Prom

Among the things I was (somewhat irrationally) worried about years ago was prom. It seemed impossible that the little person so completely dependent on me for all of her insulin-related needs could independently navigate a night of hot hors d'oeuvres, a buffet dinner and hours of dancing. And how would the prom dress fashion challenge work out with an insulin pump to incorporate into the equation?

Fast forward to May, and she had an amazing night.

The dress was gorgeous and nobody would have guessed there was so much hardware underneath it.

She counted the carbs for appetizers, a Shirley temple, dinner and chocolate lava cake.

She carried a roll of glucose tabs in her clutch purse, and simply went to the bar for a cranberry juice when the dancing led to a low. She was with friends who would help if she needed it.

Our awesome school nurse was a chaperone and was armed with a spare infusion set, a jar of glucose tabs and glucagon. Their only conversation of the night was about my daughter's dress.

Despite all the push to trade in the Animas Ping for a new pump this spring, we hung onto it long enough to use the remote bolus feature so that there were no awkward moments of reaching under the dress or disappearing to the ladies room every time food appeared.

Prom, and so many other things done with diabetes, required prior planning and thoughtful clothes-shopping. It was made less stressful because there were people around who were prepared to be supportive. And then? It was just as fun as it would've been with out diabetes.

Bolus Less

There are a few foods consumed around here for which the official carb count just doesn't work. Maybe the packaging is wrong? Maybe my daughter's metabolism is just way different for a few specific foods? We've decided it's more important to get the bolus right than to figure out why it happens.

Foods in our regular rotation for which we've learned to adjust from standard carb counts include blueberries, for which she needs barely a hint of insulin, and a specific brand of frozen tortellini, which is probably poorly labeled. 

Then there are other foods which we have to periodically relearn, like the Italian ice at our favorite ice cream store, which is significantly lower-carb than the Calorie King app's 'average Italian ice' measurement. This was the first spring we remembered a reasonable estimate and guessed well enough that we didn't have a long, low night.

Ever in search of non-dairy options, I recently picked up a boxed macaroni and cheese for my daughter to try.

The package said that the mac and cheese had 50-something carbs per prepared cup. Which seemed high to me, but I thought that whatever made up the 'cheddar flavor' part was, perhaps, super-carby. 

It was not. Or my daughter's system did not perceive it as such. Over the course of the following two hours, she consumed 30 carbs to bring up the ensuing low blood sugar. 

She liked it so it's a keeper. But it's not something that's going to be in the regular rotation. She'll have it after holidays, when there's leftover ham in the house (because mac and cheese with ham is a family favorite), or once in a blue moon as a quick fix meal out of the pantry for an unexpectedly hectic night.

The lingering question was, how are we going to remember to give less insulin for this next time, which could be months from now? By posting the product label on the inside of the pantry with "Bolus Less!" scrawled across it in sharpie. 

The Appointment

Endocrinologist appointments are important touchstones in life with diabetes. It's a quarterly or tri-annual check-in at which months of diabetes are assessed as a whole.

We went into the city for my daughter's appointment yesterday.

There were no extraordinary clinical components to the visit except that she's now officially taller than me. Otherwise it was a run-of-the-mill appointment with conversations about adjusting basal rates and when to get lab work done again.

What distinguished this appointment for me was subtle but significant.

A few minutes into the conversation I noticed two things.

I had said nothing since greeting the doctor when we walked into his office.

I was sitting back in my chair while my daughter was on the front edge of the chair, leaning towards the doctor's desk, and talking with him about her diabetes.

She's been going to the endocrinologist since she before she could walk.  Over the following 16 years, she's answered a few more questions and engaged in a little more conversation each visit, but I've always taken the lead. Until yesterday, when I'm pretty sure she did.

I had not asked her to be more involved, and I'm not even sure she was intentional about being such a big part of the conversation. I tend to think it was more of a natural progression. She's come a long way since I had to carry a diaper bag full of toys to entertain her through every appointment!

Friday

It was 6:45 p.m.

My daughter had gone straight from play practice to meet friends who were watching the end of a wrestling match in the high school gym. The plan was to go out for dinner afterwards.

I received a text:

'Dexi is dead and the meter won't turn on.'

We knew the Dexcom sensor was set to expire before the evening was out. But plan B was that she had her meter and would be fine using that instead.

But now she was not.

I grabbed two AAA batteries and let her know I would meet her at the front doors of the school.

'But what if it isn't the batteries?,' my daughter wisely replied.

So I also grabbed her spare pink one-touch mini meter.  Since two dead meters don't equal a useful one, I popped in a test strip to check it, and, inevitably, its battery was dead. It takes one obscure flat battery. By the time I found a spare one of those, the contents of our 'diabetes box' were strewn across my daughter's floor and she was texting, 'Are you here yet?'

I pulled up to the doors, and she came out. She sat in the car with me and replaced the batteries in the regular meter. "Low meter batteries," it read.

"But I just put them in there- you brought new batteries, right?" I had, straight out of a container full of new batteries in the basement, I reassured her. Fortunately, the pink mini meter was working just fine so she was equipped for dinner.

She enjoyed her evening out and got home early enough to put in a new Dexcom sensor before bed.

The next morning I replaced the batteries in the usual meter one more time, and it worked.

Weird stuff can happen on any given Friday.

Thursday

My daughter and I had dinner around 5:45. It was a regular meal. In fact it was leftovers, so it was the exact same thing she'd eaten earlier in the week. She bolused for the carbs with no correction since her blood sugar was in range.

She left at 6:25 for jazz band. I left at 7:10 for choir rehearsal. My husband, who we usually leave home alone on Thursday nights, was out late for a work event. By the time I pulled into my destination, I had a Dexcom alert on my phone. My daughter was low-ish. She was in the 60's. Which had happened the night before after dinner too, and she'd gotten kind of stuck there. There are a couple of days every month when sticky lows tend to occur, and I began to wonder if that was what was happening.

I texted her suggesting that, given the stickiness of last night's low, suspending the pumps's insulin delivery for a while might be a good idea.

By the time I got upstairs to my rehearsal I had another Dexcom alert and she was now in the 50's. She had not texted back. I resorted to texting, "Please tell me you are okay." Which at the time I felt might not be well received, but I was nervous enough not to care.

She replied that she was, that she would suspend insulin delivery on her pump, and that she'd had a juice box.

For the next 25 minutes I sang and texted and watched the Dexcom app and wished my husband was home, two blocks from my daughter, to run her up some more juice. The Dexcom alarms went from low to urgent low. I realized I'd stopped singing entirely.

By 7:55 my daughter had consumed everything in her bag and a sugar packet she'd scavenged from the band director's desk. Her blood sugar had dropped into the 40's.

I left rehearsal, clutching my phone, mysteriously muttering, "I need to go," and zipping out the door.

By the time I got in my car, 2.5 miles away from the high school, the Dexcom app read 'LOW.' That meant her blood sugar had dropped below 40.

When I texted my daughter I was leaving, she replied, 'Why? No. I'm fine. Go back. Don't Worry.'

That didn't work.

I did not drive the speed limit. I texted and drove. I Dexcomed and drove. And I prayed that my daughter would continue to text me and that all of the steps she'd taken so far would tide her over until I could help.

I ran in and out of my house to grab a juice bottle. I double-checked I still had glucagon in my purse from our Christmas trip.

She was back 'up' to 44.

I texted her I was on the way to the school with the juice.

'Well I can't leave.'

I left a bottle of Apple and Eve outside the band room door, hoping nobody would think it was anything other than a sealed bottle of apple juice, and asked her to let me know when she'd gotten it. I assumed she would come to her senses and sneak out and retrieve it quickly and surreptitiously. If she didn't I'd have to go back in and make a scene.

She'd retrieved and consumed it long before I'd driven the two blocks back home.

As I obsessively refreshed the Dexcom app while trying to distract myself with something on the Food Network, I saw the numbers begin to rise and I began to breathe.

When jazz band was over at 9, she drove home with a safe blood sugar of 90.

This wasn't a case of being unprepared. Maybe she was un-overprepared. But when leaving the house for two and a half hours, it's extraordinary to expect to be in a situation where you consume 45 grams of carb and suspend insulin delivery while your blood sugar continues to drop like a rock. At least after an accurately bolused dinner, and no unusual level of activity.

I'm grateful for whatever combination of grace, steps taken by us, and dumb luck saved us from a bigger disaster. From 7:30-9 last night was the most scared I've been of diabetes in years. We work so hard to keep things predictable and on an even keel but this was a sobering reminder that diabetes is, inherently, a dangerous disease.

Every diabetes scare we've had has resulted in steps towards preventing a repeat. Extra juice bottles will be squirreled away around my daughter's home-away-from-home in the band room and stage area of the high school. She'll stuff a few more airheads in her diabetes bag.

Unfortunately we know that there's always another unpredictable moment lurking, on any given Thursday.

Scene of the Crime

On Christmas eve I had the unexpected opportunity to revisit the emergency room where my daughter was diagnosed with T1D.

I was the patient this time, having passed out on the kitchen floor of my in-laws' home first thing in the morning. It turns out that I probably should have been taking better care of the bronchitis that had been brewing over the preceding week instead of powering through Christmas prep, travel and time with family. The good news was that the experience was more surreal than serious and I'm making what promises to be a full recovery from both the bronchitis and the ribs I injured on the way down.

We lived two towns away from my in-laws when my daughter was diagnosed, so the drive to the hospital at dawn was familiar. Winding roads taken at a speed slightly over the limit, the beginning of daylight, anxiety and uncertainty. At the ER entrance there seemed to be an upgraded reception area, but the interior was about the same.

I was settled onto a gurney in an ER sized cubicle room and asked a hundred questions. A team of professionals got busy taking my vitals, taking some blood, and hooking me up to machines to continuously monitor my oxygen, blood pressure and heart. And all I could think about was 16 years and 3 days before, when I stood where my husband was standing. Out of the way, but in clear view, watching my daughter being hooked up to all of those things. And the interminable wait while they tried to get blood and insert an IV into her tiny dehydrated veins. I made out much better in that department.

Near the end of my 4 hour visit I was taken for a walk around the unit while hooked up to equipment to monitor my blood pressure and oxygen - making sure nothing dropped precipitously while I was upright and moving.

We passed the cubicle my daughter had been in. We saw the conference room where the doctor had taken us to discuss her condition. We walked over the place where I had stood with the helicopter EMT when she demanded insulin be started before transporting my daughter.

When I was released, I exited through the ER doors and we drove past the helipad from which my daughter and I had taken off, headed to the big children's' hospital in the city. We drove back to my in-laws' where my daughter had been hanging out with her grandfathers, playing cards, starting a crock-pot dinner and making and bolusing for her lunch.

Sweet Sixteen

Sixteen sweet things about the past sixteen years with T1D:

1. My daughter was diagnosed in time.

2. Christmas in a children's hospital is not an experience I'd wish on anyone and yet was magical in ways no other Christmas could be.

3. She and I both survived the toddler diabetes years.

4. We found other families with diabetes quickly.

5. We continue to have diabetes people in our lives: friendships we treasure both despite and because of their diabetes glue.

6. Ruby, the teddy bear with diabetes, lives with us and continues to be a fuzzy source of support.

7. A perfect and welcoming preschool was, essentially, in our backyard.

8. I found the diabetes online community; and then I got to start a blog and revisit my second grade goal of being a writer when I grew up.

9. The elementary school nurse was a treasure; and her diabetes care was great too.

10. Friends' parents invited my daughter over for playdates, however uncomfortable they may have been.

11.Lots of friends and family have gone out of their way (especially in those early pre-pump years) to loop us in on menu plans and eating schedules, making our visits easy.

12. Teachers have kept an extra eye out, no matter the other chaos in their classrooms.

13. Schools have found a way to make trips, special events and after-school activities work.

14. We've had amazing medical professionals on our team.

15. Math has always come easily for my daughter (and my math skills have greatly improved).

16. My daughter has grown into a responsible, self-confident and compassionate young woman.

Sixteen years ago today we had a tough day. There have been quite a few tough diabetes days every year since then. But, from time to time, it's worth counting our blessings.