Friday, April 16, 2010

Like a game, but not.

Preface: At the risk of repeating what most of us already know, I'm going to write this one anyway since I do this for myself as much as anyone else.

We used to play it all the time when I was living at home.  Frustratingly addictive, with little achievements turned into riotous celebrations and crushing collapses taken way to personally.  We'd build, slowly and steadily, just waiting for the inevitable….. and then - Jenga!

On the surface it seems deceptively simple.  18 layers of 3 rectangular blocks, each about three times longer than they are wide, with each layer rotated 90 degrees to the one directly below it.  Starting with a "solid" tower, blocks are removed from lower layers and placed on top until you either end up with a 54 level tower (very unlikely!), or a spectacular fall - at which point you have to pick up all your blocks and start over again.  There is a multitude of factors at play with the most obvious ones considered - perhaps without realizing it - being friction and center of gravity, as a loose block is removed and the tower sways.  Gingerly sliding the piece out of position and relocating it atop the pile, excitement builds with the height of the game while silent forces work against you intent on thwarting your progress; rotational speed of the earth, tectonic activity, atmospheric eddies, etc.  Finally, and without fail, comes the crash.  It may be after a few moves, or a longer while, but it comes eventually.  This is starting to sound familiar, and way too dramatic for a simple game of wooden blocks.

And so it is, at least in my take, with managing a child's Diabetes.  On the outside, for those who even happen to take notice, it seems like a simple matter of a five second test, some addition and division, and an injection - then all is well.  For those of us in the know however, we understand differently.  While the outward actions of management on average days may seem simple, the underlying elements are anything but.  We can test for blood glucose levels, tally carbs, divide for insulin, and attempt to adjust for activity, but we can't always account for physiology and other influences.  It's tricky enough just living with the tolerances and variability of our meters and nutritional labels, but there are so many factors unseen and/or undetectable.  Maybe there is a cold on the horizon that is already brewing trouble we can't detect, and quantifying stress responses is pretty much impossible.  As a group, we could probably come up with 101+ things that might be influencing our children's glucose levels, but a lot of them we know are out of our hands.

There are two ways to view the game (and I use that phrase for literary effect only, because this is not a game): Day to day, week to week, as we ride the glucoaster and work to keep as much straight track as we can knowing that stability in range is indicative of better health, but dealing with the curves and loops as they come.  As well we play in 90 day rounds, the success of which is determined at a quarterly visit to the clinic for an A1c check.  I know some medical professionals really drive home the feelings of success or failure based on that number, while others will take it as a lesson learned of things that work well and need to be continued or things that may not be keeping us on the straight & narrow and need to be adjusted, while minimizing the inherent celebration or admonishment.  Either way, it serves as a stake in the season to benchmark our upcoming months.  Whether we put more stock in the daily results, quarterly results, or regard both equally, we have the same objectives in mind - the best management possible.

Our tower is swaying right now, and we have about four and a half weeks before the next appointment.  As I review the last couple weeks of data and the trends therein, I see things are on the rise.  Lunch seemed to be a bit of an issue recently with regularly occurring pre-dinner highs, so we've adjusted Jonathan's lunch ratio to give an extra 1/2 unit of NovoRapid and it seems to be better, but still in the double digits.  Another review of the data suggests that we have a broader issue to address spanning the whole day, which would be taken up with his long-acting basil insulin.

As I write this, I am awaiting feedback from the clinic about adjusting the Lantus.  I'm thinking we'll end up with a full unit bump from 4-5, but in all likelihood they will recommend going by halves.  This is probably the prudent thing to do despite meaning double the nights of frequent checks; but deep down I know, regardless of my yearning for longer periods of sleep, I would probably do it one half at a time anyway.

With a little luck, a lot of patience, and some skill, we're going to re-center our tower.  This may mean it will lean the other way a bit too and we'll have to adjust again, but in the end we're moving onwards and upwards, one block one day at a time.

PS: I've since spoken with the nurse at the clinic (amazing group of people without whom I would not have my sanity by the way) and yep, 1/2 unit up it is.


  1. I hate when things are changing...which, BTW is like ALL THE TIME it least until Joe hit 5, then we had a few weeks of stability here and there...and apparently they become really less labile when they hit 7 or 8 years old.

    Hang in there. I also least for me...that as I near the next Endo appt. I start to second guess myself and the numbers; and if the numbers are not going well...I become frustrated and depressed...only to have my spirits boosted by the Endo Team so that I can go back at it for another 3 months with my head down, analyzing blood sugars, and adjusting settings.

    You are doing a great job and BTW you are an awesome writer.

  2. Thank you Reyna, you are too kind. (I was typing more, but it turned into another post of it's own).