I'm a Checker, but not a Mice Checker...Yo

A few days ago..

 

Pre-post note:  We are currently besieged by mice.  Traps are set in the basement and the main level of our home. 

The words "GI BUG" scare the BeJeezus outta even the most resilient, calm, cool, and collected of d' rents.  Joe currently has one.  I was up at 3 am ... checking a blood glucose, ketones, and then bolusing insulin.

As Dave woke, I updated him on the night care provided.

Me:  "I checked his BG...high 200s, ketones were OK...I've bolused twice over the last three hours."

Him:  "What about the mice?"

Me:  "What?"

A sick Joe with Oscar.  Miniature Schnauzers are supposed to be mousers! 

Him:  "Did you check the mice?" (referring to our traps)

Me:  "I'm the ketone checker; you're the mice checker."

Checking in on the day-in-the-life, but not on the mice. 😱

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.

I Don't Have All The Answers

"I knew about the highs and not taking care of my diabetes and losing arms and legs...but I did not realize I could feel so sick."  ~ Joe talking to me about his death~ate~a~cracker ketone sickness feeling from the other day.

"...so without insulin, would I just feel like that?  I would feel that sick until I died?"

*Uhh oh.  Not the dying business.  Please don't ask.  Please don't ask.  Please don't ask.*

"How long do ya think that would go on for?  The dying?  A year?"

*Ohhhh Man.* 

*Of course, he had to ask.*

"I dunno Joe.  Maybe a week or two?"

No one or nothing can really prepare you for all the conversations you will have with your children.  Limb loss and death have got to be amongst the toughest.  This talk of arm-less-ness and leg-less-ness and life-less-ness ("less-ness-es" added in to "lighten" the mood here) made me squirm as a parent.  What to say and how to say it; I do not know. 

Yesterday...




...Joe "raced" to CURE diabetes.

A day-in-the-life of  talking with Joe.

Fickle D'

"What was he?" ~ Dave to me at 3am...

"144"

My "one-eye" started to close and then I thought perhaps maybe I should ask why he was asking. 

My "one-eye" reopened ~ "Why?"

Dave's sleepy voice yammered off something about 9 glucose tabs and something about the 40s.

Me ~  "oh, I forgot to tell you that I never bolus for all of S'mores ... just half ... he always goes low after eating them."

Joe had a rough diabetes day yesterday.

6:54 am 337
9:06 am 306
10:05 am 319 (ketones 3.9)
11:18 am 248 (ketones 2.4)
12:14 pm 319  (ketones 1.4)
1:46 pm 448
2:14 pm 422
2:53 pm 406
4:01 pm 255 (ketones 0.0)
5:35 pm 56
6:56 pm 46
7:15 pm 110
8:15 pm 77
9:00 pm 80
10:49 pm 52
11:09 pm 41
11:29 pm 65
2:30 am 44
3:16 am 144


He handled it with grace.

A day-in-the-life of fickle d'

The Dreaded "No Parent Zone"

The "No Parent Zone" sign, printed on neon green backing, increased my anxiety level a bit.

I explained (or tried to, but how on earth can anyone "get it" unless you live it) to the registration lady that Joe had Type 1 Diabetes and that I needed to talk to his instructor, give him some sugar, and have an idea where he will be on the mountain before I can remove myself from the "parent-free" zone.

Joe was on skis for the first time in his life yesterday.  Hockey is over for his team for the season, allowing time for new "adventures".  Frankly, I was nervous to take Joe skiing when he was younger.  I should have taken him, but I didn't.  His blood sugars would frequent the 20s, 30s, and 40s when he was 3, 4, and 5 years old.  I was not comfortable manning him solo on a mountain, in the cold, on skis (yes, I realize this totally doesn't sound like the Reyna and Joe that you have come to know, laugh at, and perhaps love just a bit).

Back to the sign, the registration lady, and the skiing...Joe started his day with a lesson...

The registration lady tried to usher Joe onto the back of the room to the "No Parent Zone".  I was following Joe, unwrapping Starbursts.  His pre-lesson number was 198 (it is morning, trust me...he will crash).  The lady stopped me from following Joe.

Me:  "Ahhh...I need to give him sugar"

Lady:  "Now?"

Me:  "Yep, now."

Lady:  calls over the Joe to have him come to the "Non-Parent-Free-Zone".

I gave Joe 4 Starbursts (I shoulda given him longer acting carbs, but it was all I had in my coat pocket) and sent him back into the "Parent-Free Zone."  I waited for the registration lady, who is dealing with other lesson-goers.  Once she was free, I asked if I could speak to the instructor.  The instructor was in the "No Parent Zone" and as you maybe can already tell there is no way, no how I am gonna access this "Parent-Free Zone"...and apparently the instructors don't come outta the "No Parent Zone".  So the registration lady stated that she would inform the instructor of Joe's Type 1 Diabetes, that he has sugar in his coat pocket, and that I will be located at the bottom of the hill if Joe needs me.  I watched the registration lady go tell the instructor.  I kinda waited to try to make eye contact with the instructor so that she knew what the mother (and bad-a$$ pancreas) of Joe looked like.. ya know ... in case she needed my assistance.  She never looked over.  I left feeling a bit nervous and anxious.  I was confident in Joe though.  He had sugar...he would be fine...

Off to the bottom of the bunny hill I went.  I think they really discourage this.  Oh well.  I wanted Joe to know I was there if he needed me.

45 minutes or so into the lesson, the instructor called down the mountain (hill...), "Joe's mom?"

Me:  "Yes, is he low?" (I forget he doesn't speak Diabese)

Instructor:  "Ahhh...I wanna move him up to another class.  He can already stop and turn and he belongs in the Moose or Raccoon Group, not the Chipmunks."

Me:  "Will he be going up higher on the mountain?"

Instructor:  "Yes."

OK.  So I went with it.  I checked Joe's blood sugar again (about an hour after the 190-whatever and the 16 grams of carbs).  He was 134.  I give him a couple of glucose tablets and then he is going to apparently slug back some Hot Chocolate in the "No Parent Zone".  So, I went with that too.  Just have like a smallish amount of Hot Cocoa Joe.  Yeah, right.  Who knows what he consumed in the "Parent-Free Zone".  Alls I know is that when the lesson was over and Joe was begging me to rent skis and get a lift ticket so that we can conquer the mountain together his blood sugar was 396.  I did nothing with the number.  It'd burn down.  I had more pressing issues like I was gonna have to ski.  I had not skied since 1996.  I tore my ACL (Anterior Cruciate Ligament) the last time I skied. 

Lift ticket purchased, rentals donned, I head out to get Joe off the bunny slope.  He instructed me on how to insert my boots into the bindings.  Once the skis were on, I was comforted that they felt pretty natural to me.  Off to the lift Joe and I went.  There was no line.  Once the chair passed us to scoop-up the people in front of us, I tell Joe to hurry and get up to the loading line.  I then heard him say "crap"...as, I got scooped up by the chair; Joe did not.  He had dropped a pole and was two chairs back from me on the lift.  The people behind him are yelling at him to pull his safety bar thing down.  He did.  The only comfort to me at this point is that his number was 390-something the last time we checked and that he could not possibly be low and dangling 30 feet over the earth, solo. (Now let me insert here that most parents would be worried about their kid  dangling precariously over the earth while trying to man poles and while swinging their skis a bit too wildly - in my opinion... especially when it is their kid's first time on the lift, I think the diabetes just escalates that worry and I was so very, very, very calmed by his previous high-ish number...trying to not think that perhaps his vision may have been a bit blurry with the high.)  Anyway.  He exited the chair like a pro.  Off we went to enjoy some green circle runs.  We did several of the same run...off the same lift.

Then...

We decided to mix it up a bit.  We tried a new lift.  This lift looked long.  This lift had some sort of midway exit.  As we approached the midway exit, Joe thought perhaps we should get off.  Me?  I thought what the heck?  We should scope out the top.  So, up...up...up we went.  When we exited, we had two choices to get down the mountain.  A blue square to the left or a blue square to the right.  We took the blue to the right.  It was narrow.  It was icy.  I think I maybe said some inappropriate things. 

I finally talked him into lunch.  BG was 262.  He ate.  I bolused for the majority of the carbs, but did not "correct".  Out we went, for more.

By the end of the day, Joe and I were sticking with our first lift/run combo.  Joe would mix it up a bit and go on different runs than me and we would meet at the bottom.  One time I was waiting and waiting and waiting for Joe.  Lunch bolus was on board.  It had been about an hour since he had eaten.  Nothing scares me more than losing him.  It isn't just the losing a kid thing.  It is losing the kid and people not knowing about the blood sugar business thing.  It is the lost in the woods...comatose from a low... in the cold ... kinda thing.

Welp, he was fine.  Apparently he decided to go off some sort of wooden-ramp-jump-thing and did a face plant.

A day-in-the-life of adventure with Joe.

Welp, He Did Good. I Did Not.

We're up...

Been up since 5:30, avoiding the breakfast IOB...Joe's tryouts are at 8am.  Last night, as Joe went to bed, I asked him to wake me when he woke in the morning.  Told him that I would get his breakfast ready right away...plan was to hopefully feed him before 6am.  Breakfast, bolusing, and morning hockey have notoriously been problematic for us over the years.  Joe's body seems to be extremely insulin resistant with his first bolus to cover carbs.  His breakfast ratio is a 1:10 (the rest of the day it is a 1:20 to a 1:50...interestingly enough the 1:50 comes at morning snack to put the "brakes on" the 1:10).

OK...that's the boring stuff...onto the good stuff...

Tryouts (part 1) went well.  Well, that is, Joe did well.  He skated hard.  He did his best.  Dave and I were proud of him.  Most importantly, Joe was proud of himself.  Felt he did good.

I was, however, a bit disappointed in myself.  I share everything, too much perhaps, here.  I share the good, I share the bad.  I am not always pancreating perfectly and, as you know, my parenting tactics have their own set of issues.  Combine alternative parenting, with being a pancreas, and with being a hockey mom...well, I mess up.  A lot.

Here is what happened...please don't judge too harshly...I just wanted my kid to be evaluated on his skating...not on coming to the bench...I just so badly wanted for this chunk of time ...tryout-time ...for diabetes to not be involved.  I always say I don't really care about where Joe gets placed as a result of these tryouts.  My actions and behavior yesterday...well...they speak otherwise.  I need to take a look at that, in myself.

Joe's pre-tryout blood sugar was 288.  No IOB.  I did nothing, thinking he would skate it down.  Joe's and my plan included a blood sugar check half-way through the tryouts...at the 35-ish minute mark. 

There were about 40 children on the ice.  They were each assigned numbers and were wearing a corresponding pinnie.  Evaluators were sitting on the opposite side of the rink, with clipboards...  The kids do drill-after-drill-after-drill...repeating each one several times.  20 minutes into the session the kids are in like 6 lines...whistle is blown...a skater from each line takes off...skates hard to the blue line...hockey stops...whistle...another wave of kids takes off...first wave moves onto next line...whistle...third wave of skaters take off...first and second waves are moving on down the ice...skate.stop.skate.stop.skate.stop...they looked like soldiers. During this intense skating-hockey-stopping-drill, Joe peels out...to the bench...looks up at me and gives me the "finger-poke" sign, indicating he feels low.

Fine.

I noisily clump and clop down the bleachers in my newly purchased Old Navy ankle boots (bootlets?)...Woodchuck slung over my shoulder.

I was running fast.  I didn't want Joe to miss his evaluation time.  As I rapidly approached the bench, I hear a coach telling Joe to "get out there and hustle".  I chime in with a "he has diabetes...needs a blood sugar check".  He backed off.  Told us to take our time...meanwhile, Joe is missing out on evaluation time...looking like a ninny to the evaluator guys holding the clipboards across the rink.  They don't know our situation.  Not sure I want them too, but don't want them to think my kid is a big baby that needs to go to the bench to be coddled by his mommy.

In one fluid motion...I ran to the bench, pulled out the glucometer...loaded the strip...pulled out and cocked the lancet...Joe's number was checked.  He was 271. 

*thought here is that site is going bad...mid 200s all day...not budging...Joe's number will hold steady for the rest of tryouts*

So, I said to Joe something like ... "Don't come back over to the bench.  You are fine.  You are 271.  You're number hasn't budged.  They (my eyes dart over to the clipboard guys) are evaluating you.  You don't want to miss skating time for unnecessary checks. Don't come over...unless..."

"Mom, I felt low."

"Yeah, I know...but your not...go skate...and...have fun." (but what I really meant..go skate your patootie-off...screw the fun)

So, off he went.  He skated.  He stick-handled.  He did fine.

Then, with 15 minutes left...he comes to the side of the rink.  I am looking at him with a "what can you possibly need?" look...mascara-fringed eyeballs kinda buldging outta their orbits.  Through the glass, through the helmet, through his gestures, I make out that Joe now has to go pee.  Denied.  I somehow convey back by pointing to the clock and giving him a "what-the-what?!" look with exasperated arm gestures that pee-ing will have to wait.  He skated off.

Not sure how the mid to high 200s feels on one's bladder.  He finished though.  Did well.

Post-tryout number was 273.  Changed his site.  Only 1/2 corrected and bolused for dinner.  He came down to 100 within and hour, or so.  Had to stop the crash with a couple of glucose tabs.

A day-in-the-life of diabetes being part of it all...even when I wish it would just go away.

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.

A Mess

Ugh...It was a mess.

It started with Joe rolling up the BETA BUDDIES Book and kind of sitting on it.  He did not want the class to see his picture on the cover.

I think he looks CUTE here...

So, Joe and I presented Type 1 Diabetes to his class yesterday...

I think, well I know that I embarrassed Joe.  I left his school feeling pretty bad, sad, and mad.  Mad at myself for not choosing my words more carefully.  Disappointed in myself for still crying.  Six years into this life of managing diabetes and I still cry when I tell his classroom that what I want them to take away from my talk about diabetes is that Joe is a normal boy that can do anything that he sets his mind to.  Of course I did not say it eloquently like that.  I said something like "he likes to run and play just like each one of you...he has brown hair...he has brown eyes...and ..." (* could not speak as my eyes started stinging and I lost my composure a bit*)

Joe's teacher, thankfully, took mercy on me and got the class engaged in talking about all the sporting activities Joe participates in.  They talked about his sweating issue, which they all thought was due to diabetes.  I chimed in with I think Joe is just a "sweat"-er.

One child then asked how I knew to take Joe into the doctor when Joe was diagnosed.  I talked about the sippy cups full of water just to satiate Joe during short car rides to the grocery store.  I then said something about urine laden diapers.  Apparently, and I realize this is common sense, "sippy cup" and "diaper" and perhaps "urine" are taboo words when talking about your nine year old in front of their entire class.  I am sure the "sweat" coversation did not help matters either.  I suck.

Joe handled it with grace.  He pulled a "Reyna", by diffusing his embarrassment with humor.

I left his school heavy hearted, feeling like I let him down.  I think not having the book to focus my attention lead me down the path of insensitive bodily excrement talk and infantile product discussion.

Ruining Joe's day-in-the-life.

SIX

Welp.

It was six years ago today, at about this very time that I was driving Joe to his Pediatrician's office.  It was there that his urine was dipped and sugars and ketones were detected.  It was then that he was diagnosed with Type 1 Diabetes.

An important day that changed our day-in-the-life.

Thank You Phone Caller Friend. Community.

You can thank the letters "W" and "M" for the following post.  I have been up.  I have been up at 1:40 correcting a 300.  I have been up at 4:15 making sure the correction worked or that it didn't induce coma.  And I am now...just up..because who can sleep with all these ups and downs.  I wonder how Joe's body feels while it is "W"-ing and "M"-ing?  And I swear that right before the "W" there is like a finger pointing at me...like I did something wrong.

**********

Phone call the other day after school.

Me: "Hello?" (newish phone, didn't have friend in my contacts yet, hence the "?")

Phone Caller Friend:  "Hey...we just saw Joe pushing his bike up Brickyard (a street)...he looked a little .. tired.  Does he have a phone or something?  ... Just thought you would want a heads-up..."  Now I am pretty sure she was calling to give me a diabetes "heads-up", but maybe it was a normal "heads-up" call.  My mind almost always goes to "diabetes" where Joe is concerned.

Me:  "Thank you so much.  I just checked his number at school.  It was in a good range for him to ride home.  He is walking because ... bike is a BMX bike ... no gears (by the way, let me insert here ... a total blood sugar buster).  Please always feel free to call if something looks off.  There may be times Joe could use some help."

A village.  Did I ever tell you that I actually do live in a village.  Essex Junction is a village.  A village, by definition is a community smaller than a town.  I think the term "It takes a village"  really hinges on the "community" part of the "village" definition.  Community:  A group or society helping one another. 

**********

This year, after school is going to be a bit different.  Joe will bike home and go to after school activities.  I reflected this on his daily log; the piece of paper with carb counts and instructions that accompanies Joe to school daily via Woodchuck.  I have added a "sugar sliding scale" of sorts to boost him according to his 2:45pm number. 

Presenting the 2012 "LOG"

Here is the blown up part of the "sugar sliding scale" instructions.  I also like to use it for P.E. Days.

Community in our day-in-the-life of looking out for Joe.

No Boluses

Last night...

In our kitchen...after dinner...Joe with a smidge of a smudge of Ranch Dressing on his cute chin...

Somewhat outta the blue...

Joe:  "So I would die without Insulin?"

Me:  "Yeah...not immediately ... but eventually..."

* (uhhh ... ...  would it take days?  weeks?  I hope he doesn't ask.. please don't ask...please don't ask) *

Joe:  "So, before Insulin was invented people with Type 1 Diabetes died?"

* (thank you ... ... not asking... not asking) *

Me:  "Yes, they would."

* (I will not go into the uplifting "Death By Starvation, Dehydration, and Acid-ation" talk right now) *

Joe:  "Gosh, I just want Diabetes to be CURED."

Me:  "Can you even begin to imagine? A CURE?"

Joe:  With eyes wide and a smile tweaking his lips "No boluses, only checking!!"

It is here where my heart broke a bit.  I am not sure if it is the way his face lit up when he said it or if it was the fact that taking away just one portion of the care was a CURE to Joe. 

Conversations with Joe during our day-in-the-life of living with Type 1 Diabetes.

Our Parenting Conversations Are Different

Six years almost.  Six years since Joe has been diagnosed.  It is strange how a certain acceptance has developed.  As I send him out on his bike, on in-line skates, on foot into our community, as I tuck him into bed at night, as I drop him off at school ... a teeny-tiny part of my heart and my brain is always aware and somewhat prepared for the possibility that I may not see him again. 

The kids were out in the 'hood playing with their friends.  Joe was squirting a hose into a gaggle of girls squealing their protests.  I was prepping dinner by laying out the leftovers on the kitchen island.  Dave walked in from his day of work.

This was last evening.

Me:  "Good day?"

Dave: "Yeah..."

*Or I think he said "yeah".  I was only half listening.*

Me:  "Kids had a good first day of school...Bridget loves middle school ... Joe said his day was boring...blah...blah...blah."

*pause*

Me: "A child died last night.  Seven year old.  Diagnosed at two.  Low or Dead In Bed.  Parents slept through a night check alarm. Found him in the morning."

Dave: "Can you imagine?"

Then, we went there.  We went to a place we haven't gone.  Actually, it is something I had not thought about; one of us blaming the other for a missed night check and a gone Joe.  We are human.  We need sleep.  This family is facing our worst fear; the death of their child.  The night check ... done or not ... may or may not have prevented this death.  The thought of struggling with "the blame" and "the guilt" while dealing with "the grief" is overwhelming.

Me:  "We would not blame one another... would we?"

Dave:  "How could you not 'go there' ?"

Me:  "I guess you are right ..."

A day-in-the-life conversation between my husband and I, as we parent a child with Type 1 Diabetes.

His Pancreating Ways R Driving Me Cray Cray!

"Owww...HARhumph .... MOM!!!  You are talking way too loud!"

Joe and I were on the phone the other day.  He has a new Tracfone.  Dave and I had bought it for Joe as a safety-net as he undertakes all of his various endeavors before and after school, while playing with his pals in the 'hood, and all of Joe's what not.

Joe was calling me from his friend's house.  He and his friend were about to eat a snack.  Our plan was that he was going to call me with a blood sugar number and a carb count and an activity report to calculate how much of an insulin bolus to give.

Back to the convo....

Me:  "Joe, I don't know what you are talking about.  I am talking "normal"." (using an extra calm and soft, soothing voice ... yes, I have one of those)

Joe:  "Oh...I put it on speaker...oops...gonna keep it there though.  My ear is sweaty."

***Ewww****

Joe:  "We are gonna eat a snack."

Me:  "How many carbs?"

Joe:  "29"

Me:  "What was your number?"

Joe:  "Huh?"

*seriously?...how many years have we been doing this?...eye-roll...no sigh...trying to be somewhat of a good parent and pancreas all at the same time... which, by-the-way, is not easy*

Me: "Ah...did you check a number?"

Joe: "No."

Me:  "JOE, check a number."

Joe:  "OK"

*muffled voices, screams, laughter...he is having a good time*

Joe:  "101"

Me:  "What is the snack?"

Joe:  "A Popsicle-y thing."

Me:  "Is it all Popsicle? OR is there some ice cream involved with it?" (If it were all Popsicle, I would only have him cover 10 grams max.  Between the activity level and the glycemic index, Joe tends to drop like a rock when I fully cover Popsicles, juice, and the like)

Joe:  "It is like an Oreo Ice Cream Bar."

Me:  "OK...bolus for 20 of the 29 grams."

Joe:  "Bye Mom"

**********

Not sure what is going on with Joe these days.

We have been doing "Diabetes" for roughly six years now.  The last month or two have proven to be a bit difficult as Joe's independence with diabetes and "life" in general is expanding.  He meanders the 'hood on his bike visiting friends and looking for "work".  He started a Lawn Care business with his friend (his motto is "We put the CARE in Lawn Care" ... catchy).  The playdate, mentioned above, is the fifth home that he has ever gone to without me, his portable pancreas, in tow.  It is the first place that I did not train the parents in preparation for his stay.  I am becoming more and more comfortable with letting loose a bit.  He always travels with sugar. He has the phone.  He is with a friend. We always discuss, double discuss, and triple discuss our "plan" regarding blood sugars and diabetes management.

We are running into some issues though... 

1)  He isn't checking his blood sugar before he eats.

2)  I am getting frustrated. 

3)   I am sighing...out loud...sometimes. 

4)  He says he forgets.  Once he is reminded, he does it without complaint. 

5)  AND.  I catch him free-basing crackers, chips, and snack-like items when we are out with friends. 

Burnout?  I dunno.  Is he really "forgetting" to check?  It is his routine, has been for years.  I think he is he is a bit sick and tired of the never-ending-ness of it all.  I know I am.  Frankly, I am looking forward someone else supervising his "pancreating ways"  when he starts school tomorrow.  And, yes, I feel some guilt over those feelings.  Joe won't get a break.  Ever.

Joe's pancreating driving me nuts in my day-in-the-life.

Tough Choice

I know better.  I know better.  I know better.  When pray-tell am I going to do better?   I know that he goes high after the movies.  Yes, I crank-up his basal by 100% for an hour and a half while he sits.  And... yes, I even pre-bolus him for an hour of basal while cranking-up the basal.  And... of course I RAGE BOLUS for the "kiddie combo" of popcorn and fun-sized Skittles.  Post-movie, Joe's blood sugar was a titch over 300.  He corrected, under my instruction ... even though part of me knew he would crash, but the 300 got under my skin.  I could not let it be.  After we arrived home, to add insult to injury (aka "activity to correction") we then proceeded to finish out our afternoon by heading over to our local pool and park via bike.  Joe experienced a significant low an hour later.  By "significant", I mean not only was his number low (in the 50s), but his legs became weak and he was out of sorts emotionally.  

Significant lows happen.  Unfortunately, they are not always "convenient" with the pressures of life, parenting, and schedules. 

"You are all that is keeping me going."  His voice was strained.  His pedaling slow.

"I would normally be home by now."  His verbage and demeanor cracking.

"This low has me pedaling at 1 mile per hour." Briefly I saw the humor of his Y chromosomal need to quantify the shitty hand that this low dealt him.

Then he cracked as his bike was listing, tears in his voice "I hate diabetes."

"I know buddy.  Do you need more sugar?"

"Yeah...let's try that."

We stopped, straddling our bikes.  Two more Starbursts were unwrapped and mother-birded.  "Can you keep going Joe?  We need to keep going.  Joe we gotta keep going ... we are going to be late to pick-up Bridge." 

At this moment I was hating diabetes too.  Once again, it placed me in a position of feeling like an inadequate parent.  On the one hand, I was left pushing my son to keep biking to get home...to get to our car .... so that we could pick-up Bridget from camp.  I know that biking or any physical exertion on his part was detrimental to him and his recovering blood sugar, yet there I was coaxing him to pedal-on in order to make some sort of progress. On the other hand, it, diabetes, was now going to take away a timely showing for Bridget at her first day of camp.

After the Starburst pit stop, the bike riding was not going well.  Joe was too weak to make it up the final two hills to our home.  His number was recovering, but physically he had not "caught up".  So, I had a tough choice to make.  Many of you may question my judgement.  Not sure if it was the right thing.  I ditched him.  I ditched him in a lawn about two to three blocks from our house.  I left him with his bike and Woodchuck (his diabetes supply bag).  "Mom is going to speed home and get the car Joe.  If you feel you are dropping, take more sugar.  I'll be right back."  Leery of my decision and still a bit pissed at the disease, I parted with Joe.

I hauled ass home only to realize that my keys were in Woodchuck (ya know...the "Woodchuck" I left a few blocks back with Joe).  Expletives were flying off the tip of my parched tongue like rapid machine gun fire as I hauled booty back to Joe and Woodchuck.  Upon approaching Joe, I was relieved to see him sitting upright and color returning to his face.  I snatched the keys from Woodchuck and then hauled booty back home and hopped into the car to haul booty back to Joe and then onto haul booty to pick-up Bridget from her first day of camp.

I was 7 minutes late.

A tough choice in our day-in-the-life of managing type 1 diabetes. 

"Thank You" ... It Is Not Quite Enough.

A little over a week ago...On Joe's last day of Third Grade and his last day at Hiawatha Elementary School...

Written and folded into a paper airplane by Joe's School Nurse:

A 4 YEAR JOURNEY...

NEVER TO BE FORGOTTEN.

A SPECIAL STUDENT WHO TOUCHED MY LIFE!

A SPECIAL FAMILY WHO MOVED ME!

SOME OF THE LESSONS LEARNED:  HOW TO BE BRAVE, SMARTER, PATIENT, KIND, HARD WORKING, FLEXIBLE, SAFE, A BETTER PERSON, A BETTER FRIEND, GOOD WITH NUMBERS, A BETTER READER, A BETTER NURSE AND A BETTER HUMAN BEING IN HAVING MY LIFE TOUCHED BY YOU JOE MAHER AND FAMILY!

THE LIST COULD GO ON...BUT I WANT THE PLANE TO FLY AND I WANT YOU TO FLY JOE, FLY ON IN LIFE AND COME BACK AND LET ME KNOW WHAT YOU BECOME SOMEDAY!

Kindergarten Joe

I would search the building for her.  I would.  My eyes would have to meet hers before I would leave him there; before I would leave Joe for his full days of Kindergarten.  It was an unspoken thing.  It was a security thing.  It was a "I need to know my kid is gonna make it through the day alive" thing.  The School Nurse was Joe's life-line, which in turn made her mine.

As many of you know, Joe was diagnosed with Type 1 when he was three years old.  I had attended preschool with him for weeks, while the staff learned how to check blood sugars and to treat lows.  I was present for daily snack times to dose Joe with Insulin, as the school ... and I ... were not ready for that responsibility shift.  I had been Joe's pancreatic~shadow for two years prior to his Kindergarten year.  I was not comfortable leaving him with many people, not even Dave.  In hindsight, yes, I realize that this was not a "healthy choice" for myself, for Joe, or for my family.  But, it was how it went down.

After reading the above, you can only begin to imagine the anxiety I experienced when sending Joe "away" for full day Kindergarten.  To experience 7 hours away from Joe, from the numbers, from the "micromanaging", from the tweaking was a bit of a shock.  Frankly, I cried for the first few days of school.  Not sure if the tears were out of happiness, sadness, or fear ... or what.  Perhaps they, the tears, were out of relief.  It was a relief to have a break.  It was a relief to not clock watch.  It was a relief to not carb count.  It was a relief to not bolus, to not worry about activity, to not throw test strips away, to not tote sugar sources.  More importantly ... most importantly ... obviously ... It was a relief to know that he was in safe, capable, and in the most caring of hands.

As Joe matured and traversed the First, Second, and Third Grades he was supported in his growing independence in regards to his diabetes care in the school.  I did not hover.  I did not need to see the School Nurse before I was able to leave Joe at school.  Eventually, I would just drop Joe and "Woodchuck" off at the curb.  The School Nurse and the staff knew Joe; they knew diabetes.  They cared for and nurtured Joe as a growing boy, student, and pancreas.

The School Nurse was integral in facilitating Joe's independence in a safe manner.  She got it.  She shifted and followed Joe's lead.  For Joe to "fly" he needs to learn to manage diabetes safely and independently.  He is well on his way thanks to you Mrs. C. 

A day-in-the-life of "Thank You" just not seeming like quite enough.

Socially Acceptable?

I think in the past I...and not Joe ... have done the blood sugar checking in potentially bio-hazard-y situations. 

Yesterday...

The checker~outer~bagger~guy was eye-ing Joe.  Joe had found me in checkout lane #8.  "Mom...I feeeEEEL LOw." I know that climbing and descending octave voice.  It is Joe's low voice.  I could not reach Joe, as I was pinned-in my lane by the shopping cart.  I tossed Woodchuck (Joe's diabetes supply bag) over to checkout lane #7 and instructed Joe to do a check.

Joe had just spent the last four hours swimming and biking on a pump track.  Swimming rarely causes Joe blood sugar issues.  He keeps his Ping on.  No decrease in basal...bolus as normal for food...minimal free carbs are needed to keep him euglycemic.  Pump track riding may be a different story though, as we battled many lows yesterday afternoon, evening, and on through the night and into this morning.

Enough about numbers, let's get back to the checker~outer~bagger~guy and the grocery store blood sugar check...and the blood...oh yeah, the blood....

So, checkout lane #7 was vacant.  Joe walked up to the "conveyor part" of the lane and started unzipping Woodchuck.  Now ... I don't give the whole blood sugar procedure a lot of thought.  You know, the blood borne pathogen business.  I don't really think about the "biohazardness" of our day-in-the-life.  With Joe's Woodchuck splayed out all over lane #7, I started dreading a "gusher" (yes, at times Joe's finger can spew like a volcano..now no one is gonna come over for dinner).  The thought of blood splatter on the conveyor belt and the sequella of that splatter ... blood droplets smeared all over not only the black belt but being smeared all over the hard~to~reach~to~sanitize conveyor parts underneath the checkout counter ... and the possible tainting of fresh produce ... the thought of the blood on the belt and the look of the checker~outer~bagger~guy taking in Joe's predicament had me take pause and instruct Joe to move his procedure to a less traffic-ed spot.  He did it by the checkout lane #7 bagging station.  Not sure if that was much better.

His number?  It was 59.

A day-in-the-life of trying to manage diabetes in the checkout line in a "socially acceptable" manner.

"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.

Tuff Mutha

The RULE OF 15: If your blood glucose is 70 mg/dL (3.9mmol/L) or below, use the rule of 15 to treat hypoglycemia.  Treat with 15 grams of rapid-acting carbohydrate.  Check blood glucose in 15 minutes.  If your blood glucose is still less than 70mg/dL, eat another 15 grams of rapid-acting carbohydrate and re-check blood glucose in 15 minutes. Repeat as needed until blood glucose is in goal range.

We all know about this rule.  Who breaks it? 

Memorial Day Parade 2012...The Essence Of "Joe" (Thank You Nikki)

A couple of days ago...

A pause...then the heavy Joe breathing that I know as heavy Joe breathing because it seems he is always breathing heavily when he calls me from school.

"Mom?"

"Yeah Joe."

"I am 56.  Can I please just eat my snack with my friends?"

"Joe, you need to wait for the 56 to come up."

(tears and a quivery voice were then heard) "Please mom.  You have let me eat when I am like 68"

"56 is too low Joe.  Wait for your number to come up."

"Please mom." (tears)

"Joe, put Mrs. School Nurse on the phone." (firm voice)

"Please mom." (tears)

"Joe, put Mrs. School Nurse on the phone." (firm voice)

"Please mom." (tears)

"Joe, put Mrs. School Nurse on the phone...now." (extra-firm voice)

I explained that the 50s was just too low to go ahead and let Joe eat.  I wanted Joe to wait 'til the fast acting sugar brought his number back to a safe range (greater than 70) before he ate his snack.  He ended up missing snack time with his peers.  He waited out his low in the Health Office, with the nurse...he ate 15 minutes or so after his buddies.  Sucks.  But it is life with "D".  Rarely is a complaint voiced by Joe.

I am not sure if Joe's tears were out of frustration or due to the low.  Most likely they were a product of both.  When parenting a child with a chronic condition, restrictions and limitations are part of our day-in and out.  Sure they are a part of everyday parenting of any child to keep  them safe and to raise them to be a somewhat kind, caring, respectful human being.  However, in our situation...the limitations and restrictions are present on yet another level.  On a few levels actually...for safety~sake...and for guiding their self-management for the one day when they will be independent with this big time, high maintenance, laborious condition. 

I have let Joe go ahead an eat when he has been in the mid to high 60s.  After fast acting sugar has been consumed, he has sat down to eat.  The bolus in this situation would be given after his meal is consumed..and/or an extended bolus may be executed.  The 50s, while he is at school...and not under my watchful eye, was too low for me to acquiesce.

What is your cut-off low number?  How do you manage it...delayed bolus...combo bolus...extended bolus...free carbs?

A day-in-the-life of being a tuff mutha.

Who Has DONE IT On Stilts?

Joe did.  Yesterday, after school, I saw my kid strutting his stuff on stilts.  Routinely we check a blood sugar upon dismissal.  Yesterday...we did it stilt~style.  Joe's blood sugar was 133.

Why the heck was he on stilts you may or may not be wondering. He and his friend are performing a stilt routine in the Talent Show today... yesterday was the dress rehearsal.  And yes, I realize the stilts look a bit "Forrest Gump-ish".

Checking blood sugars in our day-in-the-life.  A cool, bloggable, moment.