When our first babies reached a year old, my friends and I cheerily raised a drink or two to celebrate having kept alive our firstborns for an entire year. Giving birth to, feeding and growing a whole actual human seemed like such a momentous achievement and yet we were able to nonchalantly joke about keeping our offspring alive because we had never yet faced a situation where their lives were ever remotely at risk. We just had to, you know, feed them and love them and stuff.
Even with Orange, we’ve been extremely lucky that he was born healthy and in the first 18 months of his life, faced no immediately threatening health issues, despite his developmental complexities. Of course he threw us a major curveball in the autumn of 2012, when we were just days away from relocating to Cornwall, in that he developed a seizure disorder and gave us the fright of our lives by having six seizures in 24 hours that each caused him to stop breathing.
Our experiences of the NHS have shown us that there isn’t much that can fluster a High Dependency Unit paediatric nurse, but there were several moments during that hospital stay when we were not the only people in the room that had our hearts in our mouths wondering if our boy would ever take another breath.
But he did.
Mr K wrote a guest post for the blog at the time that said everything I was too numb to articulate.
It was the greatest fear I have ever felt and I never wanted to step inside that house or that hospital again. Of course we didn’t have to, for we soon left it all behind to start a new life that represented hope, serenity and a happier future. An escape.
Several days and one extremely nervous journey down the A303 later, we had left well behind us the memories of our boy, blue and lifeless on the kitchen table, the fluorescent hustle of paramedics, the sterility and freneticism of the resus unit, and the deep, deep fear of losing our boy to a type of epileptic seizure which not one specialist could accurately identify.
With a little trepidation, and a lot of hope, we settled into our new lives knowing that it was likely Orange would face these seizures again, but with every day, week and month that ticked by, we slipped further and further from a paralysing state of high alert to a more relaxed way of being.
We worried a little less about who we left Orange with. We allowed ourselves to be excited about him starting nursery. Even letting the telly babysit him while I went to the loo or made a cup of tea became a possibility again. We slept a little more, instead of lying with one ear attached to the baby monitor, tuned in to every rise and fall of his breathing.
With only a few absence seizures here and there, and one small seizure last summer with a slightly juddery but well oxygenated and still breathing boy, his epilepsy was well controlled. We felt confident we knew what we were doing, and I didn’t hold my breath every time Mr K travelled for work, wondering if now would be the time Orange would throw us a big one.
But last week, he did.
With Mr K in Dallas, I was on bedtime duty for the fourth night in a row, and in major need of a gin and tonic. Orange, home early from nursery with a fever, was in bed. Just Beep to contend with. At last, she was settled. And then a little voice piped up.
“Mummy, Orange’s breathing is giving me nightmares. He sounds like a monster.”
I listened at the door.
“He’s just snoring Beep, get back into bed and I’ll go and tuck him in.”
As I opened the door and unlatched his bed, the ‘monster breathing’ stopped. I raised the blanket to tuck him in. Pulling it over his little body I watched for the rise and fall of his chest before closing his bed and saying goodnight. Only that rise never came.
Lifting him from his bed, his stillness crushing me cold, I knew we were here now. This was it. It was a bad one. My head torn between fear for my boy’s life and sadness for my little girl that here she was again, watching her brother clinging on to life.
“He died, but he’s ok now…” Her three year old words echoed in my heart as I dialled 999 and held his airway open.
Desperately following the life support instructions of the emergency operator, I gave him rescue breaths, Beep watching his chest and his colour all the time.
“He’s breathing in mummy. He’s breathing in. But he’s grey mummy, he’s still grey. Orange, you’re going to be ok, the ambulance is coming. He’s breathing mummy, he’s breathing.”
Orange took tight, laboured breaths as the seizure constricted his chest. In, and out. In, but not out. A pause. In again, in again. And out. A pause too long. More rescue breaths.
As the ambulance arrived, my little six year old Beep took charge, running to open the door and directing the crew up to where we were. Bravely, she watched as Orange was intubated on the landing floor. Calmly, she cuddled a favourite toy and went without a tear or a fuss to sleep with our neighbours as I frantically grabbed medication, a hoodie, shorts and a phone charger and leapt into the ambulance with Orange, tubed and bagged and still in the grips of the longest seizure he had ever had.
His pyjamas cut, wires all over his body, oxygen mask over his little face, we raced through the dusky lanes to the whine of sirens and the flash of blue lights. Rescue medication given. But still no change in him. Holding on to the inside of the vehicle as we sped up and down through the windy Cornish countryside, I watched Orange, rigid and fighting for breath. And I lost hope. Gave in to fear.
Is this how it’s going to happen? With Mr K abroad and Beep with no family to comfort her? It’s been 30 minutes and he is still unconscious and struggling to breathe. We’re going to lose him, right here on the A38 in the back of an ambulance, aren’t we?
I wonder when to call Mr K. If we’re losing him now I don’t want to go through this alone. I text him.
“In an ambulance. Orange not breathing.”
A second dose of diazepam. I watch the screen as his oxygen sats hover around 50.
A Texas number flashes up on my phone. But I don’t know what to say. Get home? But how? Your son might not make it? But maybe he will? And then I’ve created fear where none belonged.
But then the sats were creeping up. Up and up, 60, 65, 72, 88. The heavy silence in the ambulance was broken by the paramedics.
“He’s going to be alright, he’s doing alright now, he’s doing ok. He is, he really is. Go on, tell his dad he’s going to be ok!”
As we arrived at resus, a now distressed and angry Orange was wrapped in a blanket and carried gently into the hospital. Wired up to monitors, and soon falling into a post seizure unconsciousness, Orange let his exhausted little body rest and I completely fell apart in the arms of my mum who was waiting there for us, not knowing if he would arrive alive or dead.
We watched and waited for Orange to regain consciousness. We watched and waited for any sign of another seizure, expecting it to happen as it had in resus three years before. And again, and again on the ward.
But he surprised us. History did not repeat itself.
In fact, by midnight, riding up to the High Dependency ward he sat up on his trolley and had a good giggle about the fact he was naked in the hospital in the middle of the night.
We were looked after wonderfully on the ward. After a moment of black humour shared with friends about the prospect of a night upright in a hospital chair, a kind nurse brought me an incredible recliner and a pillow. Mum brought me an enormous bag of snacks and a duvet, and some of the essential items I’d forgone for shorts and a winter hoodie in my panic. And the next day, kind and wonderful friends brought in breakfast, coffee, books, toys and much needed hugs.
Our wonderful village and lovely friends, and mum, supported us and held us up when we needed it most.
I thank you all so much everyone who looked out for us, looked after Beep, visited, messaged and called Mr K to make sure he was ok too. I hope we can return these kindnesses in the future.
So now we are home, the adrenaline has subsided, and I am trying not to lose my head. We can’t run away from the fear this time. I can’t leave 250 miles behind me the landing where I kept my son alive while waiting for an ambulance. And I know it probably won’t be the last time I have to do so.
This time we have to face it.
Learn to live with it.
And not be paralysed with the fear of what may come. We must fill our heads and hearts with new dreams and new hopes instead.