Momming

Between Sleep and Awake

I always worried I’d pass along “my issues” to a girl of my own, and I figured that’s why I didn’t have one. 

For example, I used to have a fear of not being able to wake up. There were times in my childhood when I would hear the outside world calling and I’d be stuck in a dream-state. I’d know it was morning, I could understand voices, but my body simply wouldn’t wake up. I suppose I felt a little trapped. And then suddenly, I’d suck in a big breath of air and force my eye lids open. I’d shudder and try to brush it off as best I could and hope it wouldn’t happen again. 

I also woke often with a lot of eye rheum, or discharge covering my eye lids, and I’d yell for my mom and whine until she took a warm, wet cloth and helped me clear it. I hated that stuff. I’m sure I was a joy to be around during these times. Who wants to be awake when they cannot see?

I have to wonder if having trouble waking is what it’s like to have a seizure. I wonder this because on Tuesday, August 18 my Jimmy didn’t wake up at his normal time. I figured he was tired after days of go-go-go. So, I chose to leave for work. I will never, ever leave without Jimmy being awake, again.

Just a bit later, our Nanny texted my husband and me and asked if we felt it unusual he would sleep in two hours past his normal time. I joked, “Well no, he hasn’t napped in over a week and we’ve been on the go with baseball and the pool. But, he’s still breathing right?!” I hate that joke, now.

It was 10:08 a.m. This is what we’ve pieced together; how it all ensued. 

She told us she went back up to check on him and he was staring up at the ceiling so she said ‘Good morning’ but he didn’t respond. She walked over to him and she rubbed his back but he starting shaking and vomiting, though he looked asleep. She ran for the trash can in the bathroom and sat him up in bed with her and the can. His head turned to the right side and stayed there. His eyes remained opened and fixed to the window above the head board, his arms in a 90 degree angle. She FaceTimed me and said something is wrong and that he just vomited, and so instinctively I RAN.

When I got to my car, I looked up signs of childhood seizure and read “vomiting… looks asleep…if it’s been longer than 5 minutes call 9-1-1”. I called Zach and told him this was a seizure, I know it, and that I’d be calling 9-1-1. 

He said, “I’m coming”. 

By the time I got home I was finishing up my call with emergency services. I ran upstairs. The image of our loving Nanny holding our son – holding it all together – was shocking, in and of itself. I’ll never, ever forget it. I’ll always be in debt to her. The humanness of her inherent response to our son.

“What do you need me to do?” 

“That. Hold him.” As I answered her question, our 18-month-old toddled into the room. I swooped him up and started kicking all of the legos out of the way attempting to clear a path for the paramedics. I ran downstairs, clearing everything I saw. And, there was our almost 5 year old watching a show, immediately picking up on my panic.

“Where’s Jimmy?”

“Miss Taylor is helping him. Let’s put on a show for you.”

“I already have a show on. Do you remember when I was sick before?”

“Yes, I do. Please stay here.” I ran outside begging the ambulance to hurry. I went back in and checked on Miss Taylor and Jimmy – no change. Gabe was at the bottom of the stairway, now.

“Buddy, go watch your show.”

“But, what’s wrong with Jimmy?”

“We’re taking care of him. I need you to go sit.” The baby had been on my hip the whole time, and I looked him in the eyes. I think he looked back at me as if to ask, what’s wrong, Mommy? My adrenaline was pumping.

I ran outdoors, again. Finally, the EMS was pulling up and directly behind them was Zach. He parked on the street and I don’t even know if he turned the car off but he ran inside. Certainly, the image he found in Jimmy’s room that will haunt me forever startled him, too.

I don’t even remember what the paramedics said to me, but I pointed them in the direction of the stairway to my son’s room. 

Miss Taylor came out teary eyed as they loaded Jimmy onto the stretcher. She took the baby (I think?) and Zach instinctively climbed into the passenger side of the ambulance without talking to me. I asked the squad if I could follow. I pulled out of our driveway, and on my way to the hospital felt the need to call my mother-in-law and my dad. No idea what I said; but they rallied. 

When I finally arrived at the hospital, they were already in a room at Emergency attempting to give Jimmy a second-round of anti-seizure medication. The first round was given in the ambulance and it wasn’t working.

Someone came to talk to us. “Where would you prefer we transfer him – Toledo or Columbus? We don’t have the capabilities to support level 3 pediatrics.”

What?! Then someone said they were going to need to intubate him and lots of medical people entered the room with all kinds of equipment. 

“The life flight is almost here. Where did you decide?”

I somehow remembered I could speak. “Is time of the essence? Where would you choose? Just tell us what to do!” I pleaded. 

“Nationwide Children’s has more resources and is a 25 minute helicopter ride.”

“Yes. There. Can we both go together?”

“No… you’ll both have to drive separately… There is a weight limit in the helicopter.”

“He’s 6! Certainly at least one of us…”

Moments passed. It seemed that Jimmy continued to seize and a foamy vomit formed around the tube. It was the first of many of the coming moments when I thought to myself, “There is no way I can do this.”

The life flight team entered and asked which of us was coming and to provide our weight. Hardly consulting Zach, we confirmed he’s going and that my father-in-law would drive me down to Columbus. 

With tears and snot running down my face, we kissed and I walked quickly out to the parking lot. I could hear and see the copter atop the hospital. 

That car ride was the longest, most physically uncomfortable I’ve ever been. By far, the worst part – not being next to Jimmy. I was hot, my back and neck ached, I couldn’t stop crying, my throat was raw. I was also starving. It was already 1:00 p.m. – and it was only 1:00 p.m. 

When I arrived at the hospital, we walked in and navigated on our own where to go. We learned I had to go through admitting, first. While I filled out paperwork, Zach was busy watching the ICU team struggle with keeping the intubation; Jimmy kept rejecting it and vomiting more. 

When I finally got to the room, Zach was sitting down and talking to the neurologist (the second of maybe 9 we’d meet during our 3 days, there). I helped paint a picture of Jimmy’s daily life and told of the nuances that made him ours. It felt like an interrogation, but soon we became used to providing every single detail that may or may not have led up to why we were here, at this crossroads. 

I felt comfortable with all of the various doctors and nurse practitioners and nurses who would love on our Jimmy, but none as much as Dr. Chung. In a way, she held our hands through that first day and really listened while she observed and interacted with Jimmy.

Jimmy remained “asleep”. Of course, they had immediately tested for COVID-19 (negative) but found he had three other viruses in his little body (rotavirus, adenovirus, and chlamydial pneumonia). He felt warm to me, so I knew he was feverish. Because of the trouble with the breathing tube, they did sedate him, again. So, I assumed he was so sleepy because of all of the sedatives. Quickly, I learned that the medical team was concerned he wasn’t waking up, yet. Apparently sleep is important after seizures, but only so much. 

In 6 short years, there really hadn’t been a day I hadn’t at least gotten to see that amazing Jimmy-smile. On this day, I learned what a day without one of those smiles from him feels like. 

Around 5:00 p.m. they decided to hook-up an EEG and if he hadn’t woken by 7:00 p.m. they felt it necessary to test his spinal fluid for meningitis and encephalitis or various mosquito transferred, more serious, diseases. 

Even with Jimmy seemingly out of it, four of us struggled holding him still while they placed almost 30 different receptors around his skull. I found this slightly comforting and a little bit eerie; the lead practitioner said it was a good sign. I took any good news as gold.

As he came-to and finally opened his eyes at times over the next couple of hours, there was a moment when he sleepily looked at my face and clumsily leaned forward. I knew he wanted a kiss. I planted one on his little mouth. And then, in the next moment while we were holding him still for a nurse to draw blood for a lab, he ripped his arm away from me and said, “Get away from me! I’ve had enough of you!” 

They needed to put him in a twilight state, again, to pull the spinal fluid (which was clear, thankfully), but after that we were finally able to simply treat the viruses with an antibiotics and he was given a steroid for the strider he had from the breathing tube. He came out of all of the anesthesia, slowly. He had some trouble with his gross and fine motor skills, and it was terrifying seeing him challenged with gripping a spoon full of ice chips and bringing it to his mouth. 

“Why am I at the hospital,” Jimmy asked us sometime during the second day.

“Well buddy, you were sleeping in for a long time, yesterday, and so we knew something was wrong so we brought you to the hospital.” 

“You mean when I moving my mouth like this?” he asked and showed us how his mouth slightly opened and closed. How did he know that? That place between sleep and awake…

They ruled out major infections and started talking to us about epilepsy. Focal epilepsy, to be exact. Apparently, the EEG showed a “slowness on the back-right” of the brain and a “flashing” on the back-left. They ordered an MRI to ensure there were no masses anywhere on his brain that was causing either of these things.

We enjoyed our Jimmy “coming back to us” over the second day. He loved ordering from the cafeteria menu from his TV remote! We met with so many different physicians and specialists and nursing teams and we attempted to play with Jimmy in the small room. Zach came in with ice cream, at some point.

On the third day, Zach and fasted with Jimmy before his MRI since he’d have to be sedated and intubated, again. We only told Jimmy he was having a picture taken of his brain. Zach went with him to this procedure. He had to watch our Jimmy be so scared when he realized they were going to be giving him medicine that would put him to sleep. “But I don’t want to go to sleep.”

They did find “a unique fold” and some “white matter’, but overall Jimmy’s brain was o.k. We consulted with another team of neurologists and they assured us that all of the smartest of the smart people were analyzing Jimmy’s results and his case. We were eventually discharged on the evening of the third day, with a little persistence. Jimmy was so excited to go home!

And now, I just don’t know if I can ever go back to sleep, again. I don’t know if I ever want Jimmy to go to sleep, again. Life before the seizure is no longer. We have a new routine, a new medicine he takes every day. I am leveling with the idea of being an epilepsy parent and I am preparing myself to become even more of an advocate for our boy. This is one of those hard-things that, at some point, will feel normal, I suppose. For now, it just feels like a bad dream.

“You know that place between sleep and awake, the place where you can still remember dreaming? That’s where I’ll always love you. That’s where I’ll be waiting.” – J.M. Barrie, Peter Pan.