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.

Never Let Your Fear Decide Your Fate

60 minutes or so...ago...

Driving back across town to buy a 564xl black cartridge for our printer.  Gotta have Code of Conduct printed and signed and Medical Form printed and completed by 3:30pm today.

...for Joe's hockey tryouts.

While driving, I am on the phone "directing " Dave, who is manning Joe.

"Feed him something now.  I don't want to go into tryouts with IOB if we can avoid it."  I've said it once and I'll say it again...never, never, never underestimate the power of IOB.

You see, I am nervous.  I don't wanna let Joe down.  A low or serious high can effect Joe's well being and subsequently his performance. I want to make his blood sugars be a non-issue today, tomorrow, and Monday (his three days of tryouts).

My favorite song these days...is "Kill Your Heroes"...I love the part that goes "never let your fear decide your fate"... Gets me pumped up and rings so true.



A day-in-the-life of fretting over my pancreating abilities for my son Joe.

D' Diligence

This just in...

By the way, I am grumpy...have a cold...

Car ride home from school, about 10 minutes ago. 

Me to Joe:  "You ordered the school lunch for the field trip tomorrow. Right?"  (We filled out forms for the all day hike a couple of weeks ago.  My mind is already carb-counting-out his lunch and trying to settle on some sort of basal reduction plan that may or may not work depending on the Universe's alignment and 'tude tomorrow...oh, and Joe's growth hormones, exertion level...hikes have notoriously left me a wreck in the past.  My worry of losing Joe in the woods connected to lethal amounts of insulin dripping into his body is a hard habit to shake.  He hikes fast.  I am usually clambering up or down some mountain paces behind him...yelling for him to slow down...it has been like this for years... yes, it is a little embarrassing)

DUH-faced Joe: "Mom!  You did not tell me to hand in the forms."

*internally going all kinds of ballistic*

Let me tell you the system.  The school sends home a folder.  Every.Friday.  The folder has two sides.  One side is labeled "home" and one side is labeled "school".  So the forms to view and complete are in the "home" side of the folder.  I view them.  I complete them.  I then put them in the "school" side of the folder.  The folder then makes it's way to school via Joe's backpack.  Now, I don't know how the folder traverses the school from this point on, but I am assuming that some-how, some-way those forms get to where they need to get. Hopefully the issue here is that Joe forgot about those particular forms on that particular week a couple of weeks ago.  Hopefully he is all set to go...for tomorrow.  Hopefully, I am frustrated for no reason.

Me:  "Joe the forms were in the folder." (firm, no-nonsense voice)

Joe:  "Ahhh .... what folder?" (mind you, there is only this one folder in Joe's life right now)

Me:  "Joe, this is your job.  I put the papers in your folder two weeks ago.  It had your permission form.  It had your menu choices.  It let them know that I am riding the bus and going on the field trip with you.  I am gonna blow a gasket on ya."

"And ...did you turn in your book order?"

*his blank expression spoke for him...he forgot to turn that in today*

"Fine.  If you don't hand in the book order, you don't get the books.  That is a logical consequence."  Using tactical parenting lingo while actually parenting is most likely not smart.  I am giving him an unfair advantage.

We pulled into the driveway.  I had, finally, calmed.

Bridget, Joe and I settle into the kitchen.  I look over Joe's daily diabetes log. We are still struggling with managing a large drop from pre-recess to post-recess.  At this point, I hesitate before looking at the numbers...depressing.

Joe notices me looking at his numbers.

Joe:  " I was double-downing before recess..." (he was 108 while Dexter showed the rapid drop)

Joe continued on:  "I didn't go for an Oreo~boost.  I needed fast-acting sugar for that number ... with the double-down and all.  I went for Skittles".

Joe's day-in-the-life of being a normal, forgetful nine year old boy while showing D' diligence.

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.