had been telling Kittygirl for nearly a year that, once we got Control IQ, we could start experimenting with some new foods or new amounts of foods that I previously hadn't allowed her to have. So the very first morning Kittygirl asked if she could have three pieces of toast. I agreed, and it was a disaster of epic proportions. I think her blood sugar went up to 300, which, thankfully, is not common these days.

I was pretty frustrated and angry that Control IQ seemed to do absolutely nothing, and Mr. Engineer was pretty frustrated that I allowed the food change in the first place AND that I was frustrated with the system, because we had done nothing yet to change the settings to try to make the system work the best it could for us. 

It's slowly improving. I still don't think we have Kittygirl's correction ratio quite where it should be, and Control IQ still lets her blood sugar get higher than it would if it worked precisely as advertised, but it has definitely helped. When she eats rice or pasta for dinner, it used to be a huge fight to keep Kittygirl's blood sugar from coasting at 250 for hours. It's still hard to get her blood sugar back down at the level we want after a dinner of rice or pasta (particularly if dinner is eaten later than 6pm), but, thanks to Control IQ, it's more likely to coast closer to 180 or 200 than at 250, so that's a step in the right direction.

However, I do now let her have three pieces of toast on occasion, and I seem to have figured out a way to make it work. What I need to do is prebolus the carbs for two pieces, and then deliver the insulin for the third piece in a 50/50 split over two hours. It still doesn't work every time. Toast is a tricky food for Kittygirl, and I still sometimes find myself fighting a delayed spike from it 4-5 hours later (if you know the science behind this please comment, maybe it's the fat in the butter?), but so far today it has worked out well.

One of the best things about Control IQ is that the sleep mode keeps Kittygirl's blood sugar in range without me needing to do adjustments of any kind most nights. This is a huge. We'd gotten Basal IQ settings to the point that his happened probably 4 nights out of every 7, but with Control IQ it happens almost every night. It's great to not be regularly be awakened by alarms.

Speaking of alarms, however, the Control IQ alarms that can't be turned off really annoy me. There's one that sounds when it predicts that Kittygirl's blood sugar will drop below 80 in the next 15 minutes. First of all, we've learned over the past few weeks that, more than half the time, even if Kittygirl's blood sugar drops into the 60's, the suspension of basal insulin alone is sufficient for her blood sugar to rise back into the 80's or higher, so in those cases there is absolutely nothing we have to do. In the cases when she does need to eat something, the Dexcom alarm will notify us that her blood sugar is low. And, finally, about half the time by the time this alarm goes off Kittygirl's blood sugar is already below 80 and I'm looking at the pump like, "You're calling this a prediction?"

The alarm that goes off when Kittygirl's blood sugar goes over 200, telling us that this has happened despite and increase in insulin and we should check that there is no problem with the site or the tubing is also really annoying. Now, it may happen someday that Kittygirl's blood sugar is high because of a site or tubing issue, but so far it has always been directly traceable back to food, and I'm already well aware that the blood sugar is high and frustrated by it, so I don't really need an annoying alarm system to remind me.

Some people equate going from a regular pump to a hybrid closed loop system as like going from a manual shift car to an automatic, but I prefer the analogy of another diabetes blogger that Mr. Engineer read (I'd link to the post, but he doesn't remember where it was from). She likened it to going from a horse and buggy to a manual shift car. It's a big improvement, but it's still quite a bit of work. In contrast, having a working pancreas in this analogy might be like having a self driving car. It just does everything without any work on your part.

I'm glad I finally got my Christmas wish, but it hasn't been totally smooth sailing. That's the thing with diabetes. Unless and until scientists develop a treatment that allows the body to produce the necessary insulin to control blood sugar, it's always going to be a 24/7 job.

In Which I Explain Why This Post Was Almost Never Written

This blog almost died right after the first entry. Why? Because my logical husband made me question if what I'm doing, in writing about challenges my kids have, is ethical. Why do I have a right to post publicly about people other than myself? I thought I was doing the right thing to protect their privacy by not sharing their names or pictures, but then the pointed out that I had shared my name and picture, and that, with that info, someone could fairly easily identify them. I understood his point, but I was also annoyed that, when I shared that I had finally taken a step to do something I'd been dreaming about for years, his first reaction was to question if I was doing the right thing. This is especially important for Squirrelboy, since he is at an age where he's very sensitive to the way his peers view him, and he's not so many years from applying to schools and/or jobs, to which he may or may not want to reveal his disabilities.

Ultimately, since I'm writing this second entry, you can probably figure out that I decided to press on. I did, however, remove my  name and picture from the blog. So I ask that, if you're reading this and know me (which is everyone who reads this at this point), please feel welcome to share this blog widely, but remember not to share our names. I feel it's acceptable to continue in part because I've also cleared it with my family. As long as I keep them anonymous, they're okay with being written about on this blog.

This does bring up an interesting point about our society. When I was growing up in the 1980's, as a general rule, only people you'd actually met in person and saw fairly often knew about your day to day activities. You might tell your best friend or neighbor about the funny  or weird experience you had in the grocery store, but you wouldn't write something about it for hundreds or thousands of people to read, some of whom you'd never met. That is, however, how many of us (myself included) use social media. I don't think this is all bad. Facebook has allowed me to maintain relationships with people I would otherwise have completely lost touch with. However, it has also created a weird category of people I know slightly (fellow church members, for instance) and would normally not have a close relationship, but whose lives I know a surprisingly large amount about. I might not ever hang out with Sally from Sunday School, but I know her sister in law came over for a barbecue last weekend, she's looking forward to a trip to Disney World in October, and she supports universal background checks for gun sales. Sally is, in case it isn't obvious, not a real person, but Facebook "relationships" like that are very real. It's weird to have a window into what people are doing and what they feel strongly about when in any other context you don't know them well and they'd be unlikely to share that information with you.

Reading a blog written by a stranger or an acquaintance is like that too. This person you don't know or hardly know is giving you a window into their thoughts and/or lives that previously only have been given by a tiny subset of people who write memoirs. I have considered writing a blog for a long time, however, because I think there's at least as much potential good as potential bad in this somewhat strange circumstance that our society has created. During various points of my life, reading blogs related to a struggle or challenge I've been going through has been immensely helpful to me. Sometimes because the blogger had things to teach me and other times because it was helpful just to know that I wasn't the only one who had ever had these experiences or felt these feelings. I'm writing this blog in large part for myself, because I'm seeking a new way to express myself. However, I also hope that my thoughts and experiences can be helpful to some of my readers, whether they give practical advice or strategies or they just give reassurance that you're not the only person who has these feelings and these experiences.