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.

Maturi-D'

Over the years, I've tried to teach him the proper way to do things.  A healthy diet was discussed and modeled.  But... he did his own thing, choosing to eat from the "Brown and Beige Club" for years - chips, bread, mac and cheese, chips, crackers.  Now, lean meats and vegetables are consumed regularly.  Blood glucose checks were encouraged multiple times daily.  This has been his routine for the most part, but with some nagging.  Rotating pump sites, took years; like 9 to be exact.

The lumps and bumps are persistent in one arm; his right.  Until this last year, he used the backs of his arms exclusively for pump sites and CGM sites.  He was reluctant to try a new area.  Reluctant should be translated as "refused".  

Several months ago, Joe first found these lumps.  I explained it was most likely due to lack of site rotation - lipohypertrophy. I encouraged rotation, but didn't say much more.  A few weeks later...

 

A little more maturity in the day-in-the-life.

The Solo Sleepover

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

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

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

It was the sleepover where I really struggled.

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

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

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

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

The Dexcom Share was on through the night.

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

>

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

A Free Meal

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

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

Outta habit, he went to do a check.

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

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

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

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

Joe was kinda quiet here.

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

A few more seconds of silence.

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

Enjoying a meal without doing his day-in-the-life.

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.

Even While Running A 1/2 Marathon

I checked his blood sugar, fed him, and bolused him.  I then set the stove clock to alarm in two hours to remind him to do a blood sugar check.  He was to call me with the resulting number...


The Marimba (iPhone default ringtone) started-in around mile 9.

As I picked-up the phone, the runner next to Dave and I said 'ah helllllo  .... you are a little busy right now?'  The call was from Joe.  It was during a half marathon that Dave and I ran a couple of days ago.

Me...cutting to the chase:  "What's your number?"

Joe: "What?" (Bo-jangles...why did he think I had him call me after his blood sugar check?)

Me:  "What is your NUMBER?"

Joe:  "Oh...199"

Me:  "Are you going to eat?"

Joe:  "No."

Me:  "K.  Eat two glucose tabs."  (the 199 would bottom out without sugar)

Me:  "Love you baby."

Joe was 132 when we arrived home about an hour later.

A day-in-the-life of running a half marathon and satellite pancreating.

One Third (It's a BIG "Hunk")

In response to "Overkill or Good Diabetes Parenting?"

Store hours?  I wish.

I wish that diabetes management had like store hours or something.  Like maybe Joe's beta cells could "magically" come back to life from 9pm to like 8am.  Ya know?  Like every night Joe's glucometer and insulin pump and CGM could put up a "CLOSED" sign.

Yea...right...

What is 8/24?

I believe it is one third.

I believe it is one third of our 24 hour day.

If it is one third of our day~in~the~life of living with diabetes, guess what?  It is one third of our A1C.  I guess I shouldn't say "our"...it is one third of my child's A1C.  One third is a big hunk of my child's well being.

I am not going to be wishy-washy here.  I am not going to say do what works for you and your family.  I am not going to.   I am going to say that I think night checks are part of managing diabetes.  I don't do night checks solely out of fear of lows and out of fear of the dreadfully named "Dead In Bed Syndrome".  I also do them for trending blood sugars and adjusting basals accordingly.  And.  I do them for correcting highs as well.

It is a third of one's A1C  during a chunk of time that would normally have "predictable activity" (sleeping), with "predictable carbohydrate intake" (not eating, because sleeping), and with, for the most part, a "predictable amount of insulin" (no carb intake, because not eating, because sleeping) on board.

Our nightly routine here is:

Dave checks Joe's blood sugar @ 11pm (the following assumes no IOB and no CGM):

• If Joe's blood sugar is less than 70, we treat by using the rule of 15s.
• If Joe's blood sugar is 71-100, we give 8 grams of CHO
• If Joe's blood sugar is 100-250, we do nothing.
• If Joe's blood sugar is greater than 250, we correct and then set an alarm to check Joe's blood sugar in 2 hours.

Dave or I checks Joe's blood sugar between 2am and 3am:  We use the same actions as written above.

A day~in~the~life of managing my son, Joe's, blood sugar at night.

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.

Losing The "Visible" LEASH

While "Cutting The Cord" has a nice ring to it, I think perhaps they could also name it "Losing The Leash".  Joe switched from the Animas Ping to the Omnipod yesterday.

 



 

Originally ... six and a half years ago .... when I chose a pump, I was making that choice for a three year old.  I was making that choice for a three year old on very minuscule amounts of insulin.  I chose Animas because of the pump's ability to give basal insulin in 0.025u/hour increments.  I also recall there was some IOB issue with the Omnipod at that point, as in ... it.didn't.keep.track.of.it.  We have been happy with the Animas Ping: great customer service, minimal site loss, minuscule amounts of insulin delivery.  What I did not love about Animas was how Joe almost off-ed himself on accident, by inserting a full cartridge that was connected to his body into the pump with fully advanced piston, while he was at school...not the pump's fault at all...user error, but still scary.  We also had some "loss of prime" issues, which actually led to the previously mentioned almost off-ing himself issue.  Joe was trying to fix the pump issue at school and did not want to embarrass himself by disconnecting the tubing from the site, which was inserted in his butt cheek.  All-in-all though, we have been loyal Animas users.  Joe wants to try out life without a fanny pack strapped around his waist.  Joe wants to try a life without bulky plastic-y devices shoved in his pant pockets.  I understand.

So...here we are...here I was yesterday...pre-programming the Personal Diabetes Manager (PDM) for our pump start.

With the Omnipod, the basal increments are in 0.05 u/hour.  So, I currently have like 15 basal rates going (yes...head is hung down in shame).  There are two areas in Joe's day where his basal rates were at 0.075 u/hour and at 0.125u/hour.  I was not comfortable just cranking him up or down by 20 to 33% of his current rates.  I decided to do the back~and~forth basal thing for those increments in time (i.e. 9am - 0.15u/hour, 10am - 0.1u/hour, 11am 0.15u/hour).

Joe has never inserted a pump site on his own during his history with diabetes and pumps.  Yesterday, during his pump start, he did it.  He drew up the insulin.  He filled the POD.  He cleansed the site area.  He adhered the POD to his body.  He pressed the button on the PDM to "insert".  We hugged...yet another "first".

After the pump insertion, Joe went back to the lobby of the clinic.  There are computers out there.  The Rep and I continued to go over pump questions.  As  I was scrolling through the "temp basal" section of the Omnipod, I asked why it only went up to a 95% increase in basal.  I was explaining that I would crank Joe's basal up by 125% on the Animas Ping for road trips.  I wanted to show her what the temp basal program looked like on the Animas Ping...  I then realized that we had just sent Joe to the clinic lobby hooked to two pumps!  His Ping AND the POD!  Oy!!  I ran out and had Joe remove the Animas pump and his Tallygear belt.  He smiled and simply stated "Freedom".

Back to the temp basal...so I showed the Omnipod Rep the Animas pump's temp basal program.  She stated the POD could not go over a 95% increase.  I'll figure that out with bolusing or making a new basal program for travel days.

Now that Joe is "free", he is requesting a break from Dexcom.  He doesn't want to be tied down by carrying the receiver.  I have been quite liberal with Dexcom "breaks".  I told him that I preferred he wears it, but he doesn't have to wear/carry the receiver all the time.  He's been tied down to equipment for 70% of his life.  He is respectfully asking for a little break.  I get it.

A day-in-the-life of loosing the visible leash...the invisible leash remains, DIABETES.

"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.

Going Well!

I promise I did not "wear" the headlamp as I dropped off Joe to his friend's house for the sleepover last evening.  However, for your viewing pleasure I did ....

I thought the "head lamp" was a thoughtful token for night-check-ease.  Salami and pickles were brought for Joe's snacking pleasure to veer him away from heavy carb snacking into the night.  In general, Joe does not eat carbs after dinner.

So far so good.  I have not heard from Joe or Joe's-friend's-mom since 10:30pm last night.

Up to that point Joe had consumed pizza (2 slices), ice cream (1/2 a cup, which he thought was a cup and we bolused for a cup, and he then called me back to say it was 1/2 a cup and we then made up the difference with Starbursts, which I believe ultimately lead to a low...but whatever), salami, salami wraps (cream cheese spread on salami that is then rolled up into little cigar-shapes), and pickles. 

His numbers have ranged from 55 to 270. 

I'll take it.

A day-in-the-life of support pancreating remotely.

Fickle D'

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

"144"

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

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

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

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

Joe had a rough diabetes day yesterday.

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


He handled it with grace.

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

The "One-Eye"

I think I was pulling the "one-eye"... you know...the middle of the night check "one-eye"?  It is where I only open one eye so that I can traverse the walk to Joe's room and sift through his d' supplies to grab a blood sugar check, while tricking myself that I am still sleeping b/c one eye is closed.  I think I was pullin' the "one-eye" at 6:07am this morning as I stumbled back into my room...from Joe's.

Dave to me:  "What are ya doin'?"

Me:  "Just checkin' to make sure Joe was still alive...he is not in his room...so he must be good."

Yes.  I am serious.  This is what I said.  This is what goes on in our d' home.

Here is what happened...here is what went down.

1:47am - I woke.  On my own.  I usually do in anticipation of the alarm.  I set my alarm for  3am,  but usually wake an hour or so prior; my internal clock so-to-speak.  The "one-eye" was employed per usual.  Joe's blood sugar was 280.  I went to bolus...I cannot remember how much the pump called for.  I think it was like 1.8 units.  I scrolled up the insulin dose, pressed OK.  Then that "dunh..nah..nuh...nah...nuh...nah...NUH" alarm went off.  You know (Animas users) that alarm that means something is up.  I looked at Joe's pump.  It said something to the effect of "there is not enough insulin left in the cartridge in this pump to give that dose you just scrolled up to".  There was 1 unit left in the cartridge.

You and I both know what I should have immediately begun to do.  You know.  Like open the other eye...traipse down the stairs...get out a new cartridge, a new set, an alcohol pad,  Site Prep,  IV 3000, and oh yea...the insulin.  You and I both know that I needed to be putting in a new site.

Now, please don't get judge-y here.  But, you wanna know what I initially did.  Yes, it is embarrassing.  It is embarrassing for a few reasons:  1) I am a nurse 2) I have been a d' rent for a pretty long time and know better and 3) this is my child and I should be taking decent care of him.

Ok...

Here goes...I stumbled, "one-eyed" back to my room and into my bed dividing 1 unit by his basal rate of 0.3 units/hr.  Hmmmm...I figured out that should get him to about 5am...with the non-corrected 280....knowing that I was hoping to sleep into 7am.  Then I actually was wondering how long it would take the ketones to climb...and finally I thought of the ICBCs (kinda going all "Princess Bride" here...you remember the ROUSs ~ Rodents Of Unusual Size).  ICBCs translates to Inevitable Cartridge Bubble Clingers.  So, technically Joe may only have about 0.5 units left in that pump.

Eyes (both of 'em) were opened.

Bed was exited.

Stairs were traipsed down.

Supplies were collected.

Site was changed.

280 was corrected.

The CARNAGE..  Note:  No Glucose Tabs were used in this scenario...They were toppled over from a previous night...left them in photo for "drama factor"



Technically, I should have set an alarm for 4-ish or 5am.  Too tired to set the alarm, I was relying on my internal clock to just kinda jostle me awake around then.  It didn't happen, hence the check for life at 6:07am.

A blood sugar was finally checked at 8am.  A 107 graced the glucometer screen.

A night-in-the-life of managing type 1 diabetes for my son Joe. 

Cyclone Holding A Chicken?

My message to Joe's school's attendance line, which is manned by a friend, this morning (names have been changed for "privacy-sake"):  "Hi Lucy.  Joe will not be at school today.  He is still feeling under the weather.  He will, however, be at the play again tonight as long as he doesn't spike a fever.  And... George (Lucy's son) made a great monkey last night!"

Joe's school of fourth and fifth graders have been working diligently over the past several weeks to put on "The Wizard Of Oz".

Joe was/is part of the backstage crew... AND ... wait for it .... wait for it ... wait for it.....  He got the part of .... "The Cyclone".  No, the irony is not lost on me. 

Prior to last night though,  Joe had been telling me he was "The Tornado With A Hay Bale."  Uhhh, ok, so I am not all that artsy and I am by no means a meteorologist ....ah sooooo .... I really did not think about the "cyclone"/"tornado" thing and I just had visions of Joe twirling all willy-nilly across the stage with a hay bale  leaving a trail of straw in his wake.

So, the opening night was last night.

Yesterday, Joe had come home from school sick.  No fever.  Just a scratchy throat and lethargy.  He rested throughout the day and felt well enough to participate in the play last evening.  His blood sugars had been unpredictable and then subsequently on the rise.  At 4:30-ish I fed him dinner.  His blood sugar was 350, negative for ketones.  I smacked him with a good 4.5 units for his blood sugar and a cup of mac and cheese.

Off to the play we went.  Joe busied himself backstage and with his pals.  I hogged-up a bunch of seats and proceeded to wait for the hour until show-time.  Joe came by once to check-in with me.  No diabetes tasks were undertaken.  Dave, Bridget, and friends eventually arrived and filled the seats around me.  The play started.  I did not see Joe with the backstage crew.  I did not see a "Tornado With A Hay Bale" fling by on stage when Kansas was gonna be no longer.  I had not seen Joe in over an hour.

I got worried.

I had the Woodchuck.

Joe did not have sugar on his person.

He was sick.  He was 350.  He ate mac and cheese.  He had not checked a blood sugar in over 2 hours.  I had no clue where his number was (ahhh...do I ever?).

My visions of Joe were of him slumped over somewhere in the halls of the high school, the venue for the production.  Maybe he was slumped in the corner of the dimly-lit backstage area?  Perhaps he was slumped over in the bathroom.

All these visions of slump-age made me (and Dave) more and more uncomfortable.  I waited for a pause in the action and made my way out of the theater and high-tailed it to the backstage area.  I went to one side and asked about Joe. A scarecrow told me Joe was on the other side.  I trounced behind the stage to the other side.  There was Joe.  He was on the edge of the stage, waiting for a scene to end so he could go grab a hay bale.  He would not come off for a check until his duty of hay-bale-removing was completed.   Once hay bale #1 was removed from the stage, he came to me.  Gave me a finger.  I pierced it (yes, I still do this sometimes when he is focused on other things...like cool life events).  5-4-3-2-1.... a 194 graced the screen.

I asked him about the "tornado scene".  I told him I got worried when I didn't see him come out with the other "cyclones".  His response was, "Mom I was the first cyclone ... the one holding the chicken".

Nice.

A day-in-the-life of monitoring my "cyclone".

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.

Tough Choice

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

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

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

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

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

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

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

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

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

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

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

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

I was 7 minutes late.

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

Socially Acceptable?

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

Yesterday...

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

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

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

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

His number?  It was 59.

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

Tuff Mutha

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

We all know about this rule.  Who breaks it? 

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

A couple of days ago...

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

"Mom?"

"Yeah Joe."

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

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

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

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

"Please mom." (tears)

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

"Please mom." (tears)

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

"Please mom." (tears)

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

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

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

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

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

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

Who Has DONE IT On Stilts?

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

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

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