Sub Flub

"Did it bother you?"

"No mom, I was OK with it..  ..  It really wasn't a big deal."

A couple of afternoons ago...

Joe was sharing about his school day.  He had a substitute teacher in one of his classes.  His Dexcom started donging off "Meep-Meep-Meep style" indicating a low I presume, from the history of numbers.

One of Joe's classmates started teasing Joe...stating he should put his "cell phone" away.  The students were trying to rattle the sub, not tease Joe per-se.  Another Meep-Meep-Meep and from the sounds of it, the substitute teacher was not impressed with Joe and his ding-donging cell phone.  She asked Joe to put his cell phone away promptly or she would be referring him to the Principal's office. 

 Joe then took a deep breath and went into the abbreviated version of he has type 1 diabetes and the ringing noise was from his continuous glucometer called a Dexcom.  Joe said the substitute then apologized and he added she was quite nice.

This is the third time something like this has happened this year.

I admired Joe's willingness to openly explain his medical condition and the technology that accompanies it in front of his peers to the substitute teacher.  He didn't appear to be too bothered by it.  To him it's part of it, of having t1d, the explaining himself.  Frankly, he knows no differently.

He will be put in this position where he needs to explain himself; to stand up for himself; to advocate for himself.  I think that is part of life for all of us.  Society does not need to handle Joe with kid gloves.  Friends, family, and strangers should feel comfortable to ask questions in a respectful manner.  I suppose... I guess what kinda bothered me about this situation for Joe is it was a potentially embarrassing scenario he was left to deal with, on his own, during the already awkward-y place called Middle School.  Not.Too.Cool.

I figured if I could lessen the frequency of events like this it was worth a try.  So, I emailed Joe's school nurse and requested the teachers add a note about his CGM to their sub binders.

Trying to save him a little bit of explaining about his day-in-the-life.

Oh YAY! A First!

In all our years in dealing with diabetes, we haven't encountered this one yet.  I knew we were due.  I knew someday it would happen.

Yesterday...

"I cannot believe I have to use ... th..i...s."

Joe spoke about it like it was a dirty dish rag.  He was disgusted by it.  Between the process of manually entering in a BG and the fact that his arm was tethered to it with "little-boy" lengthed tubing, he felt it was archaic.  

To hear him talk about an Animas pump so negatively made me feel like I was listening to gossip about my BFF.  I let him know the Animas pump was the only pump I was comfortable placing him on when he was a 3 year old.  I let him know those little, ity-bity basals of 0.025units/hr gave me peace of mind.  I let him know I did not like him talking about our first pump in this manner.  

 

 

So ... as you may be gathering by now... Joe's Omnipod pump failed yesterday afternoon.  As in failed, I mean it had a PDM alarm, I reset it, and it went into some sort of death spiral; the screen transitioned from the happy blue/green/white "Omnipod" screen -> then to an all white poltergeist-y-like screen -> and then to an all black screen.  A phone call was made.  Customer support confirmed my hunch, the PDM was a goner; a new PDM would be over-nighted.

Joe was horrified over the re-setting procedure.  He could not believe the proper procedure was to stick a paper-clip (or equivalent) end into the little hole at the bottom of the battery compartment. 

"What kind of a re-set plan is that, just to poke something around in that hole?"

"I didn't make the pump Joe, I don't know."

"OK".  

Meanwhile... an hour before hockey practice, at dinner time, I've got a 300 and double-arrow-upping Joe, who is no longer hooked-up to insulin.  We had to get a back-up diabetes plan initiated ASAP. Good times.  At first he was dead set against the Animas pump (an old one I've held onto), but shots did not seem to be acceptable either.  

After weighing his options, he decided to pump. He would only place a site in his arm; the only place he uses the PODs, as well.  Unfortunately, the length of tubing was from when he was like a 3,4,5,6,7,8, and 9 year old.  So,  with his pump in a pant pocket..and the site in his arm.. his arm is kinda limited in maneuverability.  This was not even close to optimal in Joe's eyes, but it's only for one day, he conceded.

He's been disconnecting for any sort of physical activity, you know...so he can like ... ah ...  use his arm.  

I did end up at his school today.  The pump lost prime; he disconnected and proceeded to prime out the entire cartridge of insulin; Right.Before.Lunch.  There was a sub-nurse at his school.  He was not about to let her inject insulin and he's never done it.  So he held off on lunch for an hour and waited for me to arrive to get his pump situated.

"My day was going good until this issue."

"What makes it so bad now?"

"I guess nothing.  You're right Mom, this didn't ruin my day ... but it is annoying."

 

Very true.  It's annoying Joe.  

 

It's right now 7pm the following day.  I guess overnight doesn't really mean overnight.  We don't have a new PDM here.  We leave for Quebec City at 6am on Friday for a hockey tournament.  I sure hope the PDM makes it by then.

 

A day-in-the-life of missing our Omnipod.

 

 

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.

Sled Dread

Driving away my thoughts were many:  1) a low Joe slumped and crumpled on a cold, icy snow bank at the bottom of the sled hill, 2) a lost Woodchuck (the diabetes bag that houses sugar and Joe's pump) in the dark woods, 3) guilt over our current typical mother-teen power struggles, and 4)  fear of something happening to him, like an untimely death, and our last conversation was me nagging him...

 

Many of the thoughts are typical of most parents I suppose; except for the low part and the Woodchuck part.

Yesterday...

I dropped off Joe to go sledding with his friends.  The drop-off was about 5 minutes away from our home.  It was dusk, soon to be dark.  Joe has a history of extreme lows in the cold, while sledding.  He's almost 13 now.  He wanted to sled alone with his peers.  I got it.  

I had him check his blood sugar in the car, on our way to the sled hill.  It was 130-something.  I asked him if he'd bolused insulin recently.  He had bolused for a snack 10 minutes prior.  I had him eat 12 Skittles.  During this interaction my instructions were short, my voice monotone.  My mind was on other, more "big picture", parenting issues.  Issues like wanting Joe to value his education, limiting screen time, and limiting access to processed foods.  The diabetes seemed benign in comparison.

It seemed benign, until I left him with a bunch of other teenagers, in the cold, in the dark.  Then it hit.  "It" being, it is not benign.  This thing that becomes so normal and manageable isn't so normal and, at times, is anything but manageable.  Blood sugar control is a daily, hourly, and at times minute-to-minute threat to Joe's well being.  I forget this, until I am forced to let him grow up, yet, a little bit more.

As I dropped him off at that sled hill, I left feeling uneasy.  Blood sugar is like "air" in a sense.  He needs enough sugar in his blood to make sound decisions,  to function at full capacity mentally and physically, to be conscious, and, yes, essentially to be alive.  Unfortunately, sugar is not just floating around and utilized as automatically and innately as air is. The sugar needs to be available and Joe needs to be aware of when he needs to consume the sugar.  Hopefully there is a sugar source available when Joe needs it. Hopefully, he listens to his body and stops and takes the sugar right when he feels low.  Hopefully, he doesn't let the low go too long to the point where he is unable to help himself. He's a teenage boy with one of the most high maintenance chronic conditions. It's all kinda damn scary.

An 8 year ago photo.  A 5 year old Joe. 

Anyway.  Back to the sledding.

I arrived to pick him up an hour later.  Joe was waiting for me in the front of his friend's house.  He hopped in the car.  

"Thanks mom...for bringing me..for letting me.  I had fun."

"I'm glad Bud."

A stable 158 graced the glucometer screen when we got home.

A glimpse of the anxiety in my day-in-the-life, as Joe's autonomy progresses.

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.