Feelin' "Got"

I'm not sure if isolation quite describes it.  I suppose it is a feeling of loneliness and of feeling misunderstood.  Today, I didn't feel that way.  Today,  I felt "got".  Today, my eyes teared up as I read an email from one of Joe's teachers. This email was not in response to any recent issues.  It was an unexpected email of praise for Joe. 

A portion:

'I can only imagine how challenging it is to live each day with diabetes, and the impacts it has on Joe's personal and academic life. And, as if managing the health aspects of it isn't enough in itself, he also has to learn how to advocate for himself and build new coping skills to manage it's impact on all aspects of his life. I see so much growth in these areas as well.'  

The blood sugar checking, the carb counting, and the insulin dosing are one thing.  Sure, at times, the numbers cause physical discomfort.  Yes, the management, the needles hurt.  The thing about diabetes is... the actual disease and the management are so enmeshed and interconnected throughout our days and our nights that it is impacted by just about everything;  it impacts just about everything.

Proud of Joe and how he handles his day-in-the-life.

Chromebook Confiscation

NOTE: Joe does not have a Chromebook Confiscation history.

I knew, over the years, we'd run into difficulties of not being understood.  Sure.  We all deal with that in our day-in-the-life.  I guess I didn't think I'd be saying things like this to an educator:  'Not only is his access to his school day limited by treating and waiting out lows, but to take away his Chromebook for the remainder of the school day, because of his medical condition... limits his access further.'  My voice was measured.  My temper in check. 

The blood sugar checking, the carb counting, and the insulin dosing are one thing.  Sure, at times, the numbers cause physical discomfort.  Yes, the management, the needles hurt.  The thing about diabetes is... the actual disease and the management are so enmeshed and interconnected throughout our days and our nights that it is impacted by just about everything;  also, it impacts just about everything.    

About a month ago...

Joe experienced a school day riddled with lows; blood sugars hovered from the 50's to the 70's.  He spent some time in the Health Office, but for the most part he remained in the classroom.  At one point in his day, he left his Chromebook in a hallway.  He forgot it as he was dealing with another low.  The Chromebook was confiscated for the remainder of the school day.  It was confiscated because it was unattended.

At the end of the school day, Joe visited the Chromebook Confiscator and let him know he had a medical issue that caused the infraction leading to the "confiscation".  The Chromebook Confiscator made Joe promise it would not happen again.  Joe promised.  His Chromebook was given back to him.

Within a week's time...a week where lows were plaguing his days and nights...again, the Chromebook was confiscated by the Chromebook Confiscator.  Joe went to gym class.  He placed his binder and his Chromebook on a bench in the locker room; not in his locker like the students have been instructed to do.  You see, he was nervous about going low during gym.  The shakiness of his hands make maneuvering a combination lock challenging; making access to his belongings quite difficult.  Even if a low was treated, it could take 15 to 20 minutes for him to feel better, for the shakiness to subside.  Joe did end up low.  His Chromebook, gone from the locker room bench...taken away for the rest of the school day.

So, it is at this point... at Chromebook Confiscation #2 that I stepped in.  Joe needed an advocate.  He was missing class due to managing low blood sugars AND the only mechanism to access his work electronically, at school, was being taken away from him.  It was being taken away from him because of diabetes, none-the-less.  

I spoke with the Chromebook Confiscator.  I explained Joe's medical condition.  I explained how low blood sugars can impact executive functioning.  I explained when he feels low, he needs to treat the low promptly.  The Chromebook Confiscator's solution was when Joe feels low, he could walk his Chromebook to his locker and then treat the low.  Tears, while not yet visible, could be heard in my voice.  'You aren't understanding me.  He should not have extra steps added into his routine when he feels low.  He needs to treat the low...not walk to a locker...unlock a locker...and place his Chromebook in the locker.'  

So, then the Chromebook Confiscator proposed, Joe not even have a Chromebook.  He proposed a desktop be provided for Joe in each classroom he attends: Math, Social Studies, Spanish, English, Science...I explained firmly, this was not an option.  Not only was the proposal just plain wrong, but hey...let's make Joe feel even MORE different... he has a pump, a CGM, sees the nurse multiple times daily...oh and let's add ... there's the kid who has to use the desktop computer in FIVE different classrooms.  Awesome.  Ugh. The conversation left me feeling alone, misunderstood, and questioning myself.  Am I asking too much?  Am I over-complicating things?  It also left me feeling a bit sorry for Joe and for myself.  Why can't things just be easy?  This life, of managing t1d, is difficult enough.

In the end, Joe's School Nurse and the Principal met.  A sticker was placed on Joe's Chromebook that states something like "If found, return to the Nurse."  

The Chromebook Confiscator disrupting our day-in-the-life.

'

School Nurse Call

At about 3pm, the end of the school day, a few days ago...  I received a call from Joe's school nurse.  She notified me of a recent low; he treated.  He left school without re-checking his blood glucose; he didn't want to miss his ride home.

'Ok...so your telling me to call him and make sure he makes it home alive (laughter) ... and if he doesn't, I won't hold you responsible.'  Laughter closed the conversation between Joe's school nurse and I.

These are the things you say, cuz they are kinda true.  He's meandering the community, alone...sometimes low.  At times, I just gotta have blind faith that he'll be alright.  He knows what to do.  I have taught him well. And.  I also realize..there could be times, he may not be ok.  There are no guarantees with anything in this life; certainly not with t1d.

I called him.

'You ok?'

'Yeah.  I'm 120s.  I didn't want to miss my ride..'

Conversations with the school nurse while dealing with the day-in-the-life.

There's a New Woodchuck in Town

As many of you long time followers know, we have used the Eli Lilly bag to house Joe's diabetes supplies over the years.  This bag has been affectionately called "Woodchuck".  Why name it?  You may ask.  Well, would you rather yell "get the diabetes supply bag!"  (three words and boring) OR would you rather yell "get Woodchuck!" (one word and much more interesting and dramatic). 

Anyways...

The old Woodchuck was getting a little haggard.

He was dirty.

He has gotten small; well our supplies have gotten larger.  Since upgrading the PDM case to a Sugar Medical,  zipping up the Woodchuck reminds me of  my post-adolescent self, laying on my bed, sucking in my abdomen, trying to zip up my two-sizes-too-small Jordache Jeans. 

So.. it was time to invest in a new bag.

Let me introduce you to the new Woodchuck (Woodchuck # like 8 or 9...I've lost track)..

His exterior is gray and black.  He's like 9"X11"X3"

His interior.  We can fit in all our day-in-the-life needs.

I found this bag on Amazon.  It's from ChillMed.  I have personal experience with this bag, as well.  As a school nurse, I like the clear pouch for placing documents explaining emergency plans and plans for a lockdown situation.  Hopefully, it will be durable for Joe.

A day-in-the-life of chucking the old Woodchuck.

Some Work Is Better Than No Work

Over the past couple of months, things had been relatively stable in the diabetes department around here.  Blood sugars had been within range for the most part; pump settings stagnant.

Lows are now plaguing our days and nights.  Lows are seeping into Joe's school days.

This morning, as we hopped into the car for his 6:45 a.m. high jump practice...

"I backed off your breakfast ratio...hopefully you won't go low this morning."

"mm"

"Are you missing a lot of class ... with all these lows?"

"No.  I just go back to class after I treat."

"Don't you worry about not doing your best work?"

"The way I figure it, some work is better than no work."

I didn't want to point out the time his science notebook was marked as incomplete, due to a week of lows and his going-back-to-class-low-plan lead to things not being glued into place, because in his hypoglycemic state...he "forgot" to use glue.  In elementary school and on up through 5th grade, Joe would stay in the Health Office until his low came up.  This go-back-to-class-low is somewhat new territory for us. 

I realize at some point in his life, maybe it's now, he should carry-on if he feels OK.  Life doesn't just stop and stand still during those 15, or more, minutes it takes to get back to euglycemia.

 

The day-in-the-life continues no matter what number he is.

Sub Flub

"Did it bother you?"

"No mom, I was OK with it..  ..  It really wasn't a big deal."

A couple of afternoons ago...

Joe was sharing about his school day.  He had a substitute teacher in one of his classes.  His Dexcom started donging off "Meep-Meep-Meep style" indicating a low I presume, from the history of numbers.

One of Joe's classmates started teasing Joe...stating he should put his "cell phone" away.  The students were trying to rattle the sub, not tease Joe per-se.  Another Meep-Meep-Meep and from the sounds of it, the substitute teacher was not impressed with Joe and his ding-donging cell phone.  She asked Joe to put his cell phone away promptly or she would be referring him to the Principal's office. 

 Joe then took a deep breath and went into the abbreviated version of he has type 1 diabetes and the ringing noise was from his continuous glucometer called a Dexcom.  Joe said the substitute then apologized and he added she was quite nice.

This is the third time something like this has happened this year.

I admired Joe's willingness to openly explain his medical condition and the technology that accompanies it in front of his peers to the substitute teacher.  He didn't appear to be too bothered by it.  To him it's part of it, of having t1d, the explaining himself.  Frankly, he knows no differently.

He will be put in this position where he needs to explain himself; to stand up for himself; to advocate for himself.  I think that is part of life for all of us.  Society does not need to handle Joe with kid gloves.  Friends, family, and strangers should feel comfortable to ask questions in a respectful manner.  I suppose... I guess what kinda bothered me about this situation for Joe is it was a potentially embarrassing scenario he was left to deal with, on his own, during the already awkward-y place called Middle School.  Not.Too.Cool.

I figured if I could lessen the frequency of events like this it was worth a try.  So, I emailed Joe's school nurse and requested the teachers add a note about his CGM to their sub binders.

Trying to save him a little bit of explaining about his day-in-the-life.

The Interrupter, Refuser, Moper...

Pre-post Note:  Joe does not get into trouble at school.  This is an unusual event, where...in my opinion....the "low" trumped the reasoning for his visit to the Principal's Office.

"I thought it was all my fault mom." ... was stated in the sweet, soft, lispy Joe-voice... "I did not even think about my low or that the teacher would not let me see the nurse."

This infuriated me even more; Joe blaming himself.

Joe's daily log came home tucked in Woodchuck.  His numbers were documented.  Insulin doses were transcribed.  A visit to the Principal's Office was also written down on the log.  Apparently, he had to go see the Principal after his morning snack.  His pre-morning snack blood sugar was 66. 

Me:  "Joe, it says here that you had to go see the Principal ...  ...?  What's the story?" (questions were posed in a surprisingly even-tone by your's truly)

Joe:  "I was moping.  I asked my teacher if I could go see the nurse because I felt low ... I interrupted her; she was not happy with that ... she made me sit back down at my desk ... then I wouldn't do my math ... my head was on my desk .... I was mope-y-ish ... she then sent me to the Principal's Office ... the Nurse noticed me waiting ... checked a BG...66 ... " 

Me:  Trying to wrap my brain around the situation, "so you are saying that you asked to see the nurse because you felt low...the teacher made you sit down at your desk because you interrupted...and then sent you to the Principal's Office because you refused to do your math and you moped?"

Joe:  "I did not handle it the best."

Me:  "Did you not do your math because you didn't feel like it because of the low or because you were mad at the teacher?" and...by the way ... I don't know why I even asked this.  It is so, so, sooooo not the point.

Joe:  "My brain did not feel like it could do the math and I was angry.  I really did not handle it well."

Of course he did not handle it well.  The one person who he depends on...in the classroom... the gatekeeper to the nurse, to safety...was denying him access to help.  The "low" trumps the whole situation.  Of course he did not feel up to doing the math... there is a physiological reason for that.  Of course he moped...Joe can be a "moper" in normal situations...add on a low during a frustrating situation and you are gonna get some serious "mope-age".  AND!  Of course he went up to the teacher to ask to see the nurse.  He does not want to raise his hand and ask to see the nurse in front of the whole class.  He does not want to call attention to his "difference".  I GET it.  I GOT it. 

The following morning, as Joe and I were driving into school to rectify the denial-to-see-the-school-nurse-during-a-potentially-life-threatening-situation-situation, from the back seat a "Thanks mom... thanks for sticking-up for me."

Stuck up for him, I did.  It wasn't pretty.  I wasn't that calm.  Cool, I was not.  Collected?  Perhaps.  I was collected in my point.  Denial to the School Nurse is not an option when Joe feels low.  My voice was shaky.  It was loud.  I think I said I was "very upset" ump-teen times.  I did not cry though.  I felt like it.

My message to Joe throughout this ordeal was two-fold: 

1. Do not let anyone deny you access to sugar or to your supplies if you feel low.  You may whip out your glucometer and do a check and have sugar anywhere.  OR, you may walk out of your classroom and head to the Nurse.
2. I know this one doesn't seem quite right...BUT...I said something like "Joe, this is an example why you have to be on your best behavior all.the.time.  It will be easier for people to pick-up that you are "off" diabetes-wise, when there is an actual problem.  Maybe not the right message. 

A day-in-the-life of sticking up for my son Joe.

KinKy In The Car

5:50a.m. this morning...Dexter was donging-off for "LOW", Joe was actually 223.  I corrected and planned on changing Joe's site when he woke.  It had been in since Monday (that is a long time, I usually change him out every two to three days).  I also made a mental note to rip out Dexter.  He was dead to me. Liar.

About an hour later, still wearing his clothes from yesterday, jeans and a long sleeve tee, he was snuggled in his bed with our Miniature Schnauzers.

"How was your sleep bud?"

"Great, I am just giving these little cuties a tummie rub." His face was buried in Oscar and Henry fur.  (See, I just call him a "troll"...he is a pretty darn good kid with a kind heart)

"Look it, you cannot go to school in the same clothes your wore yesterday and last night...change and come down stairs for a new site."

He changed.  New site was done.  Dexter was ripped out.  Pre-breakfast number was 189.

He ate 54 grams worth of wheat toast smeared in butter, peanut butter, and honey.  He was bolused.

Off to school he went.

9:30-ish a.m. The School Nurse calls.  Joe was in the 400s, washed his hands...rechecked, he was 388.  I tell her about the new site and that if his pre-lunch number is over 250 to check for ketones and to call me.  The site may be bad. 

12:00-ish p.m. Yep.  You.Guessed.It.  The School Nurse was calling to let me know that Joe was 468 with moderate ketones. "OK.  I'll be right over.  He needs a site change."  I shove my partially consumed salad in the fridge.  I don't want Joe to miss out on much of his lunch-time and am dreading the "recess" plan.  He should not be running around ketotic.  This was not gonna go over well with a 400+ Joe.

As I pulled into the school, the front of the school, Joe ran out to greet me.  Apparently, we are back to doing school~site~changes in my vehicle.  He plopped in the front of the car...upper body in the drivers seat...butt up over the console-y thing...I was in the passenger side with Joe's legs.  He wanted the door shut.  Fine, I crammed myself in and shut it.  The bad site was removed.  The new site inserted without issue.  I could not find the IV 3000 that I had placed in the car for the site change.  I was trying to hurry ... I grumbled at Joe about the ridiculous position he and I were in...in the car...and could he see if the IV 3000 was under his hands in the driver's seat.  As I grumbled at him, he grumbled at me..."Diabetes is ruining my lunch and recess...." 

KINKED SITE

IV 3000 was found, under my butt.  I slapped it on Joe's butt.   (the IV 3000 keeps Joe's sites situated and allow Joe to be the ever-loving...always-moving Joe that we know and love).   Joe then got his shorts situated.  We hugged; both of us knowing and needing to convey to one another that none of this is our "fault". Diabetes was being a turd today.  Period.
 
The lunch bolus was gargantuan.  I gave 2/3 of the correction and a full carb bolus.  I have learned that bad sites followed by good sites...can drop Joe quickly...thus the 2/3 correction.

I've got the mechanics down.  The numbers, the boluses, they don't make me second guess myself often.  It is here, with the recess issue, that I struggled.  Moderate ketones...huge bolus...and recess...are not a good combination.  I knew that this was not going to go over well with Joe.  The School Nurse offered some fun hang-out-in-the-Health-Office-time with a good buddy of his choosing.

Nope.  This did not sound like a good deal to Joe.  He did not whine or complain.  He was, however, firm.

Me:  "Joe, do you think you could do recess without running?"

Joe:  "I just wanna do the bars...back flips."

Not really back flips...but going backwards around the bars...he has been learning tricks from the girls.

Me:  "OK...the bars ONLY."

Joe:  "How about swinging and the Gyro?"

Me:  "Fine. Swinging, NO Gyro." (Swinging seemed harmless...just some leg pumping...no to the Gyro because it is kind of high off the ground ~shoot...just realized the swing is high off the ground as he pendulates... back to the Gyro.... he has to hold on for dear life and it spins...it just seemed like a good idea to have denied it, as he hopefully euglycemi-tizes (a word?).

So, I am left here second guessing the activity and the ketones.  If they were HIGH, I would have said "NO" to recess.  Moderate...with known cause...I "modified" recess.  What do you guys do?

Our kinky day-in-the-life.

A Mess

Ugh...It was a mess.

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

I think he looks CUTE here...

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

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

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

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

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

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

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

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

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

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

A 4 YEAR JOURNEY...

NEVER TO BE FORGOTTEN.

A SPECIAL STUDENT WHO TOUCHED MY LIFE!

A SPECIAL FAMILY WHO MOVED ME!

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

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

Kindergarten Joe

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

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

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

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

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

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

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.

Wanted A Bit More..

I don't know if the 'missing instruction', or being 'last to lunch', or being 'late to Math' are magnified in his 8 year old mind. Perhaps they are. What I do know. What I can tell you. And. What many of you know is that it isn't the pricks, the pokes, the lows, and the highs that get you down. It is the psycho-social ramifications that can wear on you a bit. The "waiting", the "missing", the "stopping" for Diabetes Care is the part of Type 1 that Joe could definitely do without.

Yesterday...

Mid-spread of the peanut butter on Joe's sandwich...

I stopped dead in my tracks...and did an about face to Joe.

I had been busily preparing breakfasts, lunches, Joe's Daily Diabetes Log, and micromanaging my trolls (my children, I can call them that) hygienic needs prior to our departure for school. Amidst the scuttlebutt, I was discussing next year with Joe. I was lamenting our "good-bye" to his current School Nurse. I was planning out our "care-plan" for next year. I said something like "...and next year we will run it the same...all your care in the classroom...except for lunch."

Shifting his weight, Joe seemed to struggle with the information he was going to share with me.

"Ahhhhhhh...Mom, none of my care is being done in my classroom."

"What? ... For how long Joe?"

"For months."

*a disheartened ----*

As many of you know, I had worked diligently at the beginning of the school year to get more of Joe's care transitioned to the classroom. We had a plan in place. I thought it was being followed. I was under the impression Joe was not missing as much classroom time and I was under the impression that his days seemed more "normal" and "acceptable" to him. In fostering this plan, I had really backed off on my presence in the school. I drop off The Woodchuck to his classroom daily, but that is it. I had not met with the School regarding Joe's care in quite awhile. Things seemed to be going smoothly; I had become complacent.

Perhaps this issue doesn't seem like a big deal to many of you. Perhaps it seems trivial. It's not. It takes knowing the day-in-and-out of diabetes management intimately to truly "get it". During the school day, Joe requires a minimum of three blood sugar checks a day. On a Physical Education day, he requires four blood sugar checks. If he is experiencing lows, he could need many more checks. Each of these checks requires him to go to the Health Office. Many of these checks requires some sort of action: insulin dosing or sugar administration. If Joe is low he must stay in the Health Office for 15 minutes until his blood sugar is re-checked to ensure it is in a safe range. The long and the short of the previously written is that he misses a ton of classroom time.

Let's look at the psycho-social-emotional aspect of this. He misses instruction. He has been made fun of by his peers for not knowing what to do on assignments due to his missing key directions. He misses socializing during snack time. He may arrive to the lunch room late and have to socially navigate his seating arrangement after his peers have settled into their spots. This has been his arrangement for Kindergarten, for First Grade, for Second Grade, and now...apparently...for Third Grade too.

I discussed my concerns with the Principal and the School Nurse. I stated we can continue with the current arrangement as there is only 9 weeks of school left. I did impart this message upon them: I explained that Joe is more than "diabetes", much more. He is a bright, eager student. I would hate for his school day routine to be based solely on his health needs. He was ready for more independence. I wanted to nurture this. I wanted to foster it. I wanted to facilitate a learning environment that wasn't dictated by his diabetes care. My hope is that in the future the psycho-social-emotional aspect of a student's care is considered. Joe is oh,oh so much more than "diabetes".

Joe is an intelligent, independent child. He has an excellent grasp of his diabetes care and I was hoping to foster his growth and development by stream-lining his care in the school this year. I am not unhappy with the school. I feel that Joe is safe there. I feel he is cared for: the blood sugars are checked, the boluses for snack and lunch and highs are given, the lows are treated. I guess I was just hoping for a bit more.

Joe's day-in-the-life managing Type 1 in School.

It Was A Bad One

Trying to "harness" Joe's exuberant energy level is an impossible task. I know this. I don't even know why I tried. I expended more energy yelling at him while I was trying to run and keep up with him. I should have just saved myself and only focused on the running part. He is what he is and it is one of the things I love most about him.

"Walking LEGS Joe!"

and...

"Joe WAIT!"

and...

"Joe SLOW DOWN!"

and...

"JOE STOP!"

.... were repeated over and over and over again yesterday on the Snake Mountain Field Trip. It rained. The trail was wet and muddied. Leaves camouflaged rocks and roots that inhabited the path. My eyes were always glued to Joe who seemed to go into stealth mode and would suddenly be like 80 feet ahead of me. I fell a couple of times. It rained. I got eaten alive by mosquitoes. No really...it was all good. Seriously.

I digress...back to the story...

While hiking, my friend said she had never seen me like this. She had never seen me so anxious about Joe. Odd how I am fine with him playing hockey, skating up and down ramps at skate parks, and careening down slip and slides while standing on boogie boards, but a damn hike in the woods sends me over the edge.

Let me explain.

I am afraid of losing my diabetic kid in the woods. I am afraid he will get lost. I am afraid he'll go low. I am afraid no one will be there to help him and he will die. Alone. It is that simple.

*******

The hike started at a Tasmanian-like pace. Joe was working the trail with vigor. He and his friend were chatting incessantly. I was keeping up while hanging and talking with a good friend. Joe seemed fine ... for awhile. We had boosted him with 20 grams of carbs on the bus and decreased his basal by 30%.

About 10 minutes into the hike, Joe was 180 and double downing on Dexter. He drank a juice and continued on at a generous pace for a bit. Then he took another look at Dexter. I could tell he was starting to feel "off". Whenever he starts peeking at Dexter frequently like this, he is in for some massive blood sugar swings... 140, still double downing. I performed my heroics as a life-sized human Pez Dispenser and doled out a couple of Starbursts and changed the basal reduction to a negative 60%. I suggested a "break" from hiking until the arrows stop plummeting. No. Joe will hear none of it. We continued on with our friends.

A few minutes later...

"Mom...my legs don't work."

Here we go. It will be a bad one.

Joe sat on the side of the trail. His blood sugar was 50. Dexter was showing a 40 and double-downing. He was dropping fast. We were in the middle of the woods in B.F.E. I encouraged our friends to move on. I didn't want to ruin their hike. Joe was chomping down Starbursts. I was kneeling beside him. As far as my eye could see, the trail was then uninhabited. I felt a teensy-tiny bit uneasy as Joe was pasty and his CGM was still showing a 40 with double arrows down.

Joe's voice snapped me out of my unease.

"Mom, you may need to carry me down the mountain. I cannot make it up."

This angered me.  Not at Joe. But at the disease; at the low. You see, my son ... my Joe ... is not a quitter. He would not back down from a hike. It isn't in his nature. The low was clouding his judgement and making him feel so weak that he was considering giving up.

"Joe, I know you feel bad now. Let's ride out the low. We are hiking this mountain. Has mom ever let you down before? You will feel differently in a couple of minutes Buddy. Hang in there."

With the pep-talk complete and a few more minutes under our belt and some good friends coming up along the path, we continued on our way up Snake Mountain. Joe made his way to the front of the pack and was with the first group that emerged from the woods; from the hike. Due to his speedy-hiking, I got the "added bonus" of sitting on the bus an extra 40 minutes waiting for the rest of the Third Graders to finish the hike. Yay me (in a "Livin' the Dream" ~ like voice).

A day-in-the-life of Type 1 Diabetes and Joe on Snake Mountain.

For Joe...

Pre-post note: Joe's school, his teachers, his teacher's aides, his school nurse, his principal have all been exemplary in their care of children with diabetes. I am sharing this out of Joe's need and out of my need to support Joe.

"OK Joe, I need to talk."

Joe was pre-occupied with spying on Oscar (our Miniature Schnauzer) and Gus (our friend's Miniature Schnauzer) who were playing tug-of-war with a mechanically-squeaking Zhu Zhu pet, while Bridget played the Vietnamese Bamboo Xylophone as a "doggie distraction" (again, not making this stuff up).

"Joe, seriously, I need your opinion about something."

I have him come with me into a different room. "Joe will you be OK with doing all of your care in the Health Office next year? Or do you want to do some of it in the Classroom? I need to know."

Joe responds without hesitation "Not in the Health Office. I can do lunch, if I have to. I am late to Math every day. I am last to lunch every day. I miss so much and people make fun of me for not knowing what to do." This last bit was referencing instruction that Joe would miss while he was out of the Classroom for his Diabetes Care.

"Alright, I understand."

I don't know if the 'missing instruction', or being 'last to lunch', or being 'late to Math' are magnified in his 8 year old mind. Perhaps they are. What I do know. What I can tell you. And. What many of you know is that it isn't the pricks, the pokes, the lows, and the highs that get you down. It is the psycho-social ramifications that can wear on you a bit. The "waiting", the "missing", the "stopping" for Diabetes Care is the part of Type 1 that Joe could definitely do without.

**********
Today on the phone, I explained that Joe is more than "diabetes", much more. He is a bright, eager student. I would hate for his school day routine to be based solely on his health needs. He is ready for more independence. I want to nurture this. I want to foster it. I want to facilitate a learning environment that isn't dictated by his diabetes care. I want this not for me, but because of what he said to me tonight. Trust me ... I was ready to not rock the boat.

Some history...

During Kindergarten and First Grade all of Joe's care was done in the Health Office. Those classrooms are in close proximity to the Health Office. While Joe did all of his "physical" care at that time, he relied on the school nurse to guide him verbally with blood sugar and carb count entries into his pump. In Second Grade, Joe continued to grow with his self-care and had made the "calls" when he should "boost", when he should do a "combo bolus" of 0%;100% over 30 minutes when he was going into lunch with a borderline low (70s) blood sugar, and his carb counting and nutrition label reading were progressing. At the beginning of Second Grade, the school nurse came to his classroom for his morning snack check and bolus; he would go to the Health Office for his lunch blood sugar and bolus; the nurse would come to the classroom for the afternoon blood sugar check. The care in the classroom was taking the school nurse away from the Health Office too much, so all of Joe's care was transitioned back to the Health Office for the second half of his Second Grade year.

In the spring ...

I had met with school personnel to start planning Joe's care for the 2011/2012 school year. We were wanting to support Joe with his independence and personal growth. We were also wanting to limit his time away from the classroom.

The Health Office is at the opposite end of the school from Joe's home room. On a good day, Joe walks down to the Health Office through the halls decorated with all kinds of cool art made by his school-mates, he walks down to the Health Office passing by many of his peers, he walks down to the Health Office by water fountains, bathrooms, and all kinds of interesting~to~an~8~year~old~boy stuff... he walks down to the Health Office at a minimum of 3 times daily for routine Diabetes Care. This is on a 'good day'... a day without lows ... a day without highs. Joe misses quite a bit of class-time due to Diabetes.

The tentative plan that school personnel and I had arrived at during this meeting was that: Joe would do his morning snack blood sugar check and bolus in the classroom with an aide over-seeing his self-care. He would do his lunch blood sugar check and bolus in the Health Office. His afternoon, post-lunch blood sugar check would, again, be supervised by an aide in the classroom.

The plan is being questioned a bit. I won't get into the specifics out of respect for the staff whom all care deeply for Joe and our family. I am writing to get ideas, suggestions, and input.

Parents of CWDs and/or PWDs can you please provide me with any insight to the following:

1. Where does your child's care take place? Health Office? or Classroom? or Both?


2. Who oversees or conducts your child's care while he/she is at school? Is it a Nurse? Is it an aide/a teacher/a principal? If it is not a Nurse, do they delegate the medical tasks to the non-medically licensed-personnel?


3. Have you been asked to sign a waiver if care is provided by anyone other than a nurse?


4. Any other good tips/ideas/situations that you think could be helpful?

A day-in-the-life of going to bat for Joe.

HEEELLLLLLOOOO N.U.R.S.E.!!!

For as crazy and outlandish as many of my posts are, I think you guys may be figuring out after all these "school postings" that I am a little "anal". I was a Surgical and Pediatric ICU nurse for 14 years For The Love of God...so YES, I like things clear and concise.

This is something I wrote up for Joe's nurse when he started K-garten. Our 504 plan is more "general" than what this document covers. (Wendy from candyheartsblog.com has an awesome 504 Plan here). This is more of the "nuts and bolts" of Joe's daily care needs and "how to's". As with all the documents, please feel free to use/tweak/etc. You can access this document by either "copying and pasting" OR clicking here to access it on Scribd. OR you can access all documents I have uploaded to date by clicking the tab on the upper right corner of my blog.

Side Note: Please make sure to give a copy of glucometer manual and pump manual..etc to the Health Office. Also, many product manuals can be accessed on-line.

Onto the DOCUMENT....

DAILY CARE FOR JOE 2009/2010

I will send in “Daily Care Log” (for "Daily Care Log" click here) each day. This will have Joe’s morning blood sugar on it. It will also have a list of foods that we packed for Joe for that day with carb counts. The nurse or designated persons will write down blood sugars and amounts of insulin given throughout the day. Please tuck the “Daily Care Log” in the pack where Joe’s glucometer is kept at the end of each day and place the pack in Joe’s backpack.

BLOOD SUGAR CHECKING ROUTINE

Joe’s blood sugar may be checked by the School Nurse or designated persons.

1. Check daily prior to morning snack.
2. Check daily prior to lunch.
3. Check prior to P.E.
4. Check daily @ 1:45 – 2:00.

*Joe’s blood sugar must be checked promptly when he appears LOW.

TREATMENT FOR LOW BLOOD SUGAR

If blood sugar level is less than 70, Joe will need sugar. He usually takes glucose tablets to treat a low (each tablet contains 4 grams of carbohydrate).

***If Joe’s blood sugar is less than 70 - Give 3 glucose tablets OR a juice box

After giving Joe sugar, wait 10-15 minutes to recheck blood sugar level. It is important that Joe not eat anything during the 10-15 minutes, as other food components can slow down the absorption of the sugar given to treat the low. If the repeat number is less than 70, treat again using the directions above.

If Joe is UNCONSCIOUS OR HAVING A SEIZURE:

1. Have someone call 911 and then parents
2. Give Glucagon (in the red container - needs to be "reconstituted) 1mg into the front of Joe's thigh
3. Roll Joe onto his side
4. Once he regains consciousness...have him take sips of juice if he is able
   

WHEN TO GIVE INSULIN

1. Daily with morning snack.
2. Daily with lunch.
3. Daily with any extra food
4. To correct a high blood sugar

*Extra insulin will be needed when there are ketones present…call parents for instructions/or Joe may need to go home for large ketones.

HOW TO GIVE INSULIN (note this is for the Animas Ping Pump - I also give a copy of the Ping Manual to the Nurse for her office - this is a "cheat sheet").

For Carbs with Blood Sugar Check:

1. Unlock pump by pressing up and down arrows at the same time (sometimes I have to do it twice)…the pump will make a beep and the home screen will appear.
2. Select menu on the pump and press “OK”
3. Select “Bolus” and press “OK”
4. When having food with carbs select “eZCarb” and press “OK”
5. Enter in carbs (using arrows) and select “OK”
6. Enter in blood sugar (using arrows…it will start you at 80) and then press “OK”
7. The pump will say “show result” select “OK”
8. The pump will then show Carb…/BG…/IOB (insulin on board) with numbers by them…then, there will be a row that says “Total”…use the number of units stated by total for dosing. Use the up arrow to get to the number listed by “Total” then press “OK”. You then need to press “OK” again for the pump to deliver the insulin.
9. Press the up and down arrows at the same time to lock pump.
   

For Blood Sugar Correction Only: (correct blood sugars > 200)

1. Follow steps 1-3 above
2. When correcting for blood sugar only select “eZBG” and press “OK”
3. Using arrows, scroll up to the number that corresponds to Joe’s blood sugar and press “OK”
4. Select “show result” and select “OK”
5. Next to the word “total” there will be the number of units of insulin you should give Joe
6. Use the arrows and scroll up to the number displayed by the word “total” and then press “OK”
7. Then press “OK” again for the pump to deliver the insulin
8. Press the up and down arrows together to lock the pump.

WHEN TO CHECK KETONES

Ketones must be checked if Joe has two consecutive readings greater than 250 and/or if he complains of abdominal pain or vomits. Please call parents if he has moderate to large ketones (a blood ketone reading > 0.6 or moderate to large urine ketones). He may need his pump site changed (parents will change) and extra insulin and/or he may need to go home for closer monitoring. Please have him drink water and have liberal access to the bathroom.

WHAT TO DO FOR P.E.

Please check Joe’s blood sugar prior to P.E. If his blood sugar is less than 70 (treat the LOW, as outlined). If his blood sugar is 70-140, please give him 2 crackers from his cracker pack (8grams). If his blood sugar is 140-220, do nothing. If his blood sugar is greater than 240 (do ½ a correction).

WHEN TO CALL PARENTS

1. Blood sugar less than 70
2. Blood sugar greater than 250
3. Moderate to large ketones
4. If Joe’s pump becomes disconnected
5. If Joe’s pump is alarming
6. If Joe becomes sick or vomits
7. For questions on carb counting
8. For ANY questions or concerns

PHONE NUMBERS (I list my phone #, my husband's phone #, our email address, and the Endocrinology phone # here).

And that-is-that...HOPING to make your "day-in-the-life" a little easier FRIENDS.

THE LOWDOWN ON LOCKDOWNs

Preface: The following post, like all material contained in this blog, is not intended as medical advice. In addition, I would like to THANK Joe's school for all that they have done in making school a safe environment for children with type 1 diabetes.


So, a lot of us D-Moms are talking about 504 Plans, educating school personnel...etc. This is Joe's 3rd school year with the public school system. When he started kindergarten 3 years ago there was a "weak" substitute school nurse system in place at his school and the district refused to delegate nursing tasks (which included EVERYTHING diabetes related...even checking a blood sugar and giving "life saving" sugar to treat a low). I told them that this was unacceptable. If the school nurse was gone, no one was in the building that could help my FIVE year old son check his blood sugar and/or treat a low by simply giving him sugar tablets. After graciously, but firmly presenting my case, the district provided incentives to "bump up" their pool of substitute nurses and this has been a non-issue since.

This, however, caused me to take pause....


and think.....

What would happen to Joe in a Lockdown Situation? If no other personnel are allowed to be trained on even simply giving him sugar...what if he was low and locked in a classroom due to an unsafe situation going down in the school. Is it acceptable to rely on a FIVE year old to take care of "D" on his own? Well I am 38 and I can barely handle it - so NO. This was not a safe situation. I realize we cannot ensure our children's' safety 100% of the time. We cannot forsee all the dangers that they will encounter. I could not, however, sit by and be "OK" with something that I could improve upon. I am not one to "panic" or "freak-out" over every last detail. Yes, there is only like a 0.001% chance that a Lockdown could happen here in Vermont at Joe's elementary school of all places. But hey...guess what? It did happen a few years ago. A school one town over had to Lockdown do to a gunman in the school. So it can happen even here in Vermont...and from what I have heard it happens much more frequently in schools throughout the country. I wasn't comfortable with Joe's situation.

So I changed it.

I have done all the education of the non-licensed medical personnel in Joe's school. They are allowed to perform blood glucose checks, treat lows, and administer Glucagon in Lockdown situations ONLY. They are not allowed to administer insulin and so you will notice if he is high, they are instructed to give non-carbohydrate fluids, but not insulin. I will have to sign a waiver stating that Joe is "independent" with his care in order for him to administer insulin, which I may consider doing this year. I wasn't ready to do that when he was five for obvious reasons.

Here is a procedure that I came up with:

First let me start by saying all of Joe's diabetes care is done in the Health Office. So this is why this plan is important to someone in his situation. It may be different for those of you that have the care being done in the classroom (we are moving to more "classroom-care" this year).

Emergency Preparedness Plan for J.M.'s

Diabetes Management

When will the Trained Non-Medical Personnel help J.M. with his diabetes management?
During times of In-Shelter Lockdown, Trained Diabetes Personnel will help the child with his/her diabetes care. Routine diabetes care (ie insulin administration/carb counting/etc) will be managed by the School Nurse or a parent. Parents must be notified if the School Nurse is not available for routine diabetes care.

What Tasks are to be performed: 1) Help/remind the child to check his/her blood sugar. 2) Help the child treat a low blood sugar. 3) Call parents or contact School Nurse for a blood sugar less than 70 or greater than 250. 4) Give Glucagon if the child is unconscious or having a seizure.

PROCEDURE:

In-Shelter Lockdown:


1) Check or remind the child to check his/her blood sugar at the beginning of an In-Shelter Lockdown, if the child complains of or is showing signs of being low, and every 2 hours for the duration of the Lockdown.

• If the child's blood sugar is less than 70 - see the "Treatment of Low Blood Sugar" procedure.


• If the child's blood sugar is between 70 and 90, please give the child 1/2 of the granola bar provided.


• If the child's blood sugar is greater than 250 - please notify the School Nurse and call parents immediately once the situation permits. Encourage the child to drink sugar-free fluids.

2) Please do not give the child food or fluids that contain carbohydrates during an In-Shelter Lockdown ... as he would need insulin to cover the food. (He may have the sugar/granola bar for the treatment of a low as outlined above).


3) If the child is unconscious or having a seizure - give the child Glucagon - see the "Glucagon Administration Instructions".




The above document is all well and fine you think...but how is it executed?

The 504 Plan: In Joe's 504 it states that he will have access to diabetes supplies and trained personnel during an In-Shelter Lockdown.

The Actual Mechanics of the Plan: There is a bag with a back-up glucometer, strips, batteries, sugar, granola bars, Glucagon, and one bottled water that "travels" with Joe's class. He always has access to the supplies and the classroom aid is trained to use the contents in the bag. I have a folder in the bag with short and simple instructions on everything I have taught. Treating a low and Glucagon Administration are laminated and placed on the front and the back of the folder and any additional information is placed in the folder. People feel more at ease knowing the information is there.

The "tattered folder" - the quick and dirty on treating a low with phone numbers (mine, my husband's and the Endocrinology Group)

Glucagon administration instructions on the other side of the folder

And there you have it...another "day-in-the-life"...what those of us with young type 1s need to do to ensure our children's safety.

SIDE NOTE: Please see other documents made for school in the side bar... general "d" info for the school, daily logs that travel back and forth between home and school, blood sugar check procedure etc. Please use any and all documents and tweak to your needs. I am soooo tired of us all having to "re-invent" the wheel. xoxo

LITTLE SHOULDERS, BIG WEIGHT

"Joe's curled up in a ball under the table...should I try to get to him to do another blood sugar check?"

This is the call that I received yesterday from the school nurse.

Me: "Is he Low?"

School Nurse: "Yes, he was 51 and he has had a juice..."

Me: "Please get another finger stick...it was a nice day, I am sure he burned through a lot of sugar at recess."

School Nurse: "OK...I'll call back if he won't let me check his number" (Hangs Up)

4 minutes or so later...the phone rings.

School Nurse: "Reyna he has now barricaded himself in the bathroom...he won't let me check his number."

Me: "OK...give him a couple of minutes if he doesn't come out call me and I'll come in and drag him out by the ear..." (she and I chuckle)

I then just decide to go to the school. This has NEVER happened. Joe is known for being very responsible with his care. He checks his number at a minimum of 3 times a day while at school. He gives himself insulin via his Insulin Pump using math skills that most 6 year olds do not possess. He works in tenths and hundredths of units. He is simply AMAZING.

So why do you ask would Joe be hiding and refusing a blood sugar check after a low? Well I have a few ideas. First off...He was low, when you are low your brain is not functioning properly. From what I understand it can feel like being inebriated. When Joe is low he is not necessarily in his right mind, he is not thinking straight. The ONLY FUEL the brain can use for energy is SUGAR. A LOW BLOOD SUGAR = JELLO-Y, FOGGY, FLOUNDERING BRAIN.

On top of the low, Joe was missing PE. When a child with type 1 has a low blood sugar they need to treat it immediately with fast acting carbs. They are to then sit quietly (they should not be active as that would cause them to burn through more sugar and could make them go lower) and wait 15 minutes while supervised. Then they recheck their blood sugar to make sure it is in a safe range. Joe's low was caught right before PE, his absolute FAVORITE "subject". So one can only imagine a six year old with a "non-functioning" low brain and the disappointment of missing his favorite class and the tailspin his emotions fell into.

My heart broke a little yesterday for him. He is tough. He is amazing. He is my hero. He is human. He bears so much on his little shoulders. The psycho-social toll of this disease is enormous.