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.

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.

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.

"Joe, 911 Cannot Help You With Bolusing"

Yesterday... (a couple of summers ago ~ this is a repost because it is one of my favorites involving the phone and camp)

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 dripping with sweat. 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?"

*uhhhh*

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 ... no how... "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 PETE" and a up~and~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 had 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.

Today I Remembered The Shin Pads!

Before we get to Joe, Bridge got ahold of my phone the other day.  Here is what I found:

OK...onto Joe:

A youngish lady was standing at the back of an SUV parked at the field entrance.  She was checking in campers, while another fella sat on a fence post handing out soccer balls to each attendee.

Thought feed went something like: *Nah...I don't think this is where I tell them about the diabetes business*

They instructed us to move on down a wooded path to the fields.  Camp-goers were gathered down and to the left; the coaches were way out on the fields straight ahead.  Joe immediately peeled off to the left.  As for me ...  I was the only parent approaching the coaches.  I identified that I had a camper with medical needs.

Joe attended a half day soccer camp yesterday in 88 degree heat with high humidity.  The camp coaches are British, which in my opinion makes everything they say sound nice.  The camp is close to our home; it lasts from 9 to noon.

Me to coaches:  "My son, Joe Maher, has Type 1 Diabetes."

(for some reason I then kind of wiggle the Woodchuck side-to-side ... like the Woodchuck represents the diabetes)

I continued:  "What time does snack take place?"

One of coaches (in British accent):  "Haf pas ten."

The "haf" and the "pas" threw me off, so I asked to clarify:  "Ten?"

The young woman coach could see my confusion and responded:  "Ten thirty."

I then unzipped the Woodchuck and showed them my plan:  Glucometer/sugar/snack/track phone and pointed out my cell phone number, which is written right on Woodchuck's lid.  Joe would be checking a blood sugar at snack time.  He would call me with his number and he and I would discuss how much, if any, of his Go Lean Bar (snack) he would bolus for.  I then briefly went over lows, their immediate threat to his well being and pointed out my phone number again.

Me to the coaches:  "Do you want me to bring Joe over here so you know which one he is?"

Coaches:  "Nah...Joe Maher...right?"

Me, a little wary:  "Yea"  (wiggling the Woodchuck again) "he'll be the kid with this bag".

So, I left him.  I left Joe at a half day camp with no intention of returning until noon.  It was a first.

9:42am I get a call.  It is Joe.  It's his quiet voice; the I'm~not~feeling~good~and~not~having~fun voice: "I'm 84.  I'm calling for your opinion."

My opinion:  "Eat two Starbursts and then your snack now Joe...for free."

Apparently Joe had an opinion about my opinion: "No, mom... that is for snack time..." and then something was mumbled about the heat.

My other opinion:  "K.  Do four Starbursts then."

We hung up.  I was worried that he was just slumpily sitting on the sidelines not feeling well.  An 84 in the early morning is not a safe place for Joe's blood sugar to be.  He usually has a ginormous post-breakfast spike (like into the low 300s) and his settings are adjusted accordingly (i.e. he receives a 1:10 breakfast ratio...with a 1:60 morning snack ratio to put the brakes on the breakfast insulin).  After all this thought and careful planning that doesn't even seem like "thinking" or planning anymore because I have been doing this for like seven years now...I realize that I sent the little guy to soccer camp without shin pads.  Ugh.

I called his phone at 10:00, hoping that he would not pick-up.  If he did pick-up, it meant that he was not feeling well at all.  He didn't pick-up. 

10:30am another call from Joe:  "Hi, I am 117 and it is snack time."

Me:  "Eat the Go Lean for free...have fun! ... oh and sorry about  the shin pads."

Him:  Mumbling and grumbling about the heat.

A day-in-the-life of taking diabetes, but not shin pads, to soccer camp.

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 Phone...

About a week ago a good friend asked me if it helps knowing adults with Type 1? She wondered if knowing adults that have had diabetes since they were pre-schoolers gave me hope for Joe's future.

I don't really think that far ahead.

I suppose, I take it day-by-day.

It is hard to describe. When I send him off on his bike as I follow on foot, I wonder if I will find him in the street crumpled from a low. I am relieved when I find him pedalling with intense vigor. When he is left in the car recovering from a low as I run into grab Bridget from an activity, I wonder what I will see when I return to our van. I am relieved when I find Joe with his eyes open and his skin taking on color. When I call into the house, I pause and wait for a response. I am relieved when the lisp-kissed, nasally voiced Joe calls out. Always, in the back of my mind...in the periphery of my conscious, I half expect no response ... eyes closed ... pale integument ... scrumpled...crumpled ... in-need-of-immediate-assistance Joe.

**********

So, Joe has been giving camp a bit more thought than I knew about.

Last night, Joe's phone came.

Last night as he came up the stairs, Joe said "I feel low". He then headed into the bathroom. I stopped him. I told him to check a number first. I reminded him that he must "react" to a low feeling immediately. If he puts it off he could become too low to know what to do to help himself.

I don't know if it was the arrival of the phone and what it represents that initiated his response.

Perhaps it was the blood sugar of 63...and my reminder of the sequela of untreated lows.

Joe curled his long, lanky body up in my lap last night and cried in my arms. He cried because he is scared. He is scared to go to camp without me. He is scared to manage diabetes without "help". I explained that I will be around the rink quite a bit and we will figure this out as we go. I re-iterated that he is never alone. His family, his friends, his community envelope him in love and in support and in certitude.

I then did what any Temporary Head Pancreata In Charge would do ... I quizzed the shit outta him.

Me: "What do you do when you eat?"

Joe: "I look at the carbs."

Me: "What else? What else has to happen when you eat? Let me know everything that you do..." I wanted to make sure he knew the sequence of what needs to take place without me in the midst reminding him.

Joe: Right on the money with, "Check a number ... count the carbs ... bolus."

Me: "What if you are low?"

Joe: "I take 3 sugars or drink a juice."

Me: "What do you need to do 15 minutes or so after taking sugar?"

Joe: "Check a number to make sure I have come up."

Me: "Right."

Mentally and physically preparing Joe for his day-in-the-life at Hockey Camp with Type 1 Diabetes in tow. 8 years old seems so young to me right now.

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.