Let the Data Show

We’re entering another phase where instead of being a mom, I become a scientist. Instead of snuggling and hugging and cheering, we will observe and track and analyze. I don’t especially like these phases, but long ago I learned that we all do things we don’t like, right?

Catherine has been having “episodes” every night, and they’re getting stronger and more frequent. Something wakes her and moments later, her little body is trembling. Sometimes it’s intense. Sometimes it’s mild. Sometimes it’s a steady tremble. Sometimes it pulses in waves. Picking her up used to stop them; now it just makes us feel better.

We had a sleep study done at KKI in July before her surgery and despite all the wires and equipment on her body, she finally fell asleep, but the data didn’t indicate any seizures. It indicated a mild obstructive sleep apnea, but no one seems too concerned about that.

Could YOU sleep with all this equipment on you?

So, we don’t call these episodes “seizures” – yet. Our nurses call them tremors. One even calls them convulsions. And one “episode” may have actually been a seizure that should have been medicated. Enough.

I finally broke down and made “the chart.” I have a colleague – let’s call him a friend, actually – who is in awe of the way we have to track data about Catherine. He’s responsible for analytics in our company, so for him to be in awe really surprised me. He’s helped me analyze Catherine’s eating data in the past, so we could show the county whether she was learning to eat or not. Data says she is. I actually like data.

When I pulled out the computer on a recent flight to see a client, I asked him how to build the chart in Excel. He starts everything with questions, so I tried to give the answers before he even asked. But one part continued to challenge his thinking.

“Wait, you really need to track 25 things?” he asked.

“Well, it may not be 25,” I said, “but it’s something approaching that. It’s not five – I know that.”

He asked some good questions and helped me at least figure out what to put on the x and y axis. What mom talks about her kid as relates to an x and y axis? He gave me some other tips and then left me to figure it out in greater detail.

My chart fits on two – did you read that right? – TWO – 11×17 pages and actually tracks 38 variables. That’s insane!

But what’s more insane is that we have to do this. I get that the docs need a better look at what’s happening. And I get that we’re waiting for another sleep study. (I’m sure that’s about whether insurance will pay for it). I also get that the data will hopefully show us a pattern. But there is a part of this that annoys me, frankly.

When we were at the sleep study doctor’s office, I suggested we needed to get several doctors in the room together to discuss the situation. Everyone was approaching it from his or her own view and specialty. No one was looking at the little girl and all the things going on in that little girl to think about what might be happening overall. Is it hormonal? Does feeding her wake her up and cause the episode? Are they actually seizures? I think the neurologist and the sleep doc and the endocrinologist and the developmentalist need to get together and actually talk – novel idea, huh? The sleep doc told us they probably couldn’t do that – but they could email each other.

What? You work in the same building!

And so the real reason I have to be the one who builds the chart, trains the nurses, tracks the data and then analyzes it is because I’m the only one who cares enough to do it. Yet, when I walk into the doctor’s office the next time – with my 38-variable chart filled out for weeks, the doctors will be impressed. And maybe, just maybe, they’ll get this thing figured out.

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  1. Ellen… I am already so impressed with all you and Brian have done over these last several years. And ~ you have the dogged determination and love for Catherine to get results! I look forward to hearing how your chart works out.

  2. Hey Ellen,

    I’m just curious, but when she had the sleep study did she have any episodes?

    When I had my head injury, I had a 4 day stay at the epilepsy monitoring unit at Sinai. Apparently they are the best in the area at confirming or ruling out entirely seizure activity. Dr. Jay Foreman is the guy to see there.

    Just a thought that you might want to check it out. I speak from experience that the B&SI @ Sinai is pretty outstanding. (My niece went there for epilepsy monitoring as well..)

    1. Hi Jay! Thanks for the tip. No, she didn’t have any “episodes” during her sleep study. That’s part of the the frustration. But look at all that garbage on her! Docs are considering another sleep study. I’ll mention this to Brian and see if maybe we want to check out Sinai. Ugh – the intake on the medical history exhausts me just thinking about it.

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