Fail

Not the best day ever. After a few days of the bear peeing more frequently and urgently, and even a few accidents (which don’t usually happen), plus some overnights of unusually high blood sugar readings (fastings of high 200s or over 300) we took her to the pediatrician today worried about a UTI or something. Nope. Totally diabetes/ketones. I was thinking I should run the blood ketone meter on her the other day but then I just didn’t. Yes, we had a site change in the middle of all this.

Our pediatrician on-call was super nice and she called our pediatric endocrinologist just to be sure she was sending us away with good information. I ended up on the phone with him and definitely felt scolded. Not for no reason. No need to go to the pediatrician for ketones. Call us if you aren’t sure how to proceed. Sure. If I had tested for ketones, I would have known just what to do. So, she’s been waking up around 300? That’s why she has frequent urination. With a UTI or bladder infection, she would always have pain. Yes, I know. Has she had ketones when she was waking up at 300? I don’t know because I didn’t test for that. And, the unspoken – “Don’t you always test for ketones when she is over 240?” No. We don’t. She’s 5 years old and if I tested for ketones every single time she happened to be over 240 it would be ridiculous. So, what’s going on overnight? Have you tried to figure out why she is running so high? I’ve been testing her at 10 pm, 1 am, 4 am (mostly best-husband-ever’s shift), and at fasting. Out of the past 7 days that’s 4 high fasting numbers, and 4 high numbers at the 1 a.m. check (though not necessarily on the same nights), as well as 1 low numbers all night. From day to day things are pretty hectic and noticing patterns is hard. I knew we were probably going to need to change overnight basals, so was trying out 103% temp basal until midnight, then 104% from bedtime til waking – but hadn’t had a consistent result yet. Well, obviously something more permanent needs to happen. Call back this afternoon and talk to the Educator on call to figure something out.

So, home to change the site again — try to choose a spot that shows no signs at all of being used, A shot with 5%-ish of her TDD (not really knowing how much of the correction and breakfast boluses had actually gotten through), and start up the old windows laptop to try to get a successful download (when will these companies have software that is compatible with Mac???).

Then to Target for a few things – after which the BG is reading 123 and blood ketone meter 0.0. Rest of the day = lots of testing, some snacking because that’s how she eats, most bgs in the 200s and ketones at 12:40 pm still 0.0. Changed the 12 am, 3 am basals by .025 each and Dinner I:C by 1 and bedtime snack I:C by 1. Renewed resolve to test for ketones more often — even if bg goes back into normal ranges between highs (all these days with the morning/overnight highs were days with perfectly good bgs otherwise – so she was clearly getting insulin).

It’s always worse to get told you did something wrong when you totally already knew that you did. It’s one thing to decide not to check ketones on myself when I have pretty good body awareness as to how my body is feeling and can decide at any point to take different actions. It’s clearly different when trying to be a stand-in pancreas for our daughter.  Didn’t call the educator this afternoon — couldn’t really see that they would tell me anything different than I was already doing…

In better news, we went back to a spot we only discovered this winter for a great walk through the woods and along the harbor. Saw a butterfly land close by, collected some shells, and got serenaded by a grassy field filled with grasshoppers & crickets. The bear is doing great (not that she wasn’t with all the high numbers either… never showed a symptom other than the frequent urination) and despite the shot trauma earlier, is back to her energetic, happy self.

 

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3 Responses to Fail

  1. Katy says:

    “It’s always worse to get told you did something wrong when you totally already knew that you did.” I agree!

    240 is the ketones cut off? We were told 250 (not that it’s a huge diff.), but I saw that the esteemed Dr. Ponder (pediatric endocrinologist with amazing, informative facebook posts/lessons) calls for ketones @300. I’m going with 300. Actually, that’s a lie. If I know we’re over 300 for a food (navratan korma is a demon) reason, I don’t test.

    I am so happy to find your blog. I love that you have T1 and a T1 kid: I’ve always wondered about that situation. I won’t comment on every single thing but I’m going to read everything I’ve missed.

    • Thanks for your kind words 🙂 I definitely appreciate all the DOC who have encouraged more people to start writing about their stories. And Chris’s idea for the check-in day was genius!!

    • Oh – and thanks for your comment on the About page — I had no idea what to do with that page originally 🙂 Your response reminded me to go on and make it work better.

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