He hates hats, too (updated 1:45p)

(Subtitled: Nikolas and the VERY BAD hair day)

In light of all the sweet comments about how well my wild child-biker boy seemed to tolerate the ambulatory EEG, I must come clean. I confess to engaging in a bit of Potemkin-izing in posting that photo. Not that the moment itself wasn’t real; rather, it was only a brief moment of levity in a very long, tiring, frustrating day. One I wasn’t quite ready to write about as it hadn’t yet reached its dénouement.

If you consider the mystique of the “biker dude” –the devil-may-care attitude, the I-do-what-I-want-when-I-want swaggering bravado typified in biker lore –well, you’ll get a slight inkling as to how our day really went yesterday. To say Nik had his own agenda would be an utter understatement. His agenda? To get the hell out of the contraption on his head –no matter what. Our agenda? To do whatever it took to keep it on for as long as possible. It was ill-fated from the start; someone was going to lose.

The initial hookup went okay. Nik thrashed and cried but he did not have to be restrained or sedated; that is a major breakthrough for all of us. (Though, I must admit I might have wished to be sedated by the end of the day yesterday!). I say initial because we made three trips back to the EEG/Sleep Lab within the first four and a half hours to repair the damage done by little fingers and thrashing heads. The sticky paste on his head, the pressure of the little metallic cups of the electrodes, the tape, the wrap, the weight of the recorder pack –which Niksdad brilliantly attached to Nik’s beloved doggy backpack; all of it was a complete sensory nightmare for Nik.

By the third visit, we had pretty much debugged the trouble areas where the tape and wrap weren’t holding. We had to break down and wrap under Nik’s chin, too. That made him ballistic! In the end, we brought supplies home to do our own repairs/reinforcements for bed time, knowing all too well that the electrodes wouldn’t make it through the night with ol’nimble fingers Nik! But I’m getting ahead of myself.

In all, during the daytime, Nik tolerated the whole get-up quite well –as long as he was thoroughly entertained every waking moment. Both Niksdad and I spent the entire day playing with Nik, keeping his hands and mind distracted from the gooey, hard, dangling things on his scalp. We actually managed to have some fun together in the process, but boy was it exhausting! As I wrote to Kristen last night, hour-long shape sorting sessions aren’t exactly my idea of a good time.

The cool schmatta on Nik’s head is actually his dad’s do-rag which he wears under his motorcycle helmet in warm weather to help absorb perspiration. We thought it was less intimidating and less post-brain-surgery looking than the flesh-toned brown cling wrap on Nik’s head. Nik didn’t seem to agree and only kept it on long enough for a few good photo opportunities. I’m telling you, the kid knows when he is on camera and expected to perform; that can be good and bad.

In the middle of the night, Nik awoke with one of his painful episodes and freaked out because he couldn’t get to his ear –it was partially covered with the wrap and tape. In his feral hysteria, he managed to pull the entire wrap off in one painful motion –along with the tape from his cheeks. As he flailed and screamed and wept, Nik kicked and glared at me. His expression vacillated between accusatory rage and pleading.

My heart squeezed tight in my chest as I tried to stay calm. (Hey, I’m great in a crisis but hell in the aftermath.) Niksdad and I managed to replace the leads which had come undone and I wrapped his head –again. With a full day of school ahead of him, Niksdad returned to the oblivion of sleep; Nik lay in his crib, his little body wracked with angry sobs. He held onto my hand, squeezing intermittently, not quite willing to punish me in full measure and unable to let go of the comfort I offered.

We stayed like that for more than an hour. I knelt by the side of the crib clinging to my composure and murmuring soothing shushing sounds as Nik began to relax. I felt like a supplicant at the altar; praying for redemption in the eyes and heart of my tiny, outraged savior. My absolution came on gentle, steady breaths as my child drifted off to a fitful, exhausted sleep. I lay on the floor and wept.

A few short hours later, I awoke to the sounds of Nik laughing and clapping both his hands and his feet –something he does when he is inordinately proud of some feat. Sure enough, Nik had managed to complete the job he had begun the night before –the job I had interrupted with my cling wrap and tape. Nearly all the electrodes were detached and dangling from the tangled mass of his gooey hair. Cognizant of his decisive victory, Nik sat up in his crib, blowing kisses to me.

We all knew it was a done deal that I was returning to the lab with Nik first thing this morning. We ended up completely disconnecting everything so they can download and analyze the information; hopefully, enough data was captured to be useful. If not, we will have to go back again this afternoon to try again for another 24 hours.

I’m not sure my sanity can withstand another assault so soon!
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UPDATE: We dodged the bullet of another 24HR EEG! Whew! The doc is reviewing the data but the tech said they got a lot of good, clear recording —especially at the times we noted that Nik seemed to have some type of possible seizure activity. Most of his episodes showed up during his sleep on previous EEG’s so I hope they were able to get enough of the night time data in spite of Nik’s “hat doffing” exercise!

Right now, Nik is in his jammies and down for quiet time; I’m hoping he’ll sleep so I can, too!

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