Thursday, February 09, 2006

Fail-Safe

(fāl'sāf')

An action taken to avoid disaster.

10:15 AM

Joseph calls with his post-breakfast blood sugar.

"Hi, mom. I'm 228 . . . you know, just a spike. Oh, and we're having the same snack as yesterday-- Cheez-Its."

"Okay, bud. Let's get that bolus on board and not worry about a correction."

".45-- should I go?"

"Go."

"Love you."

"Love you too, darlin'."


12:00 PM

Joseph calls yet again, this time with his pre-lunch blood sugar.

"Mom, " he says between telltale chews.

My heart sinks.

"I'm 67. I'm really, really sorry," he continues, in a voice muffled by the familiar crunching of several large glucose tablets.

"Honey, there's absolutely nothing to be sorry about. You're low. This is gonna happen sometimes. Really bud, it's okay."

"But, mom, you don't understand," then, he says miserably, "I didn't have a snack."

"What?"

Immediately I'm calculating in my head. No food since 7:00 this morning.

Five hours.

And more insulin.

Almost half a unit is a hell of a lot for this kid to take in with no food. Thank God he was high going into snack.

It should be all right.

Deep breath. Then, with no trace of the panic that has begun to take hold.

"It's okay. But honey, what happened to your snack?"

"I forgot all about it."

"Oh, honey."

"And... well... Mr. S. never gave it out."

"Oh."

Hmmm.

Now, along with fear and worry, anger jumps into the fray.

"Honey, I want you to call me back in 15 minutes with your sugar," I say, in as calm a voice as I could muster. "Just stay in the nurse's office, okay?"

I hang up, and immediately punch in the number for the school.

"May I speak with Mr. S, please?"

Dead space of hold.

"Mr. S, here."

"Hi, this is Sandra Miller, Joseph's mom. I'm calling because I just spoke with Joseph. He's having a low blood sugar right now. Apparently, he bolused for the snack, but that snack was never given out."

"Oh, well. You know, we didn't really have enough crackers for the whole class so we didn't hand them out."

A pause, and then in a bit of an awkward tone:

"And . . .well . . . Joe does have peanut butter crackers for those times when he needs them."

"Yes, that's true," I respond, struggling to hold my temper. "But he was told there'd be a school snack. He bolused specifically for those Cheez-Its. Then, when they were never given out, he just forgot. We really need to make sure that he eats something whenever he's given himself insulin for food. I guess I'm just looking for a fail-safe here. I really need to know that someone is watching out for him when he's giving himself his insulin. Making sure that if he forgets, he'll be reminded to eat something or bolus if need be."

I'm so damned combustible right now that if there is even a hint of disagreement, I'm just gonna blow.

"Sandra, I'm so sorry. I guess I need to be more involved with this."

"Yeah, that would be great. Really great."

12:15 PM

I get off the phone and just want to cry. But before I have the chance, the phone rings again.

It's Joseph.

"Mom, I'm 63."

"Okay bud, let's have ya eat three more glucose tabs, and check again. You came down pretty quick from that snack-time sugar, and that extra insulin is just pushing you down further. But it's okay."

12:30 PM

"Hi Mom," Joseph says, sounding much more like himself. "I'm 72."

The right direction, just not quite as high as I was hoping.

"Can you go to lunch right now?"

And so he did.

Rebounding hours later into the 300s.

I Hate This Damn Disease.

25 comments:

Penny said...

Ditto, Sandra

Vivian said...

Sandra,
I really hate that other people do not care about our children like we do. I hate that people do not take the time to understand how serious it is that they be in the loop with us. I am with you, I hate this disease.

Kerri. said...

I love moms like you guys.

You hate it enough so that we don't have to.

Ellen said...

Right Kerri, we hate it with every fiber of our being.

Good system you have going there with the communication with your son Sandra. You rock!

Shannon said...

It was bad enough that Joseph didn't get the snack he was counting on. But when I read that there wasn't enough and he was the one left out, well, that just left me plain pissed off at Mr. S.

I second Ellen's sentiment about you and Joseph having great communication.

Andrea said...

Sandra-

Here's sending you a cyber {{{hug}}}.

I don't think I need to state how much I hate this disease, I think that goes without saying. The unpredictability of it just makes things extremely difficult. Even when we doing everything we can to make it a little bit more predictable, there are outside factors that cause all that to be thrown out the window.

I think you and Joseph are doing an awesome job. I know, it's too bad that other people don't care as much as they should...it would be nice to know that there are others who have our back, so to speak. However, I guess we cannot count on that all the time.

My advice? Keep doing what you are doing. As others have said, you and your son have wondeful communication and I think that's extremely important.

Hang in there :)

Elizabeth said...

Sandra-
Everything you write is so inspiring. Hearing what you and Joseph go through make me see this whole other side of having diabetes that I was lucky enough not to have to go through. But you know, Joseph is so lucky to have a mom like you. My mom has been known to get confused and offer me insulin when I get low blood sugar.

I'm not kidding.

When you have a child that has diabetes, you are forced to learn about what the disease does to them. My mom has left it up to me. And I really get upset about that. I really admire your strength through all of this.

Wil said...

I'm with Kerri on this one. Your little guy has one hell of a great Mom!

Nicole P said...

I hate it too, Sandra. But, you did everything just right -- kept Joseph calm, comforted him, gave him instructions. A

And, you called the teacher right away. I'm especially impressed with this. It's harder, I think, to address a situation after the low is over and things are back to normal. You brought the issue head on to the teacher... "Joseph is having a low bloodsugar right now. And -- here's why. What can we do to prevent this in the future?" Excellent. There's no denying Joseph's got a great mom.

julia said...

You handled that talk with the teacher really, really well. And your calmness with Joseph is amazing.

I don't get why people don't GET it when we tell them and give them information and go over what might happen but they act like it's no big whoop. Drives. Me. Crazy. I wish all those stupid teachers and nurses could have been up at the hospital with me last year, when Olivia spent four days in the PICU with DKA. They could have seen how sick she got, how awful she felt for a couple of days. I wish they could see how disoriented she gets when she goes really low. I just wish they'd care even HALF as much as we do.

Shannon said...

Whoops. Read your post wrong and I now realize that no one got the crackers. But I'm still pissed that the Mr. S wasn't more protective of Joseph.

Laura said...

I am glad everything turned out okay, despite the 300 spike. Sounds like you have a very responsible son and you both take care of his needs very well. Oh but I know the feeling of being ticked off at someone somewhere that your child is "supposed " to be taken care of.

Jamie said...

Blech - my sentiments EXACTLY Sandra. I hate this disease to the core.

I ditto what others have been saying - the communication you have with Joseph is awesome - even though you weren't there, you WERE there for him and were able to talk him through it and make the necessary corrections. I can only hope my daughter and I have the same connection you two have when she hits school :) You're a great Mom - keep up the wonderful work!

Big (((((((HUGS)))))))

Ellen said...

Did you offer the teacher a shot of 100 units of humalog and no crackers? ;-)

FeatherIron said...

Yikes! I have so been there many times. Life with diabetes and dealing with the caretakes and educators our children have that know nothing about it-is a rollercoaster.

On a lighter note. We love Strickley Ballroom! Evangeline and I watch it all the time and it is quoted more times then I would like to admit.

BetterCell said...

Hi Sandra....That Mr. S. sounds like a real SCHMUCK. This is the problem, when you have to depend on "other people" for help or assistance as in the case with your son,,,,,They are not as responsible as you would be nor are they always there. Try this as a solution. Have your son carry a snack with him in a pouch clip so that he will always have access to it when needed. This also fosters a whole lot of independence as far as Diabetes goes. By the way, I do not consider Diabetes to be a Friend or an Enemy an Angel or a Monster. It is though an addition to who we are and as such cannot be ignred nor overly paid attention to as well (obsession). In time, everyone will develop his own philosphy that will serve the rest and other aspects to his life.
New York City still has the best bagels and lox(smoked salmon) compared to anywhere. If you are ever here, give me a shout and I will treat your family to some great food. As you know, I can be reached at: BetterCell.blogspot.com

Allison said...

OK- I'm afraid I'm going to be the Bad Guy here (or at least Devil's Advocate), but as the daughter of a second-grade teacher, I'm really not surprised Joseph's teacher didn't think about giving Joseph a snack. I mean, he does have twenty-odd other kids he has "parent" for 6 hours a day, and if you've ever volunteered in a classroom, you know how nuts that can be. I mean, I'm sure we've all forgotten to do something with our own children (well not mine personally) and they're ours and there's not as many of them. I just encourage people to be a little more sympathetic to over-worked, under-paid elementary school teachers. Unless you specifically said, "Remember to ask Joseph if he's eaten" I don't really know if Mr. S had that much responsibility. Joseph has peanut butter crackers that he is supposed to eat if he needs them, and well, he need them. But Joseph forgot. I know, I know, we shouldn't blame the little guy because diabetes sucks. But I would never blame my teacher because I forgot to eat a snack and that made me go low. Mr. S not handing out the snack isn't the problem. Not eating was the problem.

If Joseph ever is left out of eating snack because there isn't enough, he does have back-ups. That's why they are there (or should be). Joseph needs to know it's okay to speak up and say "Yo, I need a snack" rather than waiting for Mr. S (who didn't get it, doesn't get it and won't get it) to get the hint. I really think Joseph is old enough that he should be accountable for when he gives himself a bolus and then doesn't eat. Joseph is at the age where he should know No Carbs + Insulin = Low Blood Sugar.

I think the fact Mr. S apologized for Joseph going low and offering to be more attentive is AWESOME, not something we should scoff at. However, now that you've had that conversation, and Mr. S has agreed to at least something, he should be held accountable for that, but with anything, the best firewall to prevent something from happening is to teach Joseph to be vocal. Loud and obnoxious if need be.

ANYWAY- I'm going to get off my soapbox before the tomatoes start coming at me.

Oh, and you are awesome. This should be taken as constructive commentary, not critical bashing.

Sandra Miller said...

Allison,

First, you could never be the "bad guy" -- here or anywhere else.

And second, I think you make some valid points. In many conversations I've had this year with Mr. S, I've acknowledged to him (and myself) that with 19 kids in his charge, he's got a lot goin' on in that classroom (I've volunteered & chaperoned enough field trips with this class to get a sense of some of the challenges this guy deals with).

He really is a wonderful teacher.

That being said, he and I have spoken about the snack issue before. We've got a system in place-- when a school snack is not available (or Joseph has had a low), there are peanut butter crackers in Mr. S's desk for Joseph (kept there so that others won't raid Joseph's desk-- which kids have actually done!).

My problem with what happened this week is that Joseph was told there'd be a school snack-- even told exactly what that snack would be-- so that he could bolus for it.

Thus, Mr. S was aware that my son had taken insulin for food-- food he would be providing for him.

During that 15 minute break, when Mr. S realized he didn't have enough snack for the whole class, he simply decided not to pass any out.

Problem is, he never made an announcement to that effect.

Although this is not the first time Joseph forgot to eat a snack, it IS the first time he forgot after actually bolusing for food he was told he'd be getting...

Yes, you're right, Joseph is old enough to be accountable and vocal if need be (and believe me, he is NOT shy about doing this in class). But the reality is, he's still a kid-- forgetting stuff is gonna happen.

What I really, really want is to have some kind of back up-- at the very least, when an adult tells him to bolus for food, that same adult ensures that he gets that food.

When I wrote this post, it wasn't intended as an indictment of Mr. S, but rather to unload an incident that, to be honest, scared the heck out of me.

Bottom line, I can't be there every minute of every day to make sure he's okay. And, unfortunately, I'm not yet confident that my 10-year old son can always do it alone.

Allison said...

Sandra,

Your response makes perfect sense. I think I either had forgotten or didn't know that you had conversations with Mr. S. about this before. In that case, Mr. S. really did need to be accountable to his word, which he failed to do.

My response was also partially to people who might want to or did blame Mr. S. for what happened, and I just don't think that's fair to expect a teacher to always be on the ball when it comes to diabetes, or any disease for that matter. I just really get irritated when people say that teacher's don't care about children or that they just aren't trying hard enough, or whatever. I think I just take this personally because my mother's a teacher and if a mother of a child with, say, asthma or another condition that she isn't familiar with, I think I would be very upset if a parent called my mother "insensitive." There's a difference between being "insensitive" and "not caring" and just plain not being educated. There's a difference, and I wish more people would realize this.

Ok. Now I'm done. :-)

Shannon said...

Sandra,

Could you make it a rule that Joseph cannot bolus until he has the snack in hand?

Sandra Miller said...

Shannon,

The only problem with making this a rule, is that the class is supposed to eat their snack right when it's given out. And, because sometimes Joseph is on the high side going into the break, if we don't get that snack bolus on board first, we just can't get on top of those snack carbs.

Unfortunately, this was exactly the case last week (he was 228 right before snack time).

Caro said...

Sandra,

I'm very late coming in to this, and there have already been many vey helpful comments.

I hate diabetes too, because no kid should have to worry about whether or not he ate a snack. I hate it because of the dependence it forces parents, and people with diabetes themselves, to have on others. Because even as an adult, I sometimes need to be reminded to eat after I have bolused and gotten absorbed in something.

Diabetes is such hard work it isn't unreasonable for anyone to need some support. And Joseph is only ten. Once again, I think you are doing a great team job. Oh and FWIW, I think you handled the chat with Mr S really well.

Whenever I read posts like this, I get a sense of enormous respect for all parents of kids with diabetes. I can't really imagine how difficult it must be trying to control diabetes when you don't have it right there within you. You're often doing things at a distance - as you say, you can't be there every minute of every day - and having to rely on back up from others too.

Keep at it,

Caro

Kelsey said...

Reading your blog made me grateful that I have diabetes instead of (finger's crossed!) my future children. My husband and I babysat a 6 year old and 2 year old all weekend and had what we call "parent practice!" I can't imagine having to worry about a little one's diabetes. It's much easier to handle my own disease. You moms (and dads!) are the real heroes.

J said...

I hear you ! god the thinking and figureing out and you know if we did not have this Disease and the snack was forgotten it is minor to the people not involved but MAJOR to people like us, especial a kid who is just try to do what he is suppose too he should not have to remember everything he should be allowed to be a kid.. oo I was steaming to read that his teacher was just like OH! I need to get more involved HELLO ! you just realize this??? Wow Want me to call him ? LOL hang in there. Way to go on keeping Joseph spirits up I am sure it took alot to stay calm.

aaron said...

Sometimes you just try your best and it doesn't work. It totally sucks. I was diagnosed at age 7 (age 29 now), and I somehow made it through elementary school alive and well, despite all the highs and lows. And believe me, he seems to have his sugars under control far better than mine were. My advice is to just relax and breath deeply... accept that there will be highs and lows... and carry glucose tabs :)