Other women don’t tell you, “Thank you for the heartbeat” (a post about Febrile Seizers)

is what your son will say to the OB assistant after she lets him hear his little brother or sister’s heart beat on the Fetal Doppler, his three-year-old hands, on fire from the fever, patting his own belly to the whooshing rhythm. He had woken-up that morning burning, climbing into your bed like a little ball of hot coal to tell you how cold he felt. Two out of the three of your thermometers were broken, but the axillary one gave you a reading of 101.3 after the five-minute battle to keep it under your son’s armpit. You realized you had no trace of children’s Tylenol or Motrin in the house and your husband had left before the sun that morning to go on his first-ever work trip, and while you have left him with your son numerous times already—for conferences, poetry readings, even a girl’s weekend—this is his first time leaving you. Fortunately, he did not take the car so you and your son rushed over to the local CVS and stocked up on strawberry and bubble gum flavored fever reducers, and took a dose instantly in the Starbucks across the street, where you also just so happened to run into his pediatrician on her day off and tell her, “Well, I hope we don’t have to see you later this week, because this one’s got a high fever and I have to go to my prenatal appointment.”

You gave him the dose appropriate for his age, as the bottle instructed, 3-4 year olds, 5ml, and drove to your doctor’s office where everyone gushed at how sweet and warm and loving your son is. Where he played the file cabinet like a piano and gave your doctor and her receptionist Happy New Year’s treats. Where he ran the hallways pulling behind him a waddling wooden duck as he quacked along to the heartbeat-like rhythm of its feet. He stayed warm the whole time, but in good spirits, and you figured, after the appointment, you’ll go to the grocery store by where you parked and then get home just in time for that next dose of Tylenol.

At home, his fever read 103.3, and this time, your spitfire son didn’t have the energy to fight keeping the thermometer in place. He refused food, save for picking a few mushrooms off the pizza, and just wanted milk. Only 3.5 hours had passed since the first dose of Tylenol, but since he was 36 pounds according to the scale he played on at your OB’s office, you figured you’d give him the higher dosage of 7.5 ml since the earlier one didn’t seem to have worked. Then you sat holding him on the couch as he drank his milk and watched a Russian-language cartoon about cats.

Suddenly, upon finishing his milk bottle, he made a kind of chocking sound and you saw his tongue push forward to the front of his mouth, “Do you need to throw up,” you asked, and before you knew it, his eyes rolled back into his head and his arms and legs clenched towards his body and froze stiff. The tips of his fingers turned a faint blue and so did the outline around his lips, from which milk was still slowly trickling. You called his name and tried to take his hand, but knew instantly that this was a seizure and that he was completely non-responsive. If it weren’t for your dear Mama friend, whose son had just had a similar episode months prior, you would have been screaming and panicking all the more, but thanks to her, you knew exactly what this was. A Febrile Seizure. And no one tells you or warns you about them. And until you’ve seen your child in a state that is scarier than a lifeless one, you don’t know the paralysis, the horror of knowing there is absolutely nothing you can do to help them, to reach them, to get them out of this.

You called your Mama friend and she said to call 911 and make sure you time the seizure. Which you did, you had looked at the clock as soon as it started, though time stood even more still and stiff than your son’s body. The responder told you to make sure he was on his side and not to let him get up after he regained consciousness. After about two minutes, his eyes returned to gaze somewhat forward, though completely glazed, and his clenched hands slackened and were able to gently wrap around yours. He continued not to respond to you calling his name and reassuring him that you are here, you are with him, you are always here, and that everything was going to be alright even though you were never sure of that yourself. Then finally, you asked him if he wanted to hear you sing and he nodded ever so slightly so you just sat stroking his back and singing songs you can’t even recall. You continued singing as the firemen arrived and placed an oxygen mask on him which he eventually tried to pull off, and you saw this resistance as a great sign. The three men in dark uniforms hovered over you both, reminded you to pack a jacket for him so you ran from corner to corner of your house shoving things—a change of clothes, shoes, coat, low battery kindle fire with only one movie option for him to watch, and a red plastic disposable sippy cup—into a ripping plastic bag.

You didn’t even see the ambulance responders arrive, but a very tall man with a kind smile bent over you, and in accent-less Russian, asked your son whether he could pick him up and carry him to ride in a comfy car with a really cozy bed. You thought you were hearing things. The odds of someone speaking Russian to you in Point Breeze, Philadelphia, low, the odds of your son letting someone else carry him, even lower. But to your surprise, your son wrapped his arms around the man, who wrapped the big blanket around your son, and somehow you made it over to the ambulance. You are trying to recall now, how you locked the door or where the firemen went and whether the stretcher was brought into your house or whether it was waiting in the ambulance. It’s all a blur. But your son’s body, draped and strapped in, his eyes barely staying open, this you cannot get out of your mind. The kind man from Odessa helped keep you calm, he told you about his daughters 40 minute seizure, he told you that it’s good for your son to sleep now, reassured you that it’s good that you called the ambulance because if anything else happens on the way, they’d be there to help. And you just stroked your son’s hair and watched the pulse in his neck, the skin moving up and down so fast, trying to keep up with his heart. “Thank you for the heartbeat,” you thought, hearing your son’s small voice inside your own mouth.

At the hospital, you were kept in the triage waiting area for about an hour. So many sick children. The kind man warned you about this, he said this was the busiest season and while experts in pediatrics, the downside of Children’s Hospital is that every child is just another patient, not one more urgent than an adult. And your son, burning up again, slept on you after the weighed him and gave him more fever suppressing medicine and even let him eat a popsicle, of which he could only manage half. There were so many children in that waiting area. You felt grateful your son had your body and his big blanket and could actually sleep.

Once taken back to your room, things started to go faster. You didn’t get any more answers but at least your son was cared for and examined by many knowing hands. Diagnosis: Simple Febrile Seizure. “Did he clench more on one side?” the asked, “What did his hands and feet do?” Nothing simple about these questions because trying to think back on the moment of his eyes rolled back and his body frozen, you had a hard time seeing whether one hand clenched more, or what his feet did at all. You tried to answer the questions the best you could. You tried to ask all the right questions to know how to proceed. But the answer, still the same: Simple Febrile Seizure, cause of fever unknown. No symptoms other than fever present. Nothing else found on the exam. Simple, keeps ringing in your mind. But there is nothing simple about this when it happens to your child.

Now you know they are fairly common, although rarely talked about, except the Mama for whom you are so grateful, who shared her own horrifying experience. Such seizures occur in 2 to 5 percent of American children before age 5, about 200,000 episodes a year. And if one episode occurs, it is likely that it will occur again. And the doctor tells you that keeping the fever down is not going to prevent a seizure, “It was going to happen whether he had a fever of 101 or 103, there is nothing you could have done,” she tells me. And there are no warning signs to watch out for. And there are no triggers to avoid. Simple. And as far from simplicity as possible.

From now on, every fever will be all the more terrifying. Every fever will remind you of what happened and what can happen again. And you know you are incredibly lucky. That this was a minor scar. You know, that once the fever dropped, your son ran out of the hospital room so fast that you couldn’t keep up with him. You know that when the nurse brought him snacks just before he was discharged, he wanted to share them with you and hug you and you were starving from not eating all day and growing another life about whom you’d nearly forgotten, concerned only with the heartbeat that has left your body, not the ones—yours and your unborn child’s—still beating inside.

“You should sleep next to him,” the doctor told you, “Just in case. To keep an eye on him. And if another one happens within 24 hours, then you’ll come back and we will do a full neuro and blood workup.” And so your eyes have been on him ever since. He slept in your bed and you kept stayed awake for the longest time just watching his belly rise and fall, listening to his soft snores and the soft wheezing whistles his breath made in such effortless sleep. You set alarms throughout the night to check on his fever and change him out of sweaty clothes and give him more medicine. You kept a part of your body always touching his, as though this would tell you something. As though your touch could keep him safe.

And the next day—this day that is ending as you type this, hands shaking from exhaustion and the worry that he is sleeping in his own bed without you tonight—you couldn’t take your eyes off of his eyes. Every time he’d look a little glazed, his eyes a little too glassed over—sucked in to that damn show about those three Russian speaking cats which is the only thing that he wants to do—you’d be afraid it’s about to happen again. You’d see his eyes rolling away from you and be powerless to stop it. His every gaze not directly at you just reminds you of that moment and everything inside you freezes and stiffens and seems to seize the way he did.

But it hasn’t happened. Not yet. He is sleeping. You think you hear something, and run upstairs to check, this is the third time in the last hour that you have done this. He is simply sleeping, but how far from simple that is. His sleep, something you continue to be grateful for. As soon as you finish this, you will go and give him another dose of Motrin. You will set an alarm in four hours when you can give him more Tylenol and another two hours later when the next dose of Motrin is allowed. 2 am and 4 am. You will repeat these times so that your internal clock wakes you before the phone. You will sleep next to your husband who thankfully came home early, having missed all the excitement. You will feel at least slightly more at ease because if something else happens, you are not going to be dealing with it alone. You will lay your hand gently on your son’s back as he falls back asleep after the medicine, letting your fingers rise and fall with his body, with the steady rhythm of his slowed breathing, with the echo of his pulse. You will hold on to the feeling of its tick-tock-like stroke it against your palm, thinking how time is now marked by your son’s beating, thinking, “Thank you for the heartbeat.”

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