Why We're Not In The Cloud

Making mistakes and learning from them is, in my opinion, part of being 12.

When my daughter says, "I don't need to study for the quiz. We reviewed in class and I've got it," I say o.k. When she puts off a chore until the last minute, I don't nudge.  When she's upset by the results of these decisions, we talk about what happened and she learns from her mistakes.

When she came home the other day with a blood sugar of 282, we had this conversation:

"Didn't Dexi alarm?"

"Yeah, but I was only 200 and I was in art and my hands were all gross."

"O.k., but now it's over an hour later.  What could you have done differently?"

"Checked after I cleaned up."

"Yeah...you'd probably be lower by now if you'd corrected, right?"

"Yeah. I'll check sooner next time."

In this scenario, she made some decisions.  They weren't great ones.  But we talked about it, calmly, and I'll hope that the next decisions she makes in these circumstances are better.  Had I been watching that CGM graph on my mobile device in the hour before she got home*, I'm not sure I would have handled the conversation as calmly. I may not have seen the opportunity to let her take a lead in problem-solving for next time.  I would have spent that hour getting increasingly irritated that her blood sugar wasn't coming down, and probably would have texted her to test and correct as soon as she turned her phone back on after school.

In the scenario we've chosen, the numbers are hers to deal with in the moment they occur.  Then, help is available if she needs it.

She knows she can text or call me whenever she needs my help. The nurse is there all day at school, and my daughter doesn't hesitate to stop in her office.  The Dexcom receiver reaches our bedside tables so she can have the night off from responsibility.  But when she's at school or out with friends, it feels like it's time to let her flutter around outside the nest a bit. We watch carefully from a short distance ready to come to her rescue whenever needed. Once she's home we talk about any glitches that occurred and about what she could do differently next time. For her, this seems like a great way to learn all she'll need to know when those safety nets aren't around anymore.

If I had a kid who regularly ignored highs and lows I'd think differently.  If her Dexcom receiver didn't give us readings when she was in bed, I'd think differently.  If she was littler, I might even think differently. If at any time I feel she creeps over the line of 'learn by doing' to a place where her safety is compromised, I'll not hesitate to reconsider all of the technology available to us. Everybody's experience with diabetes is different and we all need to do what works for us at any given time.

For now, though, this is what works for us.

*If you're unfamiliar, an explanation of 2 CGM in the cloud technology options are here and here.  Essentially it enables the data from a continuous glucose monitor to be sent to a designated smartphone so that there is another set of eyes on the information.

Old School

The Dexcom sensor died on Thursday after a long and helpful life.  We took a day and a half off and put a new one in on Saturday.  This one showed a variety of timer and blood drop symbols much more often than it showed any actual numbers.  The actual numbers it did show were often up to a hundred points off.  After 24 hours of trying to settle itself in, the ominous 'sensor failed' message appeared on the screen at 6 p.m. Sunday.  We decided to wait another day or two to insert a new one.

So essentially, we've been without Dexi since Thursday morning.  Aside from a post burger and fries restaurant high on Saturday night, the numbers have looked pretty good.  Granted, for all I know, she's been spiking to 400 and then dropping down just in time for a finger stick.  But that seems unlikely.

What I do notice is this: we're doing things more thoughtfully and intuitively.  This has its pluses and minuses. Today I'm intrigued by the pluses since they seem so much more unlikely.

While those Dexcom arrows are often helpful, I just as often find them to be misleading.  If I wake up at 2 a.m. to a 189 with a diagonal down arrow, I'll roll over and go back to sleep.  If the alarm goes off on a Dexi-free night, I stumble to the bedside, sort through the blanket and stuffed bunny pile to find a hand, check her blood sugar and see 189 staring back at me, I'll correct it.  Correcting it is much more likely to be the right thing to do.

Without that graph and those arrows to guide me, I find myself considering more of all of the other information available to me before I make decisions.  I think more about insulin on board, what particular foods were consumed, what she's been up to for the past couple of hours, what the next couple of hours will hold, and what things looked like yesterday and the day before around this time.

She checks her blood sugar more without the Dexcom.  During a regular school day, this only means one or two more tests.  But on weekends we've come to rely on a quick glance at Dexi now and then, often only checking at mealtimes.  Waiting for alarms to sound prevents us from catching problems sooner than later.

I love the safety net aspects of the Dexcom. I've come to rely on its information as a major part of diabetes decision-making.  But it's intended to work in conjunction with all the other tools we already had in our toolbox.  This week has been a good reminder to continue to use all those skills we worked so hard to hone in the 11 years before Dexi appeared on the scene.  They're actually quite handy.

The Departure

The e-mail from the principal was an unpleasant surprise.  It informed us that "Mrs. Nurse You Have Now" will soon move on to a new opportunity and that "Mrs. Nurse You Don't Know" will be taking her place.

We've done this before.  In third grade, the "Best School Nurse Ever" retired. We spent 4th grade with a professional and well-meaning person who could never have filled her shoes no matter how hard she tried. At the end of that year, we met the middle school nurse and decided we really liked her, only to receive a letter in July saying that she'd been replaced.

It turned out that this new nurse, currently referred to as "Mrs. Nurse You Have Now" has been wonderful. We have specific expectations of a school nurse, and she's met them all:

First and foremost, of course, is to know what to do in a real emergency.  Know how to use glucagon. Be willing to shove a glob of glucose gel into my child's cheek if needed.  Know when she's low enough that she needs to sit in the office for a little while longer.

Train the staff.  Provide enough information to my child's teachers so that they know what to do when she is experiencing a high or low blood sugar. Make sure the lunchroom staff isn't going to interrogate her about taking her last 2 pretzels out to recess.

Trust us.  We will provide the physician's school forms every year.  Once they're in the folder, please listen to my child, and to me.  If we're having a week of low blood sugars, please let her shave a few tenths of a unit off of her lunch bolus.  If something bizarre happens with the pump, call me.  If she's 105 but still claims she feels low before gym, let her eat something.

Last, but of utmost importance, be cool.  My child has to spend an extraordinary amount of time in the nurse's office.  She's there every day at lunch.  She has to hang out there whenever she's low.  She needs good company.  She needs someone who will a tell her a funny story, who will ask what she did over the weekend, who might even offer a hug if she's having a tough day.

So we'll spend the next week on 2 projects.  We'll try to accelerate our progress on eliminating this fall's round of low blood sugars, so that my daughter doesn't get roped into providing a full-scale orientation to this new employee while spending hours on end in her office.  And we'll think up a lovely parting gift for "Mrs. Nurse You Have Now," to thank her for 2+ years of helping diabetes interfere as little as possible in my daughter's day but for being there-and being cool-when it did.

A Minor Miracle

AFTER Calibration!!!

Maybe once a month we get a perfect match between the glucometer reading and the dexcom.  It's always very exciting and everyone in the house is summoned to see it with their own eyes.

On occasion these matchy moments occur at the same time the dexcom needs to be calibrated.  In the past, every single time we've entered a meter number that matches the dexcom's number we've been left shaking our heads.  Without fail, Dexi will decide my daughter's blood sugar is not exactly the matchy number at all, but one just one or seventeen points in one direction or the other.  

For this and other reasons, Dexi's strong-mindedness has become a running joke in our family.  

This morning, I was summoned to view the breakfast numbers- which were a little higher than I'd like but did indeed match.  I then stayed to watch as the dexcom calibration took place, waiting to see what whimsical number Dexi would decide was the real one.  

"Mom...look...she actually agreed!"

"Wow...maybe she's mellowing out."

Probably she's just thinking up some other way to torture us later on.

A Near Miss With Auto-Correct

*She'd been low ALL DAY, hence the advice not to bolus when she was 80.  As per usual: not medical advice.  It worked, though.

Not a Full Moon

As we pulled out of the parking lot and headed towards home, I turned to my daughter and asked, "Is it a full moon?"

"I don't think it's even close, but wow."

This week's endo day was full of chaos.

The traffic on the way in was full of terrible drivers making bizarre decisions.

As we turned into the parking lot, I let out a sigh of relief.  "Finally someone will take this car away from me for a little while." That was before the valet attendant nearly ran over my daughter as she tried to enter the building.

The bustle was evident as soon as we entered the clinic doors. Phones were ringing.  There were several patients waiting at the front desk.  Staff were scurrying around.  We took the last available waiting room seats and waited to be called for the traditional first step of height, weight, A1C and meter downloading. We were half an hour early for our 4:00 appointment, so expected to sit a little while.  A big dent had been made in homework when at 4:10, our endocrinologist himself came around the corner.  "Do they know you're here?" he asked.

"Yeah...I mean we checked in..."

He disappeared into the height, weight, etc. room and seconds later my daughter's name was called.

He took us into his office before her pump had finished downloading and started with the preliminary conversation. Soon the pump and its information had been delivered.  "So we were talking about lows, but I'm seeing a lot of high numbers here in the evenings."

Indeed, the week we were viewing had some awful looking 270's and 300-somethings.  Which didn't sound familiar at all.  Knowing that sometimes they print out a week or two back, I glanced over at the date.  "This says it's from August."  (Vacation week to be exact.)

On we went like that, with the doctor needing to take my daughter's pump in hand to accurately see and discuss the current basals, total daily dose, correction factors, and insulin to carb ratios.  We used the downloaded Dexcom graph to discuss some potential treatment changes. We came away with a few suggestions for dealing with the recent school lows, and a minor tweak for afternoon.  But it was hard to see the direct impact of insulin doses on blood sugars without the pump download. We never received the A1C results.  They'll let us know.  Maybe, I guess.

This is a top-notch clinic, with which we've always been happy.  I'm sure there's a good explanation for whatever trouble the medical assistants were having. There was at least one unfamiliar face in the back room, either new or subbing.  I overheard at least one other conversation about difficulty downloading data.  I'm pretty sure the whole thing was a fluke.  It would just make more sense if I could blame a full moon.

Um...Yuck?

"The granola is 10, the blueberries are about 5.  That was the new brand of soy yogurt.  How many carbs were in the container?"

As I turned around from giving the smoothie one last whirl, I found my daughter elbow deep in the kitchen trash.  Holding the yogurt cup delicately with 2 fingers, she said, "27" before dropping it back in and turning to wash her hands.

It wasn't the first time this scene has played out here.  Generally, though, I'm the dedicated trash picker. What particularly struck me about yesterday's episode was my child's nonchalance about diving in herself.

Add it to the long list of peculiarly unpleasant things we do for diabetes' sake.

We pick the trash.