The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

Always waiting for the next big seizure

I knew before the monitor started beeping that he was going to stop breathing. I knew it somewhere down in the pit of my stomach, right in my very soul. We had him lying on the bed, airway open, the bag and mask to hand, oxygen on, 15l per minute as the colour drained from his lips, his fingertips, his cheeks. The sats monitor began alarming then, finally recognising Hugh's plummeting oxygen levels, only seconds later perhaps, but we felt light years ahead. We brought his colour back quickly, pumping the oxygen steadily into his lungs. One... Two ... Three. His cheeks pinken again, though his body remains limp and lifeless. His chest artificially rising and falling with each pump of the bag. His eyes staring, unseeing. One minute and thirty seconds later, he breathes again. Not a bad one this time, but we know there's more coming. 

We lie him in between us in the bed. I'm reminded of when he was little and this was how every night was spent. Holding a tiny hand each, the slightest movement alerting us to any pauses in his breathing. Back in the days when we had no monitors to warn us. Back in the days when he'd stop breathing so frequently. Back in the bad old days. 

We doze, expectant... Waiting for the next one to hit. It will come. It always does. An hour later and it starts again. The sats monitor screeches that his oxygen levels are 28%, the blue tone of his face concurs. I worry that the alarms will wake his big brother. Rhythmically I force the air back into his lungs, his airway now so floppy we need to support it to keep it  open. It takes longer this time. A minute passes, two, three ... We work as a team, knowing how this works, having done it so many times before. One takes the bag, the other administers the medicine, aiming for half in each cheek. He splutters, vomits and breathes again. Four minutes in total. The electrical impulses in his brain, misfiring, preventing him from breathing for four whole minutes.

Not a bad one. 
We've had worse. 
The time he didn't breathe for 16 minutes. 
The time the medicine didn't work and the seizure wouldn't stop. 
The time the ambulance had to pull over on the way to the hospital. 
The time I had to lie him on the ground in the car park and give mouth to mouth.  
The time he convulsed so badly I couldn't hold him still enough to get any air in, and I watched, helpless as he turned a darker and darker shade of blue. 
That was the worst.

Last night wasn't so bad. 

I resuscitated him twice. For 6.5 minutes in total he didn't take a breath. 
But that wasn't the worst time.

I live in fear, that the next one will be the worst time. 
Or the last time. 

Today the front door remains unlocked, should the paramedics need to come in.
Today I have a hospital bag packed and ready by the front door.
Today my chest is tight and I am breathing too fast.
Watching.
Waiting.
For the next one.

"It's all over now mum, what are you stressing about?"

Comments

  1. Oh Emma what a harrowing read.
    We know all about being on edge for seizures but nothing like this. Hope all settles down and you find a treatment that will take away the constant dread xx

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    1. Thank you, we had an eventful weekend following that, but he seems to be back to himself again now. Until the next time. We've tried lots of drugs and the ketogenic diet so far. Our next step is to look at VNS so fingers crossed. Xxx

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  2. So difficult to even read this, let alone live it :( and yet I'm guessing most people you pass in the street wouldn't have a clue about how tense and stressful your life is. Wish there was some way to help - helping as many people as possible read this is the only thing I can think of, which seems pretty pathetic really xx

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    1. Thanks Steph. That's very true - I think if you see Hugh and his cute little smile, you would never imagine what he can do and how he tests us to the limit with his seizures. Blogging about it has helped though and more people do realise now the challenges he/we face, so yes sharing it does help - thank you. Prior to having Hugh, I never realised what a challenge epilepsy could be.

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  3. Heartbreaking and desperate to read this, and yet you have to live it every day xx

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