A Long Night

It's 10 p.m. The teenager has been home for an hour from band practice. She has showered and is thinking about going to bed. She checks her blood sugar in order to calibrate the Dexcom.

"WHAT?!?!"

The parents watch warily from the couch while the teenager gets another test strip and rechecks her bg.

"WHAT IS GOING ON??? HOW IS THAT POSSIBLE??? HOW DID THAT HAPPEN???"

The teenager is distraught.

"Mom...can you help me do a site change so it goes faster? APPARENTLY I'M 485."

The mother rises wearily from the sofa, her plans for quiet time with her book followed by a good night's sleep dashed. She fetches a large glass of water for the daughter, in hopes of keeping ketones at bay.

"Yup. Drink this first. What happened do you think?"

"I DON'T KNOW!!!"

The teenager is grumpy, irrational and teary. Probably because of the blood sugar of 485. She gathers herself for a moment.

"I don't know... I was fine at dinner - 130 something. I don't remember Dexi alarming at band but it must have. It alarmed again a little while ago. But not that high. It's been iffy all day- it's like 10 days old - but I didn't know it was that far off and now I'm really high and I don't know WHY!"

The mother and teenager go off to the teenager's room to change the site. The chain of events leading up to the current situation is reviewed.

"I bolused dinner - I'm sure..." opens the pump's memory and double-checks "yup- and it wasn't a lot of carbs and you used the measuring cup. And then I just went UP! And I didn't eat anything at band- I just drank my water and I never had anything when I got home and now I'm SO HIGH FOR NO REASON."

When the site is removed the cannula is gunky, clearly clogged up. The mother thinks out loud.

"I don't think, in 13 years of pumping, you've had a pump site conk out that quickly. Usually they take a gradual turn for the worse, but this one seems to have suddenly and completely stopped working. That's the only logical explanation to go from 130 to almost 500 in 4 hours."

The teenager curls up on her bed, nursing her second pint of water. She is clearly miserable. She complains of a headache.

"... not just in one spot but like...my whole head...it just hurts...it's awful."

The mother initiates calming conversation … a friend's new puppy, a funny story someone posted on Facebook. Eventually, it's been 30 minutes since a correction dose of insulin was given. The teenager rechecks and is now just barely over 400. She gets up to brush her teeth and finish preparing for bed. The Dexcom alarms... FALLING! … and hope increases that the correction dose will work.

The teenager goes to bed. The mother gets to read her book, but for much longer than she'd intended, staying up until 12:30 a.m., when the blood sugar has dropped to 230-something.

The mother is awakened at 2 a.m. by the Dexcom alarm (which is now, incidentally, spot-on again) and gives the teenager some juice for a bg of 76.

The father gets up at 3:45 to give more juice for a bg of 68.

The family gets up in the morning. The teenager has a bg of 77. They are all tired. They are all grateful for the discovery of insulin. But moreso now for the discovery of caffeine. .

Endo Day

As I started to write about yesterday's endocrinologist visit the words felt familiar. I looked back and found a post (which you can read below) from 2013. The only difference between the old story and yesterday's visit was the added visual aid of a Dexcom graph which showed that the average range of blood sugars was about 40 points higher than we'd like it to be. "This whole graph just needs to move down an inch or two," was our doctor's assessment of the issue. The rest of the conversation was about the same as this one four years ago:

We visited the endocrinologist this week. 

In the weeks leading up to a visit, I am usually motivated to keep a more detailed log and to scan through the meter's averages and graphs.  I try to identify any major issues we need to discuss.   Sometimes I am able to fix a few things or at least narrow down the issues to a few really tricky ones.  I do this so that we can spend our endocrinologist time on issues I really need help with.

This time I tried to think about it.  I really tried to weed through all of those numbers and find the places we needed to change things.  I didn't know where to begin.  I gave up.  It turns out my confusion was warranted. The doctor's initial impression?

"She needs more insulin...like most of the day."

Her A1C was up, only by .3, but after going down a couple of times in a row it wasn't great news.  It wasn't surprising either.

Many things had changed since our last visit.  She'd added height.  She'd added weight. Yet she was missing a sufficient quantity of a key ingredient.

So we added insulin to almost every basal rate.  We added insulin to almost every carb ratio.  We added insulin to the correction factor.

We've been doing diabetes for ten and a half years.  I'm able to tweak a basal rate here and there, or recognize when the correction factor is no longer correcting.   I'm a person who, given sufficient knowledge, tries to solve problems on my own before asking for help.

Yet once in a while, particularly with a growing child with diabetes, the time comes for a major overhaul. In many ways, it was freeing to hand that whole pile of 'undesirable' numbers over to the endo and say, 'please fix this.'   Now we'll watch and see if he did, and hope he at least got close enough that I can trouble-shoot the rest from there.

I don't imagine all of yesterday's adjustments will work perfectly. We'll be following up with more tweaking in the weeks to come. But I'm grateful for yesterday's major overhaul so that we can get back on track, an inch or two lower on that Dexcom graph.

Dear Diabetes

Dear Diabetes,

Please stop.

You have had your fun.  Now please leave us alone. 

The blood sugar of 400 after dinner was sarcastic, no?  Yes, we forgot to bolus for the little baked potato until after it had been eaten, but a bg that high for maybe 15 missed carbs?  Get a grip.

Then you showed up at gym the next morning.  You and gym had finally started to get along I thought.  But you threw in a random 40 to start the day. Why? 

Oh- yes.  I remember.  So that my kid could have a moment to ask the nurse about the next day's standardized testing plans.  Where would she be taking it?  What were the accommodations for you, diabetes? This question ended in a lunchtime meeting with the guidance counselor, a series of emails and still no firm answer.  We'll have to go with the flow for this one it seems, partly my fault for not taking note this test was coming and asking earlier. But we would've gone with the flow anyway, without having the opportunity to ask the question and waste an hour of the day with stressful communication about the answer.

As if the testing question fiasco weren't enough, the low also resulted in missing most of Spanish class, where the assignment to do a project on a famous Hispanic person was handed out.  By the time she got back to the classroom Big Papi and Freda Kahlo, her first choices, had been taken.  She chose Pedro Martinez, but while the choices on the original list included links to articles in Spanish to work from, that wasn't the case for off-the-list options.  So while the class had the opportunity to complete most of the initial portion of the project in class, my daughter spent an hour at home finding an article in Spanish about Pedro and answering questions.  On a night she was supposed to have no homework due to the aforementioned tests.

Diabetes, we've had enough.  We see you.  We hear you.  We feel you.  We get it.  You've got power to derail any day you want to.  And you did.  You won the day.  Please go somewhere else to celebrate.

Respectfully,

Us

Information

 

 One bit of wisdom shared often by both professionals and veterans of the diabetes community is about how we react to blood sugar numbers.  The numbers are, the wise people tell us, neither good or bad.  They are simply information.

 

A blood sugar check should be a 'no judgement zone,' the theory goes.  The sole purpose of the number is to tell us what needs to happen next:  a juice box, a correction bolus, a regular meal bolus, and nothing at all are all possibilities.

 

It's pointless, we're told, either to express elation at a perfect 100 or to throw the meter across the room over a 357.  Tying feelings to the numbers has the potential to lead to unnecessary frustration.  It can lead to checking less often for fear of getting a "bad" result.  It can lead to spiraling emotions when things inevitably derail; emotions which could get in the way of being clear headed enough to make necessary adjustments. 

 

So it is with this philosophy in mind that I look at the now-constant stream of blood sugar numbers available on my phone thanks to our new 'share' technology.  Take this day for example:

 

The information tells me that my daughter's blood sugar was more often higher than her target number and lower than her target number than it was anywhere near her target number.  I'm informed that if we averaged all of the numbers together, we would come up with a number close to the target  number.  The graph informs me that steps were taken throughout the 24 hour period to return blood sugar levels closer to the median but that those attempts had more than the desired effect almost every time.

 

But it's incredibly difficult not to look at this graph and utter a few choice words, non-informational in nature.  It's hard not to see how crappy a day this was, and to wonder what we're doing wrong to make this happen; how things have spiraled out of control like this. 

 

While I don't discount the wise people's theory, I think there's a balance. I do not want to get so frustrated that I stop looking at the numbers.  I do not want to say things about the numbers which imply a sense of guilt.  But sometimes, at least for me, it takes a little anger and frustration to get me moving or, in the case of this fall, keep me working until we figure this whole high school schedule out.  Because, really, I'd prefer the information steaming onto my phone screen always looked a little more like this:

 

 

You Don't Know What You've Got 'Til It's Gone

At first it was kind of a novelty to live like we did in the olden days.

The element of surprise added interest to every finger stick.

The highs and lows made us think a little harder about the why's and the what next-s.

The nightly 2 a.m. finger sticks let us relive the old familiar moments of rescuing the stuffed rabbit from the floor and wrestling a hand out from beneath layers of covers.

The once-again regular calls from the nurse's office made my day less lonely.

But the lack of a working Dexcom is beginning to take its toll.

We miss the ability to see highs and lows coming on before they're 50's and 300's.

We miss relying on the graph to show us a steady upswing after a low instead of drawing blood every 15 minutes until we're absolutely sure the number is stable.

We'd like to sleep. 

We're all caught up on everything that's going on in the nurse's office and its environs.

So I was glad this morning to find in my inbox the shipping notification for our Dexcom's new transmitter.  A combination of my slowness to order it as soon as the low battery notification appeared and the slowness of getting insurance approval for and shipping a new one has left us Dexcom-free for a week. 

Which isn't the end of the world, and I'm grateful we have the technology at all, but now that we're used to having the data and the safety net, it's really hard to do without.  Even my daughter, who is still understandably ambivalent about the insertion of and constant wearing of another device, asked yesterday about the status.  "I can't wait to have it back- I'm so tired of not knowing what's going on."  Me too.

Whack-A-Mole

Streaks of high blood sugar are becoming frequent visitors.  I'm upping the insulin:carb ratio, the correction factor and the basal rates regularly.  My methods are sometimes scientific, with thoughtful basal testing and downloading of information. Some other changes have been made more impulsively, in exhausted frustration.  Either way, numbers seem to settle in for a few days to manageable if not perfect.  Then it's over.  She's stuck at 250 again.

So we start again.  Because of her health, of course.  And also because a 13 year old with consistently high blood sugar is not someone you want to live with. Trust me.

There was a time when we adjusted very few things between endo appointments.  One basal rate might change, or I'd need to up the breakfast carb ratio.  A little growing, or a change from school to summer schedule would require a bit of work, but not much.  Sometimes we'd do nothing at all and she'd be just fine. For 3 months.

I was warned this was coming.  I knew I'd have to start making regular changes in her insulin regimen.  I imagined it would be hard work.  What I didn't fully understand was the emotional component of the whole thing.  It's akin to playing a never-ending game of whack-a-mole.  There's that brief moment when all the little moles are in their holes and you take a deep breath hoping you've whacked them all.  Instead they start popping up faster than before.

I'm certain my little smile at the flat dexcom line from 1 a.m. until 7 this morning will be justly rewarded with an astronomical  spike before the day is out.  Or tomorrow's 1-7 line will be straight at 200 instead of 108. If we ever hit a day completely in range, I'm sure it will include a request from my child to go out to lunch with her friends to restaurant with uncountable carbs, or be followed by another lethargic snow day.

This challenge, like whack-a-mole, will take some skills to get through.  We'll keep looking at the big picture.  We'll keep moving.  We'll stay calm. We'll show the enemy who's boss.  And we'll know that this era, like any game of whack-a-mole, must eventually come to an end.  It can't last more than 4 more years, right?