#DAM Fall Back

#theoneeye 👁️

Many nights, that's all it requires; one eye. There's an internal 2-ish a.m. alarm in me. I wake. Eyes closed, I fumble for the phone on my nightstand. My right eye reluctantly opens. It scans the Dexcom app to make sure he is at an ok number.

The app will alarm if he goes below 70 or above 300. I don't have it on for other deviances, like if it loses signal or rapid drops and climbs...if I did, it would alarm all.the.time.

Last night was a good night to sleep. #thankful
#makediabetesvisible #t1d #needtotweakbasalrate

T1d people change time on your pumps! 🕑🔄

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#DAM Broom Closet Bolusing

While I admired his initiative, a broken insulin pump, mid-vacation, at 7:30pm, on a weekend is not a time for amateur hour.

This past summer...during vacation...while we were eating dinner with family...

Joe's pump failed. He excused himself from the dinner table to replace the pump. He's been independently changing pump sites since he was 9. So, when I heard the 'Mom, I need help!' yelled down the stairs, I was surprised 😳.

As I entered the bedroom, Joe gave me the lowdown. He apparently tried to change his pump, but the pump had malfunctioned, gave an error message requiring a call to the company. Joe apparently looked up the pump company's number on his phone. He called the pump company where he and the representative attempted to revive the pump to no avail. 😳 I guess it was at this point the pump company rep realized Joe was a minor...🙄

'Mom, you need to call them back...they need to talk to someone over 18 to ship out a new pump.' 😑
 
🤐(*#$ #@$& $@&#)🤐

The abbreviated version of what transpired after: I called Omnipod. Pump was broken. 😑 They overnighted one to us on vacation. Which was actually two days.. because late hour on a weekend day😢. Luckily (or maybe not) I brought a 9 year old, discontinued "back-up" pump. 😟 PROBLEM...pump LED light could only be barely seen in pitch-black broom closets🤬...and piston sounded bogged down (by sand?)😵. Anyways, I decide to go the shot route for basal insulin and plug him into pump for boluses. PROBLEM...we didn't have basal insulin. Called on-call MD for Lantus order. Ran to pharmacy to get Lantus and syringes. Next two days consisted of broom closet bolusing 🤓and a shot of Lantus.
 
#omnipod #animas #makediabetesvisible #t1d #travelingw/t1d

The Mirror

As we walked side-by-side through the parking garage into the hospital yesterday, his 6' frame towering over me...he said 'I don't really even think about having diabetes except on Endo days and sometimes when I have to check a number.'

'Really?'

'Yeah'

He then went onto say something that briefly caused my eyes to sting.  He said, 'it's weird, but when I look in the mirror...I don't see my POD anymore.  I don't see the CGM.  I just see me.' 

When Joe thinks of himself, he says diabetes doesn't even enter his definition of who he is.

The Endo appointment went well.  Joe continues to do the majority of his care.  He is an active high school freshman and manages to juggle school, being an athlete, and managing diabetes successfully.  His A1C was 7.  A fine number considering his growth and his independence.

He turns 15 at the end of April.  We discussed his drivers permit with his endocrinologist.  You see, driving with diabetes adds another element of risk to just the act of driving.  People with t1d need Medical Clearance Paperwork, in order to get their driver's permit or license.  When Joe starts to drive, he should check a blood glucose prior to driving and every hour if he is driving for more than an hour's time.  He should not drive unless his blood glucose is 90mg/dL, or higher.  Driving low is more dangerous than driving inebriated.

I'm not sure how I am doing with all of this.  Actually, that's a lie.  I do know how I've been doing.  I've been fairly anxious.  High school has been more of an adjustment for me...than for him; I think.  I have had to back off as a hands-on pancreas and trust that I have taught him well.  I have.  Can I just say, at this age, sometimes having that damn Dexcom is a blessing and a curse all in one.  Watching his blood sugar remotely can cause my mascara-fringed eyeballs to bulge outta their orbits when his number is tanking to the 40's, while he is at school or at a hockey practice.  There isn't a darn thing I can do to help him.  I watch.  I wait.  I worry, then I hope and I trust things will be OK.

A day-in-the-life update.

Life Support Fad

 A fad or trend or craze is any form of collective behavior that develops within a culture, a generation or social group and which impulse is followed enthusiastically by a group of people for a finite period of time.

More on track ...

I don't think about it much.  They are a part of him; his CGM and his pump.  When I see him, I see Joe.  The devices are a seamless blur on the backs of his arms.  They help keep him safe; alive.

I remember when he was three.  I remember when the choice was made to start him on the pump.  It was a mere three months after his diagnosis; maybe not even that long.  I struggled with that decision.  Between the meals and the snacks, between the needles and the blood, and between the monitoring and the carb counting... he looked typical.  There was nothing "visible" about the disease.  There were no reminders that he had a chronic condition.  He looked like his peers. Adding technology, adding devices changed that.

Joe has never felt the need to hide his diabetes.  He wears his pump and CGM where people may see them.  Sure he gets questions. Usually, he responds to them.  Sometimes, if he is focused on something else, he may divert the conversation elsewhere. 

Last week, while we were at the track meet where Joe learned about kidney-pancreas transplants...

I was timing with a group of parents.  Joe came over to me, to my purse, for money.  As he walked away, a parent commented on the "new fad".

Timing Lady: "What is this new fad?"

Me:  "What?"

I followed her line of vision, she was watching Joe walk away from us.

Timing Lady:  "I've seen a lot of kids wearing those, what are they?  ... on the back of his arms?"

Me:  "OH."  I then saw what she saw.  "My son is a diabetic.  That is his insulin pump and a continuous glucometer."

Timing Lady:  "I thought it was some new kind of accessory the kids were wearing on their arms."

Nah,  just life support.

The "craze" of sporting some life support in his day-in-the-life.

The Toe Is A No Go

Perhaps I shoulda warned him before doing it.

Maybe a little heads-up woulda been the appropriate thing to do?

I'm not sure what good toe poking etiquette entails.  In hind sight, initializing a toe-poking-protocol on a sleeping subject is probably not the proper procedure.

Yesterday morning around 6:57-ish, the house was still sleeping; well everyone, but me.  I was headed out for my morning run.  Joe's Dexcom was showing a 67 and diagonal-downing.  A check was warranted on the sleeping Joe.

I entered his room and readied the glucometer with the test strip.  While wielding the lancing device, I assessed the target situation.  Joe was dead asleep with both hands tucked under his head, making his finger tips unavailable.  I noted his toes, peeking out from under his blanket, were easily accessible.

Pry fingers from under his head...wake him up?

Poke toe...maybe he sleeps?

Fingers?

Toes?

Welp, I haven't tried to poke his toes since he was like 4.  Let's just say I tried to yesterday morning...and... he did not sleep through it and as his leg briskly recoiled, he might have said something like "for the love of all that is good and holy..!" (but with different nouns and verbs).

I wanted him to sleep in.  He's growing.  He's tired.  He was up late the previous night.  He's up, due to diabetes nonsense, more often than not these days.  Note to self:  poking his toes will not help him sleep in.

I then poked the kinda-awake-and-kinda-annoyed-Joe's finger. A 99 was obtained.  The basal rate was decreased by 40% x 1 hour.  I ran.  Once I arrived home, a smooth 122 graced the Dexcom screen.

Waking Joe, via the toe, while simply trying to manage the day-in-the-life.

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.

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 In-Between Place

11:58pm last night...on the heels of the news of another child lost, at the age of 13, to Type 1 Diabetes...

I hear it.  Is it part of my dream?  As I lay there in some sort of state between wake and sleep, I try to figure it out.  The sound.  What is it?  Then it stops.  My mind rests.  I slip back into sleep.

It starts again.  I hear it.  My body and mind struggle with the sound; having a difficult time placing it.

Some nights it seems that Joe's Dexcom can alarm for a good hour before I wake enough to identify it.  There are hours of my nights that are spent in that "middle" place...not awake...not sleeping...in a cloudy haze.  Too tired to wake.  Too awake to sleep.  If that makes any sense what-so-ever.

Finally, I placed the sound.  Shit.  It is Dexter.

"LOW" is on the screen.  The "Under 55 Low" alarm.

I kinda lay beside Joe, as I ready the glucometer...eyes half-focused...so tired...cannot really tell if he is breathing...he is not really moving...or responding to my touch as I handle his finger for lancing.  Good.  The blood comes quick after the poke.  A sign of life. 

The blood is wicked up the test strip.  The glucometer counts down 5~4~3~2~1.  A 105 graces the screen.

I shutdown Dexter.  His accuracy has been off with this sensor.

I leave my 3:00am alarm set.  The 105 bears watching.

A day-in-the-life of my nights watching over Joe. 

KinKy In The Car

5:50a.m. this morning...Dexter was donging-off for "LOW", Joe was actually 223.  I corrected and planned on changing Joe's site when he woke.  It had been in since Monday (that is a long time, I usually change him out every two to three days).  I also made a mental note to rip out Dexter.  He was dead to me. Liar.

About an hour later, still wearing his clothes from yesterday, jeans and a long sleeve tee, he was snuggled in his bed with our Miniature Schnauzers.

"How was your sleep bud?"

"Great, I am just giving these little cuties a tummie rub." His face was buried in Oscar and Henry fur.  (See, I just call him a "troll"...he is a pretty darn good kid with a kind heart)

"Look it, you cannot go to school in the same clothes your wore yesterday and last night...change and come down stairs for a new site."

He changed.  New site was done.  Dexter was ripped out.  Pre-breakfast number was 189.

He ate 54 grams worth of wheat toast smeared in butter, peanut butter, and honey.  He was bolused.

Off to school he went.

9:30-ish a.m. The School Nurse calls.  Joe was in the 400s, washed his hands...rechecked, he was 388.  I tell her about the new site and that if his pre-lunch number is over 250 to check for ketones and to call me.  The site may be bad. 

12:00-ish p.m. Yep.  You.Guessed.It.  The School Nurse was calling to let me know that Joe was 468 with moderate ketones. "OK.  I'll be right over.  He needs a site change."  I shove my partially consumed salad in the fridge.  I don't want Joe to miss out on much of his lunch-time and am dreading the "recess" plan.  He should not be running around ketotic.  This was not gonna go over well with a 400+ Joe.

As I pulled into the school, the front of the school, Joe ran out to greet me.  Apparently, we are back to doing school~site~changes in my vehicle.  He plopped in the front of the car...upper body in the drivers seat...butt up over the console-y thing...I was in the passenger side with Joe's legs.  He wanted the door shut.  Fine, I crammed myself in and shut it.  The bad site was removed.  The new site inserted without issue.  I could not find the IV 3000 that I had placed in the car for the site change.  I was trying to hurry ... I grumbled at Joe about the ridiculous position he and I were in...in the car...and could he see if the IV 3000 was under his hands in the driver's seat.  As I grumbled at him, he grumbled at me..."Diabetes is ruining my lunch and recess...." 

KINKED SITE

IV 3000 was found, under my butt.  I slapped it on Joe's butt.   (the IV 3000 keeps Joe's sites situated and allow Joe to be the ever-loving...always-moving Joe that we know and love).   Joe then got his shorts situated.  We hugged; both of us knowing and needing to convey to one another that none of this is our "fault". Diabetes was being a turd today.  Period.
 
The lunch bolus was gargantuan.  I gave 2/3 of the correction and a full carb bolus.  I have learned that bad sites followed by good sites...can drop Joe quickly...thus the 2/3 correction.

I've got the mechanics down.  The numbers, the boluses, they don't make me second guess myself often.  It is here, with the recess issue, that I struggled.  Moderate ketones...huge bolus...and recess...are not a good combination.  I knew that this was not going to go over well with Joe.  The School Nurse offered some fun hang-out-in-the-Health-Office-time with a good buddy of his choosing.

Nope.  This did not sound like a good deal to Joe.  He did not whine or complain.  He was, however, firm.

Me:  "Joe, do you think you could do recess without running?"

Joe:  "I just wanna do the bars...back flips."

Not really back flips...but going backwards around the bars...he has been learning tricks from the girls.

Me:  "OK...the bars ONLY."

Joe:  "How about swinging and the Gyro?"

Me:  "Fine. Swinging, NO Gyro." (Swinging seemed harmless...just some leg pumping...no to the Gyro because it is kind of high off the ground ~shoot...just realized the swing is high off the ground as he pendulates... back to the Gyro.... he has to hold on for dear life and it spins...it just seemed like a good idea to have denied it, as he hopefully euglycemi-tizes (a word?).

So, I am left here second guessing the activity and the ketones.  If they were HIGH, I would have said "NO" to recess.  Moderate...with known cause...I "modified" recess.  What do you guys do?

Our kinky day-in-the-life.

"Same-Same" At 70mph...

I think this was the first wedding ceremony that I actually enjoyed a beverage, an alcoholic one at that, while spectating.  Tara and I clinked bottles, as we waited for Chloe, Bridget, and Joe to escort Mom down the aisle.  My mom got married at my sister's lake house this weekend.  Congrats Mom!

Yesterday....

As we were driving home from Connecticut...where the ceremony took place....

I was zoning out in the front passenger seat, as Dave drove.  Then I saw it.  A Connecticut license plate had the letters "D" "I" "B" "E" "T" "E" "S".  No, that could not be.  I wondered if the "DIBETES" was short for "DIABETES".  My answer quickly flashed by before I had time to verbalize all that had been going down on my side of the car with the license plate and my curiosity.  My answer was in the form of an arm site...a CGM?.  I caught a glimpse of it as Dave whizzed by the young adult female.

"Dave!!!  I gotta get by that car again." I think I was kinda excited.

"She has a license plate that says D-I-B-E-T-E-S...and she has diabetes!!!"

"She has an arm site of sorts."

" I think it was a Dexcom."

I desperately wanted to share some sort of "uniting" moment with this woman.  So, I talked Dave into slowing up and positioning the car so that I may "interact" with her on some level while we careen down the highway.  My idea was to wave some sort of diabetes paraphernalia out the window.  Bridget was horrified.  Joe did not even know what was going down as he was head-phoned and engrossed in The Princess Bride.

Dave maneuvered us in and out of traffic.  He slowed.  He weaved.  He got us over to the right lane.  She, "DIBETES License Plate Lady", was in the middle lane.  She passed us.  Dave then crossed the middle lane and got us into position in the left lane.  He stepped on it.  I rolled down my window.  I had Joe's Dexcom receiver in my hand.  I was waving it out the window ... kinda fist pumping it in the air ... at "DIBETES License Plate Lady".  I think I was screaming "WOHOOOOOOOOOO!!!" or something.  She and the passenger, another young adult female, took notice of me and responded in like with multiple fist pumps, while "Wohoooooooo-ing".  Huge grins were gracing our faces.

Upon closer inspection, her arm site was a pump site.  It looked "Medtronic-y".

A day-in-the-life of wanting to express "same-same" at 70 mph.