Tuesday, November 11, 2014

One Of Us Is Happy To Be Home

To celebrate my daughter's 13th (ack!) birthday, we spent a long weekend in Washington D.C.

We stayed in a lovely downtown hotel.  We walked everywhere and once we got to our destinations, walked some more.  We toured the Capitol and visited countless monuments and statues including a trip to the top of the Washington Monument. We enjoyed a few Smithsonian museums and got pictures of the White House from every allowable angle.  Our only Metro train trip was to the National Zoo where Bau Bau, the baby panda was adorable.   We ate in a couple of incredible restaurants, and on the actual birthday we ordered room service breakfast as a very special treat. We had an amazing time.


She was low at the Library of Congress, the Jefferson Memorial, the National Archives, the panda exhibit, and on many street corners.  She was high, and drinking contraband water, in the Capitol building and at the top of the Washington Monument.  And here's a hint: don't eat a room service continental breakfast complete with a yummy cinnamon roll and then get in the car for several hours.  Your birthday morning will be spent in a haze of dexcom alarms, people handing you bottles of water, and highway rest stops.

I can't remember a vacation Diabetes hated more than this one.  The Dexcom graph looked like a never-ending roller coaster.  High right after breakfast.  Low by 10.  Creeping up by lunch, then high-ish by 2. Crashing by 4.  High after an incalculable restaurant dinner (with dessert!!!) but coming down alarmingly quickly during the walk back to the hotel.  Or the complete opposite, depending on the day.

Most frustrating was that we were actively trying to prevent these swings.  She checked often.  Dexi was a constant companion.  There were temp basals and calorie king app checks and taste tests of foods to judge their contents.  Yet we were left wondering if the end result would have been just the same if we'd put in much less work.

We kept going, with our usual 'diabetes isn't going to stop us' attitude and enjoyed the capitol to its fullest. My daughter was a trooper and despite feeling the effects of those highs and lows, kept enjoying everything she was seeing. The only thing I wish we hadn't seen so much of were the city's benches and stone walls.

Wednesday, November 5, 2014


"Do my doopities?"

I still remember the first time my daughter asked this question.  She was very low.  She had some juice.  I breathed a sigh of relief.

Within a couple of months of being diagnosed with diabetes at the age of 13 months, my daughter had made up this word.  "Doopities" meant checking her blood sugar.  Nonsensical?  Absolutely.  But when it was time for food or bed, we'd say, "let's go check your blood sugar," and she'd say "doopities."

"Do my doopities?"  The first time she asked this out of the blue, she was maybe 24 months old.  She felt low.  She knew what she needed to do.  It was a bittersweet moment for sure.  Mostly, though, I was relieved.

From the day we brought her home after being diagnosed, we spent every waking moment watching her like a hawk.  Was she slowing down?  Were her eyes glazy?  Was she pale?  Why was she crying?  Was she lying in the grass because it was fun or because she didn't feel well?  Was it o.k. to let her play in the sandbox by herself 40 yards from where I was weeding the vegetable garden?

After this first request for 'doopities,' we were not, of course, home free.  She was 2. We watched her like a hawk for several more years.  We still usually picked up on lows before she did.  We still needed to be responsible for keeping her safe.  Yet at that moment, we turned a little bend which brought us all the way to where we are today.

Now that's she's 12, it's increasingly rare that I'm the one suggesting she check her blood sugar.  Once in a blue moon there will be excessive crying.  Those eyes still noticeably glaze over sometimes.  More often than not, though, she catches lows on her own.

But these days she just says, "I need to check my blood sugar."

Thursday, October 30, 2014

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.

Tuesday, October 28, 2014

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.

Wednesday, October 22, 2014

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.