Article by Cathy at Working Mommy Life Blog
The dreaded seizures, they have been a part of our lives now for more than a year, nearly two actually.
What started out as something we thought was going to kill our eleven-month-old baby boy, became something we dealt with on an almost weekly basis.
Like you would do laundry, we fought fevers to prevent those seizures. Sometimes we won, 16 times in a year and a half we did not.
Then this Wednesday we came face to face with our true archnemesis. The seizure that took control of the tiny body of our 2,5-year-old this week was like nothing we had ever encountered before.
To give a little background prior to Wednesday.
There had been a lingering middle ear infection, passing back and forth between his two ears for weeks, maybe even a month. As an always busy working mommy, I often lose track of time. Regardless of how organized I try to be, which is probably why I write most things down. Anyway, so after three GP visits, a call to the ENT, and a night visit to the ER of our nearest hospital, we thought we had cleared up this ear infection as we could no longer see anything coming out of his ear and all drops and antibiotics were finished. (Alarmingly, it all started with an ear that was bleeding and excreting pus, not something you take lightly first thing in the morning when you think there may be something happening in your child’s head, or even the brain directly!) Brain bleeds never seem to end happily on Grey’s Anatomy!
So started a month of visits and medications to sort out those ears. Once done, we thought we were in the clear.
We were cocky, our child was better, he had had his tonsils and adenoids out in December and grommets put in. The seizures had been conquered, we were awesome.
Or so we thought.
This week the fevers started again, they refused to go away no matter what we did. The usual tell-tale signs of a runny nose or a cough were not there.
The ears were both clean. We didn’t know what we were dealing with. We watched him like hawks, but he seemed fine and wanted to play and run around as usual. We gave regular medications both orally and using suppositories when the fever seemed to be spiking a bit too quickly. He went to school, we carried on working.
Wednesday morning he was even hotter and had been throwing up the night before. We thought he ate too much supper, and gave more meds and bathed him and put him back to bed. He had a good sleep, woke up hours later and seemed a bit more chirpy. We gave him more meds and went out for a quick lunch with family who are in Cape Town for a short while, and anyway, he would be fine, no more seizures right?
He played and had his face painted, ate some lunch, drank lots of cold water and we regularly checked with our ever-present thermometers that he was ok.
Home after that and early to bed. We kept going in to check on him, made sure the fan was on, he wasn’t covered in his duvet, meds had been administered, a water bottle was nearby. We were sorted and ready for bed ourselves.
We were lying in bed trying to catch up on some series, we get through about 20 minutes a night if we are lucky, before one of us is sound asleep, when we heard a blood-curdling scream. I say this not to be dramatic, but because when a seizure starts he screams. It is not his voice, it is primal and wild and frightening and this one lasted a few seconds. Our bedroom door is diagonally opposite to his and we covered that space between our beds in split seconds. He was in the throes of a seizure.
My mind felt like it sped up as we ran down the passage, my husband carrying him horizontally in his outstretched arms whilst I ran to grab meds, wet cloths, start a bath, feel his forehead… All the while it felt like my brain went into a state of complete lethargy, I can’t describe it. I was panicked and calm at the same time. I was running around and also managing to think straight.
Minutes upon minutes were flicking by on the brightly illuminated numbers of the digital clock nearby.
The panic then started to win the battle as we realized this seizure was different from the others. It was aggressive, his body was angry and not letting up. His legs were rigid and his toes pointed. His hands were little fists I couldn’t unfurl. His teeth appeared to be clamped onto his tongue, which was slightly hanging out of his mouth. His eyes were closed, but with little slits where we could see the whites. A lot we had seen before, but it was harsh, it was not stopping, his body was so strong and we were powerless to do anything to protect him. His bladder emptied all over us and him. That was a first.
Hubby had already put in a suppository, it came out. That was a first. He put in another one. I was back in the bathroom, where the bath was full from the last bathtime, as we still had to manually carry the water out in buckets to the garden and the toilets for flushing. I ran to the shower and tried to get the right temperature, it can’t be too cold or too hot. The water felt like it took hours to heat up even slightly. Hubby and baba were in the shower, but it wasn’t enough, the water was too light against his skin, which felt like it was on fire. They got out, we ran back to the changing table. Minutes were still passing, the seizure was not stopping.
Tears were coming, I knew this was out of our hands, this was not like the last 16 or more times this had happened. I suggested an ambulance, but even as saying it realized we could get to the hospital faster ourselves. (We had called an ambulance with his first seizure at 11 months old and it had taken so long to arrive I had almost collapsed in the driveway holding him with anxiety.) Hubby called the hospital, the lady told us to come straight through.
We ran to get dressed. I ran to fetch our other toddler who was still sleeping soundly in her bed. I wrapped her up and ran to the garage, tripping over my untied sneaker laces, brightly colored bra straps showing under my light grey t-shirt – the fact that I managed to even get dressed is worthy of a gold star or Noddy badge.
By this stage, the panic was surging through us. I was crying and shouting at hubby to just put her in her car seat and not fight with those damn straps to clip her in, not now. We were running out of time. My baby was in my lap, still rigid. The seizure had been going on for more than 20 minutes already.
I have been sick a lot lately as well, between lack of sleep with these two and work and the house it’s been a fine balancing act the past few years, but that is for another blog.
Anyway, I am sick again this week, so with all my crying I now can’t breathe at all, I’m a mess. There is snot and tears and messy black mascara everywhere. And you know what? I don’t care. At this moment in time, all I want in the entire world is for my baby to be ok, to be awake and healthy and happy and well and looking at me with that smile that only he has.
We race from the house, driving faster and faster. Our lights are flashing, our baby is rigid, our voices are strained, inside we are both screaming and crazed. I am praying to God that this cannot be the end, please God, please, don’t do this to us, please, I won’t be able to understand it if you do this to us. His lips are not pink anymore, they are kind of blue, kind of a mottled white. His head lolls back on the crook of my arm. I think it is done and then it starts again.
We drive through every red light, but it still doesn’t feel fast enough. We arrive at the entrance to the hospital, I jump out with my baby in my arms. Body rigid. I run to the ER door, I run through the door, everyone is staring. I scream to the receptionist that we have called, that it’s now been more than half an hour. I scream for help.
We run through more doors, people are running towards me, telling me where to go, taking him from me and lying him on the bed. My body is aching. I feel as stiff and as rigid as he looks. Nurses and doctors are holding him down, trying to get a needle in, struggling, he is screaming now, his eyes are opening. He sees nothing. His eyes are wide. They look nowhere. I am pacing and crying and pacing. I feel like a caged animal ready to attack. The needle is not going in. He is thrashing. I think there are now four or five people kneeling around him on the bed trying to help.
Hubby comes in at some point with our little girl. Dear God, she is only four and she is seeing all of this!
The panic in me is growing and growing. My fears of brain damage and death are now right before my very eyes. Hubby’s eyes are red and staring. He is in a trance. We are all dying a little inside. Our souls are dying. We are useless and helpless, he sitting there, me pacing, our dear daughter asking what is happening to her “boetie”.
Once the drip is in him he almost instantly lies still, as if he has passed.
His mouth is lying open, everything is limp. It is in such a contrast to the past hour.
The wild in him has been tamed.
We are waiting, just waiting to see what will happen next…
About the Author
Our baby son suffers from Febrile Seizures.
I love writing, always have and just wish I had more time for it. At the same time it is like my therapy, and I want to do good with it.
At some point during the course of Wednesday this week I realized that I needed to help others with what we are going through. We feel so terribly alone going through this ourselves, no one truly understands the life we are living.
I believe that together, parents must work through these types of things and lift each other up.
Until next time ~ Cathy xxx