I vacillated on how detailed of a story to tell about Jill’s seizure Thursday night. I want to protect her privacy and respect her story as her own, while still being transparent. After much thought I decided to give you an account of events because her story is my story, and my story is our story…and if her epilepsy can help others understand and cope and support another…then her suffering will not be wasted. I will warn you though, this will not be my shortest post.
My mom was home watching the kids while I went to an OB appointment and then stopped by Stitch Market and chatted with my friends. When my phone rang at 7:45 p.m. and I saw the name “Mom” on the caller ID, my heart sank. My mom NEVER calls when she’s babysitting.
“I’m so sorry to call you, but Jill is hysterical. I can’t get her to stop crying. I’ve tried everything and I’m kinda freaking out.”
I could hear her crying in the background. It wasn’t a regular cry. In fact, it was much like the hysterical cry she cries after having a seizure. I sped home, rehearsing my speech in between prayers, in case I got pulled over.
By the time I got home (I was about 30 minutes away), she was asleep, but had thrown up twice. Even though she was asleep, I wanted her to know I was home again, so I picked her up knowing full well she would wake up. She did, and I immediately noticed she was floppy like a rag doll. Within minutes, she threw up again. Andy got home then and his concern was obvious…something was wrong. Her cry, the way she felt…call it a parent’s intuition, but we both immediately knew.
Since her hair was now sticky from vomit, Andy offered to get into the shower with her. She was shivering. Not just a little bit shivering, but shivering like she was rolling around in the snow in a bathing suit. He turned up the hot water and stood there with her…but the shivering didn’t stop. It was at this point we noticed her pupils were HUGE. You could only see the thinnest outline of that bright beautiful blue. We wondered if maybe she had had a seizure and my mom didn’t notice (her seizures don’t look like the full body jolting you see in the movies, but that’s for another post). In fact, she was acting more like she was postitctal. Even though it was well past her bedtime by this point, Andy said “Don’t put her to bed. Just hold her for the next few hours until we go to bed.”
Within half an hour of his comment, she was throwing up again…and minutes later we were calling 911.
We have an emergency “rescue” med that is a gel based Valium…basically, if we can get the seizure to stop on our own, we simply send the paramedics away and let her rest.
First dose: no change. Second dose: no change.
The paramedics gave her a third dose (of a different) anti-seizure med: no change.
Not that this has ever really helped anyway. We always end up going to the ER.
And off we went to the local emergency room. I wasn’t panicking. This wasn’t my first rodeo. Of course I was scared and sad for my sweet girl and my mama’s heart threatened to burst, but she has epilepsy…that means she’ll have seizures, right? It’s kind of like when your kid has the stomach flu. You are sad. You wish you could whisk it away, but ultimately, you know it will pass and you just have to get through it. I realize how odd that sounds when you apply it to a seizure, but epilepsy is part of our life and so we have learned to adjust.
It’s all blurry now, but it took another 3 – 4 (?) rounds of medication to finally get her seizure to stop. This is fairly standard for Jill. Her seizures are unusually aggressive and typically last 60-90 minutes and require LOTS of meds to make them stop. (This isn’t true for most seizure patients…but she has a “complex case”.) Andy and I sat next to her. Tired and sad, but totally fine. We hedged bets about how long until they would release us to go home. We both figured about 2-3 hours of monitoring and then we could crawl into our cozy beds.
I even texted friends and family to say she was fine and we would be home in a few hours.
The doctor made it a point to commend us. “I just have to thank you guys. You are the most calm seizure parents I have ever met in my career. Thank you.” We smiled. I just thought to myself: if only you could see my insides buddy. I’m a mess.
“Andy…is she seizing again???”
And so began the real events of the night. Her seizing started again. This was a first. She has always stopped and then all was well. Doctors gave her more medication. It didn’t stop. More medication. It slowed…stopped?…started again?…it was so hard to tell. By this point, she had SO many sedatives in her system, nothing was normal…but her eyes were the tell tale sign. At one point my mom had mentioned that she had fallen, but hadn’t seen if she had hit her head. I remembered the story my Neurologist told me of families who have just assumed a seizure was simply a symptom of their epilepsy…instead of the normally tell tale signs of meningitis.
Because the seizures just weren’t stopping, we ordered a CT Scan just to be sure we weren’t assuming it was her epilepsy and miss something as big as a brain bleed. I stood behind leaded glass when Andy looked up at me and mouthed “She’s seizing again.”
My heart sank. It wasn’t stopping.
WHY WASN’T IT STOPPING????!!!!
The CT Scan came back normal (which I figured, but everything was so weird we had to check).
Three hours of seizing off and on later, and the emergency doctor wanted us transferred to a larger children’s hospital with a Pediatric Intensive Care Unit. He literally could not give her more medication at this point. He had maxed out what she could have, and if he gave her more, not only would it be downright dangerous…he didn’t have the resources to save her if it went south. It was about 2:30 a.m. at this point. Andy rushed home to get me an overnight bag with some clothes, a toothbrush, and some deodorant.
I sat next to her. Terror creeping into my heart. This wasn’t “just a seizure”. This wasn’t like the last few times. This wasn’t we had grown to be accustomed to. She was still seizing off and on.
You’re not supposed to seize for three hours. It’s not okay.
And then her heart rate spiked to 207 (it shouldn’t be over 140)…and her chest started heaving in and out…her little tummy sinking unnaturally low into her body. When I alerted the ER nurse, I watched her face turn to horror and she sprinted out of the room.
Jill was going into respiratory distress.
The sheer volume of meds were causing her little body to shut down.
And this is when my cool as a cucumber attitude vanished. And so did the calm demeanor of the entire ER ward. Suddenly, there was a team of about 10 people swarmed around us. Doctors, nurses, you name it, were running…yelling…and had a look of concern on their faces that I have never seen on a medical professional. My trembling fingers texted Andy to come back NOW. The nurse handed me a pen to sign the transport papers…with a visibly shaking hand. I kept talking to my girl. Stroking her hair as an army of people amassed with all the equipment to do an emergency intubation. At one point, I stepped into the hallway and watched through the window.
And for the first time in my life, I prayed that God would not take my sweet girl that night.
This was serious. This was life and death. This wasn’t anything close to routine.
And I prayed the most desperate prayers of my life. “Dear Lord, please let her stay with us longer. Please don’t take her home quite yet. Please heal her. But if you do, please don’t let it crush our family. Please let us turn to you instead of away from you. You are good. All the time. No matter what happens. But please, I beg you to let us see those big blue eyes for a little longer.”
I walked back in the room and went back to talking to her. Telling her I was right there. That she was so brave. That I loved her so much. That I missed her.
As someone with an intubation tube came closer to her mouth, her breathing slowed. Her heartrate came down. She fluttered her eyes.
“Wait. I think she stopped! She’s responding to me!” I yelled.
They all looked at me like I had 7 heads. To them, she was completely out of it. Unresponsive. Certainly unconscious but for the open eyes. But my Mommy heart could see the subtlest of difference. When I spoke to her, the edges of her eyes crinkled just the most microscopic bit. Her eyes, while seemingly frozen in place and unable to track, glittered when I smiled at her. Three different people came to see what I was talking about and they all thought I was insane.
I insisted. “I know she looks terrible, but I’m telling you…someone’s home. She can hear me. See? Look at her heartrate!”
The lead doctor furrowed his brow. Looked at her now normal monitor readings. Held his hand out to stop the intubation team. “Stop. Mom’s know. Hold on. I’m going to try something crazy. Mom…can you pick her up and just hold her? Keep talking to her.”
And so I did. I stroked the blonde silk atop her head. I rubbed her sweet milky skin. I inhaled her scent. I took note of her warmth. I didn’t know what was going to happen in the coming hours, but I was going to treasure this moment. God was still good. No matter what. I just kept repeating that over and over. It became my mantra.
The longer I held her, the better she got.
Now, please realize that by “better” I don’t mean she perked right up and started giggling. But she was certainly no longer so close to the unthinkable.
It was as if the entire room let out one big breath at the same time.
We were still transferred via a critical care ambulance at 3:00 in the morning. This isn’t just a regular ambulance with a paramedic…but an actual Critical Care Nurse is in the back. Serious stuff. But we were transferred with no intubation, which was a good sign. She was doing okay. Out of it, and mostly unresponsive, but okay. (Funny how quickly definitions change.)
We pulled up to the children’s hospital and were given a sterile, private room where I had to recount the night’s events. For a minute, I almost had an out of body experience. I heard words jumble out of my mouth that were unintelligible to the average person. Hypoxic Ischemic encephalopathy. Coreoathetoid Cerebral Palsy. Likely Ataxic. Postictal. Early onset epilepsy. MRI shows grey matter consistent with diagnosis. On and on and on. And it shocked me. To hear my voice and all those crazy syllables jumble out with no effort.
But God is incredible.
One of the nurses has an 8 year old with a seizure disorder and although I was BEYOND exhausted and it was 5:00 a.m. by now, we exchanged stories. For the first time in my life, I found someone who got it. Who knew exactly what I was going through. She rattled off medical terms and complicated medication names…and she was speaking my language. As weird as it may sound, it was a balm to my tired soul. At 5 in the morning. On no sleep. 7 months pregnant.
But my girl was deeply sleeping in the bed next to me. And she wasn’t seizing. And her vitals were normal. And life was so brilliantly beautiful.
I was able to catch about an hour of sleep before Jill woke up at 6:30. Groggy. Floppy. A shadow of herself. But still Jilly.
Jilly Bean on the mend.
Her seizing never returned. She slowly gained some strength. I watched from my chair bed as a group of 15 PICU staff did the rounds and the head doctor told the story of how my girl came to this room. And I realized that I hadn’t overreacted. It was for real. Hidden among words uncommon in the English language, I heard the severity of what happened just hours before.
But she was here. I was here. God is good. No matter what.
We hung out until about 4:00 in the afternoon.
We got home and I hit my bed and slept. And slept. And slept.
Why was it so bad this time? I don’t know. A call to our regular neurologist today will likely be long and have lots of notes.
But for now, I’m just happy to be home as a family.
But God is good. Always.
No matter what.