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

27Jul/140

That Old Familiar Feeling

Sixteen months, sixteen good months but like all good runs they have to come to an end. So it was with Fred staying out of hospital. This week that run was broken and we ended back on the Cashel ward of Kerry General Hospital.

Monday had begun as most days do. Fred was getting over a stuffed nose but worryingly his coughing was coming from deep in his chest. “A soapy cough,” as Fred described it, explaining how it felt in his chest. Illness is always a concern with Fred as it seems to affect how he processes his medicines. The balance of how epilepsy medicines work or not work is tight, so much so that even a change in brand name can have disastrous consequences. Fred took up residence in front of the TV; keeping him in one place and out of danger is a priority.

Early afternoon and Lisa has gone to her course. Fred comes up to my office and we download the correct Transformers for him to watch. The two of us go back to the TV room where Fred has laid out two kitchen chairs like deckchairs. He gets under a blanket and I get the Transformers working on the laptop.

“How are you feeling?” I ask.

“Fine,” he answers through a chesty cough, like a lifetime smoker in denial.

Back upstairs I’m working when I hear a crash from downstairs. Trying not to be alarmed, it wasn’t a loud one, I go to the top of the stairs. Then that horrible noise that we know and dread breaks through the silence.

The little man is on the floor and when he’s gone through it I struggle to get him onto the couch. Fred opens his eyes and looks at me, though I doubt if he’s aware of what has happened. The two of us settle down and wait it out. Ruby comes home and a short while later so does Lisa. I get his medicines into him and swipe the VNS continuously. Another breaks through and we know a cluster is brewing. Fred has been 21 days seizure free which is great but dealing with clusters we had hoped may have been a thing of the past.

All is ok for a couple of hours but then three strike in the hour after six o’clock. Lisa gives him a shot of Diazepam and cuddles Fred to her, the two of us fearing the worst.  From 7pm to 9m Fred is in deep sleep. Stupidly I begin to believe the worst has passed. But four in 48 minutes expose how foolish was that thought. Though Lisa has also given Fred nurofen and Paracetamol he still has a temperature. There’s no escaping this one.

Recently I’d been deleting old contacts off my phone and when I was about to do so to the direct line for the Cashel ward, decided against so doing. The nurse that answered didn’t recognise my voice or my name, it had been a while. She asked me to hold when I repeated my surname and Freddie’s name. Another voice came on the line...

“John?”

“Marie.”

“No, no, no, no, no,” was all Marie could say, she knew why I was calling.

Nurse Marie, the one who’d gotten us through so many bad nights before, was on duty. It all sounded so familiar but also so reassuring. The nurse who’d answered was newish to the ward. A child had been admitted the previous day, also suffering from seizures. The new nurse was discussing the case but Marie had said it was nothing compared to Freddie Verling. An hour later I rang; when the nurse put me on hold she was asking Marie “what was the name of the kid you mentioned earlier? I think his father is on the line.” The benefit of a unique surname.

We got in. Marie bypassed the admissions paperwork and we went straight to the ward where a room had been prepared and the consultant called. In fact we met him at the door. Fred had a high temperature and the urgent blood tests came back with an infection. By midnight the temperature was coming down and Fred was settling in. He even woke up and was looking around him. The doctor had put a line in for the Lorazepam, all part of the Freddie protocol, as they know it on the Cashel ward. Two hours seizure free was good, Lisa sent me home to Ruby.

I was back in at 7am. The two were asleep and Marie gave me a rundown of the night. Thankfully they didn’t have to give the Lorazepam as Fred only had another two seizures. They’d started him on a strong antibiotic which had helped stabilise our boy and his temperature had dropped...

“Herself eventually went off to sleep at about half three, you know what she’s like, she wouldn’t go before that,” Marie gave me that knowing look as she spoke; the four of us had all been there before.

In true Freddie style he was dopey but right as rain when he woke. Lisa went home to freshen up and the doctors paid us a visit. They were waiting on the result of a chest x-ray and more blood tests. By 2pm we were given the all clear and sent home.

The man was out of sorts for the rest of the week. The diazepam really wrecks him and it was like going back a year with the way he was so dopey at times. His speech is affected and he just isn’t aware of what is going on around him. It can take up to a week for it to pass through his system, though yesterday and today he is much improved.

Friday was my birthday and Fred made me a lovely birthday card. I think the day meant more to him than to me. It was a lovely day and we even went out for a big lunch in our favourite cafe. Fred munched down his toasted ham, cheese and onion sandwich, keeping some for the trip home in the car.

Later I managed a swim in the ocean, followed by a great birthday dinner of Fred’s favourite, creamy, mushroom pasta. Afterwards Fred brought me over a plate of birthday cheesecake, with one candle lighting, singing ‘Happy Birthday’ as he walked.

“Make a wish Dad,” he said as I blew it out, looking at me with a big smile on his face.

The wish was made, the same one as last year.

I only have the one.

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19Jul/140

Pulling Teeth and Loving Uncle Bill

Fred is downstairs watching a DVD. Lisa and Ruby have gone shopping leaving the men at home. After shopping the two are off to Dingle, the girls are gathering and Ruby needs to be chauffeured to Ali’s door. Lisa suggested that she get the bus at 6pm, a suggestion that was met with a look from Ruby that ironically could only be matched by her mother. Fred is happy with the peace; it has been a long week.

It has also been a great week. The man has been having lie-ins in the morning and has also managed to escape going to the library. Between me working and making a trip to Cork he kept silent, hoping against hope that I’d forgotten or the trips were over with for the summer. They are too important though, he needs to put in the extra hours, so come Monday afternoon it will be back to the desk. That’s a news story that I won’t be breaking until about 3pm Monday afternoon, best to keep the peace for the time being.

Once Fred gets something into his head it stays there. Lisa calls them his figaries and getting his back up about something planned is one of his biggest. If he’s looking forward to an event such as a trip to Dublin everything else will be forgotten, it will be tunnel vision until we get in the car. So much so that the school had to ask us not to tell Fred about any plans we make, as he won’t do school work from that day. I forgot this rule in his last week and was reprimanded at the end of year meeting.

When it’s something that Fred does not want to do he’ll just go on and on about not doing it. Such it would be with the library visit. I could almost guarantee that his last words of the day before going to sleep would be...

“I’m not going to that library Dad, I’m sick of it.”

To which I’d reply,

“Well if you don’t go there’ll be no breakfast in the morning,” or some equally pointless, idle and unenforceable threat.

I’m not sure what happened last night in the bedroom but Fred was back downstairs less than an hour after going to bed. The usual, I heard the door open and the angry steps on the stairs, plus the breath fuming out of Fred’s nose. Soon he was the door of the TV room, arms down by his side, fists clenched and nostrils going like one of Granddad Jimmy’s prize bulls...

“I’m sick of that Mummy,” was all he got out.

His mother wasn’t far behind him...“There’ll be no toy store tomorrow,”

Fred having planned a trip with the present he got from Uncle Bill.

“Oh ya?" was the reply to that threat.

First thing this morning though Fred was out of the bed and up to his mother. Peace was negotiated and toy store rights were reinstated. So not only is Fred now watching a DVD he’s also got a brand new Spiderman sitting beside him.

All worked out in the end.

Uncle Bill and Chrissie arrived on Wednesday for a two night stay. Fred was delighted to have his Uncle Bill down. So much so that I was pushed aside. When I came in from a visit of my own Fred was cuddled up to Uncle Bill on the couch, barely raising his head when I walked into the room. Later the three of us were heading to the off-licence to get wine for the dinner. Fred told me to stay; I wasn’t to come as it was just him and Uncle Bill. As I got into the car Fred tried to stop me but we compromised with him sitting in the front. In town we had to park up so Bill could go to the cash point. Walking down the street Fred held Bill’s hand, not even looking at me, just enough to ensure I was a step behind. When we got to the off-licence I went to hold Fred’s hand but was pushed away. Very upsetting for the man who’s usually at the centre of everything Fred does. In the off-licence Fred was sticking to Bill like glue. In truth it was lovely to see, every boy should have an Uncle to idolise.

Over the next couple of days Fred was in heaven. The family minus me went for a drive around North Kerry, stopping in Listowel for lunch. Fred of course got his favourite chowder and chips which he demolished. It was a very full boy who came home to me later in the afternoon. Not so full though that he wasn’t up for a trip to the beach. I was allowed go but had to sit in the back again. We went to a quiet beach with lots of shells and rocks. It really was a bit of heaven. Fred dug around in a fresh stream, collecting shells and rocks while the two adults sat back in the sun, keeping an eye on the man. We spent about an hour there, all three of us getting nicely tired in the afternoon heat. Once it was time to go I offered Fred a piggy-back to the car and he gladly hopped up on my poor back. Dad was useful for something again. Just as we got close to the car Fred put his head to me ear and said, “I love you Daddy.” All hurt instantly forgotten.

Ruby had come home in the meantime so it was a full house sitting down for dinner that evening. A precious moment in our great summer. Fred sat up next to Uncle Bill. At one stage I watched him and he was copying every movement that Bill was making. Copying him eating and drinking, cutting his meat or buttering his bread. He’s a funny boy is our Fred.

When Bill and Chrissie left on Friday morning the upset was lessened by the present of spending money for the toy store. In a way it made up for the tooth loss that Fred had forgotten about on the day Bill arrived.

I was upstairs and came down to make Fred’s lunch. He wasn’t in the front room or kitchen and when I called him the answer “one minute,” came from the bathroom. That is usually a sign that he’s up to something, usually nothing good. I knocked on the door and Fred opened it a small bit. He was holding a blood stained cloth to his mouth. “What’s going on?” I asked, pushing the door in a bit more. Fred stepped back to allow me in fully. The sink was covered in blood and there were a couple of cotton buds full of blood lying by the taps.

“Ah my tooth was hurting me so I took it out,” Fred said through the cloth.

He had been complaining about a sore tooth over breakfast and obviously decided to take matters into his own hand. The tooth itself was on the sink, a baby tooth but a fair sized one, not unlike the fair sized hole in Fred’s gums.

“Now I can get money from the tooth fairy for the toy shop,” Fred said.

“You’re a bit old for the tooth fairy now,” I said, cleaning up the blood.

Within an hour he was back out playing and forgot completely about the hole in his gums. The tooth fairy wasn’t mentioned again but then Uncle Bill gave him much more than the tooth fairy ever did.

Tough out is our Fred but he’s also the most gentle, loving boy you’ll ever meet.

 

 

 

 

 

 

 

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13Jul/140

A Grand Day Out

This week Fred and I were home alone.  These are the times I love, the men alone doing their own thing but also in the back of my mind is the fear of something happening. Thankfully that fear has rescinded hugely in the last year but it’s always there, somewhere. It’s not as if I couldn’t cope, it’s more the missing of the reassurance and calmness Lisa has when Fred is in seizure mode.   Also when one of us is away you want them to relax, enjoy their time and not to be constantly worrying about Fred at home.

The important thing for Fred is that he has a good time and so with the girls leaving for Dublin at 6am on Thursday, the two of us had a lie-in until nearly 10am. A lovely start to a lovely day. The two of us had a leisurely breakfast and afterwards Fred played with his toys while I went to my office. I’d decided that if the girls were off enjoying themselves the boys could too. With this in mind I promised Fred we’d go out to lunch.

Something he rarely gets to do.

At about half one the two of us set off. We drove across town, parked up from the bank and did some bill paying. Coming out from the bank I decided we’d walk to The Grand Hotel where I knew they did good chowder, Fred’s favourite. It was lovely to walk through town without a bother, saying hello to people and being part of the lunchtime bustle. In the hotel, a lovely old one in the centre of Tralee, Fred picked a good table and we sat down. The waitress came over to give us a menu and Fred put up his hand as if to stop her...

“Ah, excuse me,” he said, “Can I have some fish soup and chips?”

She looked at me; I nodded but whispered for them to be small portions. She wrote it all down.

“And some mayonnaise,” Fred said as she wrote, adding a “please” when she looked at him.

Soon our lunches came and we both tucked in. Though I was worried and was giving him the odd swipe of the magnet, it really was a lovely lunch. People were coming over to say hello, Fred telling them what he was having, if he was distracted long enough to talk. We spent about an hour there, eating and chatting without a care in the world. Afterwards we walked back across town, back to our car, Fred full of ‘fish soup’ and me just delighted everything had gone so well.

Then it was time for the library.

At Fred’s end of year meeting with the teachers they stressed the importance of keeping up his schoolwork, keeping his eye in with reading especially. Knowing that telling Fred he had to do homework during his holidays wouldn’t be easy I came up with the idea of rolling it in with library trips. Fred likes going there and the change in location from home might just take the ‘home’ out of ‘homework.’ Of course I’ve had to make concessions such as first the library and then a trip to the beach or as on Thursday first lunch then the library. There was a bit of trust on my behalf with that one.

The library trips have proved successful though. He’s knuckled down to the work, still capable of drifting off but he’s being doing good work. Teaching Fred requires patience, he can forget something as soon as he learns it but the concentrated time spent in the library tends to keep him focused. Importantly too I have to keep my patience, not easy at times but we’ve got there most days.  Tuesday was a tough day, Fred wasn’t recognising words we’d learnt on Monday and I think the librarian must have picked up on my breaking  patience...she brought over a card game to help with word recognition. When leaving I handed it back but she told me it was ours to keep, which was a lovely gesture.

After Thursday’s trip we went home. Both of us sleepy from the work and the big lunch. Fred deserved his lying out on the couch watching a movie. We actually did two hours of reading and word recognition so he’d put in a full shift. We got a book with a DVD from the library too, on art projects, so Fred read that while watching the DVD later.

After reading work earlier in the week we’d gone to the beach. Another place where my heart is in my mouth that something will happen but that is another fear on which I have to work. Denying Fred something out of our own fears has to stop. Lisa is way better at doing this than me. Fred had badgered his Mum into buying surfing shorts, flip-flops and a sun hat on Monday, so he had all the gear.

The two of us had actually gone to the beach on Sunday. I promised that if he could allow me to watch the tennis I’d take him later. So after Federer had broken my heart once again the two of us set off. My courage wasn’t enough to go all the ways down the beach but Fred paddled in the river, kicking and splashing his way around. On Monday I was brave enough to go to the water’s edge and we repeated this on Tuesday. Watching Fred paddling up and down through the gentle waves was lovely. He so loves the beach, as do I, and seeing him do what any normal kid does is always great. On Tuesday evening he said he was going to go swimming; now at that I had to draw the line.

On Monday evening Fred went up to change out of his beach gear when we got home. After dinner I went up to the room. There on the wardrobe door Fred had hung his new shorts and sun hat. Neatly placed by the wardrobe were his flip-flops. All ready for the next day but also tidied away with pride; his favourite clothes for his favourite place.

Compared to last week Fred has had a return to normality these last few days.

We’ve gone back to the beach, had fish soup in a restaurant and even done some homework.

The girls came back exhausted Friday evening, just in time for me to go off to Cobh for the night. Needless to say I came back Saturday even more exhausted and today is going to be a traditional day of rest for us.

Back to the library tomorrow for Fred.

So will begin another week of fun...

 

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6Jul/140

A Visit From The Past

On Monday Fred and I drove Ruby to Dingle. It was Ali’s birthday and the girls were having a party. On the way out we picked up Ruby’s friend Ella and Fred was happy to be escorting the girls. He was quiet though, usually he’s full of chat and Ruby will inevitably tell him to turn around, to leave them alone. Typical older sister, younger brother despair.

After dropping the girls the two of us drove over the Conor Pass on one of those warms sticky days that summer is all about. As we drove back along the straight road to Tralee Fred was still quiet. Again I asked him why he was so and he answered that he was looking at things out the window. The things he began to recite and after a long list he went back to looking. It worried me that he was so sluggish, not exactly himself though he claimed all was ok.

About 5pm we got home and Fred wanted to go for a walk around the estate. I gave him a swipe of the magnet and off he went, looking for something to do. After a few minutes I went to check on him, he was doing fine, balancing on the kerbstone and he waved over when he saw me. It’s such a feature of the little man’s life having his parents constantly checking in him, that he’s became used to it. I went back inside to start dinner.

A couple of minutes later I saw Fred running across the courtyard to the house, a worried look on his face. By the time I got to the door he was bursting through...

“Dad, I got the confusion, bad confusion,” he said when he saw me.

It must have been bad for him to try and make it home so quickly. He took his medicines, I swiped the magnet and we settled down on the couch. He was jerking but the constant swiping seemed to ease it. Lisa came home shortly afterwards and took over as I had work to finish in my office upstairs. When I came down about an hour later Fred had had a seizure, the usual tonic clonic and was asleep in Lisa’s arms. It had only been six days, the shortest gap in a while, a long while.

He didn’t stay asleep for long as is the normal these days but when he woke he wasn’t hungry. Lisa got him back to sleep again but he woke about an hour later. This time he picked at some dinner, not much and fell into his mother’s arms once more. Then he had another seizure. This was heartbreaking for us, a short seizure free gap and now a second one; this was the sort of day we hoped was behind us. Fred recovered quickly, enough to start watching a DVD but about 9.30pm he went up to bed with Lisa.

I was watching the World Cup and at a break before extra time I went up to check on them. As I got to the bedroom door I heard Lisa tell Fred that Daddy was downstairs and would be up soon. Back down I went and turned off everything, Fred’s sleep was the priority that night.

In bed Fred cuddled up to me and Lisa said to call if anything happened. The third seizure broke through about half an hour later and Lisa took over again. This really was like old times. Fred had three more before 1am when Lisa got his morning medicines into him. Five hours earlier than usual but in these times we try anything. It worked and Fred fell into his deep sleep.

Of course Fred managed another one the next morning, just before he woke. He didn’t want to stay in bed though and came downstairs a bit later to take up residence on the couch. There was a cloud over our house that day, we were worried that the cluster wasn’t going to stop and we were very down that Fred was going through this all over again.

The progress he’s made over the last few months has all been down to keeping the seizures at bay. The school and everyone else has being keeping Freddie moving forward, gaining from the freedom he was enjoying. Now in one day it felt like everything was being taken away again, as if the good times were only a tease, epilepsy playing with us again.  Watching Fred sleep his way through a day once more, lifting his head just to look around or waking from time to time to watch simple TV programs was heart breaking. Those programs which he’d stopped watching, ones that aren’t the least bit taxing, and the ones we hoped we’d never see again.  It was all back with a bang. Even Lisa had a Stesolid on hand, just in case; a drug we haven’t had to use in months.

Ruby came home and Lisa went out for a walk. The house was returning to normal. As I was pottering around out the back, getting a few jobs done before more football I heard a crash in the kitchen. Looking around I saw Fred’s legs sticking out from behind the sideboard. He must have known I was out the back and was following to see what was happening. The seizure must have caught him totally off guard, just as he was coming into the kitchen. Ruby and I picked him up and got him back to the couch, again just like old times.

That last one was epilepsy saying goodbye, the last kick as it left the house. Fred woke not long afterwards and watched a DVD before going to bed. The next day we had a visit from his Aunty Ella and Dan but Fred wasn’t interested, he was zonked from two days of activity. He had some egg and toast around midday which was the first food he’d eaten since Monday evening. Progress in the circumstances.

So that was Fred’s week. Only yesterday was he really anyway like the Fred of previous weeks. The two of us went to the library in the morning, part of a plan we’d devised to keep Fred’s reading progressing. He read well but nothing like he’d been doing with Ms O’Se the previous week. The idea of the library is the choice of books and an environment where reading is what everyone is doing. We’ll try it again though, yesterday was a partial success.

Why did he have such a major setback? Well Fred never does things by halves that much we do know. Was it that for some reason his meds failed, the levels in his system dropped, leaving a cluster through? We can only hope that it was a temporary setback, that the VNS will take over again and the great gains of recent times weren’t just a flash in the pan.

Only time will tell. For now we all have to get our trust back, trust to leave him wander alone again, trust to do the things that were becoming normal for us to do. Yesterday Lisa took Fred shopping with her and all went fine. Today Fred wants to go paddling, weather permitting we’ll give it a try.

Our hearts will be in our mouths but we’ll give it that try.

 

 

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