For over a year, our daughter’s (the Bear) pattern has been to wake up around the same time as the BHE (best hubby ever) and crawl into bed with me until it is time for us to get up around 7 a.m. Love that warm, snuggly time… at least when it doesn’t involve lots of kicking or trying to push me off the edge of the bed. From time to time the pattern would switch to her coming in at 3 a.m., but we would quickly try to change it back. A side “benefit” of this pattern that I didn’t completely recognize until the past couple of days was that I knew when I woke up (when the bear crawled into bed with me) that she was ok. No matter what her bg was when I tested her at 2:30 a.m. (or at my bedtime for those rare nights when I don’t test in the middle), she was functioning at 6 a.m. If you are a parent to a T1, then you know about that bit of fear that always lives in your head & your gut. The bit of fear (that honestly sometimes does grow to be very big) that makes quiet mornings a nightmare.
The past two mornings have found me waking up with no warm, little body in the middle of my bed. This in addition to the fact that since Christmas (when we set up a guest bed for my mom), the Bear has wanted to sleep in that bed in her future bedroom. Usually, she sleeps in the room that is adjacent to ours, where I can hear her breathing and nighttime noises. Her future bedroom (current playroom) is on the lower floor and on the opposite side of the house — the farthest point from our bedroom. Having her close was no guarantee that we would know if she was low overnight, but it was still reassuring.
New Year’s Day, the BHE was in bed and had tested the bear somewhere around 4 a.m. when she was fine. Yesterday, just me. And, I had tested her at 2:45 a.m. and she was 72. We’re back to seeing a pretty big rise between night test and fasting so I set a temp basal for 4.5 hours for 97% and felt good about that. Until the morning. 7 a.m. alarm and no sound from downstairs. Not that I would be able to hear anything from that distance. No matter. The panic starts to rise. Yet, I used the bathroom, got dressed, gathered up my CGM, meter, fitbit… I know a lot of parents of T1s would be horrified to know that. Part of me is horrified too, but part of me knows what happens when I give in entirely to that fear. If I let myself go all the way to threat level red, grab the glucagon, and run to her room every single time that bit of doubt and fear rises I will be sending myself into a place that is bad for both of us.
The last time that happened, I had been spending a lot of time on some FB groups with lots of parents of T1s and a few T1 adults. I have belonged to these groups for ages and their support, advice, stories, and knowledge is comforting, useful, and really helps make me feel not so alone. For whatever reason, at that particular time, there were tons of posts about “dead in bed” syndrome (honestly, I can’t even say it in my head to type it without feeling a bit nauseated). This went on for many days, maybe even a week. I started to feel more and more paranoid and guilty. I would think about how I would feel if I didn’t test her at midnight or 3 a.m. and in the morning she was dead. Whether I could live through that, that I would not want to live through that. How could the BHE stand the sight of me? How could I be so selfish as to put sleep ahead of the chance to save my little girl? This line of thinking led to me testing her every 2 hours overnight, keeping ridiculously detailed logs, making minute changes, and interrupting my own sleep hugely and hers slightly – definitely leading to higher bgs for me and maybe for her as well. (amazing how all those high numbers I was trying to battle mostly went away when I wasn’t testing as often…)
As parents of T1s, we know the risk. We know it more intimately than most parents I think, and we face it every time we wait for the meter to count down. Every time we feel lucky, we know there could be a time when all of our best efforts don’t work and our child will become seriously ill or even die. [Sorry, this is so not a cheery, new year post]
So, to anyone horrified that I got dressed before checking on my daughter this morning, my only explanation is that the chance of anything that bad having happened to her between 2:45 a.m. and 7 a.m. is very small while the chance of me turning into a paranoid, obsessive-compulsive angel of death that throws her own diabetes health under a speeding bus that she created herself is actually quite high.
There has to be some happy medium in between those two scenarios. So, I try not to test her every night — if she is in range when I go to bed (and not significantly higher or lower than she was 2 hours earlier when we tested her when she went to bed), and the recent nights have been good with acceptable fasting bgs then I don’t set an alarm for 2:30/3 a.m. (though if I wake up anyway, I usually will get up and test her). If we are experiencing strange overnight or fasting numbers I will do some basal testing but will put a limit on it at the beginning (ie: I will do the basal test for 4 nights, or just on the weekend when the numbers are wonky) so that I don’t turn it into a 6-month long basal test that doesn’t help anyone.
Do I need to say that this is NOT medical (or even life) advice? YDMV and YKDMVfMKD (your kid’s diabetes may vary from my kid’s diabetes), etc. When I talk to newly dxd families in our practice I always tell them that they will find what works for them and that is the best management for their child — not what anyone else is doing unless you try it and it does work for you as well.
BTW, the Bear is doing great as far as the numbers go… she has had T1 for just over 3 years (12/20/10) and her last A1c was our lowest yet and well within the
range that her pediatric endo wants to see. She runs higher than I would like, more of the time than I would like, but until she can recognize and communicate that she feels low that is going to be our reality. I think if we were in a phase where her management was very unpredictable and we were really struggling with her numbers I would let that bit of fear and doubt get a little bigger – let it be the survival response it is meant to be.
Instead, I should probably be worrying more about my own T1 — where it gets tricky. I wrote about my own hypoglycemic unawareness and I know I need to do some work on that in the coming months. Wish me luck — given past experience, I will need it 🙂
(I’m hoping to force myself into some accountability by posting my successes and failures with that on twitter. You can find me at @poeticlibrarian)