Diabetes Blog: BETA BUDDIES

Going Well!

noreply@blogger.com (Reyna) — Sat, 25 May 2013 04:37:54 PDT

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

noreply@blogger.com (Reyna) — Fri, 24 May 2013 06:09:50 PDT

"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."

noreply@blogger.com (Reyna) — Wed, 22 May 2013 16:16:21 PDT

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

noreply@blogger.com (Reyna) — Mon, 20 May 2013 05:49:01 PDT

"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'

noreply@blogger.com (Reyna) — Sun, 19 May 2013 04:36:59 PDT

"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...

noreply@blogger.com (Reyna) — Sun, 19 May 2013 03:42:01 PDT

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"

noreply@blogger.com (Reyna) — Sat, 11 May 2013 07:03:08 PDT

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?

noreply@blogger.com (Reyna) — Wed, 17 Apr 2013 06:01:16 PDT

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".

The Dreaded "No Parent Zone"

noreply@blogger.com (Reyna) — Sun, 17 Feb 2013 06:12:47 PST

The "No Parent Zone" sign, printed on neon green backing, increased my anxiety level a bit.

I explained (or tried to, but how on earth can anyone "get it" unless you live it) to the registration lady that Joe had Type 1 Diabetes and that I needed to talk to his instructor, give him some sugar, and have an idea where he will be on the mountain before I can remove myself from the "parent-free" zone.

Joe was on skis for the first time in his life yesterday. Hockey is over for his team for the season, allowing time for new "adventures". Frankly, I was nervous to take Joe skiing when he was younger. I should have taken him, but I didn't. His blood sugars would frequent the 20s, 30s, and 40s when he was 3, 4, and 5 years old. I was not comfortable manning him solo on a mountain, in the cold, on skis (yes, I realize this totally doesn't sound like the Reyna and Joe that you have come to know, laugh at, and perhaps love just a bit).

Back to the sign, the registration lady, and the skiing...Joe started his day with a lesson...

The registration lady tried to usher Joe onto the back of the room to the "No Parent Zone". I was following Joe, unwrapping Starbursts. His pre-lesson number was 198 (it is morning, trust me...he will crash). The lady stopped me from following Joe.

Me: "Ahhh...I need to give him sugar"

Lady: "Now?"

Me: "Yep, now."

Lady: calls over the Joe to have him come to the "Non-Parent-Free-Zone".

I gave Joe 4 Starbursts (I shoulda given him longer acting carbs, but it was all I had in my coat pocket) and sent him back into the "Parent-Free Zone." I waited for the registration lady, who is dealing with other lesson-goers. Once she was free, I asked if I could speak to the instructor. The instructor was in the "No Parent Zone" and as you maybe can already tell there is no way, no how I am gonna access this "Parent-Free Zone"...and apparently the instructors don't come outta the "No Parent Zone". So the registration lady stated that she would inform the instructor of Joe's Type 1 Diabetes, that he has sugar in his coat pocket, and that I will be located at the bottom of the hill if Joe needs me. I watched the registration lady go tell the instructor. I kinda waited to try to make eye contact with the instructor so that she knew what the mother (and bad-a$$ pancreas) of Joe looked like.. ya know ... in case she needed my assistance. She never looked over. I left feeling a bit nervous and anxious. I was confident in Joe though. He had sugar...he would be fine...

Off to the bottom of the bunny hill I went. I think they really discourage this. Oh well. I wanted Joe to know I was there if he needed me.

45 minutes or so into the lesson, the instructor called down the mountain (hill...), "Joe's mom?"

Me: "Yes, is he low?" (I forget he doesn't speak Diabese)

Instructor: "Ahhh...I wanna move him up to another class. He can already stop and turn and he belongs in the Moose or Raccoon Group, not the Chipmunks."

Me: "Will he be going up higher on the mountain?"

Instructor: "Yes."

OK. So I went with it. I checked Joe's blood sugar again (about an hour after the 190-whatever and the 16 grams of carbs). He was 134. I give him a couple of glucose tablets and then he is going to apparently slug back some Hot Chocolate in the "No Parent Zone". So, I went with that too. Just have like a smallish amount of Hot Cocoa Joe. Yeah, right. Who knows what he consumed in the "Parent-Free Zone". Alls I know is that when the lesson was over and Joe was begging me to rent skis and get a lift ticket so that we can conquer the mountain together his blood sugar was 396. I did nothing with the number. It'd burn down. I had more pressing issues like I was gonna have to ski. I had not skied since 1996. I tore my ACL (Anterior Cruciate Ligament) the last time I skied.

Lift ticket purchased, rentals donned, I head out to get Joe off the bunny slope. He instructed me on how to insert my boots into the bindings. Once the skis were on, I was comforted that they felt pretty natural to me. Off to the lift Joe and I went. There was no line. Once the chair passed us to scoop-up the people in front of us, I tell Joe to hurry and get up to the loading line. I then heard him say "crap"...as, I got scooped up by the chair; Joe did not. He had dropped a pole and was two chairs back from me on the lift. The people behind him are yelling at him to pull his safety bar thing down. He did. The only comfort to me at this point is that his number was 390-something the last time we checked and that he could not possibly be low and dangling 30 feet over the earth, solo. (Now let me insert here that most parents would be worried about their kid dangling precariously over the earth while trying to man poles and while swinging their skis a bit too wildly - in my opinion... especially when it is their kid's first time on the lift, I think the diabetes just escalates that worry and I was so very, very, very calmed by his previous high-ish number...trying to not think that perhaps his vision may have been a bit blurry with the high.) Anyway. He exited the chair like a pro. Off we went to enjoy some green circle runs. We did several of the same run...off the same lift.

Then...

We decided to mix it up a bit. We tried a new lift. This lift looked long. This lift had some sort of midway exit. As we approached the midway exit, Joe thought perhaps we should get off. Me? I thought what the heck? We should scope out the top. So, up...up...up we went. When we exited, we had two choices to get down the mountain. A blue square to the left or a blue square to the right. We took the blue to the right. It was narrow. It was icy. I think I maybe said some inappropriate things.

I finally talked him into lunch. BG was 262. He ate. I bolused for the majority of the carbs, but did not "correct". Out we went, for more.

By the end of the day, Joe and I were sticking with our first lift/run combo. Joe would mix it up a bit and go on different runs than me and we would meet at the bottom. One time I was waiting and waiting and waiting for Joe. Lunch bolus was on board. It had been about an hour since he had eaten. Nothing scares me more than losing him. It isn't just the losing a kid thing. It is losing the kid and people not knowing about the blood sugar business thing. It is the lost in the woods...comatose from a low... in the cold ... kinda thing.

Welp, he was fine. Apparently he decided to go off some sort of wooden-ramp-jump-thing and did a face plant.

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

The Interrupter, Refuser, Moper...

noreply@blogger.com (Reyna) — Sat, 09 Feb 2013 06:08:43 PST

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:

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.
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.

Yep, Still Alive

noreply@blogger.com (Reyna) — Sat, 09 Feb 2013 04:27:00 PST

First off, Hellllloooooo out there!!!

Yes, Yep, un-huh, of course, absolutely, positively ... Joe, Bridge, and Dave, and I... we are all still alive. Here is what has been going on: I got a job as an Elementary School Nurse. I took down The BUDDIES for awhile because I wasn't sure about my language choices and the school nursing (elementary school nursing, none-the-less) gig. But, ya wanna know what? I wrote those posts as part of our story in living with diabetes... so, I am leaving them up. I will, however, keep things a bit more clean and tidy as I continue sharing publicly. OK? Ok.

I sure hope you keep reading.

A day-in-the-life of continuing to share our journey with Type 1 Diabetes.

"I Take Full Responsibility Mom" ~ Joe Maher

noreply@blogger.com (Reyna) — Sat, 02 Feb 2013 03:44:00 PST

I have written on the BUDDIES to humor, to help, and to let other Type 1 families know "same-same". Our daily grind goes unnoticed by most. Our "dangers" of activity and food and the lot seem silly to those living the "normal-normal" and not the "new-normal" that we endure. Today. Today we had a bit of a scare.

Right now I am writing because I believe today taught me some valuable lessons; things that I would want to share. Right now I am grateful that I was with Joe during the following events and that he was not out in the community alone for the one to two hour chunks of time that we have built up to comfortably and confidently as a Type 1 family trying to navigate our way through diabetes management, growing up, and independence-muscle-flexing.

Today...

As I picked-up Bridget from school....

Joe to Bridget: "I had a diabetes crisis today." ("Diabetes Crisis" - his phrase, not mine... nice drama Joe)

Bridget: "Oh..." then she somehow proceeded to "blah...blah...blah-ing" her way into changing the subject to boy-girl-middle-school-drama.

Little did Bridget realize the truth that Joe spoke. He did. He experienced a diabetes crisis. He received approximately 50 units of insulin around noon today (why this is bad). To put this into perspective, Joe's body and his carb consumption usually utilize around 15 to 20 units of insulin daily.
He received 2 to 3 days worth of insulin in one bolus. The pump did not malfunction. Let's just say that Joe had the cartridge out of the pump...the cartridge remained connected to Joe. Joe received the contents of the cartridge subcutaneously in one fell swoop.

Joe thought that removing the cartridge from his pump was an "easy way" to disconnect from his pump (long, long story). He did not realize the danger that he placed himself in by doing so. He is mad at himself. He takes full responsibility. Yes, he is nine...but, he gets it...he "got" it...the gravity of the mistake. He missed the rest of his day at school. He missed Math Olympiad. He missed hockey practice. He did not bemoan any of it because he knew he was fortunate to be conscious and to be able to free-base carbs like nobodies beeswax.

Luckily, we have been able to manage the resulting low trending blood sugars at home. Luckily, Joe has a healthy appetite.

It is now 8pm, 8 hours later, Joe has consumed a few hundred grams of carbs for "free"..both long and short acting. Joe was disconnected from his pump for the first couple of hours after the 50 unit bolus...his basal rate is currently halved. His blood sugar has not seen triple digits since the incident.

I am waiting for the lows to subside and the subsequent highs to ensue.

I have a feeling it is going to be a long, sleepless night.

A day-in-the-life of a huge mistake and lessons learned:

Teach your kid to never, ever, never, ever, never take the cartridge out of the pump while connected to it.
Never, ever, never, ever, never, ever underestimate the power of ginormous amounts of insulin. Seriously...it is 8 hours later...I have not bolused for 1 gram of the hundreds that Joe has consumed in the last 8 hours.
We are fortunate. I am so very thankful that Joe is OK.

Welp, He Did Good. I Did Not.

noreply@blogger.com (Reyna) — Sat, 02 Feb 2013 03:44:00 PST

We're up...

Been up since 5:30, avoiding the breakfast IOB...Joe's tryouts are at 8am. Last night, as Joe went to bed, I asked him to wake me when he woke in the morning. Told him that I would get his breakfast ready right away...plan was to hopefully feed him before 6am. Breakfast, bolusing, and morning hockey have notoriously been problematic for us over the years. Joe's body seems to be extremely insulin resistant with his first bolus to cover carbs. His breakfast ratio is a 1:10 (the rest of the day it is a 1:20 to a 1:50...interestingly enough the 1:50 comes at morning snack to put the "brakes on" the 1:10).

OK...that's the boring stuff...onto the good stuff...

Tryouts (part 1) went well. Well, that is, Joe did well. He skated hard. He did his best. Dave and I were proud of him. Most importantly, Joe was proud of himself. Felt he did good.

I was, however, a bit disappointed in myself. I share everything, too much perhaps, here. I share the good, I share the bad. I am not always pancreating perfectly and, as you know, my parenting tactics have their own set of issues. Combine alternative parenting, with being a pancreas, and with being a hockey mom...well, I mess up. A lot.

Here is what happened...please don't judge too harshly...I just wanted my kid to be evaluated on his skating...not on coming to the bench...I just so badly wanted for this chunk of time ...tryout-time ...for diabetes to not be involved. I always say I don't really care about where Joe gets placed as a result of these tryouts. My actions and behavior yesterday...well...they speak otherwise. I need to take a look at that, in myself.

Joe's pre-tryout blood sugar was 288. No IOB. I did nothing, thinking he would skate it down. Joe's and my plan included a blood sugar check half-way through the tryouts...at the 35-ish minute mark.

There were about 40 children on the ice. They were each assigned numbers and were wearing a corresponding pinnie. Evaluators were sitting on the opposite side of the rink, with clipboards... The kids do drill-after-drill-after-drill...repeating each one several times. 20 minutes into the session the kids are in like 6 lines...whistle is blown...a skater from each line takes off...skates hard to the blue line...hockey stops...whistle...another wave of kids takes off...first wave moves onto next line...whistle...third wave of skaters take off...first and second waves are moving on down the ice...skate.stop.skate.stop.skate.stop...they looked like soldiers. During this intense skating-hockey-stopping-drill, Joe peels out...to the bench...looks up at me and gives me the "finger-poke" sign, indicating he feels low.

Fine.

I noisily clump and clop down the bleachers in my newly purchased Old Navy ankle boots (bootlets?)...Woodchuck slung over my shoulder.

I was running fast. I didn't want Joe to miss his evaluation time. As I rapidly approached the bench, I hear a coach telling Joe to "get out there and hustle". I chime in with a "he has diabetes...needs a blood sugar check". He backed off. Told us to take our time...meanwhile, Joe is missing out on evaluation time...looking like a ninny to the evaluator guys holding the clipboards across the rink. They don't know our situation. Not sure I want them too, but don't want them to think my kid is a big baby that needs to go to the bench to be coddled by his mommy.

In one fluid motion...I ran to the bench, pulled out the glucometer...loaded the strip...pulled out and cocked the lancet...Joe's number was checked. He was 271.

*thought here is that site is going bad...mid 200s all day...not budging...Joe's number will hold steady for the rest of tryouts*

So, I said to Joe something like ... "Don't come back over to the bench. You are fine. You are 271. You're number hasn't budged. They (my eyes dart over to the clipboard guys) are evaluating you. You don't want to miss skating time for unnecessary checks. Don't come over...unless..."

"Mom, I felt low."

"Yeah, I know...but your not...go skate...and...have fun." (but what I really meant..go skate your patootie-off...screw the fun)

So, off he went. He skated. He stick-handled. He did fine.

Then, with 15 minutes left...he comes to the side of the rink. I am looking at him with a "what can you possibly need?" look...mascara-fringed eyeballs kinda buldging outta their orbits. Through the glass, through the helmet, through his gestures, I make out that Joe now has to go pee. Denied. I somehow convey back by pointing to the clock and giving him a "what-the-what?!" look with exasperated arm gestures that pee-ing will have to wait. He skated off.

Not sure how the mid to high 200s feels on one's bladder. He finished though. Did well.

Post-tryout number was 273. Changed his site. Only 1/2 corrected and bolused for dinner. He came down to 100 within and hour, or so. Had to stop the crash with a couple of glucose tabs.

A day-in-the-life of diabetes being part of it all...even when I wish it would just go away.

Never Let Your Fear Decide Your Fate

noreply@blogger.com (Reyna) — Sat, 02 Feb 2013 03:44:00 PST

60 minutes or so...ago...

Driving back across town to buy a 564xl black cartridge for our printer. Gotta have Code of Conduct printed and signed and Medical Form printed and completed by 3:30pm today.

...for Joe's hockey tryouts.

While driving, I am on the phone "directing " Dave, who is manning Joe.

"Feed him something now. I don't want to go into tryouts with IOB if we can avoid it." I've said it once and I'll say it again...never, never, never underestimate the power of IOB.

You see, I am nervous. I don't wanna let Joe down. A low or serious high can effect Joe's well being and subsequently his performance. I want to make his blood sugars be a non-issue today, tomorrow, and Monday (his three days of tryouts).

My favorite song these days...is "Kill Your Heroes"...I love the part that goes "never let your fear decide your fate"... Gets me pumped up and rings so true.

A day-in-the-life of fretting over my pancreating abilities for my son Joe.

D' Diligence

noreply@blogger.com (Reyna) — Sat, 09 Feb 2013 04:01:23 PST

This just in...

By the way, I am grumpy...have a cold...

Car ride home from school, about 10 minutes ago.

Me to Joe: "You ordered the school lunch for the field trip tomorrow. Right?" (We filled out forms for the all day hike a couple of weeks ago. My mind is already carb-counting-out his lunch and trying to settle on some sort of basal reduction plan that may or may not work depending on the Universe's alignment and 'tude tomorrow...oh, and Joe's growth hormones, exertion level...hikes have notoriously left me a wreck in the past. My worry of losing Joe in the woods connected to lethal amounts of insulin dripping into his body is a hard habit to shake. He hikes fast. I am usually clambering up or down some mountain paces behind him...yelling for him to slow down...it has been like this for years... yes, it is a little embarrassing)

DUH-faced Joe: "Mom! You did not tell me to hand in the forms."

*internally going all kinds of ballistic*

Let me tell you the system. The school sends home a folder. Every.Friday. The folder has two sides. One side is labeled "home" and one side is labeled "school". So the forms to view and complete are in the "home" side of the folder. I view them. I complete them. I then put them in the "school" side of the folder. The folder then makes it's way to school via Joe's backpack. Now, I don't know how the folder traverses the school from this point on, but I am assuming that some-how, some-way those forms get to where they need to get. Hopefully the issue here is that Joe forgot about those particular forms on that particular week a couple of weeks ago. Hopefully he is all set to go...for tomorrow. Hopefully, I am frustrated for no reason.

Me: "Joe the forms were in the folder." (firm, no-nonsense voice)

Joe: "Ahhh .... what folder?" (mind you, there is only this one folder in Joe's life right now)

Me: "Joe, this is your job. I put the papers in your folder two weeks ago. It had your permission form. It had your menu choices. It let them know that I am riding the bus and going on the field trip with you. I am gonna blow a gasket on ya."

"And ...did you turn in your book order?"

*his blank expression spoke for him...he forgot to turn that in today*

"Fine. If you don't hand in the book order, you don't get the books. That is a logical consequence." Using tactical parenting lingo while actually parenting is most likely not smart. I am giving him an unfair advantage.

We pulled into the driveway. I had, finally, calmed.

Bridget, Joe and I settle into the kitchen. I look over Joe's daily diabetes log. We are still struggling with managing a large drop from pre-recess to post-recess. At this point, I hesitate before looking at the numbers...depressing.

Joe notices me looking at his numbers.

Joe: " I was double-downing before recess..." (he was 108 while Dexter showed the rapid drop)

Joe continued on: "I didn't go for an Oreo~boost. I needed fast-acting sugar for that number ... with the double-down and all. I went for Skittles".

Joe's day-in-the-life of being a normal, forgetful nine year old boy while showing D' diligence.

The In-Between Place

noreply@blogger.com (Reyna) — Sat, 02 Feb 2013 03:44:26 PST

11:58pm last night...on the heels of the news of another child lost, at the age of 13, to Type 1 Diabetes...

I hear it. Is it part of my dream? As I lay there in some sort of state between wake and sleep, I try to figure it out. The sound. What is it? Then it stops. My mind rests. I slip back into sleep.

It starts again. I hear it. My body and mind struggle with the sound; having a difficult time placing it.

Some nights it seems that Joe's Dexcom can alarm for a good hour before I wake enough to identify it. There are hours of my nights that are spent in that "middle" place...not awake...not sleeping...in a cloudy haze. Too tired to wake. Too awake to sleep. If that makes any sense what-so-ever.

Finally, I placed the sound. Shit. It is Dexter.

"LOW" is on the screen. The "Under 55 Low" alarm.

I kinda lay beside Joe, as I ready the glucometer...eyes half-focused...so tired...cannot really tell if he is breathing...he is not really moving...or responding to my touch as I handle his finger for lancing. Good. The blood comes quick after the poke. A sign of life.

The blood is wicked up the test strip. The glucometer counts down 5~4~3~2~1. A 105 graces the screen.

I shutdown Dexter. His accuracy has been off with this sensor.

I leave my 3:00am alarm set. The 105 bears watching.

A day-in-the-life of my nights watching over Joe.

Impatient Pancreas

noreply@blogger.com (Reyna) — Sat, 09 Feb 2013 04:00:16 PST

Yesterday...

Another first. Joe walked to the "Tween Center" after school (yes, he is only nine...apparently they are called "tweens" these days). The Tween Center is where he and his 4th and 5th Grade pals can go and "hang" for a couple of hours after their school day. The plan was for him to have his phone on. He was to call me with his blood sugar number and the carb count of the snack that was to be served at the Center. (I had called the staff earlier and notified them of Joe's Type 1 Diabetes, went over Joe's and my plan and ... really ... what they needed to be aware of was lows and what to do for them if Joe was unable to help himself.. aka shove some sugar in his mouth and call me)

His pre-leave-school number was 160-something (@ 2:45pm). He was to call me with a blood sugar number and a carb count when he was going to have snack. I was to pick him up at 4:30pm.

Joe called. At 4:00pm.

"Hi mom..."

"Hi Joe..."

"Ahhh we are going to have snack."

"Ahhh OK"

*lots of background "tween" noise*

"Mom?"

"Yes...Joe...did you check a number?"

"No...I forgot....can't find my backpack..."

"Joe...look for your backpack..."

*shuffling...muffling...*

"Mom, I am gonna put you down for a minute"

*For the Love Of God*

*more shuffling......then a muffled "can I pogo-stick?" in Joe's voice was heard*

"Ok..Mom? You there?"

"Yes Joe...I'm here."

"I found my bag."

"Joe! Do a check."

*Ugh...he is making me a cranky pancreas*

"Wait right there Mom."

*waiting*

*what the fuck else am I gonna do?*

"106"

"OK, what are you gonna have for snack?"

"I'm not eating, they only have apples."

A long conversation about pretty much nothing in my day-in-the-life of being Joe's pancreas.

Foul Fowl

noreply@blogger.com (Reyna) — Sat, 09 Feb 2013 04:00:16 PST

Yesterday...

Dexter was double-up-ing, Joe's blood glucose was in the 180s. I smacked him with a 50 gram bolus, straight up...and added a few tenths of a unit for good measure. Yeah "exact science". That may cover half of it, then I'll figure out the rest once I know if he is gonna eat it all. It's gotta be like a good 120 gram-er or so. Dave plopped down at our table and gave the carb count a guess. He guessed 70 grams. Me, my thought feed went something like "do monkeys fly outta my butt?"...it's at least 100 grams...the bread was thick...he was gonna have to dig deep on the ends to get to the chicken.

Costco, the "Chicken Bake". The sucker is like a foot long. The chicken is diced up in like an Alfredo-y sauce. It is then encapsulated in soft pillow-y bread. The bread layer is substantial, especially on the ends. The bread is then topped off with some sort of sprinkled cheese, shaved Parmesan or Asiago.

Joe ate 1/2 and was still going strong ...the 50 gram bolus was mentally checked-off my on the fly bolus-plan. Waiting...waiting...watching... is he going to eat the whole damn thing?...waiting...watching. In our basket, our Healthy Choice Fudge Bars were melting. The 100 calorie per bar goodness should not go to waste. "Joe can ya take the bake on the go?" Joe was agreeable.

I bolused before we head to the car. I guessed another 70grams. Dexter had smoothed out. I decide to combo it a bit, I did a 60/40 over an hour. We got up from our table. Joe was holding the paper plate with one hand...haphazardly... with the bolused-for fowl sliding all around it as he lives in his 9-year-old world. My eyes are glued to the fowl. Dear God.

"Joe, be careful."

He has no clue...the stress I endure as his pancreas!

"Joe, watch the plate."

For the love of all that is good and holy in this world I don't give a rats-ass about the plate...hold the chicken!!! ... why me? ...why Joe? ... why the bake????!!!

"Joe, hold onto the chicken bake."

Seriously...at this point we are in the parking lot...and he doesn't seem to care that that chicken bake could just slide off the plate and we are gonna be down like 40grams.

"Joe, I bolused you for that."

Finally, we made it to the safety of our car. He then, finally holds the chicken...bake.

On the ride home, a smiling Joe mentioned that next time he is gonna go easy on "his pancreas" and get a sandwich.

Numbers went something like this:

179 (pre-chicken-bake consumption)

180s (on Dexter...1.5 hours after consumption)

198 (3 hours after consumption)

He climbed to 260 5 hours after consumption, but there was popcorn and chocolate involved.

Day-in-the-life of dealing with Costco fowl.

KinKy In The Car

noreply@blogger.com (Reyna) — Sat, 09 Feb 2013 04:00:16 PST

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, the cigar~tampon~sex-ed in the bathroom a couple of weeks ago wasn't appreciated. 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...."

Thought feed went something like...*Diabetes is a Douche Monkey*

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 ass 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

noreply@blogger.com (Reyna) — Sat, 09 Feb 2013 04:00:16 PST

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.

SIX

noreply@blogger.com (Reyna) — Sat, 09 Feb 2013 04:00:42 PST

Welp.

It was six years ago today, at about this very time that I was driving Joe to his Pediatrician's office. It was there that his urine was dipped and sugars and ketones were detected. It was then that he was diagnosed with Type 1 Diabetes.

An important day that changed our day-in-the-life.

CPS Alert...

noreply@blogger.com (Reyna) — Sat, 09 Feb 2013 04:00:42 PST

Time for starvation (no food...water and diet drinks are OK), immobilization (Phineas and Ferb while lounging on couch), and exsanguination (blood sugar checking every hour). It is basal assessment time. Trying to get a handle on Joe's numbers. Things are less than optimal. (bad).

My DREAM ASSESSMENT:

Who the hell am I kidding? On a picture of my Dream Assessment, the insulin pump would read 0.0 units/Hr.

The BUDDIES post on a previous Basal Assessment.

A day-in-the-life of cruddy cartooning, being a pancreas, and wishing for a CURE

The Tale Of Three Little Dexters

noreply@blogger.com (Reyna) — Sat, 09 Feb 2013 04:00:42 PST

First off, did you know that basil should be stored like fresh cut flowers? Clip stems and place in water. I had no idea. Basil has been decomposing in my fridge and in my pantry for years.

Now...onto our story...

I wasn't too concerned about it when the wet Joe emerged from the house with a glowing Dexter #3 craddled in his open palm. The screen was blank. Joe was apologizing profusely...."forgot...Dexter...bath...is he broken?" Joe continued on "I cannot believe I forgot to take him off." Joe has worn the Dexcom CGM for the past two and a half years. This responsible young man (yes, I know...I called him a "troll" the other day) has never gotten a Dexter wet. Dexter #1 and Dexter #2 never went for a bath, a swim, a hot tub, or a dip in the toilet bowl. I certainly did not want Joe to feel bad or guilty about the "Dexter #3 drowning".

"Joe, don't worry...I have back-up Dexters...two of them." I can plug in your transmitter number into another Dexter and it will display your numbers after we calibrate him. And. I can try to fix this Dexter (#3). Knowing Joe's aversion to bathing, I was not too concerned about Dexter #3 being too water-logged. My confidence in Dexter #3's salvation diminished as I came up the stairs to start up Dexter #2 ... I saw Legos on the bath tub's edge. Shoot. He was probably in there, in the water, for awhile.

Between my programming of the transmitter number into Dexter #2, the rice bath of Dexter #3, and the storing of yet another Dexter..."Dexter #1"...in the basement, Joe was kinda amazed by me. I think.

Here is the simplified version of what I did with Dexter #3:

1) Shake it.

2) Put it in a sandwich baggie filled with rice.

3) Shake the shit outta it.

4) Put it back in the sandwich baggie filled with rice.

Here is the blow-by-blow:

I put him in a baggie filled with rice for like 12 hours. I then plugged him in. He beeped some. The "Initializing" screen flashed. Water droplets were viewed beneath the screen. He blanked out. With his "plugger in opening" facing downward, I shook the ever-loving shit out of him. Water droplets spewed out all over my thigh. I was kinda whacking him against my leg. As I whacked, Dexter beeped.

A "San Francisco treat?" I don't think so.

I then slapped him back into the sandwich baggie of rice...kind of nestled him in there...he was showing me the "charging" screen. Kind of concerning, since he was not plugged in! He was in the bag of rice.

Ahh...He is NOT plugged in...and...that is

the "He is plugged in screen."

He sat in the rice for like a day. Then I plugged him back in. He "initialized", the main screen popped up. The date and time reflected his "time of death" a couple of days prior...he even housed the last bit of Joe's blood sugar data. When I tried to update the date and time, Dexter refused to work.

Time Of Death

Data At Time Of Death

Back into the rice he went...for like another day. Now he is programmable. There is a little water staining on his screen. I have yet to see if he will receive the transmitter data accurately, as Joe is still hooked-up to Dexter #2.

A different plan of attack on reviving a Dexcom 7+ CGM was found here.

The BUDDIES Dexcom 7+ CGM stories can be found here, here, and here.

Resuscitating diabetes equipment in our day-in-the-death...ah...I mean "life"...I hope.

RAGE Tweaking

noreply@blogger.com (Reyna) — Sat, 09 Feb 2013 04:00:42 PST

"Joe! Can you go with a higher protein snack this morning? To ward off the lows?? Like a Go Lean?"

"Sure Ma"

"Time to goooooo!" (where is he?)

I find him in my bathroom, LA Looks being combed into his hair. A shit ton of it. The style...Eddie Munster-ish. Joe has school pictures today.

Eddie..NOT Joe

"I think you outta knock it off with the gel Joe."

"I just wanna look nice."

******

Yesterday Morning...

"Your eye make-up is too much. What do ya put on there? Purple, blue? And the pink is up way too high.." (troll)

Joe and I were within a foot of each other. His eyes, apparently a little too focused, on my face.

"What's up with the peach fuzz...peachie..." (minute, extremely blond facial hair issue here...head hanging down as I type and share ... I am the pancreas of a little troll people)

The tubing would not allow me the distance to escape his cajoling. I was trying a new plan of attack for Joe's school day. I was doing something I have never been pushed to do before. I was programming Joe's pump for a different basal pattern for Mondays through Thursdays (labeled "Weekday") and then his normal/usual basal pattern would be used for Fridays, Saturdays, and Sundays (labeled "Weekend").

School is not playing well with Joe's diabetes; in particular, recess. Oh the joys. Recess is before lunch Mondays through Thursdays. At that time, Joe should have no IOB from morning snack. Snack is over 2.5 hours prior to recess. Joe's Insulin of choice is Apidra (rapid acting, shorter tail end). Joe goes into recess with blood sugars of 140s...or so...will eat two Oreos or drink a juice or shoot back Skittles...and will come out of recess in the 60s or 70s. Yesterday I halved the basal for an hour and a half prior to recess. Still nothing. Still feeding the insulin. Still low-ish (like he was 70) heading into lunch.

For the Love of All That Is Good and HOLY in this world ...

So last night, I tweaked his "Weekday" basal again. I decreased it from 0.15 to 0.075u/h...starting 2 hours before recess (WTF...right? Not even sure if that will make a difference?) and I decreased his morning snack ratio to a 1:50. I really don't want to give a free snack at 9am and have him riding high for the two and a half hours leading into recess. If we have to "feed" recess, we will. I haven't had to "feed" activity...with no IOB ... since he was like in pre-school.

Feeling frustrated.

Multiple basals now entering our day-in-the-life. UGH.

Thank You Phone Caller Friend. Community.

noreply@blogger.com (Reyna) — Sat, 09 Feb 2013 04:01:10 PST

You can thank the letters "W" and "M" for the following post. I have been up. I have been up at 1:40 correcting a 300. I have been up at 4:15 making sure the correction worked or that it didn't induce coma. And I am now...just up..because who can sleep with all these ups and downs. I wonder how Joe's body feels while it is "W"-ing and "M"-ing? And I swear that right before the "W" there is like a finger pointing at me...like I did something wrong.

**********

Phone call the other day after school.

Me: "Hello?" (newish phone, didn't have friend in my contacts yet, hence the "?")

Phone Caller Friend: "Hey...we just saw Joe pushing his bike up Brickyard (a street)...he looked a little .. tired. Does he have a phone or something? ... Just thought you would want a heads-up..." Now I am pretty sure she was calling to give me a diabetes "heads-up", but maybe it was a normal "heads-up" call. My mind almost always goes to "diabetes" where Joe is concerned.

Me: "Thank you so much. I just checked his number at school. It was in a good range for him to ride home. He is walking because ... bike is a BMX bike ... no gears (by the way, let me insert here ... a total blood sugar buster). Please always feel free to call if something looks off. There may be times Joe could use some help."

A village. Did I ever tell you that I actually do live in a village. Essex Junction is a village. A village, by definition is a community smaller than a town. I think the term "It takes a village" really hinges on the "community" part of the "village" definition. Community: A group or society helping one another.

**********

This year, after school is going to be a bit different. Joe will bike home and go to after school activities. I reflected this on his daily log; the piece of paper with carb counts and instructions that accompanies Joe to school daily via Woodchuck. I have added a "sugar sliding scale" of sorts to boost him according to his 2:45pm number.

Presenting the 2012 "LOG"

Here is the blown up part of the "sugar sliding scale" instructions. I also like to use it for P.E. Days.

Community in our day-in-the-life of looking out for Joe.