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

18Nov/120

Just a Normal Week

It’s Sunday evening and the family are settled indoors, away from the winter storm blowing outside. Poor Muttley the dog is in his kennel but he has been fed and gave me a look earlier that said ‘don’t expect to be going anywhere today.’ Ruby, having discovered EBay, is fighting with her mother over make-up brushes she wants to buy. Whatever happened to that little bundle we carried home from the hospital more than fourteen years ago? Well I suppose she has grown up to be the wonderful girl who knows her own mind and I wouldn’t change her for the world…

Last week finished and a new one began with a not totally, unexpected upheaval. All day Sunday Fred was a bundle of shakes and we were waiting for something to happen. No sooner had he settled down to sleep than a seizure broke through. A horrible one, with the ferocity of a force that couldn’t wait any longer to burst through. As soon as the first one finished, it came back to kick him a second time, just in case it hadn’t knocked him enough first time round. We settled him and gave him the shot of diazepam that we hoped would get him through the night. The strength and anger of the seizure upset us, it was like going back to last winter when all this began. About eleven o’clock he seemed settled and we took him up to bed. Lisa did the night watch duty as I had an early start taking Ruby to Dingle. About 6.50am, I came down to Fred in the middle of another bad one. Lisa was holding him, getting the diazepam ready for another dose.

“It’s the fucking Phenytoin,” she said, referring to the new drug we were trying. It obviously wasn’t working, if anything it was making things worse. “I’m taking him off it today.”

Couldn’t argue with that one. We skipped the morning dose and gave him an extra tablet of the Tegretol, to get him over the hump.

The list of medicines that have failed Freddie is growing by the week.

After a brief chat with the team at CUH, it was agreed that dropping the Phenytoin was a good move and Fred’s dose of Tegretol is to be increased gradually. The change in him was remarkable. Back to the man of a couple of weeks back, full of chat, drawing, painting, doing jigsaws and practicing his schoolwork. It was as if the cloud covering the little man’s brain had been removed. The ‘fucking Phenytoin’ was doing no good whatsoever.

During the week I had a chat with our pharmacist about what had happened. While he didn’t think that it couldn’t have caused the level of Tegretol to drop so quickly, John did think that the Phenytoin might have inhibited it from working properly. Just Fred’s luck, a rare enough side effect had to be the one he’d have, not just the drowsiness but the interfering with the one drug that was working.

As soon as he got over the Sunday night/ Monday morning kicking Freddie got on with his week as if nothing happened. His powers of recovery are amazing and it’s a credit to the little man how quickly he puts everything behind him.

Last night the shakes set in again, just the usual sign that something was brewing. He’d had a few days shake free so when they became obvious again it was a sign that a seizure probably wasn’t too far away. About 7 O’clock he had a sleep in Lisa’s arms, after a fine dinner of a chop, carrot, sweet corn and rice. He slept for a couple of hours waking about nine o’clock, a bit better in himself, but the shakes were still there. About 11.30 the two of us went up to bed, after his snooze he was in no desire for sleeping. Cuddled up to me in the bed he said he was feeling a bit dizzy and I held him close to me, knowing that a seizure was on its way must be so scary for the little man.

After reading my book for an hour or so, I put it down but stayed sitting up. Fred still hadn’t gone to sleep, not fully by any means. I dozed and about 1.45 the seizure broke through, not a bad one but a minute long piece of agony to watch nonetheless. Lisa came down and gave him a shot of Diazepam to settle him properly. Back in the spare room again, I couldn’t sleep and popped down a few times to check on the two. They were doing fine without me. Eventually I fell asleep only to wake again about 7am, out of habit more than anything else. The two downstairs were still sending up zeds and I had myself a lie in till almost 10 o’clock. Fred got through the night and the early morning danger points without anything happening.

What a relief...

The family have now had a lazy Sunday. The only time one of us went out was when I went for a tin of beans at breakfast time. Lisa just shouted, “How can that be fucking true?” at the TV because of the results of the X-Factor.

Ah lazy Sundays in winter, you just can’t beat them….

 

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Posted by John Verling

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