Dexi Sings Queen

Saturday night went a little like Queen's song, 'Bohemian Rhapsody.'

My daughter's Dexcom, 'Dexi,' buzzed around 1 a.m.

Caught in a landslide
No escape from reality
Open your eyes
Look up {to the skies} and see

I squinted at Dexi's message:

"LOW"  How low?  I clicked to see the estimate.  "67."

I shuffled off to my daugher's room.

Flashlight, meter, test strip, lancet.  "207."  Huh?

Is this the real life?
Is this just fantasy?

Back I went to grab Dexi from my bedside table so I could set her straight.  I informed her of the meter reading, and she asked for another.  Once I'd put that in, the graph showed a reasonable '193.'

As I started do doze off again, the buzzing resumed.  "HIGH"  "275."  Unconvinced, I checked anyway.  I informed Dexi both through her computer buttons and verbally with a few choice words, that "170" was the number she should be aware of.  An apology would have been nice.  Something like

Mama, ooo
Didn't mean to make you cry.

No apology was forthcoming, but she did get herself straightened out by morning, having overcome her night of ambivalence.

A little high, little low
Anyway the wind blows, doesn't really matter to me...to me.

Relentless

We're going through a stretch of very active diabetes management here, and it's exhausting.

Don't get me wrong.  We're always managing diabetes; all day, every day.  It's just that sometimes it fades into the background a little bit.  This isn't one of those times.

At February's appointment we were surprised by a creep up in my daughter's A1C.  Nothing dramatic, mind you, but worth working on.

Suggestions to address this problem were discussed at our appointment, and we implemented them right away.  Then she started eating.  Everything.  She's growing noticeably taller by the week.  At every appointment lately, the endocrinologist has reminded us that her total daily dose of insulin is likely to double in the next couple of years.  At this rate it'll double by the time we see him again in May.

Her basal rates and insulin to carb ratios are going up and up. With these changes come increased finger sticks and dexcom alarms, the return of the log sheets, and an extraordinary amount of thinking.

I'm trying to meal plan and grocery shop more carefully too.  Countable carbs and balanced meals are important so that we know if the insulin changes we're making are right.  The fewer variables in that equation the better.  I'm also trying to fill her up, so that she's not looking for a snack an hour after dinner. If she does want a snack, I want to have healthy, filling choices on hand.

I'm hearing from the nurse's office at least once a day for a high or a low.  Then she's at play practice until five or six o'clock most days after school, so we're managing snacks and dance induced lows via text all afternoon. Meanwhile we're spending time figuring out how to include her diabetes equipment in her play costume. But who doesn't love a challenge?

The sedentary lifestyle of winter is giving way to the activity of spring.  Yesterday was the first outdoor recess since November. She's walking home again when she doesn't have play practice.  Schedule changes and field trips are creeping back into the school days.  So are juice boxes.

Factor in what feels like more than our fair share of diabetes flukes like the other night's 2 a.m. site change, and it feels like it's all diabetes, all the time here.

Which it is.

Why We Look Tired Today

My daughter called from school mid-afternoon yesterday to report a blood sugar in the 300's.  "Correct it and we'll see what happens by the time you get home," I suggested.

"Why do you think I'm so high?  Do you think it's the site?  I can't see it too well."

"Maybe. You've been high lately in the afternoons anyway you know.  Not this high, but let's see what happens. You'll be home in less than 2 hours."  By the time she got home, she was 82.

I didn't think of it again, at least in terms of it being an urgent problem.  I recorded it on the log sheet and vowed to take some time this week to look at the after-lunch time frame.  Her dinner number was good, and after dinner wasn't terrible either.  By 10 she was creeping up to 200-ish, which I corrected.

At 1 a.m., the Dexcom was buzzing.  HIGH.  She was 310 and apparently I'd slept through it's first attempt to alert me.  I got up, confirmed the number, and corrected.

By the time I got back in bed, the wheels were turning.  Was it the site?  Why hadn't I looked at it when she got home?  What else could be going on?  She had some Irish Soda Bread after dinner for which I approximated a carb count, but I can't imagine I was that far off.  We've been changing basal rates overnight and things were starting to even out.  What was with this number?

For some sleep-muddled reason I chose to wait out the correction and see what would happen.

Forty-five minutes later, she was higher with a diagonal arrow up.  I un-snuggled her from her covers and unceremoniously peeled back her pajamas to take a look.

"Ick" is the G rated version of the mumbling which ensued.

I gathered the super-sized flashlight and the site change supplies.  I woke her (which is her preference...I know of people who simply proceed with site changes while their kids sleep).

"You're super-high, sweetie.  I need to put in a new site.  I'm sorry I had to wake you up."

"(Unintelligible mumbles) I'd rather get up and do it.  You can just turn on the light," she said in a disgusted yet somewhat understanding voice.

I got the new site in and operational as quickly as I could and tucked her back in with a kiss.

Now, how to do the "math" to lower the blood sugar?  I'd corrected this number once, but nothing had happened.  The pump now suggested only a small amount of correction because so much insulin was on board.  Some of that insulin had probably been delivered, but certainly not all.  She'd likely missed some basal insulin too from the gunky infusion set.  I looked at the suggested dose and compared it to the total dose the pump told me it would take to drop her back to her target blood sugar. I picked a number in between and pressed 'o.k.'

An hour later, I was still awake but happy to see her blood sugar slowly trending down.  At 3:30, Dexi roused me from my dozing.  "FALLING," she said.  The actual blood sugar was still in the low 200's, but insulin was infusing and doing it's job.  I finally fell asleep.

The story has a happy ending.  Her blood sugar at breakfast was 120.  Now for another cup of coffee.

Measuring The Rice

A household favorite weeknight dinner this a one-pot teriaki dish.  The recipe is on the back of the Minute Brown Rice box if you're interested.

I love the ease of making and cleaning up this meal, which is ready in 20 minutes and, true to its name, uses only one pot.  The odd yellow color is a feature of amateur photography, not of the dish itself.

The trouble with this dinner is with the serving of it.  Since the carbs are primarily in the rice, but in the end all of the ingredients are mixed together, serving my daughter's portion takes some time.

First, I find a half cup measuring cup since that's about how much rice she eats.

Then I push stuff around in the pot, attempting to separate enough rice from the other ingredients.

Finally, a half a cup.

Now to add the rest of the ingredients and toss it all back together so it looks like everyone else's.

Every day there are many weighty reasons I wish for a cure for diabetes.  But I must say I won't miss these little annoyances one bit.

Hello Ketones

She was awake early with stomach cramps, nausea and a low grade fever. She felt miserable. On the bright side her blood sugar was quite reasonable.  I relegated her to the 'sick corner' of the sofa with the remote and a cup of peppermint tea.  

I proceeded to make the requisite phone calls, and coffee.  Then, ironically, I had to go to the school anyway to drop off dessert for lunch with a visiting author. On the way home I stopped at the convenience store to pick up a low-carb sports drink.  

Arriving home, I had my daughter check her blood sugar again.  Then it occurred to me (belatedly, I know) to check for ketones too.  I dug the blood ketone meter out of the diabetes box.  A quick drop of blood and the result read out.  '1.2.'

"That seems pretty high," I said vaguely. We check ketones during illnesses, but it's been years since she's had any.  I did some quick research. 'Moderate' was the official term I was looking for.  We needed to take action quickly or things would go from bad to worse.  Meanwhile, her blood sugar was down to 120. She needed insulin to help clear the ketones, and therefore she'd need to take in some carbohydrates to balance it out. 

I calculated a generous insulin dose and she managed to get down 15 carbs of ginger ale.  I then provided her with a cheerful travel cup full of the diet sports drink. She sipped as best she could to start washing those ketones out of her system. The combination of insulin and hydration began to work their magic. We were soon out of the woods.

What struck me about this incident was how unprepared I felt for it.  My instinct, when I didn't know what that ketone reading meant, was to time travel back 11 years and dig out the booklet our children's hospital gave us when she was diagnosed. The chart was right where I pictured it, accompanied by lots of helpful advice which helped me deal with the problem.  Yet questions remain.

Should I be relying on 11 year old information or are there newer protocols?  Would it be worthwhile to review sick day plans at our next endo appointment?  Should plans for various emergencies be reviewed every couple of years as a rule?

Hopefully it will be another few years before I need this information again, but I don't plan to wait that long to refresh my memory.

What If?

 This is a story about something that happened last weekend.  It is not advice, medical or otherwise.  Except maybe to be extra-careful when walking on frozen lakes.

'Does your daughter have any medical conditions?'

I mumbled a little.  "Nothing that's relevant here."

'Too young to have much of a medical history, huh?'

'Mmm,' I said with a tight smile.

The EMT continued to treat the facial injury.

We were at a family resort for a girl scout troop overnight.  Our last outdoor stop of the day was to explore the frozen lake.  I saw it happen in super slow-mo from about 30 feet away.  My daughter was walking towards her friends when her feet went out from under her and her face hit the ice. We're unable to reconstruct where her arms went, but they were of no help to her mouth.

She bit deeply into her left outer lower lip. The left side of her mouth was swollen and riddled with abrasions and braces marks inside and out. There was a lot of blood. We took her inside, got ice, washed up her face and rinsed out her mouth.  The bleeding wouldn't subside.  We were told there was an EMT on site.  I decided, particularly being far from home, that it would be smart to have it looked at carefully so I wouldn't wonder later if more should have been done.

My daughter later described our time with the EMT eloquently.  "He had trouble finishing his sentences.  And he kept repeating himself."  He was perfectly kind, and gentle, and competent.  But 20 minutes into his work, he was still cleaning the cut.  He had reassured us that she didn't need stitches and that her teeth seemed fine. He was finally getting out antibiotic ointment and bandages.  Then he asked the question.  "Does your daughter have any medical conditions?"

I looked over at the rest of my daughter's girl scout troop, so patiently and lovingly gathered with the other parents, waiting for her.  I thought about bumper cars, and dinner, and the evening fun to come.

I ran through the diabetes-related possibilities in my head.  I knew I should be honest. But could anything either he or I would gain from the potential conversation be worth the 20 minutes it would take to have it?  I mumbled my answer.

It felt really weird.  As I denied the diabetes, her life flashed before my eyes: the traumatic events of diagnosis, the countless endocrinology visits, the pump and CGM stashed under her winter layers.  What if none of that had happened?  What if this lip injury was one of the most significant medical events of her young life?

Eventually we were walking towards the bumper cars with an adorable stuffed lion her friends chose for her from the gift shop (conveniently located adjacent to where we met up with the EMT) when my coat pocket vibrated and beeped. A glance confirmed the inevitable:  240, double arrows up.  The adrenaline was at work.  Diabetes was, indeed, relevant to this situation just as it is to just about every other one.

But I refuse to let it slow us down.