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

20Jan/140

Fred Gets the Bug

On Saturday afternoon Fred had Jaden over. The two just take over the front room, toys everywhere, laptops blaring, the TV on and plates of food. About 3 O’clock I had to move them on as there was football to be watched.  The boys weren’t happy but Lisa soon had them sorting Fred’s old toys in the attic and that kept them busy for a while. When bored with that they came down to the front room again and Fred asked if they could do some painting. Jaden seemed a bit surprised, maybe he saw painting as something you only do at school, but he turned out to be a beautiful artist. Painting kept the boys busy until dinner time and Jaden was very particular about taking care of his art, so as to take it home.

As I cooked dinner the boys settled down to Mr Bean. The two were cuddled up under a blanket, Fred as always looking for the comforts and nearly squashing our Jado into the corner of the couch. Soon though he started to feel sick and Lisa had to take over Jaden’s place. For the rest of the evening a bug took hold and our Fred spent a lot of time in the bathroom. At about 8 O’clock I took a well-fed Jaden home leaving Fred asleep in his mother’s arms. Our man was a bit quiet on the journey home and I wonder if the bug was catching him too.

Fred and I went to bed about 10pm. He had perked up a bit, probably the worst of the bug was over but he was a wreck of a man. The worry for Lisa and I was that he had vomited a lot within six hours of having his evening meds.  My understanding is in those six hours is when Fred absorbs the meds into his system. They have a half-life of six hours, giving them that time to be absorbed and to keep his levels constant until his next dose at 6am. If we keep giving his meds at regular intervals he can keep a constant therapeutic level in his system, thus keeping the epilepsy at bay. That’s the theory anyhow.

When Fred and I went to bed I read him a couple of stories but he was fast asleep by the time I’d finished the Smartest Giant in Town. I rolled him over onto his pillow and read for a while. At midnight I turned off the light, kissed him goodnight and hoped for the best. Sure enough not long after 1am a seizure struck. The usual tonic clonic that we had hoped was a few days away in the current cycle. Not to be and day thirteen is the mark this time round. Lisa took over guard, sending me back upstairs. She swiped his battery with the magnet, to give him the shot of extra electricity to the brain.

We’ve been doing so since Wednesday. Suzanne had advised that once five days had passed to begin a routine of daily swipes, to get into good practice and to get his system ready for the next step-up in a couple of weeks. Is it making any difference yet? It’s difficult to say and really only time will tell. Lisa has been doing it three or four times a day and at least there haven’t been any downsides yet. You have to feel his chest for the VNS and then run the strong magnet over it in a criss-cross pattern. The criss-cross is to make sure you find the VNS with the magnet. Whenever I feel for it I think of Fred’s reaction when he first discovered it himself...

“A battery?” he looked shocked, “I don’t want a battery in me!”

Followed by...

“That doctor put a battery in me when I was asleep?”

A lot for anyone to take in really; a live, pulsing battery connected to his brain, all done when he was knocked out.

It’s a wonder he can sleep in peace at all.

The battery in my old car failed me this week making Fred and I late for school. He was actually disappointed to be delayed which is a far better reaction than when we were hunting him out the door before Christmas. As we had to wait for Lisa to come back from dropping Ruby we were too late for Ms O’Se, his resource teacher. She comes around the house in the afternoons so he couldn’t escape her fully. The coming round the house bit he’s still not too fond of, can’t blame him really. What little boy wants school work to follow you home? When we got to school the whole class seemed delighted that Fred had made it. He wasn’t shy going in which is an improvement and  he just walked away from me, taking off his coat as he went. Jaden was beaming at their desk, seemingly delighted the have his friend to keep him company. Fred didn’t even say goodbye but then he had Denise and Rose fussing over him and Jaden to chat with, what did he need his old Dad for?

On Tuesday afternoon we went shopping. Lisa drew up a list and off went around Tralee. In the butchers we got the dinner and Fred got a lollipop....

“How did I just do?” Fred asked when we got back in the car, as he likes a bit of reassurance that he did what he should when we’re in the shops. At times he likes to know that he’s asked the right questions or hasn’t misbehaved. It just shows how removed from live he has been for the last few years.

At the fruit and veg shop he asked for green bananas. The ones on display weren’t green enough so the man, laughing, went off down the store room and came back with four of the greenest bananas I’ve ever seen.

“How’s that?” he asked.

“Thank you,” said Fred, breaking into one.

We finished off our list and headed for Ballyard.  At home Fred had a couple more bananas before dinner, just in case they ripened too quickly in the heat of the kitchen.

On Wednesday Fred was in the front room dressing for school and I was in the kitchen getting his lunch ready. All was quiet, then a load of banging and clattering came from inside. I didn’t want to rush in, I heard Fred moving about so I knew he was ok. So I strolled in about a minute later and asked if all was ok...

“Ah nothing my Dad,” Fred said as innocently as possible, trying to block my view of the sideboard by the window.

Behind him I could see the broken tall candlestick, a dinosaur and one of his planes. He must have been having a battle between the dinosaur and the plane, using the candlestick as a prop, when the ‘accident’ happened...

“Show me...” I said.

“Promise you won’t be angry?” Fred asked, looking up at me and still trying to block the scene of the crime.

“I won’t, just let me see if I can fix it.”

Fred stood away and the break was clean, nothing a bit of super glue wouldn’t fix. Fred saw I was ok with the damage so he moved on to his next worry...

“Promise you won’t tell Mummy,”

“We’ll see.”

The little man gulped, he was off to school so it was all in the lap of the gods as far as he was concerned. As it turns out the break actually wasn’t that clean and Lisa spotted the slightly twisted finished job as soon as she walked into the room. It also wasn’t the first time Fred had broken the candlestick so the shock wasn’t that bad. Lisa tried teasing Fred when he came home about the damage but I think he knew by the tone of her voice that all was forgiven.

Fred knows his Mummy.

It was his Mummy who cared for Fred yesterday, as she always does so well. About 7am Fred had woken looking for me so his parents swopped shifts. At 8.30 he had his sixth seizure of the cluster but we continued to swipe him as we wanted to avoid the Stesolid. The gap between seizures good and manageable. Not long after that seizure I got a call from Brian down in Cork...he had a spare ticket for the Munster match at Thomond Park and did I want to go...Lisa insisted I do so, she had things under control.  What a woman....

When I was having my breakfast Fred came downstairs, a bit shook but he wanted to get up. Far better to be up and about than spending the day in bed. I set off about 10.00am and he was fast asleep in his mother’s arms. He had a couple more during the morning but by 1 O’clock the cluster was over. Lisa had intervened with the Stesolid eventually. The swiping may have had some effect, widening the gap between seizures but it’s all too soon yet.

When I came back from my terrible time at the match, Fred was awake but soon he fell back asleep in my arms. By 10 o’clock the two of us were cuddled up in bed and all was ok with the world.

Now this morning he’s very dopey but up and about. He’ll sleep a bit, eat a bit but it will be tomorrow before all will be as before the bug got him.

Fred will get back to his routine and we’ll get back to normal.

Whatever that is.

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Posted by John Verling

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