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

17Nov/130

Beaumont Days

The week began as all our weeks do, worrying about Fred. He was tired and out of it on Monday morning, so much so that we kept him home from school. When I took Ruby off to school, Fred and Lisa were cuddled up. Ever since that last cluster of seizures, which didn’t develop into the usual full-blown day of activity, Fred just wasn’t himself. For some reason he needs a good day of seizures to clear the brain fully. We don’t know why but it has proven to be the case.  The usual outcome of a quiet day is that another cluster of seizures isn’t too far away and that he is never quite ok in between.

When I came back from dropping Ruby, Fred was up, dressed and sorting through his toys. He seemed fine so we decided to try school. Fred is now resigned to going to school so he didn’t put up much of a fight. Before he knew it in was in uniform and out the door. At about noon I went over to send Lisa home and took over the last hour of guard duty. At 12.30pm Fred came out for break but went back in soon afterwards. I assumed that he just wasn’t in the mood and waited for them to come out again at 1pm. This he did but Denise said that he wasn’t feeling great and so they’d skipped on staying out for break time. Nothing unusual in that and I was happy that Denise made the right call. Back in the car Fred said he had the confusion, really badly and wanted to get home.

Back home he cuddled into his Mum and slept it off. Sometimes Lisa and I are wondering if Fred knows the score by now, that if he has the confusion he gets the day off from homework. But we can’t be too sure and the increase in confusion has only happened since that easy seizure day. Monday  night he had it again and cuddled up to me in bed, talking how much he wished he didn’t have it. Though he can explain the confusion to us, and we try help him, it really is something Fred himself goes through on his own. He knows it leads to ‘the fainting’ which must be so frightening to the little man.

6 O’clock Tuesday morning and Fred breaks into a big seizure, only eleven days since the last cluster. All I can do is make him comfortable and watch him go through it. Lisa, doing her morning routine with Fred’s medicines, comes in just as it finishes. We both know the score, both disappointed at the time interval. However I think we both hoped that he may have a few, so his brain could reset itself. It’s terrible to think that it has come to this; we’re hoping Fred will have a cluster so he can have a better quality of life before the next day of seizures. That is what epilepsy does to you, I suppose.

As it happens he did have a cluster, one of the worst in a long time. Between 6am Tuesday and 1am Wednesday Fred had eleven full on seizures. We intervened with the Diazepam at about 2pm, after number five, but every couple of hours afterwards he had another one. He even got up for a while in the afternoon but we were back in bed by 7pm, it was all too much. He slept well afterwards but Lisa and I were wrecked. Fred woke about 4am and asked for me, so I took over for the rest of the night. When Lisa came in about 7.15am I could see she was in no state to take Ruby to school, so she took over and I got up.

By the time I came back from Dingle Fred and Lisa were up. Fred was asking for breakfast, not surprising as he hadn’t eaten since Monday evening and I made him some scrambled egg. He took his time eating it, his throat was sore from the seizures and his brain was frazzled. Lisa and I weren’t much better.

At lunchtime Lisa got a phone call. As I was coming down for my lunch she met me at the foot of the stairs...

“Beaumont just called; they have a cancellation and want us up tonight.”

“For a meeting?”

“No, the surgery.”

The word stunned me; the immediacy of something we’d only thought of in the abstract really took the wind from my sails. This was real and suddenly I was quite frightened. My boy was to have surgery. It took us about ten seconds to agree that we should do it. Everything made sense, no point in waiting, it was only a three hour drive away, Fred had just gone through a cluster so there was no fear of epilepsy interfering. He even needed a long sleep and he could do that on the journey to Dublin.

Lisa rang back and booked us in. There followed a couple of hours of arrangements and calls. I’d dropped Ruby off in Dingle at 9.40am saying see you this evening. We found her and she slipped into gear, arranging a sleepover with Ali on the spot. Lisa sent me off shopping while she packed and tidied. Conor called me back after I left a message and of course the bed would be ready for me, whenever I arrived. By the time I was back home the bags were packed, Fred was excited by a trip to Dublin, arrangements were in place for Muttley and all we needed to do was go. In the rush I’d forgotten lunch but we were still out the door by 3.30pm.  We stopped in Newcastle-West to stock up on goodies for the hospital and a lunch for Fred.  The lady at the deli counter asked me if I wanted the egg sandwich cut in two. I asked her to quarter it as it was for my son. I explained how he had asked for an egg mayonnaise sandwich for lunch, as a treat.

“Is that all he wanted?” she asked, “he sounds like a great little boy.”

More than you’ll ever know I said to myself.

She went on to say that she had two at home who were “mad for the sweets.” And that they’d “eat the hand off you if you weren’t careful.”

She cheered us up no end on the day that was in it.

Off we continued to Dublin, Fred still wrecked from his couple of days, had his sandwich and fell back to sleep in his mother’s arms. Outside of Limerick I heard a traffic report of an accident on the M7 and about twenty minutes  later we came upon it. For the next two hours we sat in traffic, going nowhere, listening to the radio and waiting. Eventually at 7pm they waved us on and we continued to Dublin. About 8pm Beaumont called wondering where we were but we happy to hear that all was ok. In a way we were doing them a favour, they had a theatre and a team already booked for the cancelled surgery so they didn’t want to try rearranging all that.

At 9pm, eight hours since the first call, I dropped Lisa and Fred at the main entrance to Beaumont hospital. We’d arrived and preparations could begin. I parked up and the two were in Admissions when I found them. All the paperwork was quickly done and we set off for the ward. As always the staff was very welcoming, this is Fred’s 7th hospital and the staff have never left us down. There happened to be a private room free and the nurse gave it to us. All in all the day was working out, the room was fine and everything seemed to be going to plan. Fred was tired, Lisa and I were wrecked, what a whirlwind of a day for us all. As the nurse was looking after the two I slipped off to Conor and Cathy. My job was done and tomorrow was going to be the big one.

Crossing Dublin all I could think of was sleep. We’d no idea of what Thursday was going to bring but it was going to be a big one in the life of Fred Verling and his family. At Inchicore I was looked after, fed watered, wined and in bed by 11pm. Conor and I had had time for a bit of chat on football and whatever,  which helped me wind down. By the time my head hit the pillow my eyes were closed. My family was being looked after in Beaumont and Dingle, there was nothing more we could do but wait for the morning.

At 6am I was up, by 6.15am I was showered and on the road. Back across Dublin as it woke up, doing a reverse of my route from the previous evening and I was at the hospital by 6.40am. Slowly I opened the door of the room, only to be greeted by Fred, wide awake and watching his DVD player.

“My Dad”, he exclaimed, climbing over his mother to give me a hug, “the squirrels woke me up. They were doing this,” and Fred made the usual sound we associate with cartoon squirrels. Turns out he’d been awake since 4am, having not gone to sleep till about midnight. The poor man’s clock was all out of sync after Tuesday and the travelling on Wednesday. Lisa had crawled into his bed to cuddle him and assure him over the threat of the squirrels.

About 7am the nurse came in to do the usual obs. Fred was looking for his breakfast, he was fasting, on top of not having eaten much since Monday night the poor man was starving. We promised him a special breakfast when the surgery was over; he wanted a sandwich like he gets at Temple Street.  At 7.45am the surgeon, Donnacha O’Brien arrived to see us, our first meeting. Apparently he’d rung during the night to see if Fred was ok and ready for the morning. He’d obviously come straight from the car, he still had his heavy raincoat on. Donnacha went through in detail what the surgery was about, how he would do it, what he hoped the outcome would be and the possible side effects. A deep thinking, focused, kind man, just the sort you want doing major surgery on your son. As he left I felt completely at ease with him, that he was the man for the job. Donnacha’s registrar had consent forms for me to sign and we were all set.

“See you about 8.30,” Donnacha had said as he left, “you’re first up.”

Lisa got Fred into his gown and a porter arrived to take us up. The nurse came with us, Fred sitting up looking around him, wondering what was going on, but going along with it all. At the surgery we were wheeled into the prep room. There were two lines of people waiting, all in their gowns, laid out on their trolleys, some with relatives, some alone.

The anaesthetist came out with Freddie’s file...

“So Freddie, you’re here for the VNS implant,” she started.

“No, my breakfast,” Fred answered, the poor man was starving by now.

For the next few minutes we had a lot of people coming and going, checking and rechecking Fred’s file. Then the surgery nurse took over and with a jolly porter, wheeled Fred off to theatre. They put a gown and hat on me; I was going with the man, until they put him under. In the theatre Fred was getting worried but the staff reassured him. We all chatted and it turned out the mother of the anaesthetist had taught me maths at school...Donnacha appeared in full gear, double checked Fred’s file with the anaesthetist and we were set. They gave Fred a shot of gas and he was off in the land of nod.

For the rest of the morning Lisa and I wandered around, drank coffee, ate breakfast, read and waited. At noon Fred was out and in recovery. All had gone fine, he was awake but dozy. Fred being tired fell asleep and slept until gone 1pm.  We got the nod from the nurse that he was on the way back to the ward.  Lisa and I met him at the door of the recovery ward, his eyes half open and a bandage on his neck. When he saw us he drifted off again into a deep sleep.

Lisa and I sat in vigil beside his bed for the next couple of hours. We ate some lunch and drank more coffee. Fred slept it off. At about 3.30pm Freddie opened his eyes...

“Now can I have my breakfast?” he asked through a dry, raspy throat.

What a man, nothing fazes him.

The next few hours went by in a haze. We were visited by nurses and doctors but Fred was doing great. He ate the sandwich I got him and he was up for the chicken and chips at teatime. Indeed he was sitting up watching a DVD by about 4pm. Donnacha dropped down and did the epilepsy nurse, just making sure he was ok. Lisa sent me back to Conor and Cathy’s about 8pm. Our day was done.

In the morning I was over by 6.30am again. I snuck into the room. Lisa and Freddie were cuddled up in his bed, fast asleep, the camp bed was vacant beside them. It was too inviting so I got in and dozed for an hour. When Fred woke he asked me to cuddle him, dispensing with his mother. The rest of the morning was taken up with visitors. Donnacha checking in one last time, the epilepsy nurse giving us the rundown on the VNS. It hasn’t yet being switched on, Dr Amre will do that in two weeks time. The stitches on his chest will have to come off in ten days; the ones on his neck will dissolve in about seven.

At 10.30am we were discharged and by 11am we were on the road back to Tralee. Fred cuddled up to his Mum in the back, ready for more sleep.

We were home by 2pm. Only 48 hours since we’d gotten the call but everything had changed.

Now we’re beginning the first real attempt to tackle Fred’s epilepsy.

Fred meanwhile is wearing his new boots. He asked for some ‘farmer boots’ when in the hospital and he hasn’t taken them off since Lisa got them Friday afternoon.

“Look, I’m just like Granddad Jimmy,” he said proudly walking around the front room, “I’m going to Waterford to help him on the farm.”

We just can’t wait for Amre to switch that VNS on.

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Posted by John Verling

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