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.

Freak Show

"If he is unconscious or has a seizure - Glucagon is in his camo bag OR call me and I'll run over and give it..  AND call 911". ~  Yeah, so writing that part seems a little over-the-top..but what am I to do?  It could happen.  I like how I added in the part of just calling me so I could "run over" and whack him with the Glucagon.  It is so very difficult to not appear like a freak show.  To top it off I am sending Joe over with a jar of pickles and salami-wraps for "free" snacking into the evening hours.  Freak Show...

 

My Head On Village Person Body...Don't Ask...

 

10:56pm last evening, Joe's blood sugar was 25.  Haven't seen a number that low since he was 3 years old.

 

Tonight is the sleepover.  I am a little nervous, due to Joe's low trend through the night over the past week.  I cannot back out of this though.  I know it.  Joe is thrilled and I need to make this happen AND keep my composure to give the illusion of "normalcy".  So,  I analyzed his numbers this morning and backed off his basal rates. 

 

I then proceeded to type out "instructions" to accompany my 10 year old child. 

 

Here is what I came up with (I added the red just for my readers here on Beta Buddies.  No red was added to the actual document for "normalcy-appearing-purposes"):

 

Joe should check his blood sugar: every 2-3 hours and/or before he eats and/or if he feels "LOW".

 *Joe is going to call me with blood sugar numbers and carb counts and he/I will bolus over the phone.

 * I did talk to him about not "over-carbing".  I told him a couple of pieces of pizza were OK, but no more.  One carb snack in the evening would be OK, but he should not graze (unless he is running low, then it is OK).  It is OK for him to snack on the non-carb foods (the pickles and salami-wraps that I sent are for this purpose).

 LOWS - A low blood sugar for Joe is a number less than 70:  If Joe's number is less than 70 he needs sugar.  Sugar is in his camo-bag.  He needs either 3 Starbursts OR 3 Glucose Tablets.  He then needs to wait 15 minutes and then he should do a re-check of his blood sugar to make sure the number has come up to 70 or higher.

 If he is unconscious or has a seizure - Glucagon is in his camo bag OR call me and I'll run over AND call 911.

 NIGHT TIME CHECKS - Please check Joe before you go to bed and call me with the number.  Then at 2 am (sorry...ugh).  For the 2 am number, if Joe is < 70 please give him 3 Glucose Tablets (he will chew them while he sleeps) and then re-check his blood sugar in 15 minutes to make sure his number came up (double sorry).  If Joe is 70 - 100, please give him 2 Glucose Tabs.  If Joe's blood sugar is 100-249, do nothing.  If Joe's blood sugar is 250 or greater, then he needs a "correction" dose of insulin.

 Using the Glucometer/PUMP remote for "correction": (NOTE: You should be within 5 feet or so of Joe to deliver the insulin from the remote) Once the blood glucose number appears on the glucometer screen, you can select "bolus" (at bottom of screen) by using the down arrow to highlight "bolus" and then pressing the "OK" button.  The glucometer will then give you a menu of "types of boluses" , you will select "EZBG" using the arrows to highlight "EZBG" and then pushing the OK button.  The screen will then display the current BG/where we want his BG "120"/and a correction factor...the math so-to-speak.  Push "OK" (Joe's current BG will be highlighted).  The cursor will then be highlighting "show result", press the OK button.  There will then be a screen suggesting how much insulin to give (the amount will be next to the word "TOTAL=").  You will need to push the up arrow until the suggested amount is reached.  Once the amount entered is the same as what the Total suggested you will press the "OK" button.  The cursor then moves to "Go".  You will press the OK button again to deliver the insulin.

A day-in-the-life of authoring an "Instruction Manual" (of sorts) for Joe, my ten year old son who has type 1 diabetes.

"HHH...e.l.p."

Literally thinking of "Cutting The Cord" ... more on that soon...

 "Ahh . ... he (a.k.a. Joe) told me that we might need to leave a door unlocked for you... ah, so you could come in and check him in the middle of the night." ~ Joe's-friend's-mom  to me.

I paused to see what her reaction was going to be so that I could, in turn, mirror it.  She started laughing.  So, I then started laughing.  Little did she know, I would do that "PLAN" if it seemed "normal" and "OK" to her.  Little did she know that Dave has indeed climbed through muddy ravines...in the dark... at 2 am ... to access Joe's blood, while he attended an overnight Hockey Camp.

You see..

Yesterday, after school, as I was wrapping-up from work ...

Joe phoned:  "Mom! I was invited to a sleepover...for Memorial Day Weekend! ... on this Friday! ... can I go?!"

My eyes filled:  "Sure bud.  We'll have to figure out the diabetes." (sErIoUsLy, why did I even need to mention the "diabetes part"?  I hate that I did that.)

Joe has never spent the night at a friend's house.  He is now ten years old.  Seven of his ten years have been lived with diabetes.  We have had friends over to our home for the night, but never vice-versa.  When he was younger, it seemed too daunting, to complicated.  Then the issue just seemed to slip off the radar.  For me it did anyway.  Not sure if Joe has given it much thought over the past few years.  I am ashamed to admit that I did not make this happen for Joe earlier.  I simply could have just asked a friend to have him over; friends that know diabetes fairly well after hanging with Joe and I over the years.  I simply just needed to ask;  to ask for "hhh...e.l.p".

As I was pre-discussing the "pre-slumber party diabetes plan" with Joe's-friend's-mom, I was apologetic when mentioning the 2 am check. Asking for "hhh..e.l.p." is difficult for me; to a fault.  I struggle to do it even for the wellbeing of my child.

"Help" (transitive verb) ~ 1) to give assistance or support; 2) to make more pleasant or bearable.

A day-in-the-life of accepting assistance and support, in order to make Joe's life with type 1 diabetes more pleasant and bearable.

I Don't Have All The Answers

"I knew about the highs and not taking care of my diabetes and losing arms and legs...but I did not realize I could feel so sick."  ~ Joe talking to me about his death~ate~a~cracker ketone sickness feeling from the other day.

"...so without insulin, would I just feel like that?  I would feel that sick until I died?"

*Uhh oh.  Not the dying business.  Please don't ask.  Please don't ask.  Please don't ask.*

"How long do ya think that would go on for?  The dying?  A year?"

*Ohhhh Man.* 

*Of course, he had to ask.*

"I dunno Joe.  Maybe a week or two?"

No one or nothing can really prepare you for all the conversations you will have with your children.  Limb loss and death have got to be amongst the toughest.  This talk of arm-less-ness and leg-less-ness and life-less-ness ("less-ness-es" added in to "lighten" the mood here) made me squirm as a parent.  What to say and how to say it; I do not know. 

Yesterday...




...Joe "raced" to CURE diabetes.

A day-in-the-life of  talking with Joe.

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'

An Hour's Time...

The numbers never cease to amaze me.  How quickly they can turn on you; for the better or for the worse.

10:00 am-ish today:  BG: 319    Ketones: 3.9.  Site was removed; cannula was kinked.  Supposedly Joe had been in the 300s since 6am.  I never checked in with him about his pre-breakfast number until now (head hangs and shakes from side-to-side in shame).  New site was placed.  A "correction" of 2.3 units of insulin was given.

"How long will this last?" ~ Joe to me.  He is referring to the death-ate-a-cracker-feeling that he is enduring.

"Hopefully not more than a few hours."

Joe's sick.  Ketotic sick.  He's never been that kind of sick before.  Sure, he has been vomit-bug sick with subsequent ketones, but not vice-versa...the ketones inducing the "vomit-feeling" sick.

He is pale.  He is lethargic.  He is nauseated.  He is crumpled in his bed.  He should be at a baseball game right now.  And, sadly I actually tried to push him to go and play.  (I have a "competitive issue".... and ahhh... a "suck-it-up issue)."

Sometimes, actually a lot of the time these days...I forget that I am messing with a disease.  Not sure what I think I am doing with all the blood sugar checking and bolusing and carb counting and needle jabbing.

The "invisibilities" of  type 1 diabetes are like a double-edged sword. On the one hand, I am thankful for Joe's "normal-ness" in his appearance. His ability to run, jump, skate, bike, scooter, gallop, skip, and careen astounds us all. I am thankful for it; truly I am. On the other hand, what is difficult; what stings; what is painful is that the very thing I am grateful for is the very thing that detracts on why a cure is so desperately needed. It takes away from all that is done "behind the scenes", hourly, to ensure Joe's safety and wellbeing. The hidden sequella of it all can lull you into a false sense of comfort. It can lull the public into the inaccurate perception that we "have it under control". It has even, at times, lulled me into apathy and indifference.

An hour later...11:00 am:  Joe's perky voice is calling from his bedroom announcing his recovery as evidenced by his sudden urge to consume a fluffer-nutter.  BG: 249    Ketones:  2.4.  Carbs: 48.  Insulin Bolused:  2.3 units.

Things are going to return to "normal" quickly it appears.  The numbers, like I said before, never cease to amaze me.  How quickly they can turn on you; for the better or for the worse.  In and hour's time, things are drastically different.  Must be unsettling for one's body and subsequently for one's psyche.

A day-in-the-life of  an hour's time of living with type 1 diabetes.

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.