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

16Apr/130

Lisa in Control

It’s a Tuesday morning in Tralee. Fred and I are sitting up watching Mr Bean, the cartoon version, which annoys me a lot more than the TV original, which was bad enough. Usually I publish this piece on a Sunday evening but this week I’m a couple of days late, nothing but tiredness prevented me from writing earlier, that and the fact I was in Dublin for the weekend.

 

Dublinnearly didn’t happen. After sixteen days of seizure free bliss, epilepsy came back with a vengeance on Friday morning. During the sixteen days you always know it’s just around the corner but you hope against that it will stay away from your little boy forever. No such luck for our Fred.  About 4.30 am on Friday I was woken by Freddie having one of those 5-second frontal lobe episodes. At least that’s what I thought it was, it all happened so quickly I couldn’t tell for sure. For the next couple of hours I watched him, dozed and watched him again. He seemed fine, was even talking in his sleep and making the usual noises an active sleeper makes. Then about 6.30am, a big seizure struck. He was lying so peacefully in the bed, head on his pillow, the way any kid would sleep. The seizure lasted about 90 seconds or so, seemed like forever when I was holding him, it had been so long I’d almost forgotten how horrible these things are. Afterwards, all is changed, now he’s unconscious, making horrible noises as his body readjusts itself and he becomes a patient.

 

Immediately I called Lisa and she came down to take charge. We tired getting his medicines into him but his jaw was shut tight. There are a few aftershocks when he shivers a lot, shakes and makes a lot of snorting noises. Lisa was in the bed with him by now, as I had to get up and take Ruby to school. Not long later he had another seizure. Another big one. This wasn’t looking good. We settled him, tried again to get the morning medicine into him but no luck. Before I went down to make breakfast we managed to get his jaws open and the medicines into him. The poor little man was looking at us through the eyes of a zombie, not recognising us or knowing what was going around him. This state is very upsetting, no matter how many times we witness it we’ll never get used to it.

 

Before I left for Dingle he had another seizure. Not good at all, in previous times we would on the way to A&E after a third. Lisa gave him a Stesolid, the last thing we wanted was another hospital visit. This seemed to settle him and I set off with Ruby someway confident that all was under control.

 

By the time I returned he was doing ok. The seizures were now presenting as the five-second frontal lobes but he was still in a deep sleep. Lisa sent me off to work; there was no way I was heading to Dublin on Friday, for all I knew hospital could still be the weekend’s destination.

 

When I got back for lunch the two were still in bed. He’d had another big seizure and was still having the small ones. This was a sort of state of control. As long as the big ones stayed away or were only occurring every hour or so we were getting somewhere. Freddie was also coming around slightly, not much but you could tell he was aware of his surroundings. At one stage I kissed him and said “I love you” and he answered back “I love…” before falling back to sleep.

 

All day Lisa stayed with him. Sitting up in bed, Fred propped up on cushions between her legs, sleeping and seizing. The way she takes over is wonderful, the devotion to her boy is beautiful to witness. The two may fight like cats and dogs at times but when he is in seizure activity, do not step in Lisa’s a way. She nursed Fred through the day, I took over from time to time or brought cups of tea but it was Lisa who was there for him at all times.

 

No words can truly describe how she nurses us all through these times.

 

Throughout the afternoon Freddie slept and seized. Mostly little ones and he had what proved to be his last big one about 4pm. In all he had seven big seizures on Friday and countless little frontal lobe ones. From 4pm onwards, he slept a peaceful sleep and returned to the sleeping little boy we know and love. In that period you are beside yourself with worry, not daring to hope that it’s over or even hope that it’s in decline. You never know when epilepsy is going to hit again. You try compare it with previous times but you could name a dozen similar times with a dozen different outcomes. One example that I always use to temper my hopes, is when he had a bad day and the seizures stopped about 6pm only to return with a lot more about 2am the following morning.

 

About 7pm Friday evening I went up to see how things were. Fred was sitting up in bed, dopey head on him but awake at least. Twelve hours on and he seemed to be pulling out of it.

 

“Hi Fred,” I said, delighted to see him awake.

 

“Dad?”

 

“Ya?”

 

“Where’s my breakfast”

 

What a man, he gets a kicking that would knock an army but wakes up with his priorities in the right place.

 

The two came down for ‘breakfast’ and we spent a peaceful evening watching TV.

 

About 10.30pm we went to bed, I was now going toDublinat 5am, all going to plan. Fred cuddled into me as I read him some stories and the two of us rolled unto our pillows looking for sleep not long afterwards.

 

When Lisa came to take over about 4.30am, Fred was awake. If he’d been awake all night, I’m not sure. At one stage he did wake me to stop snoring…

 

In Dublin Conor and Cathy looked after me, as only they can. It was late Sunday evening by the time I got home, about 9.30pm but I couldn’t wait to see my man as it felt like days since I’d seen him.

 

Unfortunately, he was asleep. Friday had taken a lot out of him and it does take a few days of sleep for him to recover fully.

 

Now we’re getting ready for another trip to Dublin. Fred has an appointment in Temple  Street tomorrow morning, part of the psychological assessment process he has to go through. We’ll be imposing on Conor and Cathy again; the two are quickly becoming part of Fred’s story.

 

Fred for one can’t wait to get up to Inchicore, he woke this morning full of excitement about going to see the two.

 

Somehow I don’t think he’ll be so excited about going to Temple Street in the morning though…

 

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Posted by John Verling

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