Taking the CGM Plunge

DexcomI admit it – I resisted.  Mostly because I could not bear to think of having to pierce Caleb’s skin for yet another reason.  Finger sticks and pump insertions seemed like quite enough. Adding a CGM – another poke, another pain, another apparatus strapped to him – seemed too much to ask.

But it remained in the back of my mind always.  Every time we waited for the blood drop to register – that little game of roulette we play ten to twelve times a day – what number would pop up? It’s part gamble.

Caleb and I talked about it.  He bravely agreed to try it.  I nonchalantly started the insurance process expecting it to be a long series of rejections and appeals. I was still reluctant and took every step with much more time than was necessary.

Then we went out to eat for grandma’s birthday.  Caleb chose his favorite – pasta.  I will not allow diabetes to make more choices for him than necessary.  So even though I hadn’t dosed him for regular pasta in a long, long time, I gave it a try.  I weighed his portion and bolused him reducing it by an amount I remembered working back when we weren’t eating new pastas.

We were off to a good start.  Blood sugars were behaving nicely.  But then shortly after he went to bed he yelled saying he felt low.  He was 22 and he got there within minutes. We’ve never seen 22 before.  More alarming was his reaction: “Mom, why does everything look so small?”  “Mom, I feel like I’m gonna die.”

He was back in range quickly.  But I don’t want him to ever experience that again.  I couldn’t help but think CGM would help.  So I stepped up the insurance process and within a week I got the call that he was approved.

Fast forward to the first insertion:

So how is it working?

As expected.

I made the mistake of expecting miracles when Caleb started pumping.  I didn’t make that mistake with CGM.

It is helpful.  It is informative.  I appreciate having to play roulette less.  I felt a sense of relief immediately being able to watch Caleb’s blood sugar change rather than get slapped in the face every two hours or so.

But, like pumping, it’s far from perfect.  Glucose readings must be verified before acting, so we have yet to reduce finger sticks.  In fact, we’ve done more than ever to verify all the ups and downs within those ten to twelve times a day we traditionally check.  It’s not always accurate.  Sometimes it’s WAY off.  But much of the time it is meaningful.  And it’s true what everyone says: the trends are the real value, not necessarily the numbers.  But, when it does work and work well, it’s actually pretty fabulous.

I really want the theory behind CGM to be the true reality of CGM.  I want it to tell me what his sugar levels are 24 hours a day.  It doesn’t.  It doesn’t “catch” his lows and highs. It alerts us to the possibility or even likelihood of lows and highs – but sometimes not even that accurately because there is a lag between its readings and his actual blood sugar. Compound that issue with its readings being off maybe ten to twenty points and it’s easy to miss lows.  So it can catch his highs and lows, but it doesn’t do that as a rule.

So far CGM has softened the extremes in Caleb’s blood sugar readings.  It is a step forward in Caleb’s care regimen. I am glad to have it.  It is, however, a much smaller step than I would have liked.

In all fairness though, we are still new to it, and I am optimistic that our learning curve will improve and the small step will become at least a little bit bigger.

Nevertheless, it is too much to ask.

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11 thoughts on “Taking the CGM Plunge

  1. WOW! 22 that’s low. We’ve had some pretty bad low also. But what got to me was what Caleb said…. it brought tears to my eyes. How scary!!!

    We always had issues with pasta also. Especially Mac & Cheese which is Tristan’s favorite. He would always always drop like a rock after. We now use the Salter scale and it’s really accurate. It has helped a lot! 🙂

    Please keep us updated on how CGM is doing and how Caleb is adjusting. I haven’t pushed for Tristan to have it yet because I know that it’s going to be another fight. At times, he still freaks out about site changes… and like you said, I’m not looking forward to putting another hole in his skin…. and from that I remember when I saw it (over 1 year ago) that needle is huge!!!!

  2. Glad to hear Caleb is going CGMS…although far from perfect, my cgms has been a Godsend over the last few years and has really improved my control. You are right in that its true value to me has been the trending ….I wish you guys the best on your new venture…Bob

  3. So I have been lurking on your twitter , ha ha, and I enjoyed reading this very much. How heartbreaking to hear those words from your child. I admire how you seem to handle your son’s care.
    My niece is type 1 and I try to educate my own kids as much as possible, so they learn to be compassionate, caring and just plain aware.
    One day, I would love to see you write about the effect this has had on your other children, how they handle it, etc. This is something I have searched for online and really haven’t found.
    Take care and God bless.

  4. Lorraine … thank you so much for sharing your new experience with the CGMS. I’ve been pretty happy with mine especially since I’ve started using it on a regular basis. But you’re right – it’s not perfect. I can’t imagine hearing him say he feels like he’s going to die. How heartbreaking 😦 But you are an awesome mother to be doing everything you can for him and when he’s my age, having diabetes for over 25 years, he’ll certainly be thankful.

  5. I am in such awe of Caleb – how brave he was to try the CGM and how he kept saying it wasn’t that bad. He’s an incredible boy!! Yes, the CGMs are far from perfect. I’ve had mine since January, and I think I test MORE now than I did before getting it. But I love it and wouldn’t trade it for anything. And I can’t wait to see how they improve in the (hopefully near) future!

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