This terrifying, traumatizing event has changed our lives forever. Brogan (BG) and I will never be the same. It was one day before Lumi’s 11 month birthday. January 17, 2019. Lumi had 3 seizures. He was diagnosed with coronavirus (basically a common cold with fevers) and the seizures were diagnosed as “Complex Febrile Seizures” meaning he had more than 1 seizure as a result of a rapid-onset fever. I’ve chosen to share this experience in hopes that if you’re currently experiencing something of this magnitude, you know you’re not alone, and anyone else who has experienced this firsthand will reach out and tell me that it will be ok and that it does get better. With that said, please don’t reach out to BG after reading this blog. His process for healing isn’t the same as mine when it comes to sharing.
It was like any other night. We put Lumi to bed at 6:30p and he fell right to sleep. He didn’t seem abnormal or sick anymore. He had a fever for a day or two the week before but ironically was deemed healthy by his doctor 24 hours before this all happened. Brogan bathed him, I fed him his bottle and everything seemed like any other night. While feeding him I watched as his eyes got heavy and at one point rolled back. If my memory serves me correctly, this happens many nights during the last feed. He gets tired and his eyes get heavy. I held him for a couple of minutes before laying him in his crib and the only thing that sticks out as being different was the twitching I felt from his body while holding him. It didn’t alarm me though because well, most parents aren't anticipating seizures from their healthy babies, and most nights while falling asleep next to BG, he too twitches. I laid Lumi down in his crib and when I walked out of his bedroom I said to BG “Wow! He was tired. What did you guys do tonight? He was so exhausted his body was twitching before I even put him down.” These were not jolts mind you. These were the smallest twitches ever that I don’t think would alarm any parent. Many of us have woken ourselves up from the “falling” sensation while falling asleep, or that unintentional runner’s leg flex. I figured Lumi’s movement as he fell asleep was similar.
We went about our night. Cooked dinner, I even vacuumed and was actually pretty surprised I didn’t wake Lumi as a result. To almost the minute, exactly one hour later we were eating dinner with the monitor next to us (usually the sound is off because his room is so close and he doesn't have sleep issues at night) but this time the sound happened to be on. We heard a loud noise coming from his sweet little body that sounded like he was having a nightmare but definitely not a noise we’ve heard from him before. It was such an odd tone that while we watched the monitor I said, “Poor baby is really having a bad nightmare. I wonder what he’s dreaming about?” We watched for another 10 seconds until I said, “Is he having a seizure?” There was no worry in these seconds while watching him because deep down I didn’t think anything was wrong. Very calmly Brogan said, “Go check.” I don’t think any parent anticipates their healthy child having a seizure so in our minds it was still just a bad dream. I walked into his dark room and said, “Hey baby, it’s mama.” As I went to pick him up his body was stiff and convulsing. His eyes were in the back of his skull, his head was shaking all over [think Stevie Wonder side-to-side with 10x the speed & power] but he was in a tight, tight ball vibrating. I screamed, “He’s having a seizure” and I immediately handed him to Brogan before even exiting his bedroom. I couldn’t hold him. I couldn’t look at him. I couldn’t be near him. Time seemed to stop. I called 911 immediately and was screaming on the phone “my baby is having a seizure!” I couldn’t calm down no matter how many times I was asked to. I was hysterical. While I had 911 on my phone in one ear, I used BG’s phone in the other ear to call my neighbor whose husband is a cardiac surgeon. Shocked she picked up because they too have a baby Lumi’s age, I said, “Lumi is having a seizure please help!” and hung up the phone. In the midst of my panic and hysteria, BG went outside to the driveway and was holding Lumi’s convulsing body, patting him on the back while screaming “Somebody help! We need help!” Travis (the cardiac surgeon) and Leah (his wife) were over within seconds. BG and Travis brought Lumi inside and Leah embraced me while I screamed, still holding the phone with 911 on. The guys laid him down on his side on the pink, front entryway carpet and proceeded to undress him, placing a bag of frozen fruit on his convulsing body. His seizure lasted at least 15 minutes while inside our home. Finally, the firetruck arrived and I was allowed to hang up with the 911 dispatch. During this time I was in the front yard, only feet from Lumi on the carpet inside, but I couldn’t stand to watch him seize. Once I hung up with the dispatch I called my brother in law Karim who is a pediatric anesthesiologist. He was on call that night at the hospital and I didn’t think he would answer his phone, but I needed someone to tell me that Lumi wasn’t going to die. When he picked up I sobbed “Lumi is having a seizure and the EMT’s are here but I need you to tell me he’s not going to die.” I’ll never forget standing feet away from the firetruck and them ignoring me with such a calm, in charge and trained demeanor as if they had received this exact call a thousand times before. They walked right past me and didn’t say a word as they entered the house.
The paramedics administered Versed (a medication similar to Ativan which is used for sedation) but according to BG, who was with Lumi the entire time, it took a very long time to stop, or even slow the seizure. It was far from immediate. Eventually the ambulance showed up, it was coming from Del Mar so it took a good 20 plus minutes for it to arrive from the time I called 911. Once the seizure slowed down everyone started exiting the house. BG was holding Lumi on his chest and the paramedic had our car seat in the ambulance for the ride to the hospital. I quickly ran up to BG and Lumi and kissed his arm as they passed. I couldn't see his face, it was sort of barried in BG’s chest. Later I found out that this slick spin move, rotating away from mom/me wasn’t an accident. BG explained the next day that Lumi’s face looked void of any life and he didn’t want me having flashbacks of him looking that way.
Only one of us was allowed to ride with Lumi, so BG went. Leah and Travis stayed with me until my sister, Zoe (Karim’s wife) who lives close came over to drive me to the hospital. It was reported that Lumi had another seizure in the ambulance on the way to the hospital. BG told me they tried to distract him with small talk in the front seat, asking questions about what he did for a living, as they transferred Lumi from the carseat to a gurney during his second seizure episode. Brogan distinctly remembers turning around to look and seeing one of the paramedics dramatically wiping sweat from his forehead with both hands, something right out of the show ER. It was high stress for everyone involved.
Zoe and I arrived to the ER where we were told Lumi had his third seizure. I walked in and couldn't believe my eyes. Lumi filling up only a fourth of the bed, on his back, lit with bright lights. My life, my baby outside of my body was so sick, the kind of sick that comes with loss of control and eyes that no longer work. His naked body was flailing and he was screaming with eyes fixated on something that looked like me but wasn’t. His eyes didn’t notice me. Our voices didn’t soothe him and as BG and I stood over him with our faces as close to his as possible singing lullabies and telling him “mama and dada are here. You’re ok,” over and over and over, eventually the medication allowed him to close his eyes and rest. He was very doped up.
My nightmare doesn't come to an end here, not yet. We spent the night in the hospital as he tried hard to battle the fevers that caused the seizures. At one point in the middle of the night he was in child’s pose sleeping while the nurse, BG and I placed ice cold wash cloths on his bare back and neck. Within minutes his body would transform these nearly frozen cloths into hot towels, the kind they give out on airplanes that might be too hot at first touch. We were trying everything we could to decrease his internal temperature. It was so, so sad. His low moaning cry was a reminder that he was in there, tired and sad. He would jolt for a second from the feeling of the cold cloths touching his bare skin but he never moved or woke up.
The next day, with the education and choice from the doctors we decided that going home would be more comfortable and beneficial for Lumi. He still had a fever and continued to be febrile (fever) for 4 more days. As a result of the seizures he now has a 30% increased risk of having a febrile seizure again and because his fever persisted for 4 days after our hospital stay, we were on seizure watch around the clock. With constant temperature checks and medication given every 3 hours, BG and I weren't sleeping. Especially, BG. He took one for the team and continues to as he lets me go to sleep first. Just knowing he’s watching the monitor allows me to relax and pass out. Ann, BG’s mom, flew in from Snowmass, Colorado immediately to help us. She took the 4am shift each morning so that Brogan and I could both sleep for a few hours without a monitor in our face. Having her here for a few days was a godsend.
As I write this it has been 4 days since the seizures. His fever has subsided as of yesterday but now he has a rash all over his body. And still, every single movement or sound coming from Lumi while sleeping now sends my body into a panic. I drop what I’m doing, my heart beats in double time and I start to sweat. Usually “oh God” leaves my mouth and some tears begin. The amount of fear and panic that now lives inside of me has become debilitating at times. I don’t want to live in a state of fear around him having another seizure every time he gets sick. I don’t want to be alone with him because I’m scared It’ll happen when I have no one around me to help and I can’t bare to see him that way. Will life ever resume to what it felt and looked like before? Will we ever feel comfortable leaving him with the babysitter again? What if this happens when we are out of town and he’s not with us? The list of anxieties feel never-ending.
Maybe you too are going through something of this magnitude (or far larger) and reading this makes you feel less alone and scared. With the many horrifying details of this traumatizing experience left out, I want you to understand I am sharing this experience one, because it’s helping me process it all, but also in hopes that anyone else who has experienced this will reach out and tell me it will be ok and it does get better.