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

13May/120

A new life in Crystal Springs

Sunday morning in Crystal Springs,  the holiday home resort we’re temporarily living in, never thought I’d be writing a line like this. Unfortunately, the tenant hasn’t vacated the lovely house we were expecting to move into last weekend, and so we’re refugees on this estate. It could be a lot worse, the house is nice but as anyone who’s stayed in a holiday home built in the last 10 years will testify, its limited and not a home. All our stuff is in storage in an unfinished house next to the one we’re expecting to move into, so it’s been living out of boxes for us this last week. If we were actually on holidays, it would be fine but we’re not and it’s unsettling. Poor Muttley the dog is verboten and is in a kennels not far from our old house in Ballyseede. Ruby and I dropped him over last Monday morning, he didn’t seem to mind all the barking from the other inmates and apparently, he’s settled in well. He probably knows he has to take the rough with the smooth, thankfully.

Lisa, incredibly, moved us into two houses last Sunday. What was needed immediately came here to Crystal Springs, the rest of our possessions went to Ballyard. Ruby, supposedly grounded, had taken the early bus to Dingle for the Feile Na Bealtaine parade. Fred was wrapped up next to me and having a series of little frontal lobe seizures, just what Lisa needed on top of everything else.  He’d be in the middle of talking to me, suddenly he’d stop and whatever word he’d be saying would stick in his mouth, like a scratched record. Five seconds later, he’d shake his head, collect his thoughts and continue as if nothing happened. At one stage he was walking to the bathroom and was thrown against the wall, giving his head an awful whack. Within seconds he was back on his feet, crying because of the bump but also I think out of fear of what was happening. This went on for the morning, every hour or so and was horrible to witness. It didn’t seem to take anything out of him, he carried on as normal each time but it really was upsetting for us. What was happening to our little boy now? In all my research I’ve read of kids having hundreds of seizures a day, now we were experiencing a dose of it, but was it any better than the big tonic clonic ones he’s also well capable of having? After lunch, he settled a bit and Lisa, stressed to the nines, continued with the move.  About three, he started having them every five minutes and we had to give him the diazepam. Gradually Lisa was working her way to the front room, emptying the house as she went. Thankfully, as she was doing this the little FLS stopped for a while. At about five, when Ruby was home and helping her Mum, they started again. That chu, chu, chu, sound he made when trying to fight them will stay with me forever. They weren’t as frequent as before but still had us on edge. When finally, we were all packed and ready to go it seemed as if they’d stopped.

At the new house Freddie was all excited about having eventually arrived and wanted to show me around. As he walked in the door of the new bedroom, he keeled over and had a big tonic clonic seizure. We were all at the end of our tether at this stage and though he recovered quickly, it looked like hospital might be the only answer. Another small FLS and Lisa made the call. He was ok and didn’t want to go but we couldn’t continue as we were. Ten minutes into a new house and off we were going to A&E. Lisa was completely ‘up to the high doh’ as she would say, as she wanted to clean the old house, leave it as we found it. My back was still wrecked and even though I offered to do it we both knew I wasn’t up to it. So I stayed with our little man in the brand spanking new A&E at Kerry General Hospital, leaving Lisa to head over to Ballyseede. About five minutes after she left I found her phone in my pocket, in my confusion I’d taken both phones from the car.

‘Now’ I thought to myself, ‘she’ll definitely be up to the high doh.’

In the A&E, we were been treated like royalty. Fred had come round quickly enough and was sitting up chatting to the nurse. Some man for the chat, wherever he gets that from….The doctor came down, happy to see us but probably not as happy as he would have been if it was Lisa. They did all the obs on Freddie and he passed them all. As usual, they had to put a line in just in case he went on to cluster. After all these trips Freddie hates the needle but yet he insists on watching the IV line being put in, despite the nurse trying to hide it from him. After it was in, we settled down to wait for the call from the ward. Peter, one of the head nurses, was showing people around the new facilities but he broke off to come say hello. When it was time for Fred to go up, he came to take us. Freddie is a bit of a celebrity in KGH but I wish he wasn’t, really wish they’d never heard of him….but they have and treat him so well it breaks my heart every time.

Up on the ward, nurse Marie was waiting for us. Though she’d been off duty for 20 minutes she wanted to stay on and settle us, you can’t beat dedication like that. She seemed more worried about Lisa being off without a phone than I was. Marie knows us so well now, knows how Lisa worries. She was even able to rattle off similar times when we’d been in, identifying excitement as a seizure trigger for Freddie. As she tucked him in, Freddie broke into chat with her...

“There was confusion in my head but its gone now,” he said, looking deep into her eyes.

‘Confusion in my head’ what a wonderful expression of what had been happening to him all day but also horrible to think how it must have felt to the little man.

After we were settled, Marie went off and another nurse brought us in tea and toast. Freddie wanted rashers with his but I convinced him otherwise. So we sat on the bed, me reading the paper, Freddie watching a DVD, both of us eating freshly buttered toast. How bad? About an hour later Lisa came rushing in, stressed would be too small a word for it, but the relief poured over her when she saw the two men in such comfort. Shortly afterwards I went home as Ruby was texting about strange noises in the new house. Just the wind as it turned out. We fried up what we found in the fridge and snacked in front of the TV watching Ruby’s favourite new show, 2 Broke Girls.

The next morning I headed over with the coffee. The two were sitting up after a peaceful night, thankfully no more seizures, no strong AEDs needed. At about eleven o’clock, they sent us home and we settled into a normal bank holiday Monday.

The week went ok till Thursday evening when he had another one during his dinner. The standard one minute but he recovered fairly quickly and had a clear night. The next morning he had a small one in bed about 6.15 and another about 7.15. Both small ones but it was a sign that Freddie was still in seizure activity. Ruby and I went off to Dingle and put down our normal days. Lisa rang as we were heading home at 5pm to say he’d had two more and was giving him the diazepam to try stop a cluster developing. The drive home can’t go fast enough after a call like that but I have to drive as carefully as possible, mindful of the precious cargo sitting beside me.

We arrived back at Crystal Springs and rushed in. Freddie was just waking up after his sleep, looking fine and gave me a big hug. The fear of another cluster developing hung over us for the rest of the night but thankfully, it never bothers our Fred. He demolished two bowls of rice for dinner. His new food obsession, a bowl of rice with a drop of soya sauce and olive oil. At 9 o’clock he feel asleep in Lisa’s arms, coming into my bed about 2am. No seizure activity all night and no hospital trip, a bonus for us.

This week we have an appointment with his Neurologist in Cork. Things have moved slowly since the last one in January but we hope to get news of Fred’s PET scan. Apparently, it can now be done at CUH, which is better for us as everything can be assessed in the one place. This should speed things up, push Freddie’s hoped for surgery that bit nearer. A joke of mine is that all of Freddie’s medical charts come with BOTM stamped on the front cover. BOTM standing for Beware Of The Mother, as Lisa will not stand on ceremony when fighting Freddie’s corner. Rightly so… and if Freddie’s scan date hasn’t come through by the meeting on Friday, his neurologist will feel the full force of BOTM and it won’t be pretty.

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Posted by John Verling

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