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

8Oct/140

Normality Reigns Again

Today is our first day of normality this week.  On Friday last Fred came home from school with a sore tummy; when the phone rang and I saw the school’s number I feared the worst. Knowing that I was probably scared by seeing their number, the first thing Denise said was “don’t worry everything is ok, it’s just that he’s complaining of a sick tummy.” When I got to the school Fred was ready for me, bag on his back, jacket in his hand. Ms O’Connor joked “I suppose he is allowed to get sick too. We are always so worried about him that we forget that sometimes.” It is very true, we forget that Fred is just a normal boy with epilepsy and it is important not to let him be defined by his condition.

In the car home Fred was feeling very sorry for himself but said he didn’t have confusion, just “a sore tummy.” Back home he changed into his pyjamas and settled in under the blanket. This was just before 1pm and he snoozed for a while, waking before 2pm...

“Can I have my lunch now?” he asked.

All fine there I thought and made him a small, light sandwich. Before Ruby came home at 4pm Fred fell asleep again, this time into a good, deep snooze. Lisa came in after 5pm and seeing him laid out on the couch she feared the worst. For once I was glad to report that all was relatively ok, just an illness for a change.

Lisa though did fear the worst, that the sick tummy was a portent of worse to come. Fred proved her wrong, waking a bit later for dinner which was scoffed down without a problem. Later Fred sat up with me after the girls went to bed, watching a move and doing his jigsaw.

Saturday morning Fred woke with a blocked nose and felt very sad in himself. He bucked up after a while and went shopping with me, getting the groceries and the papers, with a fight along the way. From time to time Fred gets an obsession going, this time it’s about Halloween decorations. When we went into Super-Valu he was all set to help me pack the basket but once he saw the stall of tat he was gone....

“Wow!” was all he could say, looking at the masks, fake pumpkins and whatever else has been spurned out by the decoration factory in China. That factory no doubt has been in full production all year from the looks of the spread in our local shop. It took all my strengths of persuasion to get him away from the shelves; the biggest deal I could offer was that we’d return when it was closer to the actual date. In a way this helped as I’ve been trying to get Fred to understand the concept of time and time gaps for the last while. So it made some sense to him that Halloween is three weeks away and Christmas is about twelve weeks. The deal was that we’d return in three weeks, if he’d walk away now. In fairness he did but was still not concentrating on anything else, just the Halloween tat.

That evening Ruby went to Dingle which left just Lisa, Fred and me at home.  His cough was getting worse, the cold was going from him nose to his chest again. It’s amazing with kids how these things always happen at night; Fred was fine all day and only at bedtime did he really go downhill.

Around 9.15pm he was watching a DVD and asked if he could go to sleep. He cuddled into Lisa and then he said:

“Mummy I feel all twitchy.”

Lisa looked at me, now we both feared the worst.

Within a minute a seizure had broken through.

“Why does this always happen? Why couldn’t it just stay as a simple blocked nose,” said Lisa

When he woke we got him up to bed so he’d be comfortable. No sooner than he was in bed when another broke through, two in fifteen minutes.

“Better call the hospital,” Lisa said.

I didn’t want to but I knew it was inevitable. Katherine answered and put me on to Marie. Why does Marie always have to be on duty when Fred is in a bad way? Of course we’re only delighted as she knows us so well and gives our boy such great care. It’s a standard joke on the ward now that Marie is always there for us when we come in but seeing her makes it all so much easier.

“I’ll get a bed ready and if you think you have to come in give me a shout back,” she said after I explained the situation.

By about 10pm Fred was burning up and the visit to Kerry General Hospital was inevitable. I called Marie and she told us to come straight up, she’d look after admission.

Fred woke in the car and was sitting up in the wheelchair looking around him when we got to the ward. The room was ready and soon they were comfortable. The doctor put in a line, took some blood for testing and we settled in for the night. About midnight Lisa sent me home, all so familiar but we so wish it wasn’t.

The next morning I was over by 8am. At the main entrance I met Marie on her way home and she gave me a rundown on the night. Fred had had a couple more seizures, was running a temperature and his blood test had shown an infection. The two were sleeping and all in all it wasn’t unexpected news.

The rest of the day went as usual. Fred slept a lot and had a few more seizures. His oxygen levels were way down and this was a concern for the staff. His temperature was a bit high but stable but connected with everything else it was though best to keep Fred in for another night. This was a disappointment but understandable in the circumstances.

Those days of hospital trips, disturbed home time and none of us really seeing each other are just horrible. Lisa, Ruby and I try to get on with our lives but it’s a constant merry go round of in and out the door, eating whatever is in the fridge, if you happen to have an appetite,  and drinking canteen coffee from polystyrene cups.

Times we had hoped  were behind us.

By Monday morning Fred was sitting up when I got to the ward. His colour had returned, oxygen levels were at 99% and temperature was down.

That evening we were all home again. Sitting around the front room, reading and watching TV. In bed Fred cuddled in to me after we read a couple of stories.

“I’m glad to be back home Dad,” he said.

“No more going back to that hospital,” I ordered.

“I promise,” Fred said.

That’s one I’ll make him keep.

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Posted by John Verling

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