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28 April 2013

What If?

We had a scary, scary low tonight. Third of the day - no, make that the fourth. It's derailed everything - packing for the tournament, baking muffins, cookies, or preparing the coaches' breakfasts. I'll be up quite awhile, but that's okay. I am, once again, too afraid to sleep.

A good friend and mom of a diabetic child shared an article on facebook tonight. An article from a diabetes advocate and blogger who lost her son to type 1 when he was 13. The article, while more of an announcement and celebration, caught me off guard given the timing. Miss N is 13, and the words lost her 13 year old to type 1 diabetes hold more power to stop me cold than Superman or Popeye with a can of spinach.

I dread losing my child to type 1 diabetes at any age. For the most part, neither of us goes there - we go about our business, she attends school, plays hardcore volleyball. I work on building my practice, search for a local RN involved in diabetes care to work with and earn my CDE. It's all good, we tell each other in passing. 

Even when it's not. Even when she hates this disease so much that she eats and kind a sorta but not really forgets to bolus. Even when someone at her school sends her to the healthroom on her own sporting a terrifying 43. And that's just it, my psyche screams at the words just typed. They whoever they happen to be in any given moment, DO NOT GET IT - NOT FOR A SECOND because we can't explain it in a neat, tidy little package or logical excerpt. Diabetes, especially type 1 diabetes where insulin is taken around the clock, 24/7/365 without any breaks or holidays, never at the same exact rate as the day or hour before, never in the same amount for food, affected by colds, and stress, and WHO THE HELL KNOWS WHAT simply does not play by any set of logical rules or algorithms. 

Managing diabetes is an art that we attempt to make a science so that our brains feel better about what we're doing, and how well we're doing it. Sometimes we - make that  Ineed a reminder of that fact. 

Enter the second scariest low I've witnessed since her diagnosis - the one that took my breath away and hasn't bothered to return it yet.

This illness is about always being prepared. It's about treating symptoms and not numbers. 74 - typically a fair to partially hey that's great kinda number doesn't mean a hill of beans when she can't stand up, her eyes start to roll back, and she isn't making much sense. It's about the nervous flutter of "Do I need to grab glucagon, is 4 oz. of juice enough, where the hell is the cake gel...am I really supposed to figure this out on my own?" It's amazing how two tiny little words can be paralyzing... heart stopping.

What if? 

What if I wasn't there? What if I hadn't heard her, or been mad about the cheetohs? What if my anger at the cheetohs (which is really all about D when we get down to it) got in the way of my noticing? What if she hadn't spoken up? What if she feels like she can't, because of who she's with, or what's going on at the time? What if we couldn't find anything to give her - didn't know we'd run out? 

What if applies to seizures  coma, and yes death. It applies to the fear of loss and the guilt of finding myself unprepared. 

We fight constantly to live life in a way that cries loudly of our intent to support Miss N in living her life how she sees fit - diabetes be damned. We proclaim bravely that she can do everything her peers do, with just a little more work. But, it isn't just a little more work... it's a lot of constant, everyday, hard, time consuming work bordering on hyper vigilance. No matter how hard we try, we can't always predict the low, the high, when the insulin needs to get turned down, turned off (briefly), or cranked up. It's the trade off for tight control and the hope that our children will avoid the complications of diabetes that so rob their treasure chest of its quality of life

So tonight I will bake, pray, and check. A tear or two may escape my eye, and tomorrow she will play - beautifully, while I yearn for sleep and keep an ever watchful eye, ever ready to head off another low brought on by exercise. 

But- oh, does she ever love it. And that makes it worth every sleepless second.

06 April 2013

Musings of One Mixed Up Momma

Tonight brings a long anticipated, much needed, blissful sleepover away from home - for Miss N that is. That thought, swirling among my fuzzy neurons, buoys them with a sense of hope much needed. Sleep. Uninterrupted, luxurious sleep. God, I need that.

But wait...

Saturday? Crap, I need to change her site. And her sensor. Okay - move it to the morning. What's slightly more than half a day early going to harm? Outside my pocket book, that is.

Damn. She woke up on the low end and dropping steady. Need to delay infusion site and sensor change. Maybe before lunch, right after her hair appointment. I should be able to help with homework, work on the website, get some laundry in, and clean one bathroom before doing that. Right?

Wrong. A low, a high, feeling nauseous with trace ketones. (What the hell was that about?! A kink? Air bubble?) Troubleshoot all of that successfully - whew, being a pancreas is tough work. Now let's get back to that site...

What do you mean it's lunch time and dex shows you're rising steady? Can't your liver be like your pancreas and skip it's job for a bit? Dumb question. I like the life saving aspect of glycogen dumps - just wish they were timed better.

Deep breath. Lunch over, waited 90 minutes for insulin on board to hit its peak, BG 145 and there's still 1.45u active. Hmmm, it's dicey. My mind goes over all the variables. She's due at her friends in... LESS THAN TWO HOURS!! Ack! How will we know if the site's working? The sensor?

Oh no - I forgot to put the load in the dryer. Rats. (Because, right now - this very minute - is obviously the best time to think of this.)

We come up with a plan. Lukewarm shower, timer set to one minute. If I can insert the site in 2m, the sensor in one and drop her off 30m late, we'll know that it's working. Of course, if it fails, we're sunk. If it kinks... oh the horror. Guess I'll cross that bridge when we get there.

Wonder what the rest of my to do list looks like...

Nothing else is checked off.

And that is a day in the life of a pseudo pancreas. In fact, it's a relatively mellow, not so bad day in the life. Guess I wont' be sleeping uninterrupted tonight after all. Miss N will have to text every two-and-a-half to three hours until we're sure Dex and Lola are working together (CGM), and that her site's flowing nicely. Maybe next time.

I guess I can catch those last two episodes of The Walking Dead. At least I know that will keep me awake, and I might get to enjoy a glass - make that half a glass, of wine. ;)