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

5Aug/120

The Men Alone

Now it’s Sunday again and we’re relaxing like only the Verling men can. Breakfast has been eaten; the two of us are sated, and now happily cuddled up under a blanket whilst the Irish “summer” does its best impression of mid-winter. Lisa and Ruby are away, Ruby for the last two weeks, Lisa since early yesterday morning, down to collect her darling daughter fromWaterford. Ruby was fourteen yesterday and even though she’s grown into a beautiful, wonderful young woman she’ll always be my baby girl. She can cut me in two with one of her retorts and usually she’s not far off being right too. That’s the trouble with children, they grow up quickly and yet know you so well that they can wound you in a second but lift you higher than the moon in the next. This morning I spoke with my son Thomas, he turned 18 in June, trying to arrange his trip over to see us all. It was lovely seeing Freddie and Thomas talk on the phone, Fred loves his brother and wants him to come for a sleepover. When Thomas comes over Freddie always introduces him as ‘my brother Thomas’ to anyone he meets, even Ruby….

This morning the two of us got up about 7.20am, slightly later than usual but we had been chatting in bed about life and stuff. Downstairs I gave Fred his medicines and went off to the kitchen while he settled himself on the couch. From the kitchen I heard that horrible screech that can only mean one thing…I ran back in to find him splayed out but awake. It looked like he’d had a small frontal lobe seizure, probably lasted the five seconds it took me to run from the kitchen to the front room. The remote control was on the other side of the room, probably had been thrown there in reaction to the seizure hitting. Fred looked at me, confused but conscious, the medicine must have curtailed the seizure but because it was late in being taken the levels weren’t high enough to prevent it occurring. In a minute or so, he was back to normal and we switched on the TV to try settle in for the next while.

Naturally enough Fred chose Jaws to watch, a nice relaxing movie….about twenty minutes later he was telling me what was going to happen next when he slipped into another seizure. Again 5 seconds and it was over, he was smiling afterwards, feelings of elation are a common symptom of Frontal Lobe Epilepsy. That smile he gives is so innocent, as if he’s coming out of unconsciousness and happy to see me waiting for him. It was all over in about a minute and soon he was back with Jaws, just about when Chief Brody gets his face slapped.  Were we in for a day of these, as happened almost three months ago to the day or would recent improvements continue and the medicine really do its job?

The next hour was counted down, I reckoned that would give the morning dose time to get into his system and also show if things were under control. By nine there hadn’t been another episode and Jaws was leading Quint et al a merry dance round the waters of Nantucket. A good sign was that Fred put in a request for breakfast, I quote…”A big one and don’t tell Mummy”. How could I resist that? So while I made “a big one” I kept one ear open for tell tale noises from the front room and also stuck my head through the door every minute or so. Fred paused the movie at the best bits at the end and waited for me to settle in with him before starting it again.

Freddie is very meticulous with his breakfast eating. Each soldier of toast is lined with a small slice of rasher, omelette and this morning, baked beans. This is demolished and he moves onto preparing the next delicious slice. Once I’d settled in beside him the movie was rolling again and I had to laugh at Quint being eaten by the shark in time to Freddie eating his filled soldier of toast…”watch this Daddy… ugh, the blood” he said between bites….

On Friday, Lisa finally finished weaning him off the Frisium. It’s taken nearly three months but at least it went smoothly enough, maybe today’s little seizures are a last kick from the withdrawal, who knows with these medications. Freddie started on the Vimpat on Wednesday, another drug but this one is more of a facilitator than an anti-epileptic. The idea is that it will help the Tegretol work better, at the moment it’s stopping the seizures spreading and clustering, giving Fred some quality of life, reducing our hospital visits. Now the next step is to get the Tegretol to prevent the seizures occurring in the first place or at least reduce their incidence. It will take about two months to get to a therapeutic level; he’s only on half a tablet a day at the moment, if you rush the intake, horrible side effects can happen. So, another waiting game has begun…

The waiting game for the PET scan continues. The news from Corkis that the machine still isn’t calibrated for children and now that the holiday season is upon us I can’t see that happening before September. The good news back in March was that all this would be done by early June, we’ve got another appointment with the neurologist on the 18th of this month and still no scan. The frustration is overwhelming but as Aiden said to me yesterday, it’s better to get the best scan done than an inaccurate one. Very true of course, in fact I hadn’t thought of it that way, being in the thick of things you don’t always see the wood from the trees, but all this fecking waiting….

The week gone by was the usual one for Freddie, he had two seizure days, Monday and Friday, maybe this has become unionised, only on working days, twice a week. The sooner the shop steward calls an all out strike the better. Both times it happened while I was at work in Dingle. On Monday he had two and was awake but very dopey by the time I got home. It’s horrible, really horrible to have him out of it like that for the evening but that’s what Fred is living with at the moment. Tuesday morning he felt very sleepy and after breakfast he slept until early afternoon. Boy was it difficult getting him off to sleep that night!

The rest of the week went fine until he had another one on Friday evening. He’d been a little dopey on waking that morning so I thought one might be on its way and it was no surprise to get that call from Lisa. On my way back toTraleeI did some shopping for the long weekend, hoping to come home to a peaceful house. About 6.30 I came through the door to find the little man sitting up eating his dinner, as right as rain, only the one this time. Such a relief…no matter how many times we go through this it is always a worry, especially when you’re not at home, your imagination running away with you!

On Tuesday night when he was in no mood for sleeping, the two of us were sitting up in bed, me hanging, Fred, looking like he was eventually about to fall asleep asked…

“Dad, when will it be morning?”

“When you go to sleep and then wake up,” I said, with an element of force in my voice, hoping he’d get the hint.

“So, first the dreams and then the morning?” he asked, looking up at me with his beautiful brown eyes…

Now, isn’t that the best description of a good nights sleep ever?

 

 

 

 

 

 

 

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Posted by John Verling

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