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

26Oct/140

Charming the Ladies

On Sunday Ruby and I went to Dublin. It would once have been strange for the two of us to head off leaving Lisa and Fred behind but such is the progress we’ve made that hardly a mention was made. We left Sunday evening, the two cuddled up on the couch, looking forward to the peace of having half the family gone. In Dublin Ruby and I were well looked after by Conor and Cathy, the only thing missing were the two back home in Tralee.

We got home Monday evening to dinner on the table, a pleasant surprise, and Fred delighted to have us back. I was the delighted one though as Fred was still ok, no signs of any activity, a day down at school and another day ticked off on the seizure free calendar I keep in my head. Again Dr Shahwan has come good, not letting us be distracted by short-term setbacks and helping us keep our heads when before we may have lost them. Today is actually day twenty-one, three lovely seizure free weeks for Fred and the family.

On Tuesday evening Fred had to get the flu jab. For conditions such as epilepsy the flu can be a danger, skewing medicine levels, pushing up temperatures and letting in seizures. Even those couple of chest infections Fred got lately had him in hospital, something that we want to avoid as much as possible. The two of us went to the doctor’s surgery to get the jab and Fred really impressed me by how he behaved in the waiting room. On previous occasions he would have been into everything but this time he sat still, waiting his turn like the rest of the people. When our turn came Fred walked in ahead of me and out of habit got up on the couch, though the nurse offered him a chair. The jumper was off and then he began unbuttoning his shirt, again out of knowing exactly what was expected of him.

The nurse got the paperwork and asked me to sign:

“Now Dad,” she began in the manner all medical professionals address me when with Fred.

“He’s John Verling,” said Fred.

“What’s that?” she asked.

“He’s not your Dad, he’s John Verling,” explained Fred.

Nurse Sile laughed; Fred had won her over.

Fred gave his usual “jesus Christ almighty,” when the needle went in but otherwise all went fine and we were out the door after a few minutes. Back home Fred showed off the bandage to Ruby as if he’d just gotten home from the Front and Ruby was suitably impressed.

Wednesday afternoon and I was driving over to the school to collect Fred when my phone rang. Denise was calling to say Fred was in a bad way and to come straight in. Like Steve McGarrett I pulled up outside Blennerville gates, lights flashing and parking on the double yellow lines. Inside Fred was slumped on a chair, as pale as a sheet and moaning. Just a couple of minutes earlier he’d told Denise that he felt bad and needed to get sick. Around him were Ms O’Connor, Ms O’Se, Denise and Terry, the principal. Fred isn’t short of carers at school that’s for sure. I looked at Ms O’Connor but she said “no, he hasn’t had a seizure,” but it did look as if one wasn’t far away.

As it was school out time the last thing I needed was for Fred to keel over in front of the parents and pupils. So I asked Fred to stand up which he did, then I picked him up and rushed him out the door to the car. Terry ran in front of me opening the door and Denise threw all Fred’s stuff in the back. We strapped him in and I turned for home.

“I’ve got bad confusion,” said Fred, “and the puke is in my throat.”

Seemed like the worst of days but we got home and Fred was soon lying out on the couch. After a small snooze he woke and asked for lunch. A chicken sandwich later and he was sitting up watching a movie. By the time Lisa came home he still had “a little confusion,” as he called it but seemed past the worst. Dinner was had and Fred went off to bed, still with bouts of confusion but slept through the night. On Thursday we kept him home, for observation really but also to help him recover.

On Friday the class were going by bus to the library for a story telling session. Fred said he was up for it and so I drove him over at the usual time. At the school he told to walk behind him, as he was able to go in on his own. So I walked a few paces behind, Fred holding his hand up to tell me to back off. At the classroom door he stopped, the kids were at their desks and they all looked up at him.

“I’m back!” Fred declared hands up in victory.

“Hi Freddie,” they all replied, happy to see him.

“You’re back Freddie,” said Ms O’Connor, looking at me and I shrugged my shoulders in reply saying that all had been ok, he’d come through the couple of days unscathed.

Whether it was the flu jab causing the disruption or the VNS kept a cluster at bay we’ll never know but Fred carried on regardless. On Friday evening Ruby had some of her new friends over to get ready for the school disco and Fred won them all over. He found photos of Ruby as a baby and passed them around, the girls loving his sense of humour as he laughed at each photo before he handed it over.

Being charming without realising it is a special skill and Fred does it at ease.

Long may it last.

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19Oct/140

Waxing Lyrical

Fred, along with everything else in his life, gets wax build-up in his ears. Once a year he has to get it removed and his annual service was due this week. On Tuesday morning I collected him from school at 11am and we drove over to the hospital. As is the practice now I didn’t tell him in advance, as that would be all he would think about, to the detriment of everything else. So for the short journey Fred kept asking why he had to go to the doctor, did he have an infection and would he have to get an injection? Even when we were sitting in the waiting room the questions continued; who what where when and why; the five ws of investigative journalism are well known to our Fred.

The ‘noises’ in his head had started a few days previously and were a sure sign that the trip was warranted. We were lying in bed one night when he shot up, looking around and looking scared.

“What is it?” I asked.

“The noises are back,” he answered,” I can hear Rugrats in my ears.”

Why Rugrats I don’t know but then Fred said he could hear the radio too. Off he went to his mother’s bed where he slept soundly, apparently the noises only play in our own bedroom.

The doctor, who tends not to say much and if anything is a bit wary of Fred, did his job and took enough from Fred’s left ear to start a cottage industry making nightlights. Fred oohed and aahed but when the procedure was over he was delighted. The revelation of being able to hear clearly again was obvious and he was delighted too that ‘the noises’ were gone.

Leaving the doctors there was a big smile on his face, he was looking around taking it all in, as if he’d been locked away in a darkened, sound-proofed room for a month.

“That’s better Dad, I can hear again,” he said.

Back at school he walked in, leaving me at the door and I nodded to Denise that all was good. When I collected him after school Ms O’Connor came out to ask if all was ok. I explained why we went off and she started to laugh. Apparently when Fred had settled himself again he looked up at her at the top of the classroom and exclaimed;

“I can hear you now Ms O’Connor!”

We had another trip to the doctors this week as well, this time for his six month check-up with Dr Shahwan at Temple Street.  At 7am we left the house, Fred a bit bewildered at being woken so early, again we hadn’t told him of the trip. With a minimum of fuss the car was packed with the essentials and not far outside of Tralee Fred curled up to his Mum for more sleeping. Thankfully he slept until beyond Kildare which meant he was fresh by the time we got to Temple Street.

On the way up Lisa and I discussed what we wanted to talk about. Our main concern was the decreased intervals between seizures and the gains we had made in seizure severity seemed to have faded too. This we were linking with the changes Suzanne had made to the VNS output at the clinic in August. The output frequency had gone from every five minutes to every three minutes.

The waiting room was packed with kids of all ages. A big change in Fred that I noticed was that on previous visits we’ve had to keep him seated and not to be making noise or disturbing other people. This time however he sat still, watching the other kids and being a grown-up boy. A small improvement but a sign that Fred is maturing. When our time came he went to get his weight taken and also sat still in Dr Shahwan’s room. There was a time he’d be pulling at everything but all went peacefully enough.

Dr Shahwan was interested in the improvements Fred had made; how well he was walking, talking and looking like a young man. This is a big part of Dr Shahwan’s approach, to make epilepsy almost secondary and get Fred a life where he develops fully, with epilepsy just being a condition. As he hadn’t seen our man in six months Amre was delighted with the patient standing in his room. When I said that it was two years since we first met Amre couldn’t believe it. At times we too lose sight of the improvements over the last couple of years.

Over this weekend I’ve tried to take a back seat and watch Fred. He is a different boy, walking tall, talking and not as argumentative as he was over the summer. Of course we don’t know how long all this will last or if it is indeed a permanent step. We too have being slowly trusting him to do things on his own and to tell us if all is ok.  The outcome of the meeting was to let the VNS as it is, see if the few bad intervals are just a blip and will Fred return to the longer gaps. Dr Shahwan was anxious for us to see the bright side, the long term improvements and not to get sidetracked by what may only be temporary setbacks. The glass half full approach.

After the meeting we had the traditional lunch in the Basement Cafe and before setting off for home. Lisa and Fred slept for a while and we were home by six, a long day but at least we were home. For a treat we had a Chinese takeaway at which Fred nearly fell off the couch with the excitement when I walked in with the white bag.

Later Fred was watching a DVD when he turned to Lisa and asked:

“Do you miss your Mummy?”

“Of course,” answered Lisa.

“Well she’ll always be with you, in your heart,” Fred said, holding his hand over his own heart.

Where he got that from I don’t know but that boy is always breaking our hearts

Of that we are sure.

 

 

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12Oct/140

Don’t Panic

Since Wednesday live has been fairly normal in our house. Fred went back to school as if nothing had happened. The teachers and pupils all looked at him with concern but they needn’t have been; Fred had bounced back as if nothing had happened.  The hospital, high temperature, chest infection had all been forgotten, Fred was back and that was all that mattered. Kids seem to take everything in their stride and just get on with life. Certainly our Fred just walked in the gate and past Denise as if to say ‘all right let’s get this over with so I can go home again.’

As he walked in Denise, looking concerned asked:

“How are you Fred?”

“Oh fine,” Fred said as if he’d never been away.

You got to admire those powers of recovery.

Before Fred had involved himself in the latest drama we had planned to go on drive and get a hot chocolate on the way. So on Wednesday afternoon the two of us set off to do a few jobs and get a cup of hot chocolate. We parked up in town and walked over to get some money from the cash machine. After getting the messages we set off on our drive and some drinks for ourselves.  Driving down the street I spotted a friend and stopped to say hello. John hadn’t met Fred before and was delighted to eventually get to shake his hand.

“Where are you two off to?” John asked.

“Oh to get some hot chocolate in a cup, a proper cup,” said Fred, doing the movement of holding up a cup by its handle, “and a coffee for my Dad, in the restaurant.”

It seemed that Fred wanted a sit down hot chocolate and the idea appealed to me too. So on saying goodbye to John we set off back down the mean streets of Tralee and parked as close to the Grand Hotel as possible.

The two of us approached the fine doors of this old hotel and Fred said “but this is the restaurant for fish soup.”

“Yes,” I said, “but they also do hot chocolates.”

“Cool,” Fred said pushing open the freshly polished, heavy door.

Inside we sat at the high stools around a small table. Fred loved it looking around at all that was happening in the busy restaurant and soon the waitress who seems to have been there forever, came over to take our order.

“Excuse me,” said Fred, his manners shining through, “can I have a cup of hot chocolate please and a cup of coffee for my Dad.”

The order was taken and we sat waiting. Soon afterwards a big mug of foamy hot chocolate topped off with marshmallows was placed in front of the man. My cup of coffee looked inadequate in comparison.

“Wow,” said Fred, the eyes popping out of his head. For a minute or so he just sat looking at it, stirring the marshmallows around the foam, smiling in anticipation.

There was also a biscuit to with it and I gave Fred mine saying:

“Don’t tell Mummy.” That always adds an element of indulgence to a trip out.

“I won’t,” answered Fred without looking up.

For the next while we supped our drinks and looked around at what was happening. Fred asked about the beers and what the different taps served. I tried to explain that the black tap served Guinness which was the best drink and the other taps served only lagers and ales.

“They would make you sick?” asked Fred.

“If you drank too much yes,” I answered, without claiming any prior knowledge.

There was a man sitting at the bar, a man I’ve seen many times around town. He always wears a suit with a fine flat cap over his head of grey hair. In winter days he has a black great coat on and he strides around with the gait of a gentleman. Once I pointed him out to Lisa and said it looks like he comes from “good old stock.” That phrase always comes back to me when I see him and spotting him sitting at the bar of an old hotel seemed to fit my image of him perfectly. The cap was on but the great coat was hanging on the coat hook, like a gentleman would, not draped over the back of his seat like others.  He ordered a pint of Guinness which was a perfect example to show Fred of how a pint needs to be poured and left to settle. Fred watched the process, fascinated with the black pint and the collar of white cream forming at its head.

When our time was up, our drinks drank, I suggested we go. Fred didn’t want to leave, he was loving the watching, the observing of the habits of a hotel bar on a wet afternoon, the people coming and going and so was I. It was time to collect Ruby from school though and leave we did.

Back in the car Fred said:

“I liked it in the restaurant Daddy, can we go back again?”

“Of course,” I said, delighted that it had all gone so smoothly.

On Friday evening we had a few jobs to do, in and out of the house and by 5.30pm it was just Fred and I catching up on time while the girls went to the gym. It suddenly occurred to me that we’d forgotten Fred’s five o’clock medicines. It’s important to keep to a regular schedule with the meds and with all our jobs we’d forgotten the evening dose. Fred swallowed the pills and went back to watching TV while I started on dinner.

 

 

When Lisa and Ruby came back I went to off-licence to get some beer for a night out. One of our five-aside football players had snapped his Achilles tendon while on the pitch last week and as he couldn’t go out it was thought we’d bring the beer to him. A pure act of selfless care if there ever was one and Finbarr was only too happy with the arrangement.

When I got back with my box of beer Lisa was in a terrible panic. Fred was sitting up looking at me on the couch.

“You gave him his medicines and so did I, before I went out,” Lisa was saying, checking on a fairly dazed looking Fred.

Those meds are strong and the fear of an overdose chilled me. Liver function is the usual side effect but you never know with the meds. Stupidly the two of us were looking online which only gave us the worst case scenario, cardiac arrest, liver failure and you name it.

I rang Temple Street.

They put me through to the reg on call and the first thing she said was;

“Don’t panic this happens to parents all the time, just tell me what he’s had,”

This I did and she went away to check what to do.

After a minute she was back...

“Well what you just gave him would still be under his daily allowance so you’re way off an overdose,” the relief was massive, “the only thing to worry about would be a difficulty in breathing from the Rivitrol, very unlikely given the small amount taken and that would have happened after a few minutes.”

“Thank you so much,” was all I could say. I had the phone on speaker and Lisa standing beside me visibly relaxing as she listened.

“One thing is certain he won’t be having any seizures tonight,” the doctor said as we said goodbye.

She doesn’t know our Fred, I thought.

There never isn’t a moment of drama in our Fred’s life.

 
 

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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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