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12 February 2013

2 + 2 = 5 doesn't it?

Brother Bear lives for sports; eats, sleeps and breathes basketball. The amazing amount of work and effort he put into making the freshman high school team forces me to look at my own fitness journey, and wonder at his committment in awe. Already, he is working hard towards developing needed skills for a second attempt next year, for a chance at a spot on the even more difficult sophmore team. His tenacity and committment bring tears of pride to my heart.

Brother Bear fought hard to get here - harder than most realize. The head injury that turned his life upside down and inside out just two years ago inserts itself into his life in insidious ways, but he just keeps getting back up. Read this, write that, memorize this - all taks we've encountered in our own school journeys, but not through the hazy fog that continues to mire cognitive processes like so much pea soup. He never complains, just works harder, longer, quietly for things that once came easily, yet still emerge with a depth of brilliance and understanding. Slower does not equate to less smart. How I wish his teachers could truly grasp that concept. This kid is amazing, and not so much a kid but a young man becoming. Surpassing. Persevering.

He currently plays in a prep development league. Part of his plan to continue developing skills and pursue his passion. Games run every Monday night, right alongside my work with clients, so I've missed nearly every game. I love to watch him play, and worry less when I'm alongside his team. It's silly, I know. I just dread the call, the words. I hit my head again tonight. Which he did - last night. Heart stopping. That's not a phrase - it's a condition, a reaction, a moment of pure fear that immobilzes one's chest as it did mine. I hit my head again. Again.

Breathe. In. Out. Count to five, and breathe again. Listen.

He's okay, I tell myself. They have trainers, assess for concussion these days; pull kids from play until there's no question. He's okay because he believes that to be true. Because he makes it so. Because he's tenacious and accepts no other reality. He has goals, and intends to reach them; to see his vision take shape. My job is simply to trust; act as if, and to be there. Always ready wtih support.

We had a date last night. A date to work on math, which we did. I saw it, heard it - the struggle, the hurculean effort. 2 + 2 = 5, right? No wait, it's not. I got this. We waded through the hall of mirrors, the distorted images and twisting tunnels and tackled pythagorean triples, pythagorean theorem and its converse, geometrical proofs, parallelograms, triangles, area...

Homework often takes double time, even triple. Brother Bear never rests on his laurels. He works hard, and at times still comes up short. His brain heals slowly, and he refuses to cut corners or make it the central thing in his life. He is a teenager, basketball player, himself first - all the rest can get in line. Head injuries, post concussive syndrome? That stuff can sit on the sideline and wait; he gives it its due attention. And, he quickly moves on - to the next bigger, better, more important thing in his life.

Me? I sit back and remind myself. Sometimes, even momentarily, 2 + 2 really does equal 5. Just for the moment it takes to show us the miracle of being. Of persevering. Of quietly rising to the challenge and moving far beyond - not for the recognition of overcoming obstacles, but for the beauty and gift of knowing, intenally, I gave it my everything. Which he did, and always does.

11 February 2013

Glucose Patterns vs HbA1C

Say A1C in mixed company, and you're sure to get a few perplexed looks. Say it in a room full of type 1 diabetics and you might catch a few groans, a few questions, or possibly no acknowledgment at all. HbA1C, a lab test known as a hemoglobin A1C looks at average blood glucose over a span of time - typically about 3 months, though I'd personally have to say it's a weighted average, but I digress. Think of it this way, if a blood glucose check with a meter is a snapshot, then an A1C is like a panoramic photo.

The familiarity of this term in the DOC can elicit undertones of dread and resentment, or beams of pride - which is to say we often turn the quarterly A1C into a report card on just how well we're managing diabetes and blood glucose trends. That last is particularly true of us D mamas, even when we try like crazy to avoid doing so.

Miss N, my lovely, days shy of turning 13, full of life (but currently hates D with a passion) daughter just had one of those visits where we could have turned her amazing A1C into a brilliant report card - except we didn't want to. In fact, we both walked away feeling like that fault lies with her care team. And we weren't happy with or impressed by it.

You'd be hard pressed to find someone in the DOC who can't relate to or hasn't heard the phrase look at the patterns, not individual numbers. For us, it's become a mantra these last three or four months. That's how long we've been troubleshooting excessive morning, afternoon, evening, and nighttime highs. What's that you say? Oh, right - excessive highs all ding dang day long - interspersed by random inexplicable lows. Inexplicable because I am absolutely anal about avoiding stacking insulin with corrections.

Yes, I admit it. I fiddle - a lot. Every single week I sit down and look at her glucose patterns, her basal rates. I even created an excel file where I can overlay the two and quickly identify areas where we need to raise or lower basal rates, tweak insulin to carb ratios, and wonder if her ISF is accurate. We're still just shy of two years into this journey, and it's all too easy of late to get frustrated and feel like giving up. Except I can't - because she's my daughter, this is her life, her health and livelihood - if I'm going to get frustrated and give up just two years in, what does that say to Her? What kind of example does that provide? Not a good one, that's for sure, and in the end - I don't have diabetes, my kid does. Simply put, parents DO NOT give up on their kids. Not ever. If she can rock this diabetes thing (and she does), then I can manage the number crunching regardless of the inanity of it all.

For the first time in a long while, we approached her quarterly endo appointment with a mixture of dread and desperate hope. According to the various software programs we use, her predicted A1C this time around kept coming up around 7.9 - one program put it at 8.2, a rather huge jump for Miss N, but not outside the realm of possible or even expected. In the last three months she's experienced her highest highs (500+) and lowest lows ever (39, technically not her lowest, but the 24 was entirely my fault one week into this mess. We won't go there.) Miss N can rock the square and dual bolus, knows how various foods and exercise effect her body and glucose level, but the last 90 days would have tried even the patron saint of patience. So we looked to the center and her care team for answers. As we left for our nearly two hour trek, I sensed we both saw this visit as our last salvation from a never ending nightmare.

How wrong we both were. Miss N's A1C in question. An inexplicable, unwarranted, and truly mind boggling 6.4

WTF?!

Despite the fact that our visit lasted more than two hours, despite the patterns reflected in graphs, the logs, and our desperate plea for help, all we heard - over and over again, was what an incredible job she (and I) are doing in managing her diabetes. Huh?

That A1C makes no sense alongside three months of logs, graphs, and various printouts. I suppose we could have just soaked up all the praise, gone along with everyone treating that stunning (I mean mind blowingly inaccurate) A1C as some sure sign of success. At some point the PA realized we weren't on board with all the celebration surrounding this single, simple number. 6.4 - what does that even mean? How is it possible? Do you not see the never ending string of 300+ values on the two week record sitting in front of you? So the celebration turned to chastisement.

You really need to stop perseverating on a single number. You need to look at the patterns, not the numbers. We're not going to change anything, that A1C is just too good. Ah, hello? Did you not just say - a hundred times over - to look at patterns rather than a single value or number?
That's all 6.4 is - a single number. It could be a lab error, a mix up (there are a handful of other kids being seen simultaneously); heck, it could be accurate, but then please explain to us how that is possible in light of the patterns we've set before you.

By the time we got home, Miss N was in tears. The help we so desperately craved - relied on, expected. It didn't exist.

The message they sent us out the door with appears to be the message our care team need head more than us. It's just a freaking number, and by itself it is meaningless. My child is not a single number - she isn't even just a diabetic. She's a (nearly) teenage girl struggling with feeling miserable, and desperate to achieve glucose trends that don't leave her feeling lethargic, nauseous and unable to see due to blurry vision and headaches. Anything greater than 170, and that's how she feels. It's wretched, and my heart breaks to watch her Herculean effort to contend with that, stay up on homework, and give 110% to volleyball.

At her request, I'm looking for a new endo center - but even that is a bittersweet task. She's seen by an endocrine doc at what is supposed to be the Golden Standard for pediatric diabetes care. I know it's usually us parents of CWDs that need the reminder, but today I'm shouting it from the rooftop and hoping like mad that every endocrine doc can hear it. An A1C is not a report card. It's a single, simple number. It fits into a context, and is but a small part of a much larger picture. Even more than that, it does not and never should define my daughter or her worth.