Tuesday 19 July 2011

Really bad status seizure. He's fine now. I'm not.

It's interesting how it takes little boy much less time to get over a catastrophic fit, than it does me. He sleeps for hours, eats, sleeps some more and then he's fine. I spend days, weeks stewing over what happened. Waking up in the middle of the night having panic attacks.

Last Thursday at 8.30am I woke up with a start and realised we were going to be late for school. He was in bed, having a seizure which had clearly been going on for some time. I gave the emergency meds while husband called the ambulance. It was obvious this was going to be a bad one.

The crews arrived in good time and gave more meds but it made no difference so off we went to A&E. In the past he's always stopped before we got to hospital but this time it was much more serious. Wired up to the heart monitors, oxygen mask on and this time tube down his nose as well to stop him choking on any vomit. Cannula in each hand - in goes the intravenous diazepam. This is the first time they've had to do that. It doesn't work. They do it again. He's still fitting.

Husband and daughter come to see him but I send them away. With a big puddle of blood on the floor this is not a scene I want her to see. It's now been at least an hour since I found him and the fit is still going on, so they put him on a Phenyton infusion (anti-epilepsy meds). Its a giant tube, perhaps 6 inches long and one inch thick and it takes a good 15 minutes to go in.

Meanwhile the anesthetists have been called down. There are now 6 doctors and 4 nurses working on my child. I stand at the end of the bay in a state of shock, can't quite believe what I am seeing. The next step is to sedate him, intubate and take him up to intensive care.

Just as they're getting ready to do it, I see his leg move, "Look voluntary movement," I shout, "He's stopping." All 10 people take a step back from their work and watch him. Silence.  He moves his arm, then leg again, and then he groans. It's over.

In the end the fit had lasted 75 minutes - at least. The doctors disappear one by one, until only the paediatric registrar is left. We wait for a short while and then take him up to the children's ward to recover.

6 hours later he wakes up, drinks some juice and gets out of bed. A bit bumbly on his feet but he's on the mend and by the next day he's fine.

5 days later and I'm still having nightmares, flashbacks and insomnia. I know it could have been worse. I know he's fine and I want to focus on that. But I'm terrified it will happen again, I'm terrified next time he'll be (more) brain damaged, and I'm terrified that one day this will happen and he'll die.

It's difficult to get over days like this.

Friday 8 July 2011

How it all began

I sit indoors to get some relief from the scorching afternoon heat as I wait for the little man to return home from his special school on the bus. I never imagined life would be like this when he was yanked out of me 6 years ago. I was just glad that labour was over and to all eyes he looked like a healthy little boy. He fed, he slept, he cried but not too much. We were lucky.

But then everything changed early in October when he was just 8 months old. We were at a public swimming pool, all four of us. I had the toddler, my husband had the baby. There was something in the way he called my name that told me right away that there was a problem. He sounded scared. When I looked at this little boy it wasn't immediately obvious what was going on. He was still looking at me and smiling, but both his legs were jerking in a rhythmic movement. I called for a first-aider.

"We think you should take him to the hospital," they suggested rather unsure of themselves. No mention of why or whether it might be urgent and he still looked okay, apart from the leg jerking. We started to dress ourselves but he quickly went downhill, and by the time the ambulance arrived he was blue, vomiting, limp and lifeless in my arms.

When we got to A&E there were 3 doctors and 3 nurses waiting for us. They wired him up to every kind of machine I could see and put a needle in his arm. Nothing like this had ever happened to me before - my legs went from underneath me. Someone sat me down and the questions began.

It was an afrebrile seizure, which means he didn't have a temperature at the time, and may never happen again. But they would do a brain scan and an EEG just to see.

Since then we've had countless trips to hospital and a variety of different medications. It feels like they've conducted more tests than on the atom bomb, but still we don't know why he has fits. We also don't know why he stopped learning to talk at 18 months and now, aged 6 is developmentally 3 years behind his peers.

Be under no illusions. My child is not the most disabled in his school, not even his class. But I don't think it's the level of the disability that matter so much as how it affects the family. My son looks 'normal' so when he kicks-off in public people tend to judge me as a parent. He is a danger to himself and others and requires constant supervision. His health is better than it was, but is still a worry.  After much fight and stress he now attends a great school who do a lot to help him. But all this comes at a cost and having a disabled child (whatever their level of need) is a huge strain.

So I'm hoping to spread a little insight and honesty about what it means and if this strikes a chord with you, then feel free to get in touch.