There's a New Woodchuck in Town

As many of you long time followers know, we have used the Eli Lilly bag to house Joe's diabetes supplies over the years.  This bag has been affectionately called "Woodchuck".  Why name it?  You may ask.  Well, would you rather yell "get the diabetes supply bag!"  (three words and boring) OR would you rather yell "get Woodchuck!" (one word and much more interesting and dramatic). 

Anyways...

The old Woodchuck was getting a little haggard.

He was dirty.

He has gotten small; well our supplies have gotten larger.  Since upgrading the PDM case to a Sugar Medical,  zipping up the Woodchuck reminds me of  my post-adolescent self, laying on my bed, sucking in my abdomen, trying to zip up my two-sizes-too-small Jordache Jeans. 

So.. it was time to invest in a new bag.

Let me introduce you to the new Woodchuck (Woodchuck # like 8 or 9...I've lost track)..

His exterior is gray and black.  He's like 9"X11"X3"

His interior.  We can fit in all our day-in-the-life needs.

I found this bag on Amazon.  It's from ChillMed.  I have personal experience with this bag, as well.  As a school nurse, I like the clear pouch for placing documents explaining emergency plans and plans for a lockdown situation.  Hopefully, it will be durable for Joe.

A day-in-the-life of chucking the old Woodchuck.

Uh...Yeah...

In the hot tub, last night...

Dave and I were talking about Joe's Dexcom.  We are currently waiting for a new receiver, as our last one has lost it's volume.  It seems it is plenty loud to alert for a high, but is barely buzzing for a low.  When our Dexcom has adequate volume, Dave and I will take turns manning it at night.  When I man the CGM, it alarms ... I eventually wake up ... I deal with the alarmed for issue.  When Dave mans the CGM, it alarms ... I eventually wake up ... I kick Dave ... he wakes up ... and deals with the issue.

Again..back to last night...

We were talking about Dexcom-low-volume problem.

Dave:  "It's too bad it doesn't have a different tone for a high and a low."  My eyes kinda go all bug eyed and I then kind of give him the side-eye.

Me:  "Uh...it does."

Dave:  "It does?" in a surprised voice.  Meanwhile, imaginary fiery hot pokers being ever so slowly jabbed into my eye balls.

Me:  "It has for the whole 7 years he's been wearing it.  Seriously?"

Me:  "In fact, there are three different alarms: a high, a low, and a really low (below 55) alarm."

What I'm dealing with in managing the day-in-the-life.

1:37 am

In the fog of my blissful sleep, I hear something.  It's important.  I recognize that as I slumber.  I try to remain asleep, but my mind searches for the implications of the sound.

It's 1:37 am.

My subconscious knows to to be on "high alert".  Joe just participated in a power skating camp this evening...with a failed site...which resulted in a HIGH blood sugar... which required a new pump site...and a correction dose of insulin.  This may, or may not, end up with unstable blood glucose readings.

Unfortunately for me and more importantly Joe, this will be a rough diabetes night.

It's 1:37 am.  My mind and my body wake from the alarm.  Joe is low.  It's the "MEMMMP...MEMMP...MEMMP!! - Your kid is super friggen low...low alarm".  I'm still a little dazed from my slumber.  I catalogue the day.  The power skating, the site change, the correction are recollected.  This could be bad. 

I stumble into his room.  I'm tired.

I ready his glucometer with the test strip.  I lance his finger, as he sleeps.  The blood is wicked up the test strip.  He is 40.

I turn off his insulin pump for 2 hours.  Four glucose tablets are grabbed from the supply kept in his room for exactly this; our nights.  I didn't even need to coax him to chew the tablets.  In his sleep, he chomps on each tablet.  They are each consumed in short order.  His body knows ... it needs them to survive.

I plod back to my bed.  I lay down.  I know I won't sleep; he is too low for that.  I'll need to know he is OK.  40 is nowhere near "OK" when he sleeps.

I start on my left, turned away from my night stand where the CGM resides.  Eventually, I turn to the right.  I take a peek.  He's only 45, smooth.  I wait.  I turn.  It's about 2 am.  I turn.  50 smooth.  Still, I wait.  I know it will turn around.  I just need to wait a bit longer.  Just a little longer until I'll feel OK.  Just a little longer until I'll feel he'll be OK.  Just a little longer until I can go back to sleep again.  Back and forth I go, peeking at his number.  At 2:17, or so, 63...diagonal up.  The next time I check he's 115 ...diagonal up.

But, is he truly alright?

I need to check on him to be able to sleep.  I prop myself out of my bed.  I plod back into his room.  I want to check his pulse.  Weird, I know.  If it's his carotid (on his neck) it may wake him.  I take his wrist in my hand.  I feel a strong, steady radial pulse.

Finally, I can go back to sleep.

A glimpse of a rough night in the day-in-the-life of parenting my child who has t1d.

He's Resilient

Perhaps one of the most difficult things to explain to persons not intimately familiar with t1d is the unpredictability of our day-in-the-life.

This week...

Joe participated in a power skating camp.  The camp was two hours long.  It took place from 6:50 to 8:50 pm.  Now, this is one of those experiences where I might choose fiery hot pokers to be jabbed into each eyeball over the the planning, the anxiety, and the blood sugar carnage the camp could potentially cause.

The management of d' went something to the tune of reducing the basal rate by 80% for 3 hours; this was initiated an hour and a half prior to camp.  Joe would eat two peanut butter and honey sandwiches (100 grams CHO) with no coverage prior to camp.  Additionally, two Gatorades (60-ish grams CHO) were consumed during the camp.  I would drop Joe off at the rink.  He would get on his hockey gear to skate.  Meanwhile, I'd run an errand.  Afterwards, I'd drop by the rink to check on Joe; to check on his blood glucose.  Then I'd drive home; a 20 minute drive.

The first three days of camp went smoothly.  Blood glucose levels stayed between 120 to the mid 200s during and after camp.  Then last night happened.  I left Joe at the rink with Dexcom reading "High" (just over 250).  When I arrived home...

We've spent so much time on lows... teaching about lows, avoiding lows, treating lows, not being alone during lows, etc.  Highs are there.  Sure.  But, they don't typically pose imminent danger.  Joe wasn't feeling well at all with his blood sugar level at 471.  I think what happened was his site was failing.  The uncovered carbs, the decreased basal rate on a POD that was in the process of failing, well...I think that is what must have lead to the high.  When Dave arrived to the rink, this is what he saw...

Joe on the ice, trying his best to finish out his camp.  He's the skater closest to the camera; the one in the white jersey.  With his high and probable ketones he should have sat out.  I admire his "try". 

When he arrived home he was "HIGH".  His site was changed.  About 75% of a correction was given.  His blood sugar proceeded to go down to 40 within a couple of hours.  The basal rate was turned off, sugar was dispensed to a sleeping Joe... who then woke up about 15 minutes later due to the discomfort caused by the hypoglycemia.  This occurred around 2 am. 

Managing t1d is unpredictable.  Yes, there are days or even weeks where it seamlessly folds into our days and nights; this wasn't one of those weeks.  While I am grateful beyond your imagination of my gratefulness for the technology involved in t1d management, I am all-to-aware of it's limitations.

A resilient Joe living a day-in-the-life with t1d.

Anxiety, Courage, Bravery

This summer, in particular, I am aware of it.  Raising a child with t1d takes courage.  

This post, in no way is meant to take away from those living with t1d.  Persons with t1d are perhaps the most strong, brave, and courageous people I know.  I live it.  I watch it day in and out.  When you have a child you are there to love them, to teach them, to support them, to guide them, to comfort them.  To endure the diagnosis and the laborious management of this disease and then to pass on the management to your child is a tenacious process wrought with "what if's".  Yes, I know you should not live your life thinking about "what if's".  But, sometimes... a lot of the time lately, I do.  Joe is my child; my child who has a high maintenance, chronic condition that needs monitoring, management, and consideration every time he eats, when he is active, when he is sick, when he is sleeping, and so on. 

Something as simple as going to a friend's house for a few hours is not so simple for us.  Actually, I think it is simple for Joe; not for me.  Reminders are given regarding sugar sources and diabetes supplies.  Questions are asked and pondered by my t1d worrying gray matter. Will he check a blood glucose?  Will he count the carbs correctly?  Will he bolus for the carbs consumed?  Will he go swimming and then go low and perhaps have a seizure?  Will he have a low on his way home and be sprawled out, like a limp squid, on a sidewalk somewhere?  These thoughts fleet through my mind.  I push them away.  I have to.  I need to let him grow up.  I need to hope for the best.  I have taught him well; I know that.

The other night, after an exercise class, he wanted to go hang with peers a couple of streets away.  Of course, I was fine with it.  Did I worry?  You bet.  Post exercise, Joe has a higher chance of going low.  He took sugar with him.  It was dark.  Dave was traveling, so I was home alone.  I willed myself to stay awake until Joe came home safe and sound.  I left my light on; the TV blaring.  Worry of a low Joe in the dark streets of our neighborhood crept into my heart.  I texted him, I requested he check in with me when he came in for the night.  He did.  He said he took sugar a couple of times while he was out.  He was a 148 when he arrived home.  I have taught him well; I know that.

A week..or so.. ago..  Joe phoned me.  "Mom..we are going to bike to KFC."  His voice was laced with pride and excitement over the adventure of biking and the glutinous fast food consumption that lay ahead.  KFC is a few miles away.  He would be biking with friends.  He would be partaking in eating (yes.oh.the.horror).  My response was "OK..make sure to take your supplies."  Within a few minutes a sense of dread came over me.  The sugar he typically keeps in his supply bag was in his room.  He was biking a few miles with no sugar.   Thoughts of Joe low and unconscious splayed out in the middle of our town, after the bike ride or after a miscalculated bolus crept into my mind.  So, I grabbed the sugar, hopped into my car, and I drove the sugar to the center of town; to Joe.  The sugar delivery trumped possible embarrassment of my possibly dramatic sugar delivery tactics.  He didn't mind.  He knew it could've been needed.  When he arrived home from KFC, he was 88.  He boosted with Skittles, prior to heading out to swim with friends.  I have taught him well; I know that.

And, while I have taught him well, there are just so many details that can go wrong, that can be overlooked, that can be misjudged with t1d.  It scares me, the thought of someday sending him out on his own.  Preparing him and letting him practice what he has learned for a few hours at a time will hopefully prepare me for a most difficult task; letting him go and trusting he will be OK.

An honest look at the anxiety, the courage, and the bravery involved in the day-in-the-life of parenting a child with t1d.

The Tree

Yes, the title has nothing to do with the post.  I just loved the photo I took of the area where we waited out the low.

Over the past 10 years, diabetes, for the most part, has become routine in the day-to-day, the hour-to-hour, the meal-to-meal, the night-to-night.  It blends in and really, at times, doesn't seem to be too big of a deal until it stops your child in his tracks.  When it stops Joe from walking, well... that is one of the times t1d kinda becomes a big deal; I can't just pop him some sugar, scoop him up, and lug him around like I could when he was 3, 4, 5, 6..or even maybe when he was 7 or 8.

A few weeks ago...on Father's Day..

We had set out on a family hike with my sister and my brother and their families.  The day was warm, uncomfortably so.  Joe had recently checked a blood glucose and his number was in the high 100s.  He ate a snack.  We walked.  We then played at the water's edge of Lake Champlain.  The thought of a low fleeted through a brain synapse or two, but then drifted away as I enjoyed this time with my siblings.  Joe seemed upbeat, as he skipped rocks across the lake's surface.

When we readied ourselves to leave, to hike back to our cars, it hit and the quickly and resolutely stated "I feel low," was heard.

He was 40 something.  Skittles were munched.

He stumbled, trying to take a few steps to start the long, hot walk back to the cars.  He wasn't gonna make it just yet.  I knew from the way the first step went, we would have to wait this one out.  It was gonna be a bad low.  The family, there were 10 of us, moved on and started on the hike.  I directed Joe to some shade.  He plopped down and then proceeded to lay face down in the grass.  I gave him another fistful of Skittles.

He didn't complain of the discomfort the low caused him.  His focus was on missing time with his family.  He repeatedly attempted to sit up to ready himself for the walk, but was unable to do so.

He rarely complains of the physical discomforts associated with t1d.  Over the years, it has been the stopping or the waiting that have bothered Joe.  Diabetes care appears seamless to outsiders, but trust me there is way too much stopping and waiting involved; especially for a young, growing, active boy.  Stopping to check a blood sugar, to count carbs, to bolus, to do a site change.  Then there is the waiting.  Waiting for a low to release it's hold on your body.  Waiting for a stomachache to subside after a bad pump site and the subsequent ketones.  Diabetes can most certainly be a tester of one's patience.  And on this day, it tested Joe's.

Explaining the psychology of a low in Joe's day-in-the-life.

Take That Growth Hormone

Growth Hormone is released from the pituitary, which is a part of the brain. Growth hormone counterbalances the effect of insulin on muscle and fat cells. High levels of growth hormone cause resistance to the action of insulin.  Basically, this means blood sugar levels will run high during periods of growth.


A week...or so, ago.. we visited Joe's endocrinologist...

Measurements were taken, values were obtained, a physical exam was conducted, mental well being was noted. 

Another 1.7 inches in height was reached; he is now taller than me.  A few more pounds of weight were gained.

His A1C was 7; down 0.3 from his last visit.

I'd say we are holding our own.

A day in the life of  growing UP with t1d.

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.

Not the "Cure" I Would Want for Him

Joe ran up to me, as we were leaving his track meet yesterday.  An excited  "Mom, I just met a man who said he 'used to have diabetes'".

I looked directly at Joe .."What?"

"Yea, he saw my pump and then told me."

My head did a subtle side-to-side shake.  My mind then went to the word "whack-a-doodle".  I was worried Joe had ran into someone who gave him false hope; someone who was telling him a tale about a Dr. MoonLoveJoy who cured his diabetes with a rainbow, sparkling with unicorn horn dust.

"Joe, don't believe it.  Whatever he told you isn't true.  There's not a cure for type 1."

"He said he got a kidney-pancreas transplant."

Oh.  Now.  This changed everything.  "Yes, then yes.. he is technically cured.  But ... Joe ... that isn't the way you want to get a cure ... by having your kidneys .. fail."

Joe and I talked more about transplants.  I used to take care of  kidney transplants post-op.  Typically, a pancreas transplant takes place in a person with severe t1d who is also in need of a kidney transplant. The transplanted organs require life-long use of anti-rejection medications.

"So, you don't typically see a person just receive a pancreas transplant."

"I know mom ... I wouldn't just get one for sh*#'s and gigs."

Ha!  "No Joe, you wouldn't just go get one for the heck of it.  Anti-rejection drugs can have some serious side effects."

As we drove home, we talked more about kidney failure.  It's been years now.  Years, since I've thought of this manifestation of poorly controlled t1d.

A day-in-the-life of talking organ transplants with my 13 year old.

Insulin Reigns Supreme

D' Blog Week:  Day 4:  I went with the Wildcard of getting physical.  Managing diabetes during exercise can be tricky, so share what works for you or your loved one with diabetes and maybe it can help someone else.  What do you do when you want to work out, but your blood sugar is lower or higher than you would want?  How do you cope with this?  Or how do you manage gym days at school for your child with diabetes?

I was living the dream...

Pancreating for a stubborn three year old who was as active as a rabid squirrel ingesting cases of Red Bull.  Fast forward 10 years ... I've learned a few things about t1d and activity.

Never, ever, never, ever, never, ever, never, ever, never underestimate the power of IOB (Insulin On Board).  If possible, I try to have Joe avoid a large bolus of insulin within 2 hours of a workout that will last for an hour or longer.  We don't correct highs (up to 300) and do about 1/2 correction for a BG over 300, before a workout.

Never, ever, never, ever, never, ever, never, ever, never underestimate the domination of insulin.  Joe's preferred sport is ice hockey.  During practices, we struggle with lows.  During games, we struggle with highs.  For hockey practice, I decrease Joe's basal by 40-50% starting about 1 hour prior to practice and keep it decreased for the duration of practice. He typically drinks a chocolate milk (28 grams CHO) before practice to "boost" his BG.  He drinks a Gatorade (another 20-something grams CHO) during practice.  And he typically has a "free snack" (18-30 grams of CHO) after practice.  During a game, his blood glucose will spike up to the high 200s to the 300s.  We typically do a 1/2 correction after the game and this will bring his BG back into range.

Never, ever, never, ever, never, ever, never, ever, never underestimate the potency of insulin.  Have access to plenty of fast acting sugar sources and longer acting carbohydrates during periods of activity.  Fast acting sugar is great for heading off an imminent low and then follow-up with something more complex to keep that number up.

In addition to our ice capades...

Joe also participates on his school's track team.  The practice is held at school, immediately after school is dismissed.  I added a "sliding scale" of sorts on his daily diabetes log.  I used to do something similar for PE days.

A person with t1d can be active; they, like all of us, should be active.  Yes, they need to pay attention to BG trends and what works and what doesn't work.  The above tips took years of logging and tweaking and will inevitably change over the next few years.  Also, sugar sources are a must if you are going to work out.  Have them on your person.  Have a stash of change to buy sugar.  I've had to raid vending machines after depleting our Skittles supply during hockey practices.  Just be prepared for the unexpected.  It happens.  But, it shouldn't deter you from getting out there.

A behind the scenes look at what goes into an active day-in-the-life of living with t1d.

"This Isn't Diabetes 101!" ~ Reyna Maher

D' Blog Week: Day 3:  There is an old saying that states "Sticks and stones may break my bones, but words will never hurt me."  I'm sure we've all disagreed with this statement at some point, especially when it comes to diabetes.  Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes.  For some, they don't care, others care passionately.  Where do you stand when it comes to "person with diabetes" versus "diabetic", or "checking" blood sugar versus "testing", or any of the tons of other examples?

The following doesn't happen all to often.  Well the "mascara part" does; that happens daily.

Typically, when it happens, it's in the morning as we prepare to get the kids off to school and the adults off to work. 

Typically, it's when Joe has forgotten to check a pre-breakfast blood sugar and Dave hasn't followed-up on making sure he has checked a pre-breakfast blood sugar.  Where am I?  You may be wondering and asking.  Well my eyelashes aren't gonna mascara themselves, are they?

So, typically...I come downstairs and ask about Joe's number only to find out no number has been checked.  My eye balls kinda bulge outta my skull and I then go all scholarly on Joe and Dave and say something like...

EYES BULGING OUTTA SKULL (note mascara use though)

"Guys, this isn't Diabetes 101!"

I then lecture them up and down about checking a morning blood sugar.  Ummm, they know this.  We've been doing this for 10 years.  I'm thinking we have enough Diabetes credit hours to have earned a Bachelors, and a Masters, and a Doctorate (a few times over).  

Dave and Joe laugh.  

Eventually, I will too.  

I do temper my behavior at some point in the interaction, reminding myself of the power of my words and actions.  I recognize the need to be authentic and real.  I don't think Joe is fragile.  I certainly don't handle him with kid gloves.  

I have, however, measured my words over the years.  

I never use the phrase "test your blood sugar."  Testing implies passing, or worse ... failing.   I also try to avoid saying things like "that's a good number" or "that's a bad number."  I try to view all blood sugar numbers as data. I am thankful for any data that could help guide decision making in Joe's care.

I also have some reservations about labeling Joe a "diabetic".  It's never seemed natural to say something like "my son is a diabetic."  So I've never said it.  

And...for some reason, I take pause with the word "disease".  To me the word means sick.  I tend to lean toward the word "condition", which really doesn't sound any better...oh and there is the equally unhealthy sounding word "disorder".  I use the words, once in awhile, but they don't roll off of my tongue.  Perhaps it's hard to accept words like illness, condition, disorder, and disease as a part of your child. 

A Diabetes 101 lesson on talking about the day-in-the-life.

Acceptance

Blog Week:  Day 2:    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?

The psycho-social-emotional toll of t1d has never been lost on me.  The micro-management of food.  The time the care takes.  The numbers "rating" how one is doing at managing the disease.  The stares.  The less-than-helpful, well meaning, misinformed comments.  And... I am sure the physiologic effects of the highs and lows impacts one's sense of well being.  Absolutely.


But..

I'm not gonna write about any of that today.

About a week ago.. as I was walking home after a run, I saw Joe headed down the street to our neighborhood.  His gait was slow.  His shoulders were slouched.  He then slumped down onto some one's lawn.

This happens.  When he gets a kinda badish low, his legs stop working.

I approached him.  "Hey..you low?"

The mouthful of Skittles provided the answer.

"You want me to run and get the car?"

"No,  Mom wait...I'll walk home with you."

Once his low released it's hold on his legs, we walked and talked and discussed Joe's day at school and then at track practice.  Somehow we got to talking about friends and then diabetes got thrown into the mix. Joe said something like "I just make jokes about my diabetes to my friends."

"What?"

"I try to make them not scared of it.  I figure if I make it into something funny, they'll feel more comfortable around me."

This kinda made me mad ...and ... well, sad too.  This disease demands enough out of Joe and the thought of him worrying about trying to make it better for his friends just annoyed me.  Not at him.  Not at his friends.  But just annoyed and mad and sad at the situation.

Trying to make his day-in-the-life a little comical for some acceptance from his buddies.

The Solo Sleepover

And, there are times I write about the day-in-the-life to let you know you are not alone.  And, we did it!  We made it through some new situation alive, some-what happy, and with some sorta glucose stability.

Words like "trampoline park" and uh ... "sleepover"  scare the bejangels outta even the most seasoned of d'rents.  Well, I got to experience them both in the time span of less than 48 hours.  The trampoline park escapade was with a friend and his grandma; not with me and my watchful eyes.  The sleepover was an impromptu arrangement made at 8pm last night;  it was to occur at a home where I have not provided any education about t1d (and this is where hot fiery pokers repeatedly jabbed into my mascara fringed eyeballs sounded more enjoyable than enduring the anxiety that was about to ensue).

The trampoline park went well.  Joe consumed roughly 80 grams of carbohydrate for "free" and we reduced his basal by 40% for a couple of hours.  His blood glucose stayed safely in the low to mid-200s.

It was the sleepover where I really struggled.

Joe ran into the house last evening.  His voice was laced with hope, as he asked for permission to spend the night with a couple of friends.  It was the last night of his Spring Break.  The sleepover would be at a home where he would essentially be flying solo with his diabetes care.  Yes, he is independent, but it is reassuring to have a some sorta supervision over all the blood sugar checking, carb counting, bolusing, and equipment management; not-to-mention the whole sleeping thing.  Joe sleeps like the DEAD.  He does not wake up for Dexcom alarms.  Sometimes, he wakes up from a low. More often than not, I catch the low first and treat him while he sleeps.  Nights are scary for me, if I'm not there to help him.

I offered to let him stay at his friends until 10, until 11, until midnight.  Joe felt that defeated the point of a "sleepover".  He was right.  I know this much about diabetes... the psycho-social-emotional part of this disease can smother your spirit.  The over-dramatic struggle taking place in my brain looked something like this "let him go ... he most likely won't croak" and "don't let him go ... he may become a depressed, maladjusted mess of a person."  The struggle was real.

The question "would I let him do this if he did not have diabetes?" repeated and repeated in my thoughts.  The answer was, of course, a resounding "YES".  I needed to let him do this.

So, he did.  He slept over at his friends house.

The Dexcom Share was on through the night.

He texted me every couple of hours with his blood glucose until he was incommunicado, while he slept.  The Dexcom eased any concerns of demise, due to hypoglycemia.

>

Anxiety, and over-coming it, is perhaps the main reason I write about our day-in-the-life.

A Free Meal

It's one, of many, difficult concepts to explain to those who do not intimately know t1d;  the tasks that accompany the simple act of eating.  Typically, a blood glucose level should be obtained.  The number, if high, should be corrected with insulin.  The number, if low, should be treated with fast acting carbs.  The food that will be consumed should be counted for grams of carbohydrate.  The carbohydrate count should then be covered with insulin.  Eating, the joy of eating, ...at times..can be dampened by the cumbersomeness of the management.

This morning, Joe sat down to a chocolate chip pancake breakfast.

Outta habit, he went to do a check.

"Joe, you just corrected about 30 minutes ago."

His morning BG was in the 230s, which he corrected.  I had pre-bolused for the 120 gram meal of 3 chocolate chip pancakes and a full cup of OJ.

"It's kinda nice not having to do the diabetes stuff ..."

"Is it doing the stuff every time you eat that bugs you? ...  Or, the me reminding you?"

Joe was kinda quiet here.

Me.. "Perhaps, it is both?"  It's hard to conceptualize.  I'm possibly as annoying as living with t1d; maybe more so?

A few more seconds of silence.

A mumble-y "yeah " ... and then a quiet "both" came out of Joe's pancake-stuffed mouth.

Enjoying a meal without doing his 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.

The End of the Beginning

My time left with them is diminishing.  I'm soaking up the family moments with a keen awareness of changes and transitions that will inevitably arrive, in the all too near future.

Joe and I had an interesting conversation recently.

The conversation was last week; in the car...and yes, you guessed it, on our way home from some sort of hockey.

"I'm going to go to Saint Michael's."

Joe was talking about a local college.  He, apparently, is planning on going to school there in five years.  He is, apparently, planning on living with Dave and I while he attends.

"Joe, trust me, you will want to be with your friends.  You will not want to live with us.  That is OK; it is a normal part of growing up."

Talk of Saint Michael's then turned into a discussion about the University of Vermont, which is about 5 minutes further from our house than Saint Michael's.  His plan changed from living at home to living at school, but coming home every weekend to see us, the dogs, and to do laundry.  Again, I stated his feelings about this would most likely change.

Not once during this conversation, not once...even over the days following this conversation...did I think of, or consider, diabetes.  Over the past nine years, I have gone from micromanaging a preschooler with diabetes, to teaching an elementary-aged child how to perform diabetes-care tasks, to remotely managing a tween with diabetes, and now onto promoting critical thinking skills in a teen with diabetes.  I have been anxious, over all of these years, about the day he moves out; about the day when I'm not there to help him.

The future of 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

Hopefully Never

Studies have shown depression symptoms in children and adolescents with type 1 diabetes are nearly double that of the highest estimate of depression in youth in general.

So...

Today we were at our quarterly Endocrine appointment.  This one started off a bit differently.  We, Joe and I, were each given a folder with a depression-y/anxiety self assessment to complete.  Mine was a couple of pages long with a bunch of statements followed by "yes" and "no" check boxes to check.  I had checked most of the "no" boxes; I had not experienced negative feelings about certain aspects of caring for Joe in the past week.  Furthermore, the questions addressed obtaining supplies, insurance coverage, etc...things we don't currently struggle with.

Joe's questionnaire looked fairly simple.  It was a single page.  He had to rate his feelings from something like "never"....all the way to...something like "frequently; all the time".  I took a quick glimpse at his sheet and he checked the "never" box for each statement or question.  One statement was in essence "I feel bad about myself."  Joe's answer was"never"... this was the gist of the questioning and Joe's answers were consistently positive.

At Endo Today

I handed in our completed forms and then entered the exam room and plopped down next to Joe.  Joe gave me the side eye.  His voice was hushed when he said "I feel bad for those people."

It was my turn to give him the side eye and then a whispered ... "For who?"

"The people that feel bad about themselves or their lives."

"Joe, you know why they had us complete that form...right?"

Joe's expression was blank.

"Joe, people with diabetes tend to be a little more depressed than other people."

"Oh.."

Not depressed by the day-in-the-life...yet.

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.

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.