The last few months, eighteen or so, have been particularly challenging as the number, type and severity of Toby’s seizures have increased significantly.
This is a typical day or so in our lives at the moment, days like this are almost weekly at the moment. It’s relentless.
***
Wednesday started a little after 3am as Toby was wide awake, after the last few days of seizures this isn’t a good sign so we’re up and downstairs to be with him double quick.
Fortunately there isn’t any seizure activity so Kim gets into bed and cuddles Toby while I head back to bed but I can’t sleep. Partly due to the adrenaline of a quick wake up and run downstairs and partly as I want to make sure nothing escalates.
After half an hour or so Kim settles Tobes and heads back to bed. I turn the monitor screen off and fire up a sleep story on the calm app to try and help me, well, calm down. It doesn’t work for what seems hours until I’m jolted from a deep sleep by the sound of Toby banging on the wall.
It’s 0520 so I get out of bed and head down to him, settling myself in his bed (think massive high sided, padded “cot”) we sing songs and cuddle till my alarm goes off. I manage to extract myself and get him some toys to play with after I lock him back in then I make tea and prep his drugs.
I’m knackered and the day has only just begun.
I get a shower while Kim enjoys a well deserved cuppa in bed and tries to rouse herself.
I’m heading to the office so get ready quickly then make breakfasts before heading out the door, leaving Kim to get Tobes up and ready for school.
The office is nearly 2hrs away, I’m knackered by the time I get there despite an easy drive.
Through the day Kim does all the things while being knackered, she goes to the allotment, collect drugs from the pharmacy, bakes a cake (crazy that girl but its delicious, almond with home grow rhubarb) and I have loads of meeting.
By mid afternoon I’m crashing, all the tea and chocolate digestives are helping but the slump is real. I’m yawning through a management meeting but that stops in an instant when I see school are calling me. Immediately my body responds with a flood of adrenaline.
My worst fears are confirmed, Toby has had a seizure at school and his teacher wants to know what actions to take in order to get him home and what doses of drugs to give.
After conveying my wishes I message Kim to let her know. “Bollocks” is the reply.
45mins later he’s home and I get a picture of him looking rough but having cuddles “he’s ok”….the next message is “spoke too soon”
I know he’s had another seizure so just pack my stuff and get in the car as quickly as possible, barely saying goodbye to colleagues.
Two seizures this close together is not good, trying to calm myself and get home as quick as possible I give Kim a call.
It’s worse than I expected, he’s in a cluster of myoclonic seizures, small convulsions while conscious. He’s upset and distressed as he doesn’t know what’s happening and doesn’t like it. He tries to stand but gets knocked off his feet.
This is the hardest type of seizure to deal with. On your own, it’s almost impossible but you have no choice.
Kim does the only thing she can, she manages to get him into his padded bed and lock him in so he is safe while she runs to the drugs cupboard.
Bringing the midazolam back into Toby’s room she then has to fight him to get into the bed without him falling out and hurting himself and then has to try and pin a distressed, convulsing 11yr old while she squirts little bits of midazolam inside his cheek and massages it in.
This is physically challenging and emotionally the hardest to deal with as Toby is desperate for help, for it to stop and is very active and strong but there’s nothing you can do to calm him.
Midazolam is a powerful drug but it does nothing to stop the seizure, in total Toby is in it for 40mins.
He calms down and settles in for a cuddle, which doesn’t last long before a fully convulsive seizure takes him. These are brutal, his body wracked with convulsions, twisting and contorting while making a visceral scream. He goes blue as his lungs are deprived of oxygen.
Once again Kim deals with this, his third of the day, keeping him safe, putting an oxygen mask on and comforting him until it’s over, leaving his body floppy and unconscious.
All this time I’m in the car, getting snippets of updates, totally powerless to help in any way. It’s a devastating feeling.
Once again Kim settles him and whilst he’s out cold blends some food and pushes it into his stomach through his tube.
When I finally get home he’s still out cold on the sofa.
Kim’s already eaten some leftovers, we both know that it isn’t over so are preparing for what comes next.
With the drugs he had at school and then the midazolam there’s only one left available to us, paraldehyde is harsh and powerful and on top of the other meds will depress his respiratory system so there’s a real risk of him not breathing, we’ll have to call and ambulance.
I dump my laptop and start packing a hospital bag, just in case. Phone chargers, tablets, ear phones, books and toys. Nappies, wipes and clothes. It’s a familiar routine.
We get him into bed, a real effort as he is a dead weight but this wakes him enough for him to help us get him changed and into his sleeping bag.
We read him all his favourite stories and can see his eyes starting to droop, lying him down we close up the bed and leave him to sleep.
We crash, in every sense of the word on the sofa but the relief is short lived.
The next seizure is as violent as the last, and just as horrific to witness.
We know there’s no chance of this being the last one so prep the paraldehyde.
It’s vile.
It stinks, once in the syringe you have to administer within ten minutes as it melts the tube.
It has to go up his bum.
Unconscious or not he hates it so fights us.
Once it’s in it does it’s job and knocks him out completely.
We hook him up to his seizure monitor and a SATs monitor with oxygen on low wafting into his face. He’s on the edge of what would be considered safe in hospital so we have to keep a close eye on him.
It’s not even 830pm yet we crawl into bed, physically, mentally and emotionally spent. There’s nothing left in the tank but we still have to prepare for a trip to hospital at some point.
I make sure my clothes are to hand, in the order I will put them on in a hurry, my car and house keys in one pocket, wallet in another. One less thing to think about I’m the dead of the night.
At 0230 all the alarms go off. It We both rush out of bed and get to him as quickly as possible.
Fortunately, he’s just woken up, it’s not a seizure.
He’s dazed and confused so we spend time settling him down before returning to bed.
Neither of us can sleep, the adrenaline from the rude awakening still coursing throughout our bodies.
Is this it?
Will there be more seizures?
Will we end up in hospital?
Did I order extra milk?
With all the thoughts spinning through my head I finally drift off for a couple of hours until Toby wakes up and a new day begins.
***
Today has been spent on the sofa, Tobys mind and body are exhausted from the seizures and the drugs, we’re empty, not a lot to give. I’m not working, Kim has to take the day off, unable to think straight let alone work.
Taking it in turns we sit with him on the sofa, mindlessly watching Peppa Pig while the other sleeps or catches up on a few emails, jobs etc
***
Dravet is relentless.
We used to have episodes like this less than once a month, for the last few months days like these now occur weekly, sometimes more than once a week.
We’ve changed drugs, had emergency calls with Great Ormond St but the reality is, this is life with Dravet.
There’s little anyone can do other than heavily sedate him and lose the smiley, happy boy we have most of the time.
Maybe in the future there will be other drugs but for now, it’s rest, tv, tea and biscuits as we all try to put ourselves back together to fight another day.