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

1Dec/130

The Big Switch On

It’s the big switch-on time of year. Christmas lights are being turned on, with d-list celebrities flicking the switch in towns and cities everywhere. On Friday we had our big moment with someone a lot more important than any X-Factor winner. Suzanne in Temple Street switched on the VNS in our Fred’s chest, hopefully starting a new chapter in his fight against epilepsy. It has been a bit of an unfair fight up to now but Fred has fought it with dignity and valour, not giving his condition an inch. Now the sides have been evened somewhat or so we feel, but only time will tell.

All week Fred had been waiting to go to Dublin. Each day was counted down; the amount of school days left before Conor and Cathy’s ticked off. The disappointment that there were still two days left after Tuesday was massive...

“I can’t believe it,” he said, “this is taking forever.”

Fred managed to confuse Denise at school as he came home Wednesday afternoon without any homework to do. She’d been told that he was going to Dublin Thursday but Fred failed to add that it wasn’t till after school. Strange that one as for once he did understand fully that it wasn’t till after school that we were going. Lisa and I had drilled it into him. All part of getting a concept of time into Fred’s brain and he did get it, eventually...

“After today there’ll be two and then we’ll get to the second Thursday,” Fred said to me on Tuesday morning.

The two being the days left at school; the second Thursday being the one I’d told him about the previous Wednesday,  as the day when we’d be going to Dublin...

“Not tomorrow, but NEXT Thursday,” I’d said, which Freddie interpreted as the ‘second Thursday.’

Fred has a future in setting and solving cryptic crosswords.

So with bags packed and the car laden down with goodies, we set off for Dublin Thursday afternoon. The second Thursday. Ruby was coming with us, which was great and added to the excitement for Fred. The Temple Street team wanted to talk to Ruby alone, keep her up-to-date, all part of their holistic approach to treating Fred and family. As always there was the usual bickering as we tried to get out the door at a reasonable time but at least it was still daylight as we left Ballyard. Ruby was in the passenger seat, keeping me company, Fred and his Mummy in the back. With just the one pit-stop, for tea and snacks in Newcastle West it was an uneventful journey. Fred even had a snooze, cuddled up to Lisa reading her Kindle under the blanket.

At Inchicore Fred couldn’t wait to get out and knock on the door on his own. When Conor opened up he got a big “surprise” followed by a big cuddle. Unfortunately Cathy was away for the night but Con was the consummate host. We ate and drank, laughed and told stories, Ruby saying little but taking in all that was being revealed of her parent’s past. Fred watched TV and wandered in around us. Then about 9pm we got a surprise visit from the wonderful Ger Flood. Fred was delighted to get a present, another Godzilla, this one a soft toy version and Fred called it his “Godzilla Teddy.” Although it had been a few years since Fred had seen Ger he wasn’t shy of him and he quickly had him slid off from the herd, watching movies on his DVD.

By 11pm it was all over, Ger was gone and I was settling into a night on the couch. About 1am the door of the room was thrown open and Fred walked in, Godzilla Teddy under his arm.

“I’m sick of that Mummy,” he said as he climbed in over me and under the blanket, obviously they’d been fighting.

Within minutes Fred was asleep and I was pushed to the edge of the couch. He was like a hot water bottle squished up against me but I didn’t mind. There was a big day ahead of him and he needed the sleep.

Friday morning and we were at Temple Street by 9am. Ruby went off for her meeting and Suzanne took us off to another office. With all this space age technology I was half expecting a room like the flight deck of the SS Enterprise but it was just simple office with a PC in the corner. We sat down; Suzanne went through the procedure with us, explaining what will happen and what to expect. Fred was very good, sitting still and listening. He was happy to show off his surgery scars to Suzanne, who was suitably impressed by how much they’d healed.

Then came the moment. Suzanne plugged the wand into a box connected to the PC. It was like one of those portable scanners you’d see at airport security. She placed it over Fred’s chest, a light flashed, she pushed the button and the VNS was up and working. ‘Just like that’ as Tommy Copper would have said.

The VNS is set at the lowest level, 0.5amps, for the next two weeks and will be ramped up by 0.25 every two weeks or so till we reach 2.0. It couldn’t be started at any level higher, the brain would freak at such interference, and each increase will be monitored closely against Fred’s seizure activity. As Suzanne explained there is a spectrum of outcomes from complete seizure free to not working at all.

“I hope to fuck that Fred is nowhere near the lower level,” I said to myself, no doubt Lisa was thinking something similar.

Suzanne explained how every five minutes the VNS would send out a signal, lasting for thirty seconds. For the first few days Fred would get an itching in his throat as he got used to the process. Exactly on cue Fred coughed, it was five minutes since the switch-on. Of course with Fred it was no small cough but a gut wrenching throat clearance, doubled up as if he’d just got one in the Solar Plexus from Mike Tyson. Five minutes later the same again. This was going to be fun.

After breakfast we set off into town. Lisa and Ruby were going to ‘look around the shops’ for few minutes. So Fred and I dropped them on Parnell Street so they could head off to the Jervis Centre. Now I knew this few minutes could last hours and noted that it was just gone 10.50am as they jumped out into the busy Dublin street...

“I’ll text you when we’re ready,” were the famous last words Lisa spoke to me as they disappeared in the crowds.

“Where are the girls going?” Fred asked.

“Who knows,” was all I could answer.

Conor has been teasing me about being a city slicker, with my knowledge gained of Dublin’s streets in the months since we began in Temple Street. In truth I wasn’t nervous about driving in the city anymore; so I decided that Fred and I could go exploring, drive around and see the sights.

“Where are we going?” Freddie asked.

“We’ll drive around, see the city, see the Christmas decorations, see what’s happening,” I replied.

And that was what we did. Fred sat up next to me, under a blanket dragged over the back seat. He oohed and awed at the Christmas scenes in the shops but in reality I think he just loved looking at the city, just as I did. We drove up into the city centre, around by the Powerscourt Centre, out towards Christchurch back in and around by Trinity, down the quays, over the Millennium Bridge and out to the Financial centre. We passed places like the Bord Gais Theatre, the National Conference Centre. The O2 and then back to O’Connell Bridge again. By now Fred’s regular cough was getting stronger and he was beginning to talk like Marlon Brando in The Godfather.

At one stage we were driving down some side streets, out by Dublin Port, enjoying the silence when his raspy “Dad?” scared the life out of me. The man needed water. Now where was I going to find a convenience store that we could easily stop outside? After a couple of minutes we came across one with a disabled parking spot; out came the badge and in we went. Fred gulped the water down; the poor must have really needed the relief.

The text came at 12.41pm,’at the Spire.’ Fred and I were parked in a corner of Stephen’s Green, watching some men digging up the street. The few minutes which had become two hours had gone quickly and the two of us really enjoyed our trip around the capital.

Going to bed that night Fred was still coughing, still doubling up in a dry retch. He put the Godzilla Teddy on the table to watch over us and slept like a babe. It had been a tough few days.

Yesterday, Saturday, he woke up saying the cough was gone and it was a fairly cough free day, just the few Marlon Brando moments and by evening he was as right as rain.

So far so good.

Let’s hope the VNS is giving epilepsy an offer it can’t refuse.

 

 

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Posted by John Verling

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