Sleepover: Behind The Scenes in 20 Screenshots

Sleepovers are the bane of my existence. It’s hard enough to manage T1D when V is sleeping a few feet away in her room. When she is elsewhere, we become the 24-hour on-call support and security center. Some nights are completely uneventful. Other nights we barely sleep. This is another invisible aspect of diabetes management, which most people are hardly aware of. I’m about to give you a little glimpse of what it takes to manage misbehaving BG when V is sleeping away from home.

V spent last night at her friend’s house. Before she got there, the daytime BG was fairly good. Trouble started brewing around dinner time.

So everything got back on track. Or so we thought, because at 9:52 PM…

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IOB = Insulin On Board, or amount of active insulin in her body.

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It pains me that I have to tell her to set the alarm to wake up in the middle of a night on a sleepover! What other kid has to do it? But it’s her life.
So at this point we have a plan and I am trying to get some sleep. When I open my eyes an hour later and check Dexcom, I do not like what I see, so I text V again:

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IMG_E5952.jpgI’m fighting to stay awake while doing complicated diabetes math. We need to override the pump and give more insulin because she is so high. But I don’t want to send her plummeting to a low either, especially because she is not at home!

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All that careful math, and still… She went from 400 to 225 with two arrows down in 45 minutes. And now she has a lot of active insulin in her body. Time for opposite action!

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So now it is about 1 AM. I have been sleeping poorly in 45 min increments, waking up to glance at Dexcom and make sure V is OK. I’m hoping that finally we can get things stabilized. I get to close my eyes for a couple of hrs. Then I wake up to Dexcom high alarm at 3:38 AM.

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Clearly something is not working with the pump. Absorption issue? Bubbles in the cannula? Who knows? It’s not completely useless, it’s obviously delivering some insulin, or else V’s BG would keep climbing even higher and higher. What we do know is that an injection of insulin can do wonders to bring BG into a better range. What we also do know, from the prior few hours, is that the same amount of insulin administered by the pump has been fairly useless. Understandably, V is not at all thrilled about my preferred course of action.

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V – if you are reading this, please realize that when this happens at home, I get up and give you a shot. And then I also change your pod. Usually you sleep through most of it. It sucks but it needs to be done.

I do not hesitate to put on my mean Mom hat. Also, by now we’ve been texting for nearly half an hour, it’s almost 4 fucking AM, and I have neither patience nor energy.

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I know V is really tired, mad at me, and in extra bad mood because her BG is so high. But for the record, what I really want to do is to launch into a tirade of how dare she does not appreciate how much I do for her. In all caps. But I know better because really, it is so, so hard on her. She may not believe me but I get it. So I suck it up and let her vent, try to keep my cool, and make sure everything is taken care of.

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At this point we both crash. When I wake up in the morning and check Dexcom, she’s OK. Not great, but somewhere around 200. Good enough.

By the way, the other bane of my existence is cropping and editing 20 screenshots. But if it helps you understand what we sometimes have to go through, it’s all worth it.

#makediabetesvisible 

 

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Awareness, More Awareness…

Oh hi there! Come here often? I was totally shocked when I realized my last post was at the end of August. Has it really been that long? I guess I put a few things here and there on my FB page, but haven’t blogged in a while. November is Diabetes Awareness Month and in past years I’ve been blogging up a storm. This November I’ve stayed pretty quiet. I don’t have time or energy to post every day (or every month – HA!). I was not going to post anything today either but blogging material landed on my lap.

V’s diabeetus may have been feeling neglected, because just as World Diabetes Day got started on November 14th, diabeetus decided that we needed more awareness of it. To that end, Dexcom low alarm went off. And boom – one minute we are sleeping peacefully  and completely unaware, the other minute we are totally aware!

What a better way to mark Wold Diabetes Day than to battle lows in the middle of the night. (That was sarcasm.) Why was V’s BG so low? Diabeetus, that’s why.  According to all rules and logic it should not have happened. She went to bed at a solid 80 with no active insulin in her body and trend arrow holding nice and steady. She has walking pneumonia, which technically could have/should have raised her BG overnight, not lowered it. And in the past few days she’d been steadily going up overnight, even if she started with a good number before bed. We have not made any recent changes to her pump settings. We have not administered any insulin at bedtime. And yet, we had to pump her with four glucose tabs and suspend insulin delivery for an hour, and it took us about 3 hours to stabilize her BG and get it into a safe range.

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Over the course of 3 hrs alarms kept blaring. We kept getting up. V kept waking up. We poked her fingers multiple times. We could have given her more sugar right away but we did not want to over-treat and end up with an epic high, so we kept monitoring and doing it one step at a time. It was stressful and exhausting. Welcome to another night in our humble T1D adobe.

So why am I writing about this now, you may ask? Because I want to bring to light something that we don’t often talk about. What happened last night is great example of “shit happens, T1D edition.” People with diabetes have to face a lot of judgment. One reason for it is an assumption others often make that the person is doing something wrong: they are not eating well; not exercising enough or exercising too much; they are not following their doctor’s orders; they are not taking the correct amount of insulin. That surely there is a way to get BG under better control, to prevent most highs and lows, but the person is not making enough effort.*

Sure, there is always room for improvement and better glucose control. But what I want you to understand, really want you to understand, is that there are times when T1D makes absolutely no sense, follows no rules, and is completely unpredictable. Like last night, when it decided to act like a jerk, just because.

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The one thing I really want you to take away from this post on World Diabetes Day is that diabetes management has so many moving and unpredictable parts. Please don’t assume, never ever assume, that the person with diabetes or their caregiver are doing something wrong or not doing enough. And be prepared that if you ask me “why”, the only answer you may get is “diabeetus, that’s why.” Usually delivered with a shrug.

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*Disclaimer: People with Type 2 diabetes have it one hundred times worse when it comes to these types of judgments and assumptions. Sadly, sometimes it’s my fellow T1 peeps and parents who, in their defensive reactions of “I/my child did nothing to get T1D!”, throw fellow T2 brothers and sisters under the judgment bus. But that’s something to address in a separate post.