We checked in for Emma's 24 hour ambulatory EEG and watched some Sesame Street as we waited for the technician to call us back. She stood silent a moment when she entered the waiting room. "Um...I'm not sure what we're going to do here," she began, "because I can't allow the other children back to the procedure room, and we will need you to be with Emma."
"We've been to other EEGs before and they've always been fine," I countered.
"This is different," she explained, "because the electrodes have to stay on Emma's head for 24 hours, we use a very strong glue. I can't expose the other children to the smell."
I wasn't about to reschedule at that point. "Emma will be fine by herself then. Just hook her up, I'll stay with the others." The technician looked at me with disbelief. "No, really," I assured her, "Not much bothers Emma. She'll be your A+ patient. I promise."
One half-hour later Emma appeared with 17 electrodes super-glued to her head, a white-net stretched over-top of it all, and long blue cord leading to a blue black-pack that carried the EEG computer. "She did awesome!" the technician raved, "such a sweetie!" I had to swallow the "I told you so" that so badly wanted to answer.
"Now the net needs to stay on," the technician advised me, "but she can wear a hat over it if she feels a little self-conscious. We'll see you tomorrow at 10:30."
Even in the halls of a hospital, the stares of each person we passed felt oppressive. I smiled and confidently marched my troops to the seclusion of the nearest restroom. I soon realized that Emma was going to need assistance with keeping the cord and back-pack strings out of the potty for the next day. She itched at the dried glue on her forehead and pouted when I tried to discourage her. "Buh ih huw weh I cos my eyes (but it hurts when I close my eyes)," she whined.
"Emma," Hannah consoled her, "even with that on your head, you still look like Lucy."
Naomi disagreed, "She looks more like she's wearing a Calormin helmet with that thing sticking up in back."
Fortunately Emma napped peacefully on the way home, and played happily once we arrived. The day went quite well from that point actually, except when I hung the back-pack on Emma's chair at dinner and she tried to jump up after dinner and run off without it. That's when we found out just how strong that glue was. I put the back-pack above her head when I tucked her in bed that night to keep the cord away from her neck.We were up even earlier Wednesday morning to get Matt to work by 8:00am, and had even more time to kill at Wal-Mart. The Disney Princess baseball cap over Emma's head net did little to discourage stares. Just what was hiding under that net? Did that poor little girl just have brain surgery or something? Thankfully Emma was utterly oblivious.
We marched back into the hospital, only to be greeted by a kind lady at B elevators holding a tray of warm, delicious-smelling chocolate-chip cookies. "Oh, here are some customers for me," she smiled, holding the tray out to my children.
"I'm sorry, we can't," I quickly replied, steering the girls away from temptation, "they have Celiac disease. So no wheat cookies for us, but thanks." I tried to keep my voice cheery, but I felt awful as the girls stood quietly on the elevator and watched the cookie lady disappear between the closing doors. "So, Emma," I changed the subject, "are you ready to get that stuff off of your head? That will sure feel good!"
We sat again watching Elmo's World after the technician took Emma back. When they reappeared Emma looked like a child who had recently been rescued from the slums. I hadn't anticipated that Kodak moment. Her hair was twisted and matted with masses of white clumps and tiny white flakes throughout. She looked like a lice-infested dumpster-dwelling child.
"Now, there's still some glue in her hair," the technician explained. Oh really? I thought that was moldy cheese. I contemplated shaving Emma's head, but the tech had a much simpler idea. "Now all you need to do is wash her hair with some acetone-based nail-polish remover..." Oh, is that all? Lovely. "...and if that doesn't work you could try some vegetable oil, sometimes that helps to loosen it." So acetone alone doesn't just eat the hair off of her head? Interesting. Then I get to slather her in vegetable oil? That should be as much fun as chasing the greased pig at the county fair. Anything else? "It's not going to come out by itself, and it will take a few washings..." I'm sure it will. "...and here's a fine-toothed come to help you scrape it out."
"Acetone, vegetable oil, comb. I think I've got it," I replied, trying to smile, as I took the knit-pick from her hand.
I would have gladly traded the sympathetic stares of strangers towards my medically-fragile child, for the horrified, condescending stares towards my neglected lice-infested child. And just how do you explain to every passing stranger that her hair had been washed only 26 hours ago, it was just slathered in super-glue and we were on our way home to bathe her in nail-polish remover? Back to the closest restroom we flew, where I tried to pull the massive rat nest of gluey hair into a pony-tail and tuck it under the Disney Princess baseball hat.
Actually, we couldn't head straight home. Matt was working a short day and it wouldn't have made any sense to drive 45 minutes each way to go home for two hours. Instead we had a picnic at a local park (where I nearly lost Toby twice), and roamed the mall for awhile before picking Matt up, all while being careful not to let the hat slip from Emma's head.
After a quick dinner I locked Emma and myself in the bathroom with the exhaust fan running while Toby pounded on the door. It took a full hour to carefully apply acetone with cotton balls to Emma's entire head and knit-pick out every flake of glue. I didn't end up needing the vegetable oil, thank goodness. Emma didn't really cry as I scraped and tugged at her head, even though she lost half a handful of hair. She whimpered pitifully and sang the word "ow" over and over to the tune of Twinkle, Twinkle, Little Star. But when I put her in the bathtub and washed her hair three times in a row she lost her patience and melted down in sobs. It was a relief to everyone to tuck her in a warm bed with a clean head of hair.
The 24 hour EEG is supposed to give us more detailed information about exactly when and under what circumstances Emma's brain waves are slow, whether the condition has declined at all since last April, and whether there is any minor seizure activity we've missed before. We should get the results in about a week. I'm just hoping the nurse who calls doesn't say, "The doctor would like you to repeat this test in another 6 months."
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