Daisy And Me People I meet when on my walks with Daisy

17Mar/130

Ten Rounds With The Incredible Hulk

It’s St Patrick’s Day and the two men are home alone. Freddie and I are cuddled up under a duvet, he at one end of the couch, me at the other. I’m trying to write this on Ruby’s little 10”netbook, as Fred is happily watching YouTube videos on my laptop. Before I could use this netbook, I had to deep clean it of make-up and food droppings. It’s amazing how a girl who puts such effort into her personal appearance can have such a manky computer.

We’re alone as the ladies have gone off to Dingle, for the Parade, and all its social extras. It’s not about seeing the parade, its more about who you will see at it. Phonecalls have been made and coffees arranged. It didn’t take them long but they both look stunning heading out the door; if there was a competition for most beautiful mother and daughter, Lisa and Ruby would have it in the bag before leaving the house. I wonder will they make it past the first roundabout…at least Hannah and Tara are with them, so the rows will be kept to the odd bark.

Hannah and Tara came for a sleepover last night. As always, it was great to have them around and Fred was in his element drawing pictures as presents and getting the girls to join in his games. For dinner they all cuddled up on the couch, Freddie in the middle of the girls, happy out telling stories and devouring his chicken wraps.

The little man is a bit doped again.

After a good ten days of a bright, alert and full of fun little boy, Fred got hit by a terrible cluster of seizures on Tuesday afternoon. We knew that something was on its way, ten days is a long time for Freddie to be seizure free. What we weren’t expecting was the ferocity of it all. After the joys of last week at Temple Street and the new regime of rolling with the punches, Tuesday really was a kick in the teeth.

I was home for lunch and Fred was at his homework. He was doing his tasks and I was watching. As always it came out of nowhere, he just slipped into a full seizure, the usual minute long horrible, horrible tonic-clonic one. Luckily, Lisa was sitting beside him and was able to hold the little man as he went through it. We put him on the couch, he was in a deep sleep and he cuddled up to Lisa, the safest place in the world for the little man. Lisa sent me back to work, we have to try get on as normal, not let the epilepsy rule our lives.

As I walked back the road I felt a little uneasy, worried but then I always worry. To keep my mind occupied I locked myself away in the news booth, practicing my voice projection.

At about 4pm I texted Lisa...

“He’s had four tonic-clonics,” read her text…

I couldn’t believe it; this was a ferocity we hadn’t experienced since August 2011. Lisa sounded very serious when I called; I packed up and hurried home.

At home, he had another one, not long after I got in. We gave in and gave him a shot of Diazepam in an attempt to stop the cluster. As it was nearly five, I headed off and collected Ruby.

Just as we got back, he had another one. That was it. Six is just too many, he was unconscious, this was status-epilecticus, a very dangerous situation. In a flash, Lisa was packed up and we were off to the hospital. As we drove over, the contrast with last week's high was all that was in my head, it couldn’t have been starker.

At the A&E I ran in to get a wheelchair... Fred was so zonked we couldn’t rouse him from the back of the car. Luckily, Peter, a nurse who’d been through this with us before, met me at the door. He knew from the look on my face that it wasn’t a social call. Pete got me a wheelchair and went off to ready a treatment room.

We rushed Freddie in and the team took over.

By the time I completed the paperwork in Admissions and got back to the A&E, Fred had another one. The Diazepam wasn’t working; epilepsy was definitely giving our man a good going over. He was so out of it that, when they put the line in for the Lorazepam, he didn’t flinch. Normally he’d wake and fight the needle to the last, making it even more difficult for the doctor to find a vein. Not this time though, the line was prepped and blood samples taken without so much as a peep from our boy. It was nearly time for his evening meds and we were anxious to get them in him before the Lorazepam was given, if it was to be needed. Lisa managed to rouse him enough to get the tablets in; he looked through me with eyes that had no focus, very upsetting for us.

I needed to move the car as it was parked in a no park zone outside the A&E. It’s a no park zone for a reason and I was conscious of blocking anyone else’s access to the emergency unit. So off I went and parked in the car park,  I took Fred’s bags up the Cashel Ward, there was no doubt he’d be spending the night there. Up on the ward I got the usual welcome from the nurses, they had his bed ready, as always next to their station so they could be at hand. We never can describe fully how assured they make Lisa and I feel.

Down in the treatment room they’d given Fred the shot of Lorazepam. A full adult dose, they know he can take it and it was necessary after he had his ninth seizure of the day. Now it was a matter of wait and see, he’d been stabilised and time for him to go up to the ward. Peter went with us and gave the team there a full run down of what had happened, before heading back to the A&E. Anyone who criticises frontline staff need only spend a couple of hours with the likes of Peter or our nurses on the Cashel ward to realise what a vital job they do and how they earn every last cent of their pay.

Lisa,  practical as always, sent me home to feed Ruby and get a list of things she’d forgotten in our rush over. I kissed and hugged our knocked out little man and did what I was told.

Ruby was well settled on her netbook, iPod and phone. All she needed was to be fed. After feeding her and packing up all that was needed, I headed back to the hospital. It was nearly 9.30pm, the whole afternoon and evening had gone in blur, I was sick to the stomach but had managed a bowl of pasta. On the ward, Lisa and I had cups of tea and toffees, anything to keep the strength up. Luckily the little warrior, the strongest, bravest man I know, was sleeping peacefully and seizure free. The Lorazepam was doing its job. An hour or so later I headed home to look after our daughter.

All Lisa and I could think of was what had gone wrong, why had this terrible cluster come back to attack our boy, the worst in nearly eighteen months. On my way home I reckoned it must have something to do with his Tegretol levels, if the level in his blood had dropped, then would he have had no protection against a cluster. Why it would drop was another question.

On Wednesday morning, I drove Rubes to school and was on the ward by about 9.30. Before heading to Dingle I’d rung Lisa, they had had a peaceful night and Freddie was still sleeping. When I arrived he was awake, trying to watch a DVD, but was so doped he didn’t know if he was coming or going. I’d brought some breakfast but he wasn’t even hungry, very unusual for him. The doctor and his team came and gave us the all clear to go home. Flap over, we were being sent home to recover; at least there we’d be comfortable and only five minutes away from the hospital, if needed.

On the way out I met Nurse Marie, she’s been on duty when we’ve gone through some terrible nights and it’s always great to see her. Thankfully for Freddie, and Marie, this cluster was all over and we could have a happy chat.

Funny how Freddie can bring you to the ends of the world with worry, then within hours it’s all behind him and he’s walking out as if nothing ever happened.

Of course he leaves his parents, Marie and the rest of the Cashel Ward feeling as if they’ve gone ten rounds with the Incredible Hulk.

Long may it be that way though, that’s what we’re here for…

 

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Posted by John Verling

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