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

20Jan/130

Dublin’s Fair City

Sunday afternoon in Ballyard, it’s a week today since we went on our trip toTemple Street. What a week it has been, full of emotion, tears, laughter. It doesn’t seem that so much could happen in seven days but it has and we’ve come through it. The household is adjusting to us all being back home again, stepping on each other’s toes, getting back to normal. We all slept in till gone half ten this morning and I think that was badly needed.

So we headed up toDublinlast weekend. Lisa, Freddie and I did the long drive together, leaving Ruby behind inTralee. Lisa’s wonderful cousin Jill came round to stay with Ruby and to take her to school Monday morning. The two have a good close relationship and enjoy each other’s company. The drive toDublin, the farthest any of us have been in a long time, took about four hours and soon we were trying to find our way to the hospital…

As we got into the city the satnav on my phone stopped working and I kept going, in what I knew to be, the general direction of the hospital. Lisa started calling out directions a friend had texted to her. I didn’t need them at that moment as I knew where I was and I said so. Anyone who has driven with a close partner in such a situation will appreciate the scene. As we were going down the quays, Freddie decided he needed a pee, badly. All we had were the used coffee cups from the journey. So there we were, me driving in traffic, Fred kneeling over the cups, Lisa telling him to hold it while she poured a full one out the window, luckily it was dark and raining. Then I came to a spot where I no longer knew where to go and so I asked Lisa to read out the directions again. “I thought you didn’t need any directions...” Oh the pleasure of long journeys…

Eventually we got to the hospital, the satnav had started again. Its lovely old building from the outside, a converted old convent and a children’s hospital for over a century. We checked in and went up to the ward. Both Tralee andCorkhospitals are relatively new buildings so going back to an old- fashioned smaller ward, was a bit of a change. Plus we didn’t know anyone, normally we’d have Marie or some other familiar face to welcome us. The dark wood panelled walls and high ceilings reminded me of my first primary school, thankfully there wasn’t an alcoholic red-nosed presentation brother with a cane prowling the corridors, to fulfil the memory. The staff on duty and the other parents in our room were lovely. No doubt the pressure of a stretched healthcare system affects us all and we just get on with it. There were five other kids in our little ward and for a change four had epilepsy, Freddie wasn’t the odd one out for once. It showed too that the staff weren’t fazed by Freddie’s condition, made us feel that we were in somewhere different.

The meals were finished for the day so Lisa sent me off to feed myself and to find something for Freddie. After a pub ‘meal’, I picked up a sandwich for the man and headed back to the ward. The little man was well settled in his bed, sitting up watching a DVD and being looked after. He was delighted with the chicken sandwich and the half of my bowl of chips I’d wrapped up in a napkin. About 9.30 a doctor came to take Fred’s history, a brief one for the ward as we were meeting with Dr Shahwan for the full rundown in the morning. The hospital has a parent’s wing for one of the family to stay in, converted nun’s cells I’d guess from the layout and the nurse got one for me. After the long day, I said goodnight to my two warriors and headed off to try sleep.

Of course, I couldn’t, at least only fitfully and by 7.30am I was back on the ward. Lisa was snoozing, Freddie sitting up watching another DVD. “Oh hi Dad,” he said as I put my head around the curtain. Oh the normality of these stays for the man.

The morning went on, staff giving medicines, parents waking and swapping stories. One big difference for us was that we weren’t allowed tea or coffee on the ward. A sensible enough rule considering the tight quarters we were living in and its there in the other hospitals but not strictly enforced. Here it was different. Lisa went off to get a coffee for us and the other parents but the nurse caught her sneaking back onto the ward, hands full. She was sent to the parent’s kitchen and we all had to go down to drink our coffees, in rotation. No doubting who was in charge. As I sat on my own drinking mine, looking out the window I was struck by how all new this was to us. We didn’t know anyone, I was looking out on buildings I didn’t recognise, we were meeting an expert for the first time and it gave me a sense of hope, of a new beginning.

Back on the ward, a doctor came down to take us to meet with Dr Shahwan. Up we went in the lift. This is it I thought, this is a real chance to get somewhere with Freddie and the thought made me nervous.

On the next floor a very smartly dressed man breezed past us with a team following him, issuing instructions as he went. Lisa looked at me. “That’s’ him” I said, I’d googled him during the week. He looked busy, very busy and I had that sinking feeling that maybe he was only going to give us a cursory looking over and Freddie was going to be just a name on a list to him. In the office we sat and waited. In less than a minute, he was with us.

“Sorry for that” he said, “I wanted to get everyone sorted before I met with you.”

We were reassured immediately. He closed the door behind him and I got the feeling that nobody woul dare disturb us. He was immaculately dressed. Everything was in its place. His tie was tied in a perfect knot and fitted perfectly into the collar. Shoes matched his trousers and were spotless. Jacket fitted him perfectly and not a hair on his head was out of place. This is a man who believes in perfection I thought, just the guy we need on Freddie’s case.

After brief introductions, he filled us in on what he’d planned. He intended to get everything from us and prepared us for what might be a long morning. Lisa and I were only too happy, he meant business and was giving us his full attention. What a change in direction…

“Let’s start at the beginning” he carried on, “tell me what happened that first time.”

So Lisa and I went back to when Freddie was nine months old and that dark night in November when he had his first seizure. Dr Shahwan wanted detail on everything, every last detail. Detail was what he got, every last detail of the last nine years. He questioned why we did things, how Freddie reacted, how Freddie dealt with things, medicines, medicine changes, scans,  what we’d had for breakfast on the 22nd July 2007. Not quite…

When we discussed scans, he pulled Freddie’s MRIs up on the screen.

“Now,” he said, “I’m an OCD geek when it comes to reading scans, I’m sorry but it’s the way I am.”

“Don’t apologise,” I laughed, “its exactly what we want to hear.”

He showed us how he believes there was an area of Freddie’s brain that may be operated on. That he intended to use the week ahead to do enough testing to prove it beyond doubt. A model of the brain was produced and he dissected it to show us where he believed the problem lies. Yes there was a point on the right temporal lobe where Fred’s seizures were breaking through but that was only a reaction to a fault on the left. A new perspective. With his exhaustive questioning, not physically, just in detail, he got us to describe the aura Freddie gets when he feels a seizure coming on. ‘The Confusion’ as its known in our house, another of Freddie’s wonderful descriptive terms. Dr Shahwan saw this as being very significant, an indicator that the seizures were arising from the fault in the left temporal lobe before setting off the right. If Fred wasn’t getting ‘the confusion’ Dr Shahwan wouldn’t be as hopeful of surgery as a solution. In fact, he saw it as crucial. This was all new to us and gave us such hope. He spoke of how he wanted a new PET scan done, the one inCorkhadn’t been done correctly and that he’d pull in favours at the Blackrock Clinic to get one done, without delay. Once he’d done the video telemetry and read the output, Dr Shahwan wanted the PET done, to his specification. While we were talking, he was taking notes and giving Fred tasks to do. This was his way of assessing Fred. Fred drew Godzillas, circles, triangles, squares, wrote his name and notes were taken. After nearly three hours we were done, he’d got our past and mapped our future.

Dr Shahwan tempered his high hopes with words of caution, as nothing had been proved yet. However, he assured us that there would no longer be any delay in getting a resolution to Freddie’s problem. Lisa, Freddie and I headed back down to the ward, the parents delighted for the first time in years. The man had given us a feeling that he knew what had to be done, how to get it done and that he wasn’t going to let up until something was done.

That afternoon I got a call from Con Flood. He was nearby having just finished work and wondered if he could do anything for us. “Just come in and visit,” I replied, knowing that a visit was just what was needed and with the week ahead, it may be the only chance. Freddie and Lisa were off at the bathroom and I didn’t say anything when they returned. When Conor walked in Freddie just beamed with delight. He shot up on the bed, clapping his hands with glee, a smile as big asCorkharbour across his face. Conor was hugged and kissed and made sit down beside Fred on the bed. Con, too, was overcome by the greeting; it really was beautiful to witness. It may have been over two years since Fred had seen Conor but his love for him hadn’t diminished. We spent the next couple of hours joking and telling stories until the doctor came down from Dr Shahwan’s office. It was time for the video telemetry to begin and they wanted Freddie upstairs to have the sensors glued onto his head. It was a perfect time for Conor and I to slip away. I needed to get on the road toTraleeand Conor needed to get home. We walked them to the lift, Freddie gave us big hugs as he said goodbye. The sight of the little man heading into the lift, holding his mothers hand was a tough one for me but this was the beginning of a necessary week of testing. Much work lay ahead but after that meeting in the morning we had some hope to go on.

Conor lead me through the city, no need for the satnav  and I drove off back down the M7 to my darling daughter. When I got home Jill was still there, looking after Ruby who was lying under a blanket on the couch, TV on and Facebook on her laptop. Just as I remembered her. Jill left soon after getting the full update from me, Ruby and I settled down for the evening. I was tired after the driving and not sleeping so it wasn’t long before the two of us headed off to bed. InDublinFreddie was been kept awake, some medicine was taken off his dose as well, all in an effort to bring on a seizure. This time they had a dedicated telemetry room, with sensors on Freddie’s head in places he’d never had them before.

I rang about 11pm. Freddie had a seizure, a good big one but nothing else had happened. He was awake again, watching a DVD.

In the morning, I rang Lisa after dropping Ruby at school. Fred had gone to sleep about 2am but no more seizures had broken through. Typical, when you want them they don’t come.

Throughout the day, Lisa was visited by numerous members of Dr Shahwan’s team, including Dr Shahwan himself. More questions and history for Lisa to go over but she did us all proud. Dr Shahwan was happy with the quality of the readings so far but wanted more seizure activity. Fred would have to produce. Tuesday evening and no activity, Lisa had to stay awake with him, be with him all the time. There was a relief nurse provided who gave Lisa the chance to go for a break but knowing the wonderful woman that she is hardly left his side. They tried sleep deprivation, keeping him awake for hours at a time. At one stage Freddie said “my eyes are burning.” The poor little man, the things he has to go through.

Wednesday and no more activity. They tried medicine changes again. No joy. Lisa met with the neurophyscologist to discuss Freddie going back to school and his mental development but she will need a week with Freddie for a full assessment. More time inDublin, if we have to move there it wouldn’t matter at this stage, we feel we’re getting somewhere at long last.

On Thursday Fred had more visitors. Conor and Cathy came to visit, more joy for Fred. They brought mince pies, Cathy’s sister had baked them specially for the man, she’d read somewhere that he liked them. Such a lovely thought from someone we’d never met. Fred loved having them around but couldn’t get his brain to remember Cathy’s name. As he told me on the on the phone: “Conor was here with his wife.” Later on his favourite cousins came to visit. Paul and Kieran had made it in to see the man, he was over the moon. They also brought him a present of some dinosaurs and a Transformer. It really was a wonderful day of visits for the man. In a way it was a great week for the Fred, all he had to do was sit in bed, watch dvds and get visits from his favourite people. In between, trays of food were brought in, big plates of chops, chips and veg were sent back licked clean.

All great but no seizures.

Thursday was to be the last day of telemetry. Dr Shahwan didn’t want to keep us in if nothing was happening. All day Lisa had Freddie jumping around. They cut back on his meds again. By 2am, nothing had happened but he was full of jerks and twitches. At 5.30am they woke him again. The poor man. Within half an hour they kicked in. Fred had four big seizures and a few small ones by 8am.

Success at last.

Dr Shahwan was delighted when he came down later and they intervened with some Medazalem to stop the cluster developing.

The week was finishing in style. The two could go home Saturday if all was ok.

On Friday evening Ruby and I drove up to collect them.  We arrived inDublintoo late to go to the hospital so we went straight to Conor and Cathy’s home. It had been a while since they saw Ruby so Ruby lapped up the praise heaped on her. We stayed up late, oh, it must have been at least 11.30, drinking wine, eating pizza and laughing. There has been quite a bit of laughing this week, a refreshing break for us all.

On Saturday morning I was up at 7am and off to the hospital. A familiar line for me to write. I asked a nurse where was Freddie and she gave directions, no need for a surname, she knew who Freddie was. The two were asleep when I poked my head around the curtain. I sat watching them for a few minutes until Freddie woke up…”oh hi Dad” he said, rubbing his sleepy little eyes.

The doctor gave us the ok to go home at about 9.30 am and by 10.30 we were back at Conor and Cathy’s. Ruby was up at this stage and Cathy was making breakfast. More laughing, more and more laughing, life felt great. About midday, the ladies went off on a shopping trip toLiffeyValley. In truth, I think Ruby did the shopping while Lisa and Cathy had a coffee. The men stayed at home, all three cuddled up under a blanket, watching TV and chatting. Freddie was in heaven, his Dad on one side, Con on the other, a lovely way for him to pass a Saturday morning.  Dougie the dog sat at our feet. By the time the ladies returned we had to go, the road toTraleewas beckoning.

We said our goodbyes, not without a few more laughs.

The week had turned out to be a great one in the end. Dr Shahwan and his team gave us the impression that they know how to help Freddie. The visitors to the hospital had made the week shorter. For Freddie seeing his cousins was a really special treat and it was very thoughtful of the boys to make their way in. Conor and Cathy looked after us like only they can.

The next few weeks are going to be busy for us, with a lot of ups and downs no doubt. At least we feel we are getting somewhere, not struggling around in the fog  without much hope.

Now its Sunday evening, our first full day in over a week.

Freddie is by my side and I wouldn’t change that for the world.

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Posted by John Verling

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