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.

In The Back Of My Mind

The Other Half of Diabetes - Tuesday 5/17 We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

Always, in the back of my mind, is the possibility that, due to diabetes, my child will become unconscious when I'm not with her or that she will die at night.   When I hear an ambulance headed towards her school I wonder if my phone is about to ring.  When my child is sleeping in, or when I don't hear from her early on the morning of a sleepover, I wonder if she's asleep or passed out, or if she's even alive. Despite our attempts to push it into the background of an otherwise productive and happy life, diabetes is a dangerous and sometimes deadly disease.

I feel better when she's wearing the Dexcom. With it, I know she's got a safety net when it's a strenuous gym day or when she's out with friends.  When she's sleeping in I can check the graph and wake her if necessary. But even then a lost signal or a night of inaccurate readings will leave me glancing at her bedroom door, wondering.  Will I need the glucagon? What if she doesn't wake up?

It's not an overwhelming fear, nor do I dwell on it.  It just lingers in the back of my mind. Yet it certainly sets my concerns apart from those of other parents. They complain about their sleepy, lazy teenagers, but they rest assured that by noon these kids will appear in their kitchens no worse for wear.  This isn't a conversation I have with the mom's night out crowd.  It's a huge jump from, "I wish Susie would get her butt out of bed and do something useful on Saturday mornings," to "Well at least you know she's getting up- when my kid sleeps in , I seriously consider the possibility that she's unconscious or dead.  Please pass the chardonnay."  Sharing this anxiety could, mental health professionals may contend, be helpful to me, and it would certainly be a form of advocacy and awareness-raising.  So far, beyond a couple of very close friends, I'm not there.

How, then, do I keep these thoughts from paralyzing me...how do I keep them in the back of my mind?  Fortunately I'm generally not prone to episodes of panic, so my overall temperament helps. Writing and reading here in the diabetes blogosphere reminds me that I'm not alone, which is a huge source of support. When I notice I'm beginning to dwell on this (or any other) anxiety, I know it's time to take better care of myself. I push myself to engage in incredibly simple but sometimes seemingly impossible tasks like making myself a cup of tea, taking long walks, eating well, ensuring that I'm spiritually engaged, doing something fun, and/or talking to someone I trust. I can't eliminate this particular anxiety without eliminating diabetes altogether, but I've remained able to keep it from becoming more than an occasional fleeting thought.

Living with diabetes means living with a unique collection of stressors, fears and other emotional challenges.  I'm curious to read how other people deal with the ways diabetes impacts their mental health, interpersonal relationships and sense of self.  Click here to read more posts on today's topic.

Teenage Thoughts Interrupted

This is only a sample of what I imagine is circling through my daughter's mind, on repeat, every day:

when am I eating next
4x+y=47...where do I start
what's my blood sugar
when is that English essay due
we're running in gym today so I might be low
I wonder if Molly can come over after school
I'm sitting for an hour and a half in the assembly- I'll probably be high at lunch
I love the new Nick Jonas song
the school schedule changed for the day so lunch is really early- that'll mess up my blood sugar
should I get a new mirror in my room
should I have dinner before or after tennis so I don't go low
my piano recital is on Saturday
is it site change day
which dress should I wear for 8th grade graduation
why am I high
I need to get something for grandpa's birthday
should I ask all my friends to stop and wait for me while I check my blood sugar
why are my friends arguing over where to go for lunch on Friday
how many carbs are in this dish of Italian ice
are the Red Sox on tv tonight
should I correct again or will I crash because I might only be high from being nervous about the quiz
when are auditions for the summer musical
did I silence the dexcom or is it going to alarm during the concert
maybe I'll call my cousins tonight
why are there no clean measuring cups so I can measure my rice for dinner
that panda video is adorable
should I go to the nurse for this 69 blood sugar or just eat a couple of glucose tabs at my desk
should I ask for a new phone case
I need more dexcom tape
maybe we could shop for shoes for the 8th grade dance this afternoon
I have to bring more juice boxes into school tomorrow for the nurse's office
does the library have the book I'm waiting for yet
where did I leave the meter
is it my turn in words with friends with grandma
I have to remind mom that we need to reorder the pump supplies
should I post a selfie on Instagram today or is it too soon since the last one
maybe I'll just have cucumbers and hummus for snack so I don't have to count carbs
I'm so excited about this ancient Egypt history project
I can hear the alarm but where did I leave the dexcom
this box of tic tacs is almost gone

Behind the Scenes of an Average Friday

On Friday, my daughter got up, had breakfast, got dressed, and went to school.  She had a test and a quiz there, ate lunch, and walked the track during gym.  After school she and a few friends stopped at a pizza place and went to the park for an hour before walking back to a friend's house. Once home, she practiced piano, watched t.v., ate dinner, and enjoyed dessert while watching baseball.  She was in bed before 10 and asleep soon there-after.

Sounds like an average 13 year old day, right?  Let's look a little closer:

On Friday, my daughter had her finger poked at 2 a.m. and was woken up to drink juice.  When she got up in the morning, she poked her finger again, chose among a limited selection of high fiber/high protein breakfast choices, and did some math problems.  She programmed her insulin pump and finished making breakfast.  She wanted to wear a skirt she likes, but decided that since a busy afternoon was planned, she'd be happier with her insulin pump tucked in the pocket of shorts so she wouldn't have to worry about it slipping off her waist band. 

She poked her finger after gym at school and was detoured to the nurse's office for juice before heading to take her quiz.  She finished the quiz while the rest of the class started the next lesson.  Before lunch she went back to the nurse to poke her finger again and program her pump using the note her mother put in her lunch saying how many grams of carbohydrate were in there.  A friend came with her to the nurse and they both arrived at lunch later than the other kids.

After school, she poked her finger again before walking to the pizza place. She really wanted to try the garlic knots.  This decision necessitated a phone call and several texts with her mother to discuss how many carbs would be in this snack.  After deciding they were close in size to half a mini bagel each, she programmed her insulin pump and ate.  She and her friends walked the block to the park and after walking around for a while, she poked her finger again.  She needed to eat some glucose tabs before walking to her friend's house.

When she got home, she poked her finger again, gave insulin for a high blood sugar, and drank a large glass of water to counteract the effects of the high.  Between piano practice and t.v. time, her mother used an enormous spring-loaded contraption to insert a sensor under her skin.  She hugged her stuffed rabbit.

She poked her finger again before sitting down for dinner.  After sitting down at the table, she had to get up again to get a measuring cup to make sure she ate the amount of rice she would take insulin for.  She then programmed her insulin pump to deliver a dose for the meal. 

During a commercial in the baseball game, she poked her finger and counted 10 mini nutter-butters into a small bowl. She debated whether she was still hungry and whether she wanted to add some apple slices to dessert and decided it was too much trouble to count and dose for them.  So she put on her pajamas and her insulin pump pack, since pajamas don't have pockets.

At around 11, her finger was poked one more time before her father went to bed, but she didn't wake up.  It had been a busy day...even busier than most people would imagine.

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?