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

9Feb/140

A Tale of Two Halves

Fred is downstairs watching Scooby Doo. More staring at than watching as he is wrecked after a cluster of seizures yesterday. Day twenty, almost made the magical twenty-one day mark, better than day thirteen last time round.  It seems the entity that is epilepsy is doing a cycle of thirteen days followed by one in the low twenties. As long time observers of epilepsy it never ceases to amaze us how it seems to have a mind of its own. Despite our best efforts it always manages to beat us. That mind has a strong will too...yesterday we intervened with the Stesolid after number three in an effort to save Fred from a tough day but it came back to have its cut. Six more seizures our boy had to endure before he was left alone around 4pm.

Being the man he is Fred woke about 7pm, watched some Scooby Doo and alternated between Lisa and me, cuddling into us like a new born. By 10pm he wanted to go to bed and he slept well though he will need more rest today. As usual he wasn’t hungry for breakfast, saying through a raspy throat...”I’ll have that later.”

On Monday Lisa drove him home from school at the usual 1.15pm. I was in the kitchen making him soup for lunch when they drove up. Lisa had to help him out of the car and walk Fred into the house. He looked terrible, his face was almost green and his legs weren’t working. As Lisa walked him I fully expected the man to collapse in her arms. Apparently just as school finished the confusion had come on and the teachers took care of him until Lisa was on the scene. With her mother’s sense of concern Lisa was actually on the scene before the teacher’s knew it, she’d been watching the school and knew something was up by the movements of the staff. In fact Lisa had spent the whole morning outside of the school, though I had tried to convince her otherwise; she just knew...

Once on the couch we prepared Fred for the inevitable seizures that were coming. Put him in his pyjamas, get him to the toilet and then under a warm blanket, the usual routine. Lisa swiped him continuously with the magnet. When swiped the VNS will give out a thirty second pulse at .25amps more than it is set. So he is on .75amps and each swipe would give him a thirty second shot of 1mp. About every ten minutes is the advisable time frame. Remarkably after a snooze of twenty minutes or so Fred woke up, looking for lunch. The colour had returned to his face and he was a completely different boy from the one dragged in the door about half an hour earlier. Whether this had anything to do with the swiping we’ll never know but I’ve never Fred seen look so bad and not go into a cluster.

He tucked into a lunch of soup and a wrap. After downing the soup he looked for more so I gave him another bowl, without a wrap, one was enough. Fred complained but I said no...

“How about some toast?” He asked...

“No toast.”

“Aww that’s not fair”

“I’ll give you half a cracker,” I tried, trying not to crack under that pleading look.

“How about two halves?”

So I gave him two halves.

Afterwards he slept for the afternoon. A big, deep sleep and he only woke when Ruby came in from school. That night he went to bed a bit later than usual but still got a good night’s sleep under his belt. We kept him home on Tuesday, out of habit more than anything else and he had a great day of it. That is until Lisa broke the news that Ms O’Se was coming round for class in the afternoon.

“What? I don’t want Ms O’Se,” was the indignant reply.

Thus the war began. The entente cordiale between mother and son broke down into an escalation of hostilities on all fronts. Diplomatic lines of communication were severed. All sorts of threats were issued on both sides but there wasn’t any sign of a breakthrough despite a call to the UN Court of Arbitration. Eventually with the clock ticking down to all out war Fred played his trump card...

“I have the confusion,” he said, lying back on the couch.

“Really?” his mother replied.

“Yes, really Mum,” he said looking sad.

This always brings on a dilemma for us. Do we believe him and put the rest of the day on hold or do we call his bluff only for Fred to go into a seizure a short time later. Of course we have to believe him; we want Fred to be aware of his epilepsy and to tell of us of any warning signs so we can protect our man. As any eleven year old boy worth his salt will do though, he will try and get out of school work. Lisa and I asked him over and over if he was sure. Yes he was. Lisa said she’d text Ms O’Se but he better be telling the truth because we needed to trust him.

As I had a few jobs to do I left the two cuddled up on the couch. But when I came back about an hour later Fred was sitting up at the kitchen table with Ms O’Se, working hard at his homework...

“I thought you’d cancelled Ms O’Se” I said to Lisa...

“No, I just pretended to, to see what he’d say when she arrived, he went in without a bother.”

“Do you think he was fooling us?”

Lisa shrugged her shoulders as if to say who knows with Fred.  Who does? I went into the kitchen to put away the shopping and an alert Fred was almost sitting on Ms O’Se’s lap, ploughing through his homework. Shortly afterwards she left, they had done over an hour of work and she was really pleased with Fred. As I started to prepare dinner Fred appeared beside me...

“Dad?” he said, head down in a very contrite manner.

“Yes?”

“Ok, you got me, I lied about the confusion,” he said, head still down.

“Promise you won’t do it again?”

“I promise.”

We’ll see...

All week Fred had been counting the days down to the trip to Dublin. Thursday and we had a couple of appointments at Temple Street. One for putting Fred’s VNS up another notch and another with the child psychiatrist team who wanted to get a picture of Fred and his family for an educational report. We headed off at 9.30am, the car not so full as normal; we were attempting to do this in the one day. As Ruby is doing her ‘mocks’ we didn’t want to disturb her study plans by being away for a night. Much and all as we wanted to visit Inchicore this plan meant we wouldn’t be seeing Conor and Cathy either. Fred thought we might but Lisa and I said that it may not be possible this time round.

With the meeting on Thursday and Fred getting the confusion on Monday it was a stressful week for us.

What if Fred had a seizure before going up? That would mean cancelling the appointments and waiting another month for the psychiatrist team. Anything after Tuesday would have meant he wouldn’t have been alert enough for them. What he had one in the car on the way to Dublin, Thursday was day 18 and we’d definitely be in the danger zone. The only option then would have been to turn around and go home. What if he had one in the hospital? They wouldn’t have let him home, meaning a couple of nights in hospital and Ruby disrupted. I told Ruby in that case I’d drive home to be with her so she could get on with her exams, but that would mean leaving the others in Dublin. What if he had one on the way home? That would mean a trip down the motorway with Fred seizing in the back and we brought all medicines to cover that eventuality...

In the end we got to Temple Street in one piece. After lunch in the Basement Cafe we headed up to see Suzanne, the VNS nurse. After hearing how well he was doing and that we weren’t heading away for another two hours Suzanne proposed going up a double amount. Up from .75amps to 1.25amps. If he didn’t react well she could turn it back down again and she would stick around until 5pm in case we needed her. The double jump would mean we wouldn’t have to see her for another month and this would coordinate nicely with the psychiatrist’s plans for a number of monthly sessions.

Beep went the magic wand, Fred coughed but all was ok. Suzanne was pleased with his initial reaction and sent us on our way.

In the psychiatrist’s chair it was actually Lisa and I under the spotlight. She wanted to get the complete picture from day one and before. We had to go into our family histories, our own past and that was all before mentioning Fred. The usual tears were shed as we went through the happy birth to his first seizure at nine months and the subsequent years. Fred was playing games, probably also being observed by the two. Of course the inevitable confusion hit, what a surprise, and Lisa couldn’t swipe him, as it wasn’t advised after such a jump in output earlier. So Fred cuddled into his Mum while we went through his life story and how epilepsy has impacted on us. The hospital visits, the ambulance trips, the move to Tralee, the effect on Ruby and everything else. They got it all out of us, tears and all.

Remarkably Fred slept through the confusion. Once the meeting was over I ran off to get the car; we needed to get him comfortable and away from the hospital, the last thing we wanted was a couple of nights on the ward. Driving back around the corner I half expected to see Lisa with a crowd around her, helping Fred back inside. But no, the two were standing on the pavement waiting and we shot off into the Dublin evening. Lisa got Fred comfortable and soon he was in a deep sleep. As we drove down the quays Lisa texted Suzanne to tell her all was ok with the double jump. Driving through Inchicore the car almost automatically turned up to Conor and Cathy’s but we had to head for the south. The traffic was ok and once beyond the Red Cow roundabout it was plain sailing all the way to Tralee.

Fred woke up just as I pulled in the Mayfield service centre but wasn’t hungry for dinner. He did want popcorn though, for some reason, so I got him small bag. With coffees for the parents, popcorn for Fred we headed off to Ruby. As we drove I’d look in the rear view mirror from time to time to see Fred’s face looking out at the passing traffic. It’s one of those reassuring sights I love; he’s awake and taking in the world.

The next day, Friday we tried to get back to normal. Lisa took Ruby to Dingle and I drove Fred to school. Denise had been off for a while and Fred hadn’t seen her for about ten days. The two of us walked in but no sign of Denise. Then from behind us she walked in...

“Hi Denise!” Fred exclaimed.

“Hi Fred, I’ve missed you,” Denise answered with a big smile on her face. She has been through some tragedy recently and she looked really happy to see her friend.

“I missed you too,” Fred said, walking away with her, taking off his coat as he went.

It looked like the two were glad everything was getting back to normal.

As was I.

 

 

 

 

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Posted by John Verling

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