Fair Flu Shot

She slouched down in the passenger seat; her messy top knot bun was getting scrunched  up.

A few days ago during our car ride to the pediatricians office, mentions of flu mist and flu shots peppered the conversation.  Bridget was listening in earnest as Joe talked about live and dead viruses.  The dead ones being what he needed, due to his diabetes.  Unfortunately the dead ones were in the flu shot and not the mist.  Bridget could opt for the flu mist, since she does not have a chronic condition.  Bridget sighed and then slouched down a bit further.  Bun getting scrunched up even more.

Silence took over the moment

Quiet filled the space.

Then Bridget confidently stated "I'll do the shot too...  ... to be fair .. to Joe."

A simple, softly spoken "thanks Bridge" came from the back seat; from Joe.

For the remainder of the car ride, discussions of past vaccine and shot experiences ensued.

They were both nervous, anxious, and worked-up.  

We arrived to the parking lot.  As we exited the car, a hearty and quite unexpected ... "don't BlarT yourself Bridge!" was called out by Joe.  From what I could gather the verb in that statement is two simultaneous expulsions (or explosions; take your pick) from opposite ends of your body.  They were both concerned this may happen to them upon inoculation.

Lovely.  I'm so proud.

Joe and Bridget were hand-in-hand as we maneuvered through the parking lot.

"We are in this together" cried Bridge.

Flu Shot Selfie

Being fair in our day-in-the-life.

A Small Mention

Earlier in the morning he had played a hockey game.

Then he swam.

As he approached me from the hotel pool, I knew.  The stumbles in his gait gave me the heads-up before the quickly whispered "I feel low" was uttered into my ear, while I stood in the hotel lobby.

I tried to get him to sit and check.  He wouldn't.  He immediately headed up a flight of stairs to our room.  This act gave me some peace of mind, his ability to climb the stairs.  As he entered our room, he crumpled.  I checked.  He was 24.  Smarties were dispensed.  Time was waited out.  Another blood sugar of 45...juice...more time...another blood glucose of 36...another juice....  He had trouble lifting his arm to man the juice; his extremities were useless, weighted down from the lack of glucose.

This past weekend, Joe and I traveled to the Montreal area with his hockey team.  Traveling in itself  can present some challenges in managing t1d.  Add in hockey games and a swimming pool ... and ... well ... jabbing my eyes with fiery hot pokers sounds like a more pleasant experience.  Joe's blood sugars usually climb to the low 300s during hockey games, due to the adrenaline rush.  I  partially correct those highs and don't cover about 20-30 grams, or so, of post-game carbohydrates.  The swimming and the scant IOB from the small correction did him in.

A few hours after the BG of 24 incident:

"Joe, did you feel low while you were swimming?"

"yes..slipped...on the pool deck...my legs weren't working right."

"Why didn't you stop?  .... for sugar?"

"I thought I had more time." (before it got bad)

"Joe, you can't do that.  You need to stop when you feel that way and eat sugar.  It's dangerous.  You could die from a low."

"I could?"

"Yes, potentially.  You didn't know that?"

"No."

"You should treat the low right when you notice it."

A few hours after the 24/He played another hockey game.

I thought he knew lows could be lethal.  I don't know why I thought this.  I never really told him that.  I just assumed he knew.  Thinking back over the years, I realize I've avoided telling him that little tid bit.  There was no reason to when he was 3, 4, 5, 6, 7, 8, 9, or maybe even 10 years old.  Now there is.  He is a 12 year old boy developing quite typically.  He wants his independence.  I want him to have it.  It all scares me sometimes..though.

A small mention of death during our day-in-the-life.

My REM Cycle

Many, many countless nights this happens to me.  The Dexcom alarms integrate into my dreams.  They seamlessly become part of my REM sleep cycle.  At times, I believe the alarms have continued for 30 minutes, perhaps longer, before I am nudged to wakefulness.

The alarms can be actual alarms in the dream; like an alarm on an alarm clock or an alarm to alarm me about a dreamt-up patient who has some impending decompensation. The alarms can also be a motor-like noise; like a noise of a broken vacuum cleaner or a dishwasher gone bad.  The alarm can also be some app on the kids' phones.  In my dreams, I'm searching through bags and backpacks, going house to house, traversing through malls, through yards, in search for the sound so that I can put an end to it's intrusiveness. 

Our Backyard/Moon

1:38am, a few nights ago..

WOMPP!  WOMPP!  WOMPP!  WOMPP!

It becomes part of my dream.

It's annoying because I can hear it and it keeps me just enough awake, but somehow I'm kind of  sleeping.  

WOMPP!  WOMPP!  WOMPP!  WOMPP!

Again, I can't quite figure out what the noise is.  I'm trying to locate the source of it as I play the main character in my dream.  It keeps my brain just active enough to prevent total rest; complete sleep.

WOMPP!  WOMPP!  WOMPP!  WOMPP!

Finally, I wake enough.  I remember Joe.  My son.  My kid who has diabetes.  The alarm is the "DEFCON 1", he is really, really, really low alarm. Another  WOMPP!  WOMPP!  WOMPP!  WOMPP! sounds off, for good measure.

I wake.  I plod into his room.  I ready the glucometer.  I lift his finger for lancing.  His hand recoils.  A "bud ... your low" is softly spoken.  His hand relaxes.  I check.  He's 51.  One glucose tab is popped into his mouth.  He sleeps. He chews.  I'm nodding off sitting by his side, waiting for the first tab to be masticated.  Tab two goes in.  He remains sleeping.  The tab is slowly chewed and swallowed.  Finally, the third tab is given.  I wait til it's gone, making sure he doesn't asphyxiate.  The basal rate is decreased by 50% for two hours.

A day-in-the-life of our nights with type 1 diabetes.

Not So Easy

Diabetes care is non-negotiable.  Joe knows it.

If Joe doesn't do his diabetes jobs, checking blood sugars and bolusing, there is a consequence.  It is the loss of his phone for the following 24 hours.  Some people think this is harsh; like he is being punished for having a disease.  Think of it this way, he is a 12 year old with an iphone.  It's not a big deal.  Not taking care of diabetes is a big deal.  It can alter his morbidity and mortality.  

A few nights ago, his head was hidden by his sweatshirt hood.  His face was buried into the couch.  An arm draped over a dog; Oscar or Henry, I cannot remember which one.  

Henry - black/Oscar - salt and pepper

 He didn’t bolus for an after dinner snack.  The bolusing is where we are struggling a bit. I was questioning him on it. 

“Why?”

No response.

Head remains buried.  

“Why don’t you bolus Joe?”

No answer.

Head buried.

Stroking dog.

“Please answer Joe.  Is it that you forget?  Does it take too much time?”

Silence.

“I’m trying to help us figure this out.”

Joe peeked up from the couch cushions, head still veiled by the hood.  “I don’t know mom.”

“You don’t know?”

“Mom, I just don’t know.”  His eyes shone with tears.

I let it go… for now.

A not so easy day-in-the-life of being a preteen with type 1 diabetes. 

The Smiley Face Did The Trick

Joe finds them annoying; the questions.  The questions a head pancreas, who is supervising a pancreas in training, ask. It was much easier when I did all of the diabetes care. 

  

“Did you check?”   “Did you wash your hands?”

“What is your number?”  “What was your number?”  “Joe, check your number?”

“What is Dexter saying?”  “What was Dexter saying?”

“Have you bolused?”  “Did you bolus?”  “Joe, bolus.”

“Did you eat sugar?”  “Eat sugar.”

“Do you have your supplies?”  “Don’t forget your supplies.”  “Go get your supplies.”

“What did you eat” “What are you going to eat?”  “You gonna eat all of that?”  “How many grams?”

“Change your site?”  “Did you change your site?”  

This is a pretty accurate blow-by-blow of our days.  Mind you, the questions aren’t asked one at a time.  They pretty much get peppered out the way I wrote them.  We ask one; no answer.  So we ask again … and … at times, a third question or follow-up statement is required.  Parenting a preteen, a preteen male, a preteen male with type 1 diabetes, can be maddening. 

Even via text… 

I think the emoji prevented me from needing to ask a third time.

A day-in-the-life of a transitioning pancreas.

Altered

I've changed.  It has altered my senses, my thoughts, my heart.

Perhaps it has made me a better listener.  My ears perk up when I hear the beep from his glucometer.  I wonder what number will appear.  When the cabinet door is heard creaking open, I know a snack is being searched for.  When he is out playing in the neighborhood, I listen for the front door; for his return.  My ears always primed for the quick, brisk, quietly stated "I feel low".  It's not the actual words, it's how he says them, the tone and the speed in which they are delivered, that's how I know he will, indeed, be low.

My hearing, my listening, has improved.

Perhaps it has made my sense of touch more keen.  My fingers know the roughness of his calloused, blistering finger.  He has a favorite one to poke.  It becomes so calloused, it blisters, then it peels. Glucometers, lancing devices, and test strips, I know them all by touch.  They are felt for in the darkness of our nights; they help insure his safety.

Yes, my somatic senses have been put to the test.

Perhaps it has made me see things a bit more clearly.  The unsteadiness of his hands, the pallor of his skin, or the quiver of his lip, telling me he should check. While out and about, my eyes search for "same", looking for pump tubing poking out of pant pockets, or POD bumps, or glucometers.  Finding "same" makes me feel more normal; more typical.  It's comforting.

My eyes.  They don't miss much.

Perhaps my definition of hope has evolved over the years.  At first, I was reluctant to hope not wanting to feel disappointed.  More importantly, I wanted to protect him from it; the disappointment of wanting a cure, waiting for a cure, only to learn no cure will be found.  Now, I have hope.  I am hopeful for better treatments in his lifetime.  A cure, I am hopeful for that too.

I'm not afraid to show him hope.  I want him to have it.  

Perhaps, just perhaps, it has made me more aware.  The unfairness is not lost on me.  It's part of his everyday.  I know.

Finally.. there is....

My heart. I know it has made my heart stronger, as it has had to mend many breaks because of it.

The day-in-the-life has changed me. 

The Scotch Kind

I was only in the basement for 25 minutes, working out.

I came up to this..

An old POD site, oozing blood on our kitchen counters (makes you want to come over for dinner, doesn't it?).

I look over to Joe, who is manning the POD change.

Joe..'I couldn't find medical tape, so I just used the scotch kind.'

Nice.

A day-in-the life of a 12 year old boy with diabetes.

Normally Atypical

As he clambered through the front door, a brisk and soft spoken 'I feel low' swiftly left his lips.  He was 68.  It was dark.  It was an early evening hour.

Type 1 Looks Like Us

A few days ago..

An hour or so before the above mentioned clambering..

I entered the house after a run.

In the mudroom, I removed my shoes.  My eyes glanced to the shoe tray and then to the shoe bin.  His sneakers were nowhere to be seen.

I then look to the kitchen.  His glucometer, sugar, and Dexcom were scattered  across the  island counter.

I yelled out a 'Joe' to make sure.

No answer.

He was gone.  I was pretty sure he was a couple of streets over, at his friend's house.  He was most likely playing a competitive, physical game, outdoors.

I pushed it, him being gone without his supplies, out of my mind.
 
I sliced squash for roasting.  I emptied the dishwasher.  I puttered; waiting.

Finally, I could ignore it no longer...

I took a peek at the Dexcom.  The last bleep on the screen was 30 minutes prior.  He was 150.

In the past, I would have driven around the neighborhood in search of him.  I would have taken him his diabetes supplies.  I let it go  on this day; wanting him to feel a bit more typical;  wanting to feel a bit more normal myself.

A normal, atypical day-in-the-life.

Changing

The intake questions were directed to Joe.

Do you use Apidra in your pump?'

'Yes'

'Are you on any other medications?'

'No'

'Have you been to the hospital for diabetes since your last appointment?'

'Yes'

'Were you admitted?'

'No.'

'Have you had your flu shot'

'No, not yet.'

'When was your last dilated eye exam?'

Joe's eyes darted to me.  I answered.

A couple of days ago, we visited the Endocrinologist.  Joe's A1C was 7.1.  The usual things were discussed and assessed.  The unusual part of the visit was Joe was now an integral participant in the visit. 

More questions were directed to Joe, by the endocrinologist.

'How's the carbohydrate counting, the blood sugar checking, and the bolusing going?'

'I'm asking you these things, not because you are going to get in trouble, but because these are the things you  are in control of ...I don't want to recommend changes to your settings if you are missing boluses or if your carb counting is off.'

My mouth twitched.  I wanted to talk.  I didn't.  It's Joe's turn now.  He's 12. 

Joe responded, confirming he was good with the carb counting.  He is.  Joe responded, confirming he checks his blood sugar regularly.  He does.  Joe responded, admitting he forgets to bolus for afternoon snacks.  He has a few times over the past few months.

Overall, Joe is doing well.  The basal rates need adjusting.  Apparently I've kept him on little boy settings and need to boost them up to more "teenager-y" settings.

He's changed so much.

He's grown over 3 inches in the last several months.

His toes frequently grow out the front of his sneakers.

His face has thinned.

His legs have thickened.

His total daily insulin dose is now over 40 units; it used to be in the low teens.


As we drove away from the hospital, Joe asked if he could start to help me with adjusting his pump settings.  'I need to start being a part of that Mom... someday I'll need to do it on my own.'

A changing day-in-the-life.