Yesterday afternoon, watching my kids light up with joy as they met Elmo — the real LIVE Elmo! — and Kevin Clash after watching the magical film Being Elmo: A Puppeteer’s Journey, I was almost able to forget for a little while that this morning we had to be up early so that I could bring my youngest, Luka, to the hospital for a 24-hour (maybe longer, depending on what his doc thinks about what he sees) video EEG.

I had a difficult pregnancy with Luka. Pre-term labor starting at 19 weeks, six weeks of the pregnancy hospitalized (much of that nearly paralyzed and blinded by the drug they used to stop contractions that nearly ended the pregnancy at 26 weeks), a blood infection that came close to killing both of us, and then six weeks of an IV antibiotic to counter that infection.

This last thing, they think, is what caused my beautiful blond boy to start having seizures when he was just five weeks old. For the first 2 1/2 years of Luka’s life, I think I spent as much time monitoring him, charting his seemingly endless episodes of seizure activity on spreadsheets, taking him to neuro appointments, and performing physical and occupational therapy exercises with him, as I did playing with and caring for all his siblings. Keppra finally got the seizures under control, and eventually he was able to wean off the Keppra altogether by the time he was four. He’s been seizure free since then … or so we thought.

And then in the last year he started complaining of seeing spots. I thought at first that it was nothing, but as he became more able to express what he was seeing it became clear that this wasn’t normal. Large spots that block his vision, sometimes changing color. Sometimes he sees the walls and ceiling and floor “breathing” or moving like water and this, understandably, freaks him out. Sometimes he hears voices talking in his head, and this also freaks him out.

When I see the unmedicated homeless guys muttering to themselves on Cap Hill or downtown, talking to their invisible friends or swatting at things no one else can see, I am terrified for what the future might hold for my sweet, happy, engaging small son.

We went to our family doc, who’s taken care of my kids since we moved to Seattle 12 years ago, and he said, “Hmm, that’s concerning,” and sent us back in for a consult with a pediatric neurologist. We went for an EEG, he didn’t have any seizures during it, I thought, huh, maybe we’re in the clear. Until the doc told me that Luka’s EEG was abnormal, and that he needed to go into the hospital for an overnight EEG so we could get a better picture of what’s going on. Apparently he spiked a lot during the sleeping part of the first test, including one significant spike that lasted over two minutes. Not good.

So here we are in the hospital today and tomorrow. Luka has 27 electrodes attached to his head, and he’s being a good sport about the various tests and such, but I am drained. I’ve been trying to write about films but right this second, anyhow, I don’t have it in me. Maybe I spent out my temporary emotional reserve on the post about meeting Elmo. Maybe I’m too distracted by the monitor, on which I can see lots and lots of spiking going on in spite of no convulsions and, for the past ten days or so, no hallucinations at all.

We’ll see what Luka’s doctor has to say about it all in the morning, how he does overnight, and whether we get to leave tomorrow or stay longer so they can monitor more. On the plus side, we do have a lovely view from Luka’s room, which, as it turns out, is exactly a floor below the room where I was after my first surgery. We can see out the window to the spot where the kids’ dad brought them during my recovery to wave up at my tenth floor window from the sidewalk, because there was a flu outbreak and they weren’t letting children under 12 visit at the hospital then.

And also in the plus column, Luka loved the mashed potatoes and grilled cheese he had for lunch, and the vanilla custard he ordered for a snack. And now his siblings have come to visit him, and his lovely nurse Stephanie is bringing in the video game cart for them. The other kids, for their part, are very excited to get to order dinner off the hospital menu. I know, it’s hospital food. But they loved eating off the menu once they were allowed to come and visit me when I was in here, and again when I was here for the second surgery, so to them it’s just cool that they have another reason to be back at the hospital.

Later on, when Luka goes to sleep, I’ll hopefully have it in me to dive back into the list of SIFF films I’ve seen but not yet written up to finish the mid-fest dispatch I’ve been trying to get done all day. Until then, though, I need to focus my energy on my boy, on reading to him and keeping him busy and such.

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