I haven’t been crowing about it here, but over the last six weeks or so, Dar began to sleep better. Dar chose a new room to sleep in and we chose a new sleep drug for him. I actually slept for seven straight hours for three nights in a row. Twice! I didn’t mention it here for fear of jinxing it. Well, it turns out I didn’t need to worry; we got jinxed anyway.
At about 5am on Sunday morning, May 26, while fidgeting in and out of consciousness, Dar began what I now know to call a Grand Mal Seizure. Prior to this moment, he had never experienced a single seizure that we know of. My wife was on child duty. She rushed to get me out of bed. Looking at Dar convulse like a beached trout, my blood turned to ice. I thought I knew heartache after nine years of all-autism-all-the-time. I was wrong.
We called 911. Wifey made a video of him. At a certain point while I was on the phone with dispatch, Dar stopped seizure-ing and started freezing, his eyes bugged out looking up. It was almost as though he was…passing into the next world. It was terrifying. We slightly shook and slightly hugged him. His eyes stopped looking at the ceiling, but now they were what appeared to be permanently asymmetrical. Other than that, he looked relatively normal…just in time for the paramedics not to see the seizure.
At 5:15am on a Sunday, paramedics can arrive at a house without using sirens. We left the door ajar, let them right in and led them right to Dar. It wasn’t even dawn, and there were suddenly four big men and two women in my living room. They talked to Dar; we talked to them about how Dar will never talk to them. I showed them wifey’s video, which remained terrifying, at least to me. I ran upstairs and threw clothes on myself quicker than Batman on his pole.
The EMTs brought in the gurney and confirmed the hospital where they would take Dar. Any parent who has watched a team of paramedics haul their little child onto an EMT gurney knows how I felt at that moment. Like my heart was in my throat and my spirit was hovering over my body.
So began Dar’s first-ever ambulance ride. I would have followed it, but the fire truck that followed the ambulance had this move of slowing way, way down on our narrow street. So I turned my car around and went a different way. Seeing the red lights at 5:30am on a Sunday, I thought, we’re on Fallujah rules now. Let’s just say I arrived at Children’s Hospital about a minute after Dar’s ambulance did.
I thought that Children’s might hold me up for a badge or something, but they ushered me right the heck in to ER. A nurse greeted me and I said “can you show me which room…” and she said, “oh, everyone is there.” I ran-walked into a room to see about ten medical professionals swirling around a bed with my nine-year-old boy’s near-naked self. I heard words like “intubate” and “check his pulse” and “give me that” without really understanding.
It didn’t seem real; it was like I was in a movie. Maybe that’s why I thought to film it, but as I pulled out my phone, a nurse asked me not to take pictures. I said “this is for his Mom!” They asked me to leave and watch from another room. I called wifey and asked her to come with Dar’s brother right away. I said it was serious. Later wife would tell me that I scared her. Well, I was scared. Alone in my little observation room, I took a picture of Dar through Venetian blinds. I took the following picture of the monitors.
I tried to mentally prepare for the worst. Those were excruciating moments.
After a few minutes, nurses told me that Dar seemed to be responding to treatment. A minute later, the doctor told me that when Dar arrived his eye was very assymetrical, but it was now returning to normal. This was a good sign. They would soon be taking Dar to PICU.
I was told that wifey had arrived. I went out to the waiting room and switched with her, taking care of Dar’s brother while she went to Dar. We didn’t want to unnecessarily traumatize Dar’s brother…not yet, anyway. A few minutes later, a nurse told me to go join my wife upstairs in the PICU. I was told to leave one area and get a pass to another area. Weirdly, the next security guard wouldn’t give me that pass for many minutes. Maybe I’ll tell that part of the story later; let’s just elide it for now by saying that it ended with Children’s Hospital employees encouraging me to file a formal complaint, which I later did.
So, Dar’s brother and I met wifey in the PICU waiting room. The doctors had Dar on 5 (5!) different drugs. Prior to that morning he had never been on more than one. So he was pretty well sedated. They did tests while we waited…next to a pregnant-looking woman who was heave-crying. She had family with her but I felt awkward to share the space with her. (We gathered from snippets of their conversation that she had just had a very premature baby.) I went to see Dar in the PICU. If your baby was premature, you know what the room looks like, with the ten raised beds. And there’s Dar at the end of the room, with bandages and tubes and wires everywhere.
Eventually a doctor and nurse joined me and wifey in the waiting room. The doctor explained that Dar had had three big seizures, one we saw, one is the ambulance, and one in the ER. We hadn’t known about the latter two. She explained that this can happen to any kid, but that Dar’s autism made it more likely. When we asked about the odds of Dar going home that day, she almost laughed. She said gently that they would almost certainly keep Dar overnight. They’d have to let the antibodies run their course, which would take at least 24 hours. Then they’d have to see if he’d eat. We asked her how Dar’s life would change, how our lives would change. She told us he’d probably go home with new medication that would help this not to happen again. We asked if Dar is epileptic. She said she wasn’t sure yet.
Based on Dar’s brother overhearing this anxious conversation, I flash(forward)ed on the idea of his college applications beginning, “I was seven years old when my autistic brother was rushed to the hospital…”
The sun had barely risen. But our long, long, long, long day was just beginning. And by “long,” I mean that the rest of the day was mostly sitting around. Forget our Sunday plans for the kids’ museum in San Jose. Instead, Dar got a CT scan and an EEG. Wifey and I were both reluctant to leave, partly because we worried that Dar would awaken and scream and need one of us to calm him down. On that day, he never quite did that, but he did wake enough to eye us a little and protest his new…accessories. Eventually, in order to feed him, they bound his hands. Which reminded me of myAaunt Sheila, whose epilepsy was diagnosed so late in life that she spent most of her adulthood hospitalized. As a punk-ass teenager, I used to ask Mom why we were bothering to visit her sister up in a Napa hospital when she didn’t even seem to recognize us. Mom said it was important. Mom was right.
I invited exactly two friends over. They each came. They knew exactly what to say and what not to say. I love them muchly.
Wifey began to make plans to spend the night. She planned to sleep in a reclining chair next to Dar. I guess she wanted to be there in case another seizure hit? I…really didn’t want to do that. At some point, a social worker arrived to give us a pass to something called the Family House, which is a facility of dorm-like rooms about a block away from Children’s Hospital. At some other point, I decided to take Dar’s brother and go check it out. Good for him to get away from the waiting room TV. More important, I thought staying in the Family House would probably be a lot nicer than sleeping in the PICU.
And…it would have been, except that we actually weren’t allowed to spend the night. Our social worker’s pass was a day pass; the bedrooms were for families who had come from dozens of miles away. Somehow we had let it slip that we live in Berkeley. The Family House was kind of terrific. Very clean, lit by a lot of sunshine, with plentiful free food and toys in the common areas. If your kid ever suddenly comes down with epilepsy, I highly recommend the Family House. I called wifey over there from the PICU, and she and I spent the afternoon processing this brand new reason that Dar could never expect to live anything like a normal life.
I should be clear: the doctors stopped short of saying that Dar definitely has epilepsy now. The CT scan and EEG revealed nothing unusual. The wording was more like Dar showed signs of epilepsy and that he now needed to be treated as though he has epilepsy. Dar was seen by the same doctor who put him in an MRI machine eight years ago, who wavered on the question. He did lay out our new regiment: new drugs, new protocol. Six different doctors (I counted) assured us that Dar’s new sleep medicine had nothing to do with the seizures. Even as I type this, I find that hard to believe. By the way, at one point, one doctor said, “yeah, uh, sorry about the new diagnosis.”
By about 6:00pm that Sunday, after 12 hours at or next to Children’s Hospital, wifey and I finally went home for the night. The nurses had our numbers and made it clear they would call us with any breaking developments. That evening, our house felt so empty. So odd to spent a few evening hours without the cacophony of Dar’s tee-tee-tee-ing. His brother said he liked having a break from Dar. That’s a thing brothers say.
The only night of our lives without Dar was…pretty restful! At seven or so, we awoke refreshed, got ready quickly, and drove over to the hospital. Under some circumstances, I don’t mind hospitals. But there was something about the previous 24 hours that made me want to get Dar out of there as soon as possible. It was almost as though I didn’t want them to find something that would make Dar’s life even worse.
In the parking lot, we got a call from one of the nurses, who wanted help with Dar screaming. When she learned where we were, she said that it could wait until we arrived at the PICU. When we did arrive, he was mostly calm. That varied over the course of the morning, with some help from us. In a way, it was nice to see Dar scream; that meant that he was back to his old self. In another way, I was amazed to see even the PICU nurses craning their necks and furrowing their brows when they heard Dar caterwaul. My takeaway: Dar’s condition is apparently unusual and surprising amongst people who hear babies scream all day. Yeah. It’s like that.
Dar’s lovely lead nurse assured us that Dar would be released that day, even on her shift, which would end by 2:00. First, they said, they needed to see him eat. Unfortunately he was puking any real food they gave him. We had brought him some of his favorites; I went to the vending machine for more. I spent a lot of the morning pushing him around the floor in a wheelchair, trying to keep him calm…and he sometimes puked out of the wheelchair. Finally, the doctors became willing to release him without him passing the passing test. 2019 pattern noted: 1, people in authority tell us about their firm rules, 2, they hear Dar scream for a while, 3, they bend those rules. He’s really NOT like your 9-year-old screaming; I wish he were.
So we went home with Dar around noon on the holiday of Monday, May 27. Dar was back to “normal,” except for the puking. I stayed with him on the Tuesday; we called him in sick to his (new) school. By the end of Tuesday, he was keeping foods down. He returned to school on Wednesday; I arrived with him and a new medicine protocol that the school…couldn’t do. So we called Dar’s neurologist, who immediately prescribed something that the school could do. Love that man.
As you might imagine, we now have a lot of information about seizures. It’s possible that Dar will never have another one. That’s made a little likelier with his current medication, designed to suppress seizures. It’s also possible that Dar already had seizures before last week. We had and have to sleep at some point. Even if we put a camera on him, even if we’re sleeping right next to him to guard against the possibility of seizures, we could still sleep through something crazy. But the chances of a seizure being fatal are…very very low. Like, the same odds that an 8.0 earthquake will hit the Bay Area today. Not impossible, of course, and worth planning for, but at some point one must live one’s life. Right?
After hearing this story, one friend texted, “Other than having you as parents, Dar can’t catch a break in this life.” It does feel a little bit like that. I don’t know what Dar or we have done to earn this kind of karma. But maybe a few karma credits are waiting for us somewhere? As Aragorn once said tersely, “there is always hope.”