After Midnight

"Mom?"

"Mom?"  My eyes must have opened slightly, or I mumbled something.

"Something's wrong with my pump."

And then I was awake.

"It was beeping when it woke me up … booEEp, booEEp … but now it's dead. Nothing happens when I push the buttons. And it's hot."

It was the wee hours of the morning. We were on vacation in a cottage near the beach.

"Ok- let's see."

I got up and followed her back to her little room where we turned on a light and set to work.

Hoping the simplest explanation was the right one, I took out the battery, using a coin from the pile on her bedside table set aside for an expedition to the penny candy store. The battery was hot.

I inserted a new battery and screwed the cap back on. I prayed, thought good thoughts, and implored the diabetes gods for mercy. The pump would spring back to life. We would not, in the middle of the night, on vacation, have to go back to injecting insulin for the first time in 13 years.

Time stood still for an infinite moment and then, there it was, the familiar alien-like startup beep of the Animas pump. I confirmed, when prompted, the battery type, and the date and time, which were reassuringly still correct. Then, as the pump requires with every battery replacement, I set in motion a full rewind of the cartridge area. Knowing that the full rewind also signals the pump to perform a full system check I once again sent out pleas to the universe that a pump failure would not, please, be among our vacation memories.

The motor whirred. And whirred. And whirred. And then...

"beep!" Just the usual, friendly little 'I'm ready,' beep. I finished the process and my daughter reconnected.

Still more than a little freaked out, and now wide awake, I photographed every pump setting, not sure if my most recent records were recent enough. I tucked my daughter in and returned to bed where I lay; not at all optimistic that the crisis had actually been averted. I considered all of the options for obtaining a replacement pump if need be. I sorted out what I could remember about multiple daily injections. I tried to figure out what had happened in the first place. I got up twice to make sure her blood sugar was staying steady- that the pump was still working correctly.

In the light of day, with the pump working properly again, the explanation seemed fairly logical. The hot battery was familiar from times we've changed it after the 'I'm going to die in half an hour or less' warning. The initial low battery warning, indicating a couple of days' power remaining, had been visible on the pump for at least most of that day, my daughter said, and she'd planned to change it during the next day's site change.  But it's possible it had been there longer, since we were in vacation mode and, as is our custom, paying less attention to diabetes than usual while enjoying vacation things. Or maybe the battery died a little faster than usual with all the extra use for vacation food. Maybe the pump alarmed for the full half an hour foretelling its imminent demise, and simply didn't wake my daughter from her vacation-induced deep slumber - we'd been out late and came home tired.

All that really matters is that the new battery continues to work just fine, a couple of weeks later, and we were able to enjoy the rest of our vacation.

Thankful

Unlike last year's expedition, which could have been subtitled, 'airplane flight to 5 days of walking in chaotic environments,' this year's music department trip seemed like a manageable adventure. It was a four hour bus trip to spend 3 days and 2 nights in and around an interesting city. Because of the presence of a great school nurse, concerned chaperones and staff, and friends who have my daughter's back, we decided, with my daughter, that she'd travel without a parent. Here's the note [with awkward edits for privacy] I sent to the band director on the Monday after this year's trip:

Just a note to say thanks for a great music trip.

 

What a nice opportunity it was for the kids to attend Thursday's concert.  [My daughter] was especially excited to see such an incredible piano concerto performed. 

 

Between the concert, the chance for feedback and work on the concert band's competition pieces, and a fun and interesting collection of places to explore with friends, [my daughter] had a terrific time.

 

We're always happy to be involved in the life of the band, including chaperoning. But we're also grateful for the steps you and [the high school] as a whole have taken to allow [my daughter] to participate fully and safely without us present, encouraging her growing independence both diabetes-wise and beyond.

 

Looking forward to hearing tomorrow night's performance!

I mailed a similarly thankful note to the nurse who accompanied the kids on the trip. My daughter was in touch with her regularly via text, and they always knew where the other was. The nurse carried a little bag (within her giant 'nurse bag') with glucagon, glucose gel, and a spare meter set. Her assistance was never needed.

These notes reflected my acute awareness that my child was fortunate to have such a fun and positive trip.  There are other kids who are allowed to have these kinds of experiences but with much less quality support. And there are kids who are told (illegally but indisputably) that they can't participate at all. For three days Dexcom Share was my most-used app. The texts about the frosted flakes for breakfast and the bus full of rice crispy treats were cringe-worthy. But mostly, I'm thankful.

An Hour's Worth of Emotions

Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

I present to you the story of the events of Monday morning, with words describing our wide-ranging emotions about said events highlighted in bold print:

On Monday, my kid arrived at school anxious- not about the first day of standardized testing, but about which teacher had been chosen to proctor her private testing room. Her 504 plan has accommodations allowing her to stop and restart testing to deal with any diabetes issues, so she is separated from other kids since her test might be timed differently than that of others. "It's so awkward, mom, I hope it's a teacher I know at least." She checked the list posted in the school lobby and was confused. She had, inexplicably, been assigned to a room with a large group of special education kids. The texts to me began...

"Help! What do I do?"

"Go to guidance and explain that you've been told you were testing alone."

We texted back and forth for 25 minutes or so while she sat in the guidance office. People came in and out asking her questions and then disappearing for stretches of time. All of the teachers not assigned to a testing room were summoned to the principal's office via the PA system. She eventually stopped answering my texts at which point I assumed the situation had been resolved and that she had started taking the test somewhere- with someone.

Scrolling back through those texts, the words and emojis described the following emotions:

Surprise
Anger
Confusion
Frustration
Boredom
Impatience
Sadness
Anxiety
Loneliness
Aggravation
Annoyance
Hope
Disbelief
Stress

Those were interspersed, because how else were we going to cope, with

Amusement and
Laughter



In the end she was relieved that it got resolved, and amazed that the stress hadn't spiked her blood sugar. We were surprised that the rules required 2 teachers to be in the room with her and thankful that they were two teachers she knew and liked. They helped her settle in well and she feels confident about how she did on the day's tests.

In the end, I was proud of her for handling the situation herself and happy that technology allowed me to support her via text.

I would be embarrassed, however, if school officials discovered the number of circus-themed emojis I sent over the course of the morning.

While this story highlights in a somewhat lighthearted way how diabetes can lead to a wide range of emotions in just an hour of every day life, the possibility of long-term serious mental health issues is real. Depression, burnout, anxiety and other mental health issues impact most people with diabetes and their caregivers at one time or another. To read other perspectives on this topic, click here.

The Nervous Nurse

I glanced at the caller ID on my phone, which read  'SCHOOL.' It was my daughter on the line from the nurse's office.

"I was told to call you.  My blood sugar is 77.  I was 60 when I got here 15 minutes ago. I had a juice then and couple of glucose tabs just now. Lunch is in 20 minutes. It's Mrs. X.  She's not sure if I should go back to class. I'm worried about missing the final review and study-guide handout for tomorrow's math quiz."

"Mrs. X is the nervous substitute nurse, right?"

"Yup."

"Put her on. I'll tell her to let you go back to class."

Encounters with nervous nurses are, at best, like the one above. But they have also been known to go like this:

OMG YOU"RE 47!  SIT IN THIS CHAIR AND DON'T MOVE UNTIL YOU'VE CONSUMED ALL OF THE JUICE IN THIS OFFICE. I'M CALLING YOUR MOTHER RIGHT NOW.

Or, WHAT DO YOU MEAN YOU DON'T CHECK KETONES EVERY TIME YOU'RE OVER 200? THAT'S A VERY HIGH BLOOD SUGAR. DO YOU KNOW HOW DANGEROUS THAT IS?

Or, I CAN'T LET YOU {PLAY GYM/TAKE THE TEST/WALK HOME FROM SCHOOL} THIS AFTERNOON. YOU WERE 62 AT 9 A.M. YOU'LL GO LOW AGAIN!

Our full-time nurse for the duration of fourth grade was a nervous nurse.

We spent hours over the course of that school year talking her down from the ledge. With each phone call we explained again that every blip on the blood sugar graph was not a full-blown medical emergency.

We indoctrinated her, slowly but surely, into the idea of addressing diabetes concerns in the moment and then letting that moment pass and continuing on with the regularly-scheduled programming.

It was a delicate dance of acknowledging her concerns while inserting a dose of reality. We were unable to completely reprogram her but she became less panicky as the year progressed.

Substitute nurses are trickier- they definitely don't know my daughter as well, and they often have less experience with children with diabetes in general. I do hear we're making progress with one we've known since early elementary school. Generally, though, we resort to phone calls like the one above, on a case-by-case basis.

I absolutely understand the concerns. A nurse's job is to focus on the medical concern of the moment, with a 'safety-first' mentality. Which begets worry. Which I understand.  I know worry. I worry a lot about diabetes. So does my kid. But after 14 years, we've learned when to worry and when not to. We have learned when the time to worry has passed. We have learned how to incorporate life with a chronic illness into life lived fully. So sometimes we need to talk a nervous nurse down from the ledge.

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.

Sleepover Dilemma

Sleepovers at friends' houses always pose dilemmas: uncertain menus, late night activity, relying on the Dexom for alerts of overnight issues,  heavy breakfasts, and more; but this weekend was the first time I found myself in a quandary right here at home.

Home game sleepovers aren't completely uneventful, diabetes-wise.  We've had to check blood sugars at 2 or 3 a.m. with another child in the room, and even had to give juice or corrections.  To my knowledge the friend I desperately try not to step on as she dreams in her sleeping bag has never woken up.  Snacks and bedtime involve a more structured routine than most of our guests are used to but they are, of course, kind and flexible as any good friends would be.

Sunday morning presented a new quandary though.  I woke up at 7, and my daughter and her friend were, as expected, still silent in my daughter's room.  The Dexcom read 80, straight across.  At 7:30 it read 76 straight across and it was still very quiet in the house.  At 8, it alarmed:  69.  Here's my thought process:

At 2 a.m., the friend would certainly sleep through my barging in, but at 8 a.m., chances are good I'm going to wake her up.  I don't want to do that.  The sensor is only a day or two old and it seems to have been running a little low since we revved it up.  It's probably just still a little bit off.  And with the margin of error on all blood sugar readings if  I wasn't running in there at 76, how different is 69, really? But, of course, what if it's off in the other direction and she's really 50 and I don't do anything about it? If she's 50, that's bordering on dangerous.  But maybe it'll go back up.

By the time I'd hemmed and hawed over all of this, it was 8:20 and the Dexcom alarmed again:  under 50.  It buzzed four times since we had it set to vibrate first, then to beep if the vibration went unacknowledged.  Now at this point, I'd been listening very intently, hoping for any sounds of life from the bedroom.  I was pretty sure I'd heard my daughter moving around in her bed (there's a squeaky spring). So I put Dexi in the bathroom, on a shelf which backs up to the head of my daughter's bed.  A minute or two later it blared, "beep beep beep beep!" 

At which point I heard her get up, grab her meter and check, and get back into bed.  It was still quiet.  The rattles, clicks and beeps of the blood sugar check hadn't woken her friend.

Within 10 minutes, the line on the Dexcom graph started going back up.  My daughter's friend woke up a few minutes before 9, and they came out for breakfast soon thereafter.

"I guess you corrected when Dexi alarmed at 8:20?"

"No- I was 88.  I just got back into bed."

Should I have acted sooner?  Probably.  A severe low blood sugar emergency would have been worse for the friend to wake to than me creeping around her air mattress.  But am I  glad I didn't wake her up for nothing?  I am.  What would others have done in my shoes (or slippers)?  I'd love to know.

Common Denominator

A piece I was asked to write for Disney and Lilly Diabetes' joint website, T1 Everyday Magic, was posted last week.  It's called, "10 Signs You're No Longer a T1D Newbie".   The top 10 format was a great vehicle by which to organize a list of milestones familiar to those of us who've been at this a while and also seemingly attainable to the new parents on the block.  By design, it lent itself to adding humor to the mix. 

As I reread the list, I was struck by a theme which runs through the piece, a common denominator:  You know you're no longer a 'T1D Newbie' when your anxiety level becomes manageable.  You don't panic about every high and low- you just move on and treat them.  You are able to leave your child at a party or sleepover and concurrently do something besides sitting around worrying about it.  You've assimilated the carb counting and the organizational needs into the background so that the rest of life can go on in the forefront.  Every-day life levels out to a calmer, more even keel.

The anxiety never goes away completely.  And sometimes it's still unavoidably prominent.  The first time the kid takes a new step towards independence or tries a new athletic activity is going to be stressful.  The 400's and 30's are still going to keep you up at night, even if they happened at noon.  Every time you don't get the anticipated check-in text from your kid, you'll assume the worst.  The truth is that while it really does get easier (which is an important message for parents of newly-diagnosed kids to hear), it never gets easy.  While the initial ceaseless anxiety about every little thing dissipates, it remains a recurring theme.

Having been asked to provide an encouraging piece of writing, I didn't add that last paragraph to my top 10 list.  But as I add it here as an important footnote. If you're looking for the more positive, funnier ways you'll know you've gotten the hang of things, click here!

A Big Deal?

This Diabetes thing is a really big deal. 

Please don't make a really big deal about it.

These sentences are from a post I wrote about meeting with the nurse and teachers before my child started fourth grade.  These words were an attempt to sum up what I was trying to impress upon the school staff about having my child in their classrooms.  

I wanted them to be worried enough that they'd keep an eye on her.  I wanted to make sure they wouldn't let her forget her emergency bag for fire drills.  I wanted to be alerted when there was a change in schedule or a class party.  I wanted diabetes to be in the back of their minds always, just like it's in the back of my mind at all times.

Yet at the same time I wanted her to be just like every other kid in that classroom.  I wanted her diabetes to be as invisible as possible.  I wanted her to participate in every aspect of school life just like the other kids.  I wanted her to go through her day without being constantly asked if she was o.k. or given any special attention.

Ditto for the rest of her life.  This quote pretty much sums up our household's diabetes philosophy.

This Diabetes thing is a really big deal. 

Please don't make a really big deal about it.

We do our fair share of worrying. We are prepared with all of the supplies and information we need to keep my child healthy.  We remain aware of what her blood sugar numbers are, and how the next activity might change them.  When she's easily flustered, or lethargic, or absurdly giddy we ask her to check her blood sugar to determine whether she's low, high, or simply 13. When there's a diabetes issue we stop and take care of it. But all of this stuff remains, as much as possible, in the background of an otherwise full and normal life.

She goes to school and does her homework.  She sings, acts and plays two instruments.  She participates in sports.  She stops to buy a snack with her friends on the way home from school. She hikes and swims and kayaks.  She goes to friends' houses, birthday parties and sleepovers.  She eats out and travels.

It would be easy to let anxiety about all of the what-ifs of this disease slow us down.  It would be easy to say no to so many of these things.  

But we'd rather not make a really big deal of it.

Today's Diabetes Blog Week topic asks us to share a favorite sentence or post we've written, or to share why we started the blog in the first place.  Find the rest of these posts HERE!

Panic

As I rolled out of bed this morning, I grabbed Dexi for a peek.

Turns out the signal had been lost for about half an hour, which happens from time to time. It's usually not longer than that, and usually not a big deal.  Per the graph, blood sugars had been been skirting the 80 line for an hour or two before communication was lost.

I wonder if this is physiologically possible?

I got up, and as I walked past my daughter's door, Dexi regained contact. Bzzzzt, bzzzt, bzzzt, bzzzt. Four is not good.  Four bzzzts means under 50. My usual routine of starting the coffee before hauling the 13 year old out of bed was aborted.

I was relieved to easily wake her with a gentle rub on the back and a 'good morning.'

Meter in hand, I wasted no time checking her blood as she began to rouse herself.

113.

Good news, if a bit unexpected.

I fed Dexi the number and followed up with another as she requested (which was close to the first) .

As my daughter put her toast in the toaster, a mere 10 minutes later, more alarms:  bzzzt, bzzzt.

High.

Impossible, I decided.  Clearly, Dexi's in some sort of panic mode at this point and making wild guesses.

"Just let her settle down," I advised.  My daughter actually gave the Dexcom a little pat and told it not to freak out.

By the time we'd finished breakfast, Dexi was reading in the low 100's and her imaginary crisis was over.

Armed (and Dangerous?)

The birthday party challenges keep coming this spring.  The latest was an invitation to a celebration at a restaurant serving a buffet brunch.  Mulling it over, I shared the invite with my daughter, offering her an alternative option. If she didn't want to manage the diabetes aspects of a buffet brunch alone, she could join the group after brunch for the pool party which would round out the afternoon.

"I really think I can do it!" was the overwhelmingly self-confident response.

What could I say?

What was the worst that could happen?

How would we ever get to an overnight road trip with friends without first allowing smaller steps like this one?

So she went to a very nice restaurant with beautiful water views to have brunch with a few of her friends and two brave parents.  Armed with her pump, dexcom, cell phone and calorie king app, she was otherwise on her own.

After a two mimosa brunch of my own and a comforting mid-afternoon ice cream stand stop, I picked her up at the pool at 5:45.  She was smiling from ear to ear and recounted in great detail all of the food she'd enjoyed.  She loved the restaurant, being with her friends, and playing volleyball at the pool.

Diabetes-wise? The Dexcom graph included dots on almost every level of its screen.  By 6 it just read 'high,' and stayed that way for over an hour despite two major corrections. The meter's remote showed that over 100 grams of carbs had been bolused for at brunch, and that corrections had been given at 2 and 4 for numbers in the 150-200 range.  She had unplugged the pump twice to swim but not for long since the water was "freezing."

As far as I can tell, she did all that she could, and I made sure she understood that.  A discussion of the desserts she sampled leads me to believe she under-calculated their carbs but since miniature pastries aren't on our regular menu, she was forced to guess.  The real problems didn't start until almost 4 hours after brunch, probably when the fat from the {still unclear to me number of} pieces of bacon she ate met the 105 + brunch carbs and the handful of pretzels she bolused for at the pool.  Truth is, she could easily have hit 400 whether I was with her or not.  Buffets are hard.  Mystery foods are hard.  Add into the mix frigid pool water which tends to spike her, unplugging to swim, and a healthy amount of excitement, and the results are not entirely unexpected.

All we can do is try to learn from the experience.  Mini pastries have more carbs than expected and should be consumed in limited quantities.  Balancing high carb and fatty foods from the buffet with a few lighter options might mitigate disastrous blood sugar results.  Following a heavy meal with an adrenaline-producing dip in ice water while the pump is unplugged shouldn't be a regular occurance.

You may think it was dangerous to send a 12 year old with diabetes to navigate a buffet brunch.  Perhaps a little bit.  But really, on some level, it's dangerous to send a 12 year old with diabetes anywhere.  The best I can do is to arm her with the tools and knowledge she needs to take care of herself, and with confidence. Despite the results, this was definitely a confidence-building experience.  For both of us.

What Brings Me Down

Today's topic: May is Mental Health Month, so now seems like a great time to explore the emotional side of living with, or caring for, someone with diabetes.  What things can make dealing with diabetes an emotional issue for you and/or your loved one, and how do you cope?  More  posts on this topic can be found here!

What brings me down as a parent of a child with diabetes is when the disease impacts what my child can and cannot do.  With her cell phone, insulin pump, Dexcom and growing self-awareness, my daughter is now able to do most things other kids her age do.  But not always.

A couple of weeks ago, I wrote about having to say 'no' to an overnight birthday celebration at a friend's vacation home two hours away.  If you'd like to read the whole story, it's here.

Looking back on the post, it tells the story from start to finish.  It explains the logic of our decision and touches on the difficulty of making it.  Yet the emotions are not adequately conveyed.  I mentioned tears, but the whole thing was a real downer.

Reading the invitation?  Deflating.  Anxiety-producing.  Disappointing.  Saddening.

My daughter's reaction?  Like the stages of grief.  They were all there, though not necessarily in order:   denial, anger, bargaining, depression and acceptance.   Fortunately she moved through the whole thing in under an hour, but she was and still is deeply disappointed she can't be there.

How do we deal with it?  With this situation and others like it, we tend to combine two tactics to face the curve balls diabetes sends us.

One, I suppose, comes from our stoic New England and Pennsylvania Dutch roots. With this party invitation, as with other situations in the past, we didn't dwell on it. We had a little cry over the whole thing and unleashed a healthy tirade over diabetes' awfulness.  Then we had lunch.  What else was there to do?

The second is the fun part.  It's the 'when life gives you lemons, make lemonade' idea.  No, she can't go to the party, but we did arrange a fun sleepover at our house for the same night, and there's likely some mini-golf on tap for the weekend as well.  Is it as good as the original opportunity?  No.  But fun will be had, gosh-darnit.

Diabetes can be awful, painful, isolating and depressing.  It takes conscious effort every day to keep it from taking over our household.  Some days it takes everything we've got.

Hello Ketones

She was awake early with stomach cramps, nausea and a low grade fever. She felt miserable. On the bright side her blood sugar was quite reasonable.  I relegated her to the 'sick corner' of the sofa with the remote and a cup of peppermint tea.  

I proceeded to make the requisite phone calls, and coffee.  Then, ironically, I had to go to the school anyway to drop off dessert for lunch with a visiting author. On the way home I stopped at the convenience store to pick up a low-carb sports drink.  

Arriving home, I had my daughter check her blood sugar again.  Then it occurred to me (belatedly, I know) to check for ketones too.  I dug the blood ketone meter out of the diabetes box.  A quick drop of blood and the result read out.  '1.2.'

"That seems pretty high," I said vaguely. We check ketones during illnesses, but it's been years since she's had any.  I did some quick research. 'Moderate' was the official term I was looking for.  We needed to take action quickly or things would go from bad to worse.  Meanwhile, her blood sugar was down to 120. She needed insulin to help clear the ketones, and therefore she'd need to take in some carbohydrates to balance it out. 

I calculated a generous insulin dose and she managed to get down 15 carbs of ginger ale.  I then provided her with a cheerful travel cup full of the diet sports drink. She sipped as best she could to start washing those ketones out of her system. The combination of insulin and hydration began to work their magic. We were soon out of the woods.

What struck me about this incident was how unprepared I felt for it.  My instinct, when I didn't know what that ketone reading meant, was to time travel back 11 years and dig out the booklet our children's hospital gave us when she was diagnosed. The chart was right where I pictured it, accompanied by lots of helpful advice which helped me deal with the problem.  Yet questions remain.

Should I be relying on 11 year old information or are there newer protocols?  Would it be worthwhile to review sick day plans at our next endo appointment?  Should plans for various emergencies be reviewed every couple of years as a rule?

Hopefully it will be another few years before I need this information again, but I don't plan to wait that long to refresh my memory.

Helicopter Parenting

I'm one of those parents.

I'm the last one to leave the birthday party and the first one back. If I leave at all. 

If parents are allowed on the field trip, I'm signed up.

I'm on the sidelines of every softball game from pre-game practice 'til the end and I insist on stopping by the bench at least once during the game to check in.

I hunt her down at the town pool to ask her if she's o.k.

She must text me when she starts walking home from school.  If she's not home in less than 20 minutes, I'm headed up the street to look for her.

During school dances, I like to plan an outing with my husband or a friend at a restaurant across the parking lot from the entrance to the gym.

If she's somewhere without me, I'm constantly texting to check in.

I watch her while she sleeps.

People judge those parents.  (Actually, people judge just about every kind of parent but that's a topic for another day.)  'Their kids will never gain any independence.'  'Their kids will be wishy-washy'  'Their kids will have no sense of self.'

For the judgers out there, two things to consider:

First the obvious, based on the theme of this blog.  You may not know why a parent is hanging around the roller skating party or watching their child like a hawk on the museum field trip.  This disease is unpredictable, and when put in unusual situations like the ones I've described, my daughter is very likely to have issues with her blood sugar for which she needs a trained adult's help.  I hover because there's a real and ever-present risk, beyond what you can see, to my child's safety.

Second, the interesting part.  The same words have come up at every teacher conference since preschool. My daughter is described as responsible, self-aware, and self-confident.  How did this happen with me hanging over her for her entire life?  I can't say for sure but I try to strike a balance when I can. When it's safe, I encourage independence.  She walks home from school with a friend and her cell phone.  She's been using a paring knife since she was 8.  She attends sedentary birthday parties with uncomplicated food by herself.

When I feel, for her safety, that I must hover I try to be as invisible as possible.  I don't roller skate with her (to be fair, there's more than one reason for this decision). I stand back while she hangs with her friends on the field trip. I'm at the umbrella table with the best view of the pool, but I'm usually reading my book.  She knows that I'm there to help her with diabetes, not to be incessantly involved in the minutia of her life.

I often wonder if I'd be one of those parents if it weren't for diabetes.  It's impossible, of course, to know. I've been hovering over her since before she could walk.  It will get harder as she gets older, and I'm grateful for today's technology which makes hovering from a distance much easier.  Hopefully I'll continue to be able to strike the balance between being available to help and letting her spread her wings.

Chionophobia

I learned a new word this week.

Chionophobia is defined by Dictionary.com as the 'fear of snow.'

If weather conditions don't improve soon, I'm at risk of developing a full-blown case of this disorder.  For now, my fear is limited to times when snow and diabetes cross paths.

As the years go by, there are more and more places I'll let my daughter go without me. The 'what-ifs' of diabetes are ever-present, but visits to friends' houses and evenings at school events have become activities with which I'm fairly comfortable.  This is good, giving her a sense of independence and allowing her to test the waters of responsibility.

A couple of weeks ago a friend's family invited her to go sledding with them.  I momentarily considered dropping her off with her sled and coming back to my cozy house.  Then I began to gather my snow clothes. Sledding and even walking in the snow can cause, for my child, steep and unpredictable drops in blood sugar.

When we arrived at the sledding hill on this particular day, my pockets were stuffed with diabetes paraphernalia.  She began sledding with a blood sugar of 190, and dropped very, very slowly over the next hour and a half. I watched the Dexcom graph and made her stop an hour in to double-check with the meter. As we walked back to the car with the Dexcom reading 150 straight ahead, I was beginning to feel foolish for having tagged along.  I was not. By the time we'd walked three hundred yards to the parking lot, I saw 68, with double down arrows.   This turned into a juice and glucose tab and snack kind of low which wouldn't quit.  Even my 'tween' girl was the first to admit she was glad I was there to help her.

A week later, a friend's mom called.  Could she take the girls for a walk in the latest snow storm?  Once again, I tagged along.  We were climbing through snow banks and un-shoveled sidewalks.  It was fun, but strenuous.  We stopped twice for blood sugar checks and glucose tabs.  We followed those up with juice and a hearty snack.

It's unlikely that at 16 she'll want her mom to come with her to the sledding hill.  She'll need to figure out how to carry and use all those supplies in the snow in order to keep herself safe.

In the meantime, having a personal nurse and Sherpa is, I think, a perk to appreciate.

The First Time

Binge viewing videos about Dexcom sensor insertion eased my anxiety, but the person for whom it was being inserted was still pretty nervous about the whole thing.  Understandably.

Once I felt prepared, I gave her the choice of whether to start right away or wait a day.  I expected her to wait, but she decided she was so nervous about it that she'd rather get it over with.  So before we knew it, she was reclined on a pillow, belly exposed.  With one hand she had a vice grip on her stuffed rabbit.  With the other she was scrolling through pictures on the ipod.

The first obstacle was that she's very ticklish.  So every attempt to come near her, even with an alcohol wipe to clean the area, was a met with flailing hands (rabbit included) and giggly yelling.

Once we'd chosen and cleaned the area, we unwrapped the inserter.  We peeled back the adhesive and stuck the contraption to her skin.

This is when she balked.  "No!  I'm not doing it.  I can't."

Negotiations ensued.  See above for her arguments.  Mine included: 'We've gotten this far...we can't turn back now.'  'Let's just get it over with.'  Less helpfully, 'This thing cost us a lot of money...we're not wasting it.'  More helpfully, since it made her laugh, 'If you don't let me insert it, I'm going to leave the whole thing stuck to your stomach and you'll wear it that way for a week.'

We spent 20 minutes sitting on her bed, her with the giant applicator taped to her stomach.  At one point, she thought it might be easier if she pushed the plunger herself.  Ultimately she decided she'd rather close her eyes and strangle her rabbit.

Finally she did just that.

I pushed the plunger, heard the two clicks, and pulled the collar up for two more.  Except in super slow-mo. I'm guessing my hesitancy and wanting to be sure I did it all right caused it to be more painful than it will be once we get the hang of it.

"Did it hurt?"  I asked.

"YEAH, it hurt."

"Did it hurt as much as you were afraid it would?"

A half smile.  "No.  I guess it didn't."

Research

It was tempting to rip the packaging open last Wednesday and click-click a Dexcom sensor into my daughter.  My cautious nature stopped me.

In fact Dex is still nestled in its packaging, though not as tightly as it was last week.  

I've taken it out and set the time, set up the alert parameters, and played with the different sound choices.

I've read through the start-up info and viewed the online tutorial.  

This is where I keep getting stuck:

This terrifying looking contraption will insert the sensor onto and underneath my daughter's skin.

Every time she looks at it, my daughter says, 'that thing's just scary looking.'  It's not really said with terror, just as a matter of fact. And she's right.  

I spent some time yesterday trying to alleviate my apprehension about this process by typing 'dexcom sensor insertion' into my trusty search engine.

Guess what?  It worked.

This video from Diabetic Danica and this one by One Happy Diabetic were the best for what I needed, which was to see how to use this thing on a real person.  I needed it explained step by step in a peer-to-peer sort of way. Watching multiple videos taken from multiple angles was helpful too.  One person, for example, made it very clear how to tell if the transmitter is clicked into place perfectly by checking the two little tabs in the back. Others showed helpful adhesive advice. This one from Arden's Day was uniquely great since it shows a dad putting it on his child.  It's the one I'll show my daughter before we begin.

Blogs were helpful too.  Bigfoot Child Have Diabetes' kid is in my kid's age range, and she's funny, so her recent dex experience was helpful to review again.  Diabetic Advocate's  tips and tricks were clear and practical.  As always,I consulted  D-Mom Blog and SixUntilMe too.  

I read and watched and skimmed countless other resources, and every one had something helpful or reinforced the key things to remember as we start up this week.  

So in a nutshell, 'Yay Diabetes Online Community!'  Advice from the manufacturer and our medical team is, of course, paramount.  But seeing and reading about real people using this gizmo in real life was the extra piece I needed.  My confidence has been built.  Thank you!

Should I Be More Worried?

It's the first day of school in our neck of the woods.  And I'm not terribly worried about it.

My daughter is off to the same school.  She'll have the same nurse.  While her academic teachers will be new to her, the rest of the staff and administration is familiar with her.

Don't get me wrong. The baseline anxiety is a constant.  Anything can happen during the 7+ hours my child is out of my sight.  A low blood sugar could go unnoticed and untreated for too long.  A pump site could fail.  A student or teacher could give her a hard time about needing to detour to the nurse's office.

There's also the added first day of school anxiety.  How will the nurse's office visits fit into the new schedule?  Will she have lunch with the same understanding group of friends who always save her a seat?  Will she be so distracted by the newness of her classes and teachers that a diabetes issue will go unrecognized?  Will her teachers understand her needs and be supportive if necessary?

Last year's school start involved a new school and a boatload of anxiety for both of us.  I have to believe this year's challenges, should there be some, will pale in comparison. 

I have my phone at hand, well prepared for 'school' to pop up on the caller i.d.

I am planning a special first day of school dinner complete with a bolus-worthy dessert intended to smooth out any wrinkles of the day.

Yet I'm not that worried.  If I'm proven wrong, I guess I'll deal with it then.