#DAM The 9 Lives of Joe

I have many fears re: Joe and diabetes. One of them is he goes into an empty locker room while low. I worry he'll lose consciousness and no one will find him for awhile.

A week, or so, ago...

At the end of hockey practice, Joe headed into the locker room. His Dexcom picked up his signal. The CGM app alarmed 43 and arrow diagonal down.

I sat on a bench in the rink's warm room, my eyes glued to the locker room door ....hoping, wishing I'd see him any moment ..how long should I wait? Another 2, 4, 5 minutes? Then what? Send in some random guy to see if he's still conscious?

😩*Joe would KILL me* 😬

So, I waited some more. Then, finally, I saw him lumbering out of the locker room. My heart.

#makediabetesvisable #t1d

...On A Stick

As he stumbled to the pantry  for a juice box, an  'I feel like a butt cheek on a stick' was heard.

'What's your number?'

'38'

A teenage boy's description of a low in the day-in-the-life.

Chromebook Confiscation

NOTE: Joe does not have a Chromebook Confiscation history.

I knew, over the years, we'd run into difficulties of not being understood.  Sure.  We all deal with that in our day-in-the-life.  I guess I didn't think I'd be saying things like this to an educator:  'Not only is his access to his school day limited by treating and waiting out lows, but to take away his Chromebook for the remainder of the school day, because of his medical condition... limits his access further.'  My voice was measured.  My temper in check. 

The blood sugar checking, the carb counting, and the insulin dosing are one thing.  Sure, at times, the numbers cause physical discomfort.  Yes, the management, the needles hurt.  The thing about diabetes is... the actual disease and the management are so enmeshed and interconnected throughout our days and our nights that it is impacted by just about everything;  also, it impacts just about everything.    

About a month ago...

Joe experienced a school day riddled with lows; blood sugars hovered from the 50's to the 70's.  He spent some time in the Health Office, but for the most part he remained in the classroom.  At one point in his day, he left his Chromebook in a hallway.  He forgot it as he was dealing with another low.  The Chromebook was confiscated for the remainder of the school day.  It was confiscated because it was unattended.

At the end of the school day, Joe visited the Chromebook Confiscator and let him know he had a medical issue that caused the infraction leading to the "confiscation".  The Chromebook Confiscator made Joe promise it would not happen again.  Joe promised.  His Chromebook was given back to him.

Within a week's time...a week where lows were plaguing his days and nights...again, the Chromebook was confiscated by the Chromebook Confiscator.  Joe went to gym class.  He placed his binder and his Chromebook on a bench in the locker room; not in his locker like the students have been instructed to do.  You see, he was nervous about going low during gym.  The shakiness of his hands make maneuvering a combination lock challenging; making access to his belongings quite difficult.  Even if a low was treated, it could take 15 to 20 minutes for him to feel better, for the shakiness to subside.  Joe did end up low.  His Chromebook, gone from the locker room bench...taken away for the rest of the school day.

So, it is at this point... at Chromebook Confiscation #2 that I stepped in.  Joe needed an advocate.  He was missing class due to managing low blood sugars AND the only mechanism to access his work electronically, at school, was being taken away from him.  It was being taken away from him because of diabetes, none-the-less.  

I spoke with the Chromebook Confiscator.  I explained Joe's medical condition.  I explained how low blood sugars can impact executive functioning.  I explained when he feels low, he needs to treat the low promptly.  The Chromebook Confiscator's solution was when Joe feels low, he could walk his Chromebook to his locker and then treat the low.  Tears, while not yet visible, could be heard in my voice.  'You aren't understanding me.  He should not have extra steps added into his routine when he feels low.  He needs to treat the low...not walk to a locker...unlock a locker...and place his Chromebook in the locker.'  

So, then the Chromebook Confiscator proposed, Joe not even have a Chromebook.  He proposed a desktop be provided for Joe in each classroom he attends: Math, Social Studies, Spanish, English, Science...I explained firmly, this was not an option.  Not only was the proposal just plain wrong, but hey...let's make Joe feel even MORE different... he has a pump, a CGM, sees the nurse multiple times daily...oh and let's add ... there's the kid who has to use the desktop computer in FIVE different classrooms.  Awesome.  Ugh. The conversation left me feeling alone, misunderstood, and questioning myself.  Am I asking too much?  Am I over-complicating things?  It also left me feeling a bit sorry for Joe and for myself.  Why can't things just be easy?  This life, of managing t1d, is difficult enough.

In the end, Joe's School Nurse and the Principal met.  A sticker was placed on Joe's Chromebook that states something like "If found, return to the Nurse."  

The Chromebook Confiscator disrupting our day-in-the-life.

'

Night Shift

At least he piled up the juice boxes neatly.

The above is the scene that greeted me, as I went in to wake him a few weeks ago.

'Joe, the juices are not for snacking on.'

'I was low in the middle of the night.'

'Three times?!'

'Yes.'

Over the years, people have asked me ... 'When will Joe start taking care of his diabetes during the night?'  These people are well intentioned.  I've been pretty adamant that Joe sleep when he can.  Diabetes keeps him up enough.  He wakes, at times, when he is poked.  He wakes, at times, when I am cramming a juice straw into his mouth.  He wakes, at times, to the beeps from a pump failure.

He is a growing teenager.   His energies should be focused on school, sports, friends, video games....and other teenager-y things.  He needs his sleep for typical growth and development.  I have slept with the CGM by my bedside, nightly, for years.  It alarms, I wake, I take care of what needs taking care of.

On the three-juice-low-night, Dave checked Joe prior to bed ... and accidentally left the CGM in Joe's room.  While I found it reassuring that the alarm woke the sleeps-like-the-dead-Joe, I will still cover the night shift.  I know, one day ... soon enough, he will need to manage that, as well.  For now, it will continue to be me.

More on on our day-in-the-life of nights.

School Nurse Call

At about 3pm, the end of the school day, a few days ago...  I received a call from Joe's school nurse.  She notified me of a recent low; he treated.  He left school without re-checking his blood glucose; he didn't want to miss his ride home.

'Ok...so your telling me to call him and make sure he makes it home alive (laughter) ... and if he doesn't, I won't hold you responsible.'  Laughter closed the conversation between Joe's school nurse and I.

These are the things you say, cuz they are kinda true.  He's meandering the community, alone...sometimes low.  At times, I just gotta have blind faith that he'll be alright.  He knows what to do.  I have taught him well. And.  I also realize..there could be times, he may not be ok.  There are no guarantees with anything in this life; certainly not with t1d.

I called him.

'You ok?'

'Yeah.  I'm 120s.  I didn't want to miss my ride..'

Conversations with the school nurse while dealing with the day-in-the-life.

Some Work Is Better Than No Work

Over the past couple of months, things had been relatively stable in the diabetes department around here.  Blood sugars had been within range for the most part; pump settings stagnant.

Lows are now plaguing our days and nights.  Lows are seeping into Joe's school days.

This morning, as we hopped into the car for his 6:45 a.m. high jump practice...

"I backed off your breakfast ratio...hopefully you won't go low this morning."

"mm"

"Are you missing a lot of class ... with all these lows?"

"No.  I just go back to class after I treat."

"Don't you worry about not doing your best work?"

"The way I figure it, some work is better than no work."

I didn't want to point out the time his science notebook was marked as incomplete, due to a week of lows and his going-back-to-class-low-plan lead to things not being glued into place, because in his hypoglycemic state...he "forgot" to use glue.  In elementary school and on up through 5th grade, Joe would stay in the Health Office until his low came up.  This go-back-to-class-low is somewhat new territory for us. 

I realize at some point in his life, maybe it's now, he should carry-on if he feels OK.  Life doesn't just stop and stand still during those 15, or more, minutes it takes to get back to euglycemia.

 

The day-in-the-life continues no matter what number he is.

A-low-n

As I pulled up, he was sitting on his friend's driveway.  His shoes were off.  He was alone.  He looked pale.

There are times I'm not sure what to expect.  Sure, experience has given me some ideas.  He may be pasty white and shaking.  He may be curled up in a ball, moaning and mumbling, as he deals with the low.  Or...he may be sprawled out like a 5'6" over-cooked, linguini.  These thoughts went through my thought feed yesterday, after I read the text.  The text stated he was not doing well.  

 

I knew before I left for my run, he did not have his supplies; his sugar. Sometimes, I like to give him a break from the reminding; the nagging. 

Luckily, his friend stuffed him with Fruit Gushers and Short Bread cookies.  Joe then went out to the driveway to sit and wait for my arrival. Alone.

"Joe, why didn't you stay with your friends?"

"I just wanted to wait.."  I think he wanted to wait out the low; perhaps in private.

"You should have stayed with people."

"I knew if I passed out you'd come soon .. and find me."

He was 39.

Alone in his day-in-the-life.

Eggs-cellent Idea

"I think I'll take a break from decorating..."

He was low.  Like, 50's low.  His demeanor was calm.  This low was not a big deal.  He recognized and verbalized shaky hands and trying to draw on eggs was a frustrating combo.

Living the day-in-the-life with sound judgment.

#lowprobs

He Needed A Little "Back Up"

One of the main reasons I write is so others living with t1d feel a little less alone.  While my stories are short, little vignettes of sorts, I hope you get a glimpse of the victories and challenges we face.  Not all stories necessarily reflect us in a positive light.  This is real.  Diabetes has not only impacted Joe's life, or my life, or Dave's life...but it, at times, impacts Bridget's, as well.

A couple of hours ... ago..

I was reading.  I was reading upstairs in my room.  I think I maybe heard some kind of mumble-y call or muffled yell, but I thought it was Bridget and Joe talking about a show they were watching downstairs.  I did not pay the noise much attention.  How long it went on for?  I'm not sure.

Finally...

A very clear "Mom! Dad!  I need help."  And then something was yelled like "23".  My middle-aged brain then put it all together.  Joe is calling for help, he is low, and his number is 23.

As I came downstairs, the scene is set with a sprawled out on the couch Joe, who has a fist-full of Skittles held to his mouth.  He cannot eat them fast enough.  Bridget is curled up on the other couch, the scene is rank with sibling turbulence. Apparently Bridget told Joe to "be quiet", during his multiple calls for help.  This has Joe up in arms, but he was unable to expand on the situation, due the the low treatment of trying to chew and swallow like 20+ Skittles all in one mouthful; not an easy feat.

Once Joe swallowed the masticated Skittles, the sibling conflict continued.  He was quite upset Bridget told him to be quiet, when he was calling for some help; for some, as he put it - "backup".  I expressed some concern over her lack of reaction and compassion.  She left the room.

Joe was shaking.  Joe was hot.  I've never seen him have a low where he felt warm or hot.  The discomfort was motivating enough that he silently made his way to the freezer for peas.  He then sprawled back out on the couch and plopped the bag of frozen peas on his forehead.

I made sure he was OK.  I then went to seek out Bridget.  She was upset with me; with Joe.  She has lived with diabetes in the household for all these 9+ years along with Dave, Joe, and I.  She knows lows are dangerous.  She knows he needs sugar.  She explained her side of the scenario to me ... Joe had his sugar and he had called for help multiple times.  She could hear my footsteps as I was making my way down the stairs; she knew help was coming.  She did not see the need to "do" anything at that point in time.  She did feel it was time for him to keep quiet so she could focus on her show, Grey's Anatomy.  Keep in mind she's a high school student and athlete.  She goes to school full time and practices and performs 6 days/week; she does not get much down-time.  

Diabetes is difficult.  Not always.  Sometimes we are smooth sailing over here and I kinda forget we are dealing with it.  There are times, however, it's not easy for any of us... especially when we are just trying to enjoy a relaxing moment.  I get it Bridget.

Honesty about t1d in our day-in-the-life.

Sleep Drinking Talking

Last night...Or shall I say this morning at 1:37am-ish...

I'm doing the one-eye, half asleep, orange-juice-dispensing-via-a-straw-maneuver to a sleeping Joe.  He sleeps during night sugar dispensing.  He chews and drinks in his sleep.  Frankly, I kinda sleep through it too.  Sure, I wake up to the donging off of the Dexcom's alerts, and yes I plod to his room in the darkness of the night, and yup I lance and squeeze his fingers for some blood to test, and of course I then grab some sort of sugar to "boost"  him up. 

I do it all with one-eye partially open; the effect is a sense of doing it all while I'm sleeping, but I'm not...but...I am...but, I'm not. 

Back to last night.

I was holding the straw to his lips.  He sleep drank (like sleep walking, but drinking) and I was nodding off as I balanced the juice and the straw.  All of a sudden, a sleepily, soft "Happy New Year, Mom." startled me from my slumber.  Joe continued to sip and talk with the straw positioned at the side of his mouth.

"Happy New Year, Bud."

"Mom..."  (still sleepily drinking juice, as I'm still sleepily dispensing it) "when does the President take office?"

Juice is gone.  I'm not gonna talk politics with him at 1:40am-ish in the morning.

"Goodnight, Joe."

Our day-in-the life, even on New Years!  Happy 2016.

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.

The Use Of the CAPS LOCK Comforted Me

Facilitating independence with diabetes management in the pre-teen years is causing me much anxiety.

Joe was at an overnight hockey camp last weekend.  Camp involved multiple on-ice sessions, a water park visit, and foods Joe does not typically eat.  He spent the night in a condo with 4 of his hockey peers and a "condo" (chaperone) dad.  I stayed in a hotel close by.  I slumbered with my phone in my hand and a watchful eye on the Dexcom Share.

Here is a texting sequence that went down on the first night of camp.  His ability to use the CAPS LOCK button was comforting.

Heart pounding and mind racing...I threw on my clothes, ran through the hotel, ran to my car, drove to the condo and found Joe sprawled out on a bed, surrounded by his peers and the "condo" dad.  My eyes stung with tears.

A vulnerable day-in-the-life.