Wednesday, April 16, 2014

Information overload

At our quarterly endo appointment, Grace's endo decided to download her Dexcom CGM data for the previous two weeks. No problem, or so I thought. About 30 minutes later she appears - because she couldn't get the software to download the data (that's a whole other story about how cumbersome it is to download your OWN numbers and information - don't even get me started that nothing Grace wears/has/uses is Mac compatible - it's like being in the Dark Ages - end of rant).

She is smart as a whip, our endo. Extremely engaged, knowledgable about diabetes, the body, insulin, Type 1, you name it, she knows of it. I feel Grace is in very competent hands with her. She always has something to think about, to add or to just talk about with Grace. She gets Grace and understands her. I love her.

Here comes the BUT part. She lays out the sheets of data from the past two weeks and starts to talk.

'Why this high here?'
'I noticed a couple of lows the last two weeks.'
'Hmmm, do you think her I:C ratio is correct and working, she doesn't seem to be coming down quick enough after a meal.'
'How many carbs does Grace eat a day?' 
'What's her basal rates during the morning hours?'
'Why did you do a temp basal here?'
'This seems low right here during the day, twice, what can we do about that?'

Question after question after question. My head starts to spin. I look at the sheets, but all I feel and see is information overload. Seriously, it's like the computer in my head is full and cannot take one more bit of information. It's like seeing the blue screen of death or the spinning rainbow umbrella of doom on a Mac. I do not compute.

I start to talk, but I talk in basics. Grace just sits there and chimes in from time to time. Here are her rates, I say. I talk about how I use a lot of Gary Scheiner's work that looks at basal rate patterns to help me adjust and modify the pattern she should be in. It's masterful stuff, much of what Gary Scheiner has published and produced. I know her I:C ratios are good, she comes down within range about 2.5 hours after she eats. I use the 1800 rule to figure out sensitivity factors. They are right too. I do things by the book, and some not by the book. Sometimes I throw the book out the window and do whatever feels right. I continue talking, but I'm not making much sense.

Cause this is what I wanted Grace's endo to know, and this is why I stopped talking, looked straight at her and said:

These are the past two weeks of Grace's life. Do you know she was in her Middle School's musical production of 'Guys and Dolls' these past two weeks? She had school all day, then practice after school from 3-7:30 PM, and on Saturdays from 10 AM - 6 PM. She ate Wawa hoagies most days for dinner, ate pizza twice courtesy of her teachers, and she did it all herself. She was wonderful in the show, and diabetes didn't interfere with one blessed thing. She did it all herself, every single minute these past two weeks.

Her endo just looks at me. And I look at her, with a straight face that says I am done. Literally.

The fact that we are pulling two weeks out of the past three months always leaves me cold. It always leaves me nervous about the two weeks prior to the endo appt. No highs. No lows. Be careful, it's what the endo will see. Well, I have had enough of that crap. It's time we look at the grand picture, at a life with diabetes and not a two week morsel that is but a blip on the screen of life.

I turn to her OmniPod PDM meter and scroll through to get Trends for 30 days, 60 days and 90 days. Grace is in range 55% of the time. I should get a medal and Grace should get a flipping trophy for that. She spends 20% of her time low, and 25% high. Her range continues to be 80-150.

Now, let's talk. Let's look at some numbers here and see. I see her endo's eyes change. She comes down from the ledge of information and into her life.

Well, she's doing great. There's not one thing I would recommend we change right now. The fact that she is participating in what she wants to, on her own, is fabulous, and that she's caring for herself is even better. Keep on doing what you are doing.

I relax. I take it in. Grace should feel great about this. She does, after hearing this from her endo.
I give her a high five as we leave.
Grace comments 'And THAT'S how you do it.'
Indeed.

4 comments:

Misty said...

LOVE THIS!!! So true. Way to go Mama and Way to go Grace :)

Anonymous said...

That. Is. Awesome.

Meri said...

I have that same feeling of dread every time the questions come. So I now I do my own bit of heading it all off by giving the endo a letter about what has been up in the boys lives BEFORE they come in to talk to us. I always feel like I'm lying when I have to explain things...even though I'm not. I think because I'm always defending my kids, and our decisions. I don't like being on the defensive. I'd rather feel like we're all playing on the same team, you know?

Regardless, brava to both of you!

Skyline Spirit said...

pretty nice blog, following :)