#DAM The 9 Lives of Joe

I have many fears re: Joe and diabetes. One of them is he goes into an empty locker room while low. I worry he'll lose consciousness and no one will find him for awhile.

A week, or so, ago...

At the end of hockey practice, Joe headed into the locker room. His Dexcom picked up his signal. The CGM app alarmed 43 and arrow diagonal down.

I sat on a bench in the rink's warm room, my eyes glued to the locker room door ....hoping, wishing I'd see him any moment ..how long should I wait? Another 2, 4, 5 minutes? Then what? Send in some random guy to see if he's still conscious?

😩*Joe would KILL me* 😬

So, I waited some more. Then, finally, I saw him lumbering out of the locker room. My heart.

#makediabetesvisable #t1d

The Game

5:18 am - no signal on his CGM.

I should check him.  If he is high, there is plenty of time to correct; a little over 5 hours.  I was careful not to wake him. He needs his sleep; especially today.  I lifted his ring finger and pressed the lancing device firm to his finger tip, hoping to avoid the need for multiple pokes to get a blood drop.  He was 386.  Not a great number.  I corrected and plodded out of his room and down the stairs.

Was the ringing tinnitus?  Or his POD?  I went to the bottom of the stairway and didn't hear anything, so assumed it was me and my aging ears.

5:38 am - Joe came down the stairs.  The ringing was his POD; it failed. The beeping from the POD woke him.  He's up.  It's game day.  It's State Championship game day.  I hate diabetes.

Joe changed his POD.  We bolused for the portion of the correction not given, due to the failure.  Joe ate; bolused for that too.

Around 8am - BG remained 386; a correction was given.  There was still 3 hours until game time.

9:30-ish am - BG 156. Two juice boxes (44grams CHO) were chugged in the car en route to the rink.

10:10 - BG 171.  Skittles (a fistful) was consumed.

10:50 - BG 263.  A good place to be for Joe to play the game.

All this work.  *sigh*

All this work...he endures daily.

He went down in the first eight minutes or so of the game.  His hip had been an issue the prior week.  It popped while he was skating and he went down.  The game was paused, while he removed himself from the ice.  He hobbled off the ice, off the bench, and into the locker room.  When I got to him...tears.  He was removing his pads; they were forcefully chucked into his bag.  Win or lose, more than anything else... he wanted to be playing with his team.  He watched the remainder of the game from the bench.  His team was the Runner Up for the State of VT; they lost the state championship 2-1.

I wish I didn't feel like this.  I wish I could just write that we've got this.  I wish I could say we are warriors and nothing gets us down.  Frankly, I'm disappointed for him.  And.  I feel a bit bitter.  He endures enough...just to get to the stupid game.  Sorry.

His blood sugar after the game, after all those carbs and then not skating...126.  Nice.

Kinda pissed off about the day-in-the-life.

Choke It Down

A couple of weeks ago, after a hockey game, Joe bought an apple strudel-y muffin from the rink snack bar.  He was going to eat it on our 30 minute trip home.

'My number is 223...60 grams..I'm not going to correct, but will cover the muffin.'

A 5.5 unit bolus was then cranking into his subcutaneous tissue to cover this muffin ... which he hadn't yet tasted.  I chimed in with a 'I sure hope you like it.'

'If I don't, I can either cancel the bolus and drink a juice ... or ... I'll just have to choke it down.'

A day-in-the-life of knowing you may have to 'choke in down'.

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.

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.

A Small Mention

Earlier in the morning he had played a hockey game.

Then he swam.

As he approached me from the hotel pool, I knew.  The stumbles in his gait gave me the heads-up before the quickly whispered "I feel low" was uttered into my ear, while I stood in the hotel lobby.

I tried to get him to sit and check.  He wouldn't.  He immediately headed up a flight of stairs to our room.  This act gave me some peace of mind, his ability to climb the stairs.  As he entered our room, he crumpled.  I checked.  He was 24.  Smarties were dispensed.  Time was waited out.  Another blood sugar of 45...juice...more time...another blood glucose of 36...another juice....  He had trouble lifting his arm to man the juice; his extremities were useless, weighted down from the lack of glucose.

This past weekend, Joe and I traveled to the Montreal area with his hockey team.  Traveling in itself  can present some challenges in managing t1d.  Add in hockey games and a swimming pool ... and ... well ... jabbing my eyes with fiery hot pokers sounds like a more pleasant experience.  Joe's blood sugars usually climb to the low 300s during hockey games, due to the adrenaline rush.  I  partially correct those highs and don't cover about 20-30 grams, or so, of post-game carbohydrates.  The swimming and the scant IOB from the small correction did him in.

A few hours after the BG of 24 incident:

"Joe, did you feel low while you were swimming?"

"yes..slipped...on the pool deck...my legs weren't working right."

"Why didn't you stop?  .... for sugar?"

"I thought I had more time." (before it got bad)

"Joe, you can't do that.  You need to stop when you feel that way and eat sugar.  It's dangerous.  You could die from a low."

"I could?"

"Yes, potentially.  You didn't know that?"

"No."

"You should treat the low right when you notice it."

A few hours after the 24/He played another hockey game.

I thought he knew lows could be lethal.  I don't know why I thought this.  I never really told him that.  I just assumed he knew.  Thinking back over the years, I realize I've avoided telling him that little tid bit.  There was no reason to when he was 3, 4, 5, 6, 7, 8, 9, or maybe even 10 years old.  Now there is.  He is a 12 year old boy developing quite typically.  He wants his independence.  I want him to have it.  It all scares me sometimes..though.

A small mention of death during our day-in-the-life.

A GOOD Day!

"Does he have some Gatorade that he keeps with him?" Hockey camp coach to me...this morning... in response to my informing him that Joe has type 1 diabetes.

"Ah...well yeah..."




I thought this facial expression goes well with the "Ahhh ...well yeah..." response.

Oh man, how I wish managing Joe's diabetes only entailed some Gatorade. 

Joe attended another hockey camp today.  It runs all week.  He is on the ice from 9am to 11am and then again from 1pm to 4pm.  The camp is named "Battle Camp".  Nice.

Fortunately, I learned a few things about Joe's diabetes and it's response to the intense activity of hockey camp a few weeks ago.  I learned how much to decrease his basal by, about how many free carbs he needs trickled in pre-camp and during camp.  I learned how little his insulin needs would be for lunch.

Here was my plan:

 

Yes, I realize it is blurry.  I just wanted to show you proof of how "organized" I can be. 

Here was my plan (the readable version):

CAMPER:  Joe Maher     Age:  10

Mother: Reyna Maher (802)598-XXXX  Father: Dave Maher (802) 598-XXXX

What is Type 1 Diabetes:  It is an autoimmune disease in which a person's own body (white blood cells) attack the insulin producing cells (beta cells) in the pancreas.  Due to the subsequent lack of insulin, the body's cells are unable to use sugars for fuel.

Treatment of Type 1 Diabetes:  Joe uses an insulin pump as an insulin source.

Plan for Camp: 

1. Joe must carry his diabetes bag with him everywhere during his day.  The bag contains a glucometer, SUGAR, and a phone.
2. My husband or I will come by between 10 and 10:30 to check Joe's blood sugar.
3. Joe will need to check a blood sugar and call me prior to snack time and/or lunch time (the phone is in his diabetes bag for this purpose)
4. My husband or I will come by between 2 and 2:30 to check Joe's blood sugar.

What YOU need to watch for:  If Joe becomes irritable, shaky, pale,  lethargic, or says he is "too tired" to do something he could be experiencing a LOW.

1. If you notice these signs (or anything out of the ordinary), please have Joe check his blood sugar and then have him call me.
2. If Joe will not check a blood sugar, have him eat three sugar tablets (located in his diabetes bag) and call me.

LOW BLOOD SUGAR ~ This can happen at any time to a person taking insulin.  It can be due to low carbohydrate intake, too much insulin, increased activity level, illness, and a hot or cold environment.  It is an immediate health concern.  If it is not treated with sugar the person can go unconscious, have a seizure , and/or die.

**********

 

So, here is how it went.  I fed him a 30 CHO gram breakfast and only bloused him for 15 CHO (1.5 units of insulin).  I then decreased his basal by 50% for 8 hours (the length of the camp).  During the day Joe drank a couple of G2s for "free".  I still have no idea when he chugs those.  There was not a "snack time."  He had only one time during the day to eat.  Lunch was at noon.  He received only 2.5 units of insulin to cover 120 grams of carbohydrate (CrAzY...his usual lunch ratio is a 1:18).

 

The numbers went like this, the BEST ever:

 

7:17am 127

9:15am 150

10:13am 163

12:02pm 139

2:11pm 197

4:49pm 336   I was a little bummed out about that one.  Did a half of a correction dose.  Dont' know the outcome of that yet.

 

A day-in-the-life of some hard earned euglycemia.

Retro-BUDDIES...Perpetuating the MYTH...

My buttocks were frozen to the rink bench... (about 2 1/2 years ago...)

Four times a week, for a total of about 5 to 6 hours per week I am rink side. I am there. I am a Super Hero (Wonder Woman perhaps?) Pez Dispenser on "stand-by". I am an every 30 minute finger tip pricking, blood drop squeezing, test strip toting, glucometer sporting M-A-C-H-I-N-E. I place myself in pucks-way, while attending to Joe's diabetes rink-side. If I lose any teeth or end up with stitches due to this gig, I am gonna be one pissed off D Mama. However, it is what is required to keep my seven year old diabetic son safe while he plays travel hockey for our town program.

So, back to my bum cheeks...

Well, actually back to sitting rink-side....

 

I was accompanied by a woman whom I consider a friend. I don't know her very well, but have talked with her, on and off...here and there for the past five years, or so. She is kind-hearted, sensitive, compassionate. I have no beef with her. Still don't...even after this:

Scene: I have just returned to my popsicle-glute-inducing-seat after a blood glucose check 30 minutes into Joe's hockey practice. I had given him 2 glucose tablets for a 189. (He still had some Insulin On Board (IOB) from dinner and he still has another 30 minutes of practice)

She: "Is Joe OK?"

Me: "Yeah, he just needed a little sugar to "boost" him."

She: Something to the effect of "Wow, that is a lot of work"...

Me: "Yeah, it is a lot of work. Joe's activity level definitely adds in some outlying variables here and there."

She: "So, didn't your Mom have it?"

Me: "No...no one in our family has Type 1, except for Joe."

Me: Continuing on..."It is an Autoimmune Disorder...HLA types...predisposition...environmental stimulus...virus...T cells attacking beta cells...no insulin...blah...blah...blah.....and blah (an extra "blah" for good measure)."

She: "I always tell "blank" (her son, keeping it anonymous here) that if he keeps eating sugar that he will end up getting it."

Me: "That is not the cause of Type 1." (shoot, she missed something between HLA types and Autoimmune Disorder)

She: "I know, but if I tell him that maybe he won't eat so much junk food."

Me: "Well...jeez... don't tell him that! You are perpetuating a long-standing myth and stereotype. Stop it!" (in a jovial voice...with a hearty slug to her upper arm for good measure).

What to say?  I found it interesting that it was being used as a "scare tactic"... and sad.

 

A day-in-the-life of dispelling myths, even if it is one person at a time.

Dog Food Arm

"Here it is...you can get it in different sizes to wrap up their paws."

"Ahhh...it is for my son ... he has diabetes ... it is to secure his pump site ... cheaper than the human stuff..."

So...I was at Pet Food Warehouse a few days ago... buying Vet Wrap (thanks Heidi) to secure Joe's POD until the Skin Tac arrives (thank you Penny) and the Band4Life ships (thank you Marla).

His arm is now covered in this green polka-dotted dressing and smells like dog food.  Not exactly what I had in mind when we switched to the POD, but I am still trying to remain positive and upbeat.  Not to mention we have gone through nine PODs and a whole vial of insulin (you lose the insulin that you put into the POD with site failures/losses)  in just under two weeks.

Site failures and losses aside, we had a successful week at hockey camp.  Originally, Joe's and my plan was to have him call me with blood sugar numbers and we would handle bolusing over the phone; he keeps a phone in Woodchuck for this purpose.  A couple of days into camp, I realized that a full day without some outside help was not a safe plan.  Hockey camp consisted of  two hours of dry-land training in the morning (soccer and field games).  Lunch was consumed at 10:30 (a huge issue for us, as his ratio at that time of day is usually a 1:60 to put the brakes on his 1:10 breakfast ratio).  After the 10:30am lunch, Joe would head out on the ice for 3.5 hours of drills and scrimmaging.  Each day I packed the same lunch.  Each day Joe would have 26 grams of Gatorade carbs (2 of the G2's) for "free"... I have no idea when he drank them.  Here is how the week went down:

Monday:  First day of camp.  I went into the locker room to meet the coach.  I explained that Joe had Type 1 Diabetes.  I asked if the coach had any experience with diabetes.  He did not.  I basically stated that if Joe started acting grumpy, lethargic, became shaky, looked dazed to have him drink a juice and call me.  I stated that Joe needed to have Woodchuck with him at all times and that Joe must be able to call me at any point during the day to discuss diabetes management. 

Joe was listening to the conversation and chimed it with a "what about the glucagon?".

"I think we will just go with a simple 911 call Joe".

I then explained to the coach that if Joe were to pass out or have a seizure to just call 911 (ya know, most likely the camp protocol anyway).

Monday's numbers and care went like this:

7:11am 230 (wake-up number).  I gave Joe 10 of his 30 breakfast carbs for "free".
8:01am 286 (camp drop-off number).  I reduced Joe's basal rate by 40% for 6 hours.
9:08am 256 (not sure why Joe checked here, he did not call me with this one).
10:21am 183 (pre-lunch number).  Joe had 20 grams of his 100 grams of lunch carbs for "free" and no correction.  The first day, he received 3.5 units of insulin for lunch.
1:07 pm 70  (Joe felt low during ice time).  He drank a juice (15 grams) and I had him eat 2 glucose tabs.
2:53pm141 (camp pick-up number).  Joe's POD had failed 1.5 hours prior and had not been delivering insulin.

Tuesday:

7:17am 98 (wake-up number).  10 of 30 grams of breakfast carbs were given for "free".
8:18am 201 (drop-off number).  Basal rate was reduced by 40% for 6 hours.
9:12 am 179 (Joe checked.  No call to me... not sure what he was feeling here).
10:24am 86 (pre-lunch number).  I just started subtracting insulin dosages at lunch time based on the previous day's data.  So we went with 3 units instead of 3.5units to cover the 100 grams of lunch.
2:47 pm 54 (pick-up number)  Welp.  My plan needed revision.  Joe did not notice his low while skating, so he did not come off the ice to do a check.  He agreed that I should come to do a routine blood sugar check during his ice time for the remaining days of camp.

Wednesday:

7:19am 77 (wake-up number).  Again with the 10 of 30 grams of breakfast carbs for "free".
8:18am 144 (drop-off number).  Again with the 40% basal reduction for 6 hours.
10:28 am 65 (pre-lunch number).  Juice (15 grams of carb) chugged by Joe and then he called me.  I had him eat his lunch without waiting for 15 minutes ... I told him to bolus 2.5 units after he ate lunch (I subtracted another 0.5 units from his previous day's lunch bolus).
10:49 am 139
12:58 pm 257 (Me checking Joe while he was on the ice).  I did nothing with this number.
2:51 pm 191 (pick-up number).

Thursday:

7:28am 137 (wake-up number).  Yep.  You guessed it.  10 of 30 grams for "free" for breakfast.
8:22am 203 (drop-off number).  Basal decreased by 40% for 6 hours.
10:34am 91 (pre-lunch number).  I stuck with the 2.5 units cuz that seemed to work on Wednesday.
11:05am 73 (Joe felt like he was "dropping").  He slurped down a juice (15 grams of carb) and then called me.  I told him to eat two glucose tabs as well.
12:51pm 150 (Me checking Joe while he was on the ice).  I gave him two glucose tabs.
2:48pm 300 (pick-up number).  Oopsie.  Should not have given the two glucose tabs.  And.  Nice.  Let's just add in another POD failure at 2:30 for some added fun.

Friday:

7:22am 117 (wake-up number).  Same...10 of 30 for "free".  Basal decreased by 50% for 6 hours.
8:26am 170 (drop-off number).  Glucose tabs x 2 given.
10:38 am 88 (pre-lunch number).  I subtracted another 0.5 units from his lunch dose.  So 2 units of insulin were given to cover 100 grams of carbohydrate consumed for lunch.  Joe's usual lunch ratio is a 1:18.  Impressive.
1:02 pm 194 (Me checking Joe while he was on the ice).  I did nothing with this number.
2:52pm 90 (pick-up number)  Booyah.  Only took me all week to figure out hockey camp.  Ugh.

I believe the consistency of food in type and amount of carb grams and the predictability of activity made this week manageable.  I've said it before and I'll say it again, Diabetes loves, loves, loves routine.  Joe did ask me on the third day if he could get lunch from the snack bar.  I told him "no".  With this amount of activity I was uncomfortable with "unknowns".  He did not grouse about it much.  He understood.  This was a huge accomplishment for us... not only numbers-wise, but in flexing some independence muscle in dealing with diabetes in a complicated situation.  It was a successful week indeed.

A day-in-the-life of managing fickle D' with my son Joe, who happens to have Type 1 Diabetes.

Drowning Out The Beep

"Just crank up the radio Mom ... you know ... to drown it out."

Dear Lord the BEEPING.



The Lumineers' Stubborn Love was cranked up a few levels.  The beeping was still piercing my tympanic membranes as we headed home from Joe's first day of Tim Thomas Hockey Camp...yesterday.

The POD, according to the alarm history, had stopped delivering insulin for about an hour and a half prior.  Joe could not hear the alarm, as his elbow pads and shoulder pads and helmet all must have muffled the sound.

Once we arrived home, I placed a new POD.  It was filled with about 100 units of Apidra.  Joe then headed for his All Star baseball practice.  He came to me during practice.  He felt the adhesive pulling as he threw.  I slapped some IV 3000 over the dressing edges of the POD.  About an hour later, he lost POD #2 at the pool.  UGH.

I dropped Joe home and headed to the pharmacy.  I could not bear to put in another one of those things without a different plan.  So, at the pharmacy, I didn't find much help.  I bought some "waterproof" tape.  So Joe's current POD is in and secured with waterproof tape all around the edges.  So much for "fitting in" between the freakish beeping and his mummified arm ...this thing is requiring a lot of extra support right now.

I texted our Omnipod Rep.  She recommended Skin Tac; samples are on the way. 

Despite site issues, Joe's numbers have been steady (like 70 to 171 kind~a~steady) even with 3+ hours on the ice and dry land training.  His basal has been decreased by 40% for the 6 hours he attends camp.  Breakfast is lightly bolused for (10-15 grams of it given for "free").  20 grams of Lunch is "free".  And an extra 60 grams of carbohydrates are consumed throughout his 6 hour camp day in the form of Kashi bars and Gatorade. 

Joe calls me with each blood sugar and we discuss the bolus amount.  He has to call me from the warm room as there is no cell service in the rink locker rooms or ice-side.

A day-in-the-life of drowning out the beep and taking diabetes to yet another hockey camp.

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.

The Wounded Soldier...

Note: Usually I have plastic skate guards rink-side and sugar in my pocket ... and the glucometer right inside the garage door on the mudroom shelves. I have become a bit 'lax.

A few curses were smattering my thought feed as I was crawling through our mudroom and into our kitchen. I must have looked ridiculous and I was second guessing the amount of tri-tip and spicey pasta that I had consumed for supper. Hockey helmet and skates were donned. I was desperately trying to keep my blades from touching the slate and wood flooring. I was trying to protect my blade edges.

I was berating myself a bit. You would think I would always be prepared by now. It has been over five years since Joe's diagnosis. Five years of thinking and planning and anticipating lows. Five years of sugar stashing. Five years of being on a constant, slightly nagging state of alert. Five years of bullshit that is my shit because I am my son's pancreas. So, you would think I would have my "Joe~Skating~On~The~Backyard~Rink~While~I~Am~Skating~On~The~Backyard~Rink~Blood~Glucose~Chcking~System" initiated for the 2011/2012 skating season. Welp, I didn't. Hence the "double amputee...wounded soldier" crawl through my home, while helmeted accessorized by a cage nonetheless.

Blindly, my hands ferreted the kitchen island. Yep, there it was. The glucometer. I inched my way, on my belly, back through our home ... out the garage door ... and out to the rink. Joe skated over. The glucometer was readied. 5~4~3~2~1. A 247 was obtained.

"Your good to go Buddy ... not low ... let's get on with some one-on-one!"

A day-in-the-life of the behind the scenes in pancreating for my son Joe.

About The Phone...

So, his phone does not get service at the rink. Oh how I wish diabetes management was "black-and-white." It is difficult to explain the complexity of basic diabetes, let alone diabetes management on 'steroids', which is what managing this much activity is like...and add in leaving him for periods of time without a 'trained' person and no phone...well, I have been lurking more than I anticipated.

**********

The car-ride to camp yesterday was much different than the car-ride to camp on Monday.

Monday's drive sounded something like this: "Joe decrease your basal by 40% for 7 hours"... "Joe don't correct for lunch if your number is 140 to 220" ... "call me if your number is over 220 because we should just do a partial correction"... " just call me for all boluses, call me for snack times and lunch time if I am not there."

Yesterday's car ride went down like: "Joe you gotta keep moving when you are in defensive mode. You need the momentum to stop their push" .."Skate with the puck" ... "You, Joe, are an incredible skater and you know mom does not hand out compliments readily" ... "Try some shots from center ice" ... "Joe, your 'behind the net defensive move' is not a 'move'. Don't let yourself get trapped behind the net!"

Do you see the shift from Day 1 to Day 2?

From diabetes to hockey?

We are doing well.

First off, Joe loves Hockey Camp! The schedule consists of ice time from 8:30am until 11:30am. He eats lunch from 11:40 until noon. Then there is classroom time and land drills for the remainder of the day. The camp is fast paced and the activity level is up there. The diabetes management has been similar to how I ended up managing Hockey Tournaments during his past season.

Day 1:

I instructed Joe to decrease his basal by 40% while driving to the camp. I had intended to check his pump when we arrived to camp (I didn't...this is some foreshadowing).

8:30 am: Pre-ice blood sugar was 236, we did nothing

8:50 am: I was watching Joe from the warm room. He stepped off the ice and checked a number. He was 208. He did nothing.

9:10 am: Again, I watched him step off the ice. He was 150. He shot back 14grams of Nerds.

10:20 am: While the ice was being groomed, Joe came off for a snack. He was 53. He drank a juice. I then checked the basal reduction that wasn't a "reduction". Joe had accidentally set the pump to give him 40% more insulin per hour. I could have beat myself up here. I didn't. Joe and I treated the low and never looked back. Joe was really starting to feel the hunger pains from the low. He ate his F-Factor Bar (26 grams of carbs). After realizing our error and knowing he was headed back onto the ice for another hour, we did not bolus for it.

10:50 am: Blood glucose was 170.

11:40 am: As I entered the locker room Joe was programming his pump. His blood sugar was 218 and he was going to eat 88 grams of carbs. I had written a note to only bolus for 80 grams. I did not go over corrections. I told Joe to only do a carb bolus here. I did not want him to correct for the 218. I was concerned he would go low.

1:20 pm: While I was gone, Joe checked a number. He was 102. He took 2 Starbursts.

2:50 pm: Joe checked a number as we pulled out of the parking lot. He was 150.

*From 4pm until 6pm Joe was in the 300s. I find this to happen when we reduce basals and boost aggressively. I did not know how his blood sugars would respond to this particular situation. Tomorrow I will incorporate a post-camp basal increase into our "plan".

Day 2:

I decreased Joe's basal by 40% before pulling out of the driveway.

8:30am: Pre-ice blood sugar was 221 (nice)

9:30am: I am spying from the warm room. Joe steps off the ice for a routine check. 209. He does nothing (which is what I told him to do for that number).

10:20 am: I help Joe with snack. He is 150. I tell him to only bolus for 16 grams of the 26 gram F-Factor bar.

11:40 am: BG 136. Joe boluses for lunch giving himself 8 grams of carb for "free".

1:10 pm: BG was 213. He does nothing as he was going outside for drills.

2:20 pm: After the drills he checked himself. He was 99. He took 8 grams of sugar.

*Per previous experiences and Monday's post Camp highs, I decided to crank up Joe's basal by 50% for the next 3 hours. His blood sugars for the afternoon stayed in the 150s.

What I am learning: This whole letting Joe go out into the world without his Head Auxiliary Pancreas is going to be a "process". There will be mistakes. The numbers will not be perfect. Joe has "basic diabetes" and even "not-so-basic diabetes" down. I know Joe. I know that having to march from the locker rooms to a land-line in the front office to call his mom every time he boluses would take away from his first Hockey Camp experience. Admittedly, I have been lurking in the warm room. I check in with Joe three times daily. For snacks and lunch I am by his side. The "free carbs" with his snacks and lunch depend on where his number is. Also, I want him to not correct for blood sugars that range from 140 to 220, but I want the "negative" correction for blood sugars less than 120, and I wanna only partially correct for blood sugars greater than 220. Yes, I have issues.

We are doing this. Joe is doing this.

A day-in-the-life of trying to be a 'Remote Support Pancreas'. It is a tough job, but it must be done to allow my son to grow.

Ah...9-1-1...Q&A Session With Joe

Good, the correction is kicking in. "Dexter" just showed a "175 smooth".

It is 4:30 am. I have been up since 2:30. Joe was high (blood sugar was 231), not "correctable~night ~ high." I usually only correct for blood sugars over 250 during the night out of fear of lows. This is a special night though. I did not want him to wake-up high and have "correction~insulin" on board along with his breakfast insulin as he starts his first day of Hockey Camp.

**********

Yesterday...

I was shaking my head a bit, in disbelief, at myself, dressed in black yoga pants, a long sleeve shirt, with a jacket tied around my waist. I was sweating. It was 90 degrees. I was driving Joe to a rink.

Looking in the rear view mirror, I saw Joe peering down at his phone; thinking about camp I assumed. He then started pelting me with questions. "So, I call you first?" "What if your phone is off?" "What if someone makes you turn it off?" "Then I call dad?" "What if his phone is off" "Then I call 9-1-1?"

*Oh FUdGe-sickles*

My responses were as follows ... "Yep, call me first... but really Joe, I am gonna be there with you most of the time." ... "My phone won't be off. It never is when you are not with me." ..."No one can make me turn off my phone...nope, no one ... " (I would go all D' Mama Honey Badger on them if they gave me any guff) "Nope not even a policeman could make me turn it off." "Yep, dad." ... "I'll tell dad to keep his phone on this week."

Then to address the 9-1-1 question. Oy.

"Ah Joe, the 9-1-1 is on your phone to remind coaches or teachers or friends to call for emergency assistance in case you are unable to help yourself with your diabetes."

Joe replied "Well should I call them if I cannot get a hold of you or dad?"

Clearly my vague response above isn't gonna cut it. I am not one to mince words and have been open and honest with Joe about Type 1, so why am I struggling here?

"Joe please...please...please (insert a silent "For The LOVE of GOD" and a up~to~the~right~sideways heavily mascara'd fringed eyeball roll here) DO.NOT.CALL 9-1-1 if you cannot get a hold of mom or dad while you are at camp."

Joe then asked "Well when would my coaches need to call them?"

"Well Joe, they may need to call them if you went so low that you could not help yourself ... like if you went unconscious or had a seizure. The chances of that happening are rare Joe. But, we have to be prepared in case. Right?"

*please say "right"...please say "right"...please say "right" ... and drop this uncomfortable topic*

Joe then has the notion that 9-1-1 could 'help him' with bolusing if he cannot reach me. "Ah, Joe... (where to even begin)... 9-1-1 will not know the first thing about bolusing you. They can save you in life or death emergencies, but please, please, please do not call them for help with bolusing or carb counting. Trust me on this."

A day-in-the-life of hoping Joe doesn't call 9-1-1 for Diabetes Management instructions.

Check out the awesome Camp Tips from the DOC here.

The Ramp

"Joe, pull Dexter outta your pouch and eat your bunnies!"

I wonder if I sounded a bit "nerdy" to the teenage boarders and skaters and bikers? Joe took his bike, his Rollerblades, and his skateboard to our local Skate Park yesterday. He consumed about 45 grams of free-carbs just to keep his blood glucose in the 70s and 80s.

The ramps and jumps are a bit intimidating at this particular park. Joe flirts with them a bit as he rides and rolls over the lower portion of the ramps. He is slowly creeping higher and higher up the inclines. His confidence wanes when he is on ramps that are over 5 feet. He rides and skates up them without hesitation. It is the going down that seems to make him stop and take pause.

I was encouraged by his reserved caution, as I looked up and watched him struggle with going down a rather high ramp while he sat at the peak perched on his bike. I could see the desire, the want, of conquering the fear of going down. The internal pull of his fear was visible. The older boys were encouraging to him. I stood back and watched the conflict conveyed through his eyes, his face, and his body. After many minutes, Joe decided he wasn't ready. He slid down the ramp while supporting his bike. He did not seem disappointed in himself. He simply stated "I am just not ready for that ramp".

Which brings me to my post...

A staff member from the Tim Thomas Hockey Camp called me yesterday afternoon. The connection was static-y, which in part, added to my feeling of isolation as I tried briefly to explain Joe's situation with camp, Type 1, lows, exercise.

I started out with a "thank you" for calling me back...blah, blah, blah..."My son Joe is in your camp next week in Vermont ... blah" ... "He has Type 1 Diabetes...insulin pump...blah...blah...blahbitty"... "Do you have a trainer that travels with your staff?"

Static-y...wind-ily...connected staff member responds with "well we do have someone that is CPR certified."

*ugh*

How do I even go into anything about anything with this guy over the phone?

I found out that they divide up the campers by age and ability. The groups will consist of about 15 kids. A coach will be assigned to stay with the group throughout the day as the campers go through different stations. They will be on the ice for 3 hours and then they will be off the ice for 3 hours for outside play, hockey videos, lunch...etc. Joe's schedule will not be known to me until I drop him off Monday morning.

Upon conclusion of the phone call, the pleasant staff member did say that I could give Joe's coach my cell phone number when I drop Joe off on Monday. I almost choked on my spittle at that point, thinking "you bet your bippy he is gonna have my cell phone number and a crash course on lows."

Explaining to the general public that a low blood sugar is something that must be dealt with immediately is complicated. It is difficult to convey that Joe may become a bit "off", confused, or be totally "normal" with a dropping glucose level. The lows can come on suddenly and they must be tended to...and Joe may not be in his right mind to help himself in this situation as the only fuel source for brain cells is glucose. The lows are one thing. Then add in what must go into eating: the blood sugar check, the carb counting, the bolusing, the "he must eat everything" ... and ... the compensation of insulin doses for activity, well, it is too much to communicate in an abbreviated manner for a week long camp.

I am looking down the "ramp" much like Joe was yesterday.

Am I ready?

Here is what I have come up with:

• Joe and I talked about a basal reduction for the day of 35% (I said 30%, he said 40%, and then he compromised with 35% ~ fine).

• I tweaked the Play Date Cheat Sheet for camp, keeping it simple...1 page.


• I will briefly go over the Camp Day Cheat Sheet and emphasize the importance of treating a low blood sugar with Joe's coach. I will have my cell phone number highlighted at the bottom of the Cheat Sheet.


• I will have Joe carry Woodchuck everywhere with him. It houses his glucometer and sugar sources.


• I am going to only partially bolus for breakfast. My biggest concern is Joe skating with breakfast IOB circulating. He will drop over a 100 points in 30 minutes with breakfast IOB lurking in his system. I can always correct a high before I leave him if need be.


• I will pack separate bags for snacks and lunch. Each bag will contain a carb count to make it simple for Joe to bolus.


• Buying TracFone today or tomorrow so that Joe can "practice" calling me over the weekend.


• I think I will go in every hour or hour and a half on the first day and go from there.

I wanna make it down the ramp. I wanna have the courage to push off and go. However, I think I may need to slide down the "ramp" on my butt.

A day-in-the-life of a glimpse of what it takes to send Type 1 to camp or anywhere really. It takes courage.

1000 Words..............

I've had this picture sitting in my gmail account for about a month now. It was today that I actually really looked at it. I noticed the signage to the left. I know of no one that "Takes On LIFE" better than my number 1, Type 1 kid.

Go JOE!

A day-in-the-life of AWE.

Another FIRST

Mondays and Fridays are "running days" for this Mama Pancreas. I usually ask Joe how far I should run as I drive him to school. He usually sticks somewhere between 7 and 10 miles with his responses.

Yesterday:

Me: "Joe, how far should I go on my run today?"

Joe: "How far did you go last time you ran?"

Me: "7 miles."

Joe: "Go 8...you should always try to improve on yourself." (Is he for real?)

Me: "Joe it did snow like 10 or so inches in the last few days. The path will be very difficult."

Joe: "OK, 7.5...that is still better than 7." - UGH.

So, I dropped Joe off. I headed home. I ran. I use Yaktrax (thanks to my brother and sister-in-law's Christmas gift and my sister, Tara's advice to run with them) on the snowy, icy Vermont sidewalks. I feel like I have been "popped" into four-wheel drive with those bad boys strapped to my feet. It was cold. The high was around 14 degrees. I ran...and ran...contemplating the 8...miles...

And my son...

Joe has a hockey tournament this weekend. It is out-of-town. It is his first. I was going through the "diabetes supply list" and checking it mentally, as my heart was like pounding out of my chest from the exertion of the run. I was then thinking what if Joe goes down on the ice rink, or more worrisome...goes down and passes out. Then I questioned... Would I just run out and jab him with Glucagon? Check a blood glucose first? I don't know why this vision went through my head. It is fucking hockey afterall. He goes down a lot. He is Joe. He gets right back up and he skates. But, anyway...I decided during my whole "I am dying from sloshing and sliding and slushing through the heavy wet snow, while running 7+ miles" psychotic-induced-haze that I would check a blood sugar first and then stab him with the Glucagon , if need be. For some reason I was then thinking of head injuries, and cerebral edema, and Mannitol, and serum osmolality, and if I accidentally made his glucose too high that it would not allow extra doses of Mannitol to be given to decrease intracellular edema. Ahhhh...yeah...a thought process infiltrated by my old Surgical Intensive Care nursing days. I am not even sure if I remember all of that correctly, as my brain has been taken over by the pickl-y penis-y looking organ, the pancreas, and by motherhood.

Back to this weekend...

As many of you D' Rents know an out-of-town athletic event will provide many blood sugar challenges. The activity level of two games a day... along with the hotel pool... and the added bonus of eating out ... and the wild ass guessing of Joe's carbohydrate consumption ... will be no easy feat. I am ready. I am thinking of myself as a Linda Hamilton (Terminator-y) kind of Pancreas this weekend. I have packed extra sugar sources, extra snacks, extra juices. I packed double of all supplies needed. I packed a back-up glucometer (remember this). I packed 10 transparent dressings to secure his pump sites while swimming. I am prepared to crank that basal up by 100% for the three hour drive. I do still need to insert a new Dexter, as Joe's current one is taped into place and is literally hanging on by the tip of the probe (I think it is day 10 anyway...it is the first Dexcom sensor that has been this accurate in a long, long time...I hate to part with it).

So...

Although I am facing this weekend with a bit of trepidation, I am also looking forward to putting yet another first behind us. I admire Joe's heart, his love of the game, and his spirit to try. He enjoys a challenge and he makes all of us that know him put a little more "umph" into our everyday lives.

So, did I run the 8 miles? Nope. I ran 7.05 miles and then I made Joe and Bridget some chocolate chip cookies.

A day-in-the-life of gearing up for another first with "D" in the picture.

P.S. I'll be out of the loop for the next couple of days. I hope you guys have a great weekend!

Goalie Pads, Ice Skates, Fire, And A Low Joe Don't Mix

As I was slipping and sliding trying to help Joe sit down, I realized this was not an "ideal" situation. You know, the scenario mentioned in my title. Apparently I should have added that I, too, was on ice skates to really give you the full picture of the precariousness.

Joe had a rough day Sunday. Well "numbers-wise" it was rough. It was a day we had been looking forward to for weeks. It was a day that we had been waiting for. You know those days where you don't have to go anywhere, or do anything? It was a day where we, The Maher family, could hang out in our backyard and skate and sled and listen to Christmas music ... and ... I could carry Joe's heavy carcass laden with goalie pads ...and...I could lug a blade footed noodle legged low Joe across the ice, out of the rink, across yet more ice while still supporting his dead weight, by a fire pit, solo...with skates on.

An hour before, as I looked out the kitchen window I saw skate blades facing up. Jow was splayed out on the rink like an elongated starfish. The white texted "Maher" and number "8" on Joe's Red Wing jersey were facing skyward. Joe was facing ice-ward. Joe was low. He had been having some behavior issues on the ice and when Dave checked his number, a "61" was revealed on the One Touch screen. Sugar was dispensed. We continued to skate and play.

Did I recheck that "61" 15 minutes after we treated? You know, like the "Rule of 15s" states? Ah, I'd like to say "yes", but ... no, I didn't. We were skating. Joe was the goal keeper. I was taking shots on him. I lost track of time. We were having fun. Hell, he should have been OK...right? Dave just gave him 20 grams of sugar.

Then...

No ascending and descending in octaves "mmmooOOOMMM I FEEL LLLoooowwww!" The voice that we all know, that Joe is low "low voice".

No verbalization of the low. All of a sudden he sits on the ice and says "I cannot skate any more". Huge red flags go up and alarms go off when Joe says he cannot run, skate, sled, bounce, careen, bike, scooter, boogie board down water slides, skateboard with cones attached to his appendages. He is low...he is low NOW and he is dropping.

So...

I don't know why I didn't just leave him on the ice, but I decided to lug him to a chair...I lugged the cinder-block outfitted in ice skates and hockey gear with goalie pads across the ice, out of the rink, by the fire, and positioned him in a chair while wearing skates myself. I guess in my idiotic thought process, I felt he should be "comfortable" while low. Apparently being cold, laying down on the ice while low was not an option. There was no more sugar left in my coat pockets. I knocked on the kitchen window giving Dave the "thumbs down" signal, the one we use for "Joe is low" when we are not within audible range of one another. Dave ran out with sugar and then grabbed the glucometer.

5-4-3-2-1 and a "51" resulted...

Joe was shaking. His head was down, supported by his quivering hands. It was an ugly low. The type that, thankfully, doesn't happen too often. But when it does, you are reminded that this disease will have you down on your knees begging for mercy time and time again.

Joe and Bridget Skating...

Bridget Sledding...

A day-in-the-life of family fun, never to be let be by "D".