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Video EEG: An Experience—Part 3

  • Posted on August 20, 2012 at 8:00 AM

So, I woke up at 5:20am on Friday morning. Luckily, Willy still slept. I poked my head out of the room, called for a nurse, who came in to watch Willy while I had a cigarette. Ah, nicotine addiction. It sucks, but I haven’t been able to kick the habit yet.

Willy woke up some time after I returned, and had a breakfast of an apple and milk (which I ordered for him from room service) and carrots (which I’d brought with me). Everyone commented about how healthy he ate. As for me, I had brought a yogurt drink and smoothie, and I drank both up, wishing I could get some protein into Willy in the mornings, but that’s just not going to happen.

By 7am, I needed another cigarette and the doctor wasn’t expected for another hour. I went through the warren of hallways and such, and for the first time I didn’t get lost on the way there or on the way back. Nice! When I got back to Willy’s room at 7:20am, the doctor was waiting. Oops!

Oh, well. He repeated everything we’d talked about, filling in a few blanks, and made sure I knew the plan of action we’d be following over the next few weeks. He also told me it’d take about two weeks before he could produce the full results of the EEG. Then, he said that we needed to give Willy his morning pill, get the gunk out of his hair, get checked out the by lead doctor and the string of interns, and then the nurse would discharge us. “You’ll be going home soon,” he said to Willy.

And here is my one point of criticism: “Soon” is a very bad word to use with a literally-minded person. See, as an adult, I know “soon” is relative. But even I struggle with the misuse of “soon.” Willy is not an adult and he struggles to reign in his overly-literal thinking when interacting with less-literal people. See, to Willy, “soon” means in a few seconds—a few minutes at most. An hour cannot be “soon,” no matter the relativity of one hour compared to 24. No, an hour is definitely not “soon,” and it is most certainly not “soon” when it’s for something—like going home—that you’ve been begging for.

So, while Willy clung to the word “soon,” getting more and more upset as “soon” seemed to get further and further away, I clung to the list of tasks that needed to be completed. Doctor and string of interns came in and did their thing. Check. Technician came in to remove electrodes and started the process of cleaning the glue from Willy’s hair. Check. Finally, the nurse came in to administer medication. Check. So, we get to be discharged now, right? After all, Willy had been weepy and whiny for the last hour and a half, waiting for “soon” to be “now.” So, now that we’ve completed the checklist, do we get to go?

Ah, no. See, the pharmacist needs to come. Why? To tell you about the medication. But the doctor already told us about the medication—twice. Once the nurse gives us our discharge papers, we’ll have a paper record of the details about the medication. But, the pharmacist has to come to tell us about the medication. Okay, fine—when? It’s hard to say.

So, for the hour and a half Willy was miserably awaiting “soon” and I was the rock, calming him down. Then, after this, Willy gets calm and I start to melt down. I’m trapped in a tiny hospital room (see how it’s shrunk from “small” to “tiny”) with a child who just wants to go home, we’ve done everything we were told we had to do, we’re packed and ready, and now we’re waiting for someone who has never met my son to tell me about the medication the doctor prescribed, who had already explained the medication and the plan of action and had not only met my son but had been treating him all night long and the medication had already been started and what the hell was this guy supposed to know that the doctor didn’t! So, we waited another half hour for nothing. Repetition—unnecessary repetition.

I felt like a dog on a chain that was too short and too tight, straining, straining, straining to be free. Trapped in a box. I needed to get OUT!!!

It’s not entirely reasonable. I know that. I do. But do NOT use “soon” with a child with autism, when it means something totally different to you than it does to him. It’s not reassuring. It’s frustrating. And do NOT give a to do list to someone who relies on them to function, only to add things to the list at the last moment after having dealt with an hour and a half of false “soons.”

It’s badness. That’s all I can say.

Luckily, the nurse picked up on the fact that this whole pharmacist thing wasn’t going over well, so once the pharmacist actually arrived she began the discharge stuff, so when the pharmacist left she was walking towards me with the discharge papers the very moment I stuck my head out of the room. Freedom at last!

We arrived home 23 hours after we’d left. And my day had just begun, because my brother had arrived the night before and the time I would get to spend with him before he headed to his new New York graduate school was short and precious and worth every little bit of exhaustion I would experience over the next week.

Video EEG: An Experience—Part 2

  • Posted on August 17, 2012 at 8:00 AM

So, the ghost haunting my child has a name: Epilepsy.

Is that inflammatory language? Perhaps, but I don’t care. At least, not right now.

I don’t mean to offend the many people who live with epilepsy. To them: You are not less of a person because of epilepsy. I know that. I respect that. I respect my child, too.

But the fact is that these seizures have haunted my son for months. He’s afraid of them. He’s afraid of what he does when they happen. He’s afraid of not being able to make them stop. They strike without warning, without a known trigger, and they haunt him with exhaustion and unease throughout the time when he’s not having them.

So, there. If it offends, I’m sorry, but that’s how we’re experiencing this thing called epilepsy, and, unlike autism, I’m not willing to let it run its course while offering support and opportunities for development. It’s just not the same thing.

Now, as I was saying, the ghost haunting my child has a name: Epilepsy.

This is good. As anyone with more than a passing familiarity with the fantasy genre should know, naming things gives you power over them. It brings to mind A Wizard of Earthsea by Ursula K. Le Guin. The story starts with a young boy named Ged who is destined to be the greatest sorcerer in all Earthsea, but he makes a mistake. I don’t remember the details—it’s been a long time since I read the series—but somehow Ged releases an evil upon the world, and he can’t stop it because he doesn’t know its name. He hunts it and chases it, all in an effort to learn its name and to stop the evil from wreaking havoc on the world.

Sure, it’s a fantasy story and may seem to have little to do with the real world. But, think about it. It’s true. Naming thing gives you power over them. It’s not really magical power, like in the story, but it’s the next best thing: Knowledge. Knowledge is its own kind of magic. With knowledge, comes power. Perhaps the power to heal. Perhaps the power to understand. Perhaps the power to cope. But it’s power nonetheless.

After that first in-hospital seizure, we had the power of a name. Later, when we came home, we brought that power with us and were able to tap into some pretty impressive resources. But, in the hospital, it was the power of the name—and with the naming came a course of action.

Luckily, Willy slept after his seizure. I talked with the doctor: Willy would start medication to help with the seizures that very night. An MRI would be ordered, because the doctor (the head doctor) saw the seizure in action through the EEG and saw that the seizure started in one location within the brain and then spread throughout Willy’s brain. He wanted an MRI to look closely at that part of the brain to see if he could find a cause. He also ordered blood work to be done, and then we’d come back to learn more about the results. We had a step-by-step plan of action, finally, with the power of a name.

When Willy was awake, he was weepy and whiny. He wanted to go home, because his house was the best place for him to be and he really needed to get back there. I’d hoped the one seizure would be enough, but it wasn’t. They kept us over night.

He had a seizure around 11pm, after I’d fallen asleep. He tore off his turban of gauze and ripped all the glued-on electrodes from off of his head, and made it out into the hall before anyone could stop him. I didn’t even wake up until they were bringing him back into the room. They got him back in bed and I helped soothe him while they glued all the electrodes back onto his head and wrapped the gauze turban around and around, looping it under his chin this time. Before they left, they turned on the bed alarm, which would sound if he got out of bed again.

Around 2am the alarm went off, and it woke me up. Willy was quicker than I was, tearing off the turban and electrodes before I could reach him, but I was able to keep him in the room. Again, they glued the electrodes on and wrapped up his head. Three layers of glue, now.

After that, I had trouble getting back to sleep, though Willy fell asleep right away. I tossed and turned as much as I could on the overly firm, narrow bed. After an hour, I fell asleep, to wake two hours later and start a long, full day.

Video EEG: An Experience—Part 1

  • Posted on August 15, 2012 at 1:06 PM

We arrived in our room around 1pm, after traversing an ant-farm of hallways and passages, from one hospital to the next. The room was small, but not too small. The big hospital bed took center stage, facing a computer with a camera. Behind a half-circle of curtain that didn’t quite close on both sides, we found a toilet and a sink. A night-stand with hospital equipment was next to the bed, along with an easy-wash chair and a tray on wheels that could extend over the bed. On the far wall, there was a long couch that could transform into a high, narrow bed—my center of operations for the next 21 hours.

A nurse (possibly an NA) came into to check Willy’s vitals, and then the initial placement began. Lots of little electrodes were glued to Willy’s head and then injected with conductive gel. A turban of gauze was wrapped around his head of blonde hair. A team of doctors came in to discuss the symptoms that had brought us to this extreme—one lead doctor with a string of three interns.

One of the interns was given the lead, with the lead doctor coaching him through the process. Some of the questions were for Willy. Some were questions for me. I tried to follow along as well as I could, but I kept thinking about the toilet and the curtain and the inadequacy of the facilities with a room full of people, most of whom were men. I needed to go and it became especially urgent before the doctors were finished with their questions. I couldn’t use the facilities provided in the room while they were standing on the other side of the curtain, so I had to go down the hall, through three sets of double-doors, to find a single bathroom—which was, of course, occupied. I’d waited too long, and we’ll leave it at that.

I came back to the room as quickly as I could, which isn’t as easy as it sounds even though I just went straight. When I passed through the final set of double-doors, still uncertain that I was in the right hallway, suddenly I knew that I was. I followed the sounds into Willy’s room.

The four doctors were bunched in a semi-circle around Willy, who was locked in a brief seizure, struggling to launch himself out of the room, struggling to pull the electrodes from his head. I came in just in time to lend a hand, and help calm him down afterwards.

“Is that typical?”

“Well, usually there’s not nearly so much of a struggle, because we don’t try to stop him unless he tries to go out the door. But, yeah, that’s pretty much how it goes.”

I looked at Willy’s face, waxy pale, drained of blood, his lips the same pale color as his face, his eyes dull, bruised with exhaustion.

Once again the thought flits through my mind: I’ve known my boys were autistic for a long time. For the vast majority of that time I’ve had no interest in curing them. Autism isn’t a disease. Autism means my boys are different. They think differently. They develop differently. And that’s just fine. I want them all to talk and I want them all to learn and I want them all to be able to strive to achieve their goals. But I don’t want to “fix” them, because they’re not broken.

Seizures are different. This isn’t right. This isn’t just about being different. Something is going wrong in my son’s brain. It’s hurting him. It’s wearing him out. It’s taking my bright, sun-shiny boy and turning him into a pale ghost afraid for when the wrongness strikes again.

Was it a short time or a long time later? Was it the lead doctor with the string of interns or the head doctor who was in charge of the lead doctor? I don’t know. I was comforting my boy, settling him into sleep. I focused in on my son at the exclusion of almost everything else. But then, there were the words.

“I caught it. I saw the EEG. It’s definitely seizures.”

This I already knew, even if they didn’t have proof. “Is it epilepsy?”

“Yes.”