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

26Oct/130

A Call From Dr Amre

Fred in Costime

Fred in Costume

 

Our week began with a call from Dr Amre. No sooner than I’d sat at my desk Monday morning when my phone rang, a Dublin number. In his usual style it was a relaxed, yet business-like call and straight to the point.

They had the surgical consult the previous Thursday and Amre wanted us to come up to discuss the outcome. 10am Wednesday morning, almost exactly two days away. That seemed like an eternity because of what the meeting would entail. What were they going to tell us? What had they decided? What was it going to mean for Freddie?

Lisa was on duty at the school, I thought if I called her she’d probably be beside herself thinking of the potential outcomes. Best to wait till she came home and at least we could share the worries. Ruby was off school, a bad cold but trying to fight it as she had a basketball match in Galway on Thursday. She was downstairs so I went to tell her. I wanted her to have the choice of coming with us or arranging a sleepover for Tuesday night. We were going up Tuesday to be at the hospital for 10am Wednesday. She sensed, I think, that I was beside myself over the meeting but thought it better that she go to school the next day. No point in us dragging Ruby away when she can get on with her life as best as she can. A text to Conor and Cathy was answered with the open doors invitation. The Inchicore home from home would be the perfect place for us to get set for the Wednesday morning meeting.

As soon as Lisa and Fred came home I went to tell them. Funny how in that few seconds before you give someone a momentous piece of news how normal their life seems. You know that their life is going to alter completely in the next few moments but for now you’re almost watching them from afar, getting on with everyday life, as in a TV documentary. For that brief period of time the power you hold is immense.

Lisa was tidying up, settling Fred in back home and caring for her daughter. The true mother. Then I told her about Amre’s call. The look of worry on her face as she thought he’d given me the answer, then the assumption that it was bad news as she realised he hadn’t and then the realisation that we’d have to wait forty-eight hours for one. Lisa went through the gamut of emotions in a matter of seconds.

So for the rest of the day Lisa and I were fairly useless to anyone but the kids. We cooked, cleaned, tidied, bickered, cuddled Fred under the blanket and generally did anything to get through the day. It was nice having Ruby home, to complete the family and give us something else to concentrate on. Monday seemed like the longest day but we got through it and the glass of wine in the evening helped.

Fred had his new costume to occupy himself and the news that we were going on a holiday to Dublin. On Sunday afternoon Freddie and I went on a drive. Recently I’d slipped back into old habits of not doing things with Fred. So when Lisa was going for a run, we went off in the car. At the off-licence I treated myself to a beer, for later, and Fred got a sparkling water. Fred wanted lemonade and I nearly cracked but he settled for the Ballygowan in the end.

Off we drove around Tralee, sharing the water and chatting about what we saw. After a while Fred, recognising the road we were on, asked if we could go to the beach. Again something we hadn’t done for a while. The two of us were laughing and joking along the way, I reproached myself for nothing doing the trip more often.

At the beach the tide was in so we couldn’t find the shells for Mummy. Fred suggested we find another beach but that too was empty of Mummy presents. Back in Fenit I spotted the small shop was open and we stopped to get milk for Lisa. As we walked back out, Fred noticed a display of Halloween decorations. While he looked at it I saw they had skeleton costumes and they had one in Fred’s size. Too good to be true and, to add to the miracle of Fenit, it only cost €5.00, all I had in my pocket.

What a find...

On the way back we found a beach that had shells and lovely flat stones, perfect for Mummy. At home Fred tried on the costume, it fitted perfectly but the mask was truly scary. Like a ski mask it went round his head and seemed to change his appearance completely. Our Fred went to Freddie Kruger in a second. Ruby and I were genuinely disturbed.

The costume was packed in its own bag Tuesday afternoon as we prepared for Dublin. Fred wasn’t going to miss the chance to show it to Conor and Cathy. That and a plaid shirt Lisa had bought him for the journey...

“Look Daddy, I’m just like you!” exclaimed Fred when he tried it on.

In Dublin, Cathy was chatting to us in the kitchen and turned to answer Fred’s call. She jumped with fright as he’d put the costume on, ski mask and all. It was scary, especially in the half-light of evening. Conor was late back and Fred went out to the garden to see if he could spot him and to see if the costume glowed in the dark. Con was genuinely disturbed by what he saw when he came home and Fred was delighted. The gnawing away at our stomachs that the meeting was doing to us was temporarily forgotten in the fun we had Tuesday night.

Thank you Con and Cath.

Wednesday morning and we’re at Temple Street by 9am. Part of the deal was breakfast in Freddie’s favourite cafe, down in the basement. As it was a treat he was allowed have a rasher, hash browns and toast, all washed down with countless cups of water. By about 9.45am Lisa and I just couldn’t settle, so off we set for the third floor. I can’t describe what we were going through, worry, anger, upset, nausea, the heebee geebees and more besides. This was to be the most important meeting of our lives, Fred’s future was to be mapped out and that of the family.

So no pressure Amre.

In Amre’s office there were four chairs. One each for Lisa, me, Amre and Cathy Madigan. A small room, it was once part of the convent and it felt a bit like being back at school. Without the all pervading fear of violence that I had at National School. No, this was with friends, people who cared for us. Lisa began to cry, I wasn’t far behind her, the worry was enormous. Amre and Cathy looked very worried, concerned. They thought something had happened, some tragedy had befallen us.

In a way the tears broke the ice and Amre was straight to the point. There is not to be any surgery, not at the moment. At the surgical consult the opinion was that, though they could see the atrophy on the right of the frontal lobe, they could also see that a small percentage of Fred’s seizures also emanate from the left. Dr Shahwan is of the opinion that these are mirror discharges, reflecting off the right lobe but happen so fast you can’t see their beginning. He may well be right but couldn’t prove it and agreed that without conclusive evidence the risk was too high. If they took out the right frontal lobe but Fred still had seizures, you couldn’t go back in for the left. You get one shot at this type of brain surgery; you have to be 100% certain, all day, every day. If the surgery kicked the right-hand side into being more active we’d end up with a far worse situation than we have now, without options.

Amre has the executive decision when it comes to surgery but he knew the risks were too high.

Before he had explained this in detail and before we had time to take it all in, Amre had an option on the table. In the end it may be a better option than the surgery, mid-term at least. The proposal is to insert a Vagus Nerve Stimulator. This is a battery, inserted under the flesh on the chest and connected to the Vagus nerve in the neck by a thin wire. This battery will send out an electrical pulse that, via the nerve, will calm the discharges of the brain. It is known as the pacemaker for the brain and its success rate is high. It is implanted off, switched on a month later and over a course of six months the battery pulse is increased to a therapeutic level...all done by Dr Amre with a wand connected to his computer. There will also be a bracelet which Fred will wear, that if he is feeling the confusion he can swipe over his chest, either stopping the seizure or lessening its effect.

As Aiden Dunlea said to me, the stuff of Star Trek...

While we were deflated that the ‘cure’ of surgery has been taken away, we didn’t have time to dwell on it by the introduction of the VNS. After questions, not many as Amre had covered most angles, we got up to leave. Fred will stay on medication but he will also stay on the course of getting his life back that the Temple Street team have started. The surgery will be as soon as possible and is just one day in and out the next. It will all be done in Beaumont under the supervision of Temple Street and for now we can’t wait to get started.

There were hugs and kisses for the two. Amre and Cathy have been great; they have turned our lives around in a short space of time.

Yesterday Fred came bounding in the door after school. He was giggling, he was that happy.

“Daddy, I had fun,” he declared, bag of crisps in one hand, sweets in the other.

He had been on his first school outing, a Halloween trip to the scary exhibition at the county museum. As the guest of honour they gave him the top seat on the bus, next to best friend Jayden. Afterwards they’d gone for a stroll in the Town Park. Of course Lisa wasn’t far away but he had the freedom to be with his friends, enjoy himself. Today the two of us went to the cinema, Monster’s University, Fred’s first trip there in years. We loved it and we’re going again.

None of this would have happened without Temple Street.

 

 

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Posted by John Verling

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