Sunday 19 February 2012

Magical Words to Hear

The sun is shining, Freddie is in the kitchen putting the chat on Ruby’s friend Tara and Optimus Prime is trying to save us all from the Decepetrons. Freddie was happily watching the Transformer’s movie when Ruby and Tara came back from walking Muttley. For some reason or other he has a thing for the ladies and Tara is the lucky one today, well he did lend her his runners so she could go on the walk so she’s doubly lucky…..

All this family serenity comes after a hectic end to a normal enough week for us. Ruby was on mid-term and was off on sleep overs which kept the rows with her mother to a minimum. It didn’t keep the exclamations of “that child!” to a minimum though. “That child!” comes from her mother every time she walks into a room where Ruby has just been. Ruby, in the style of any normal teenager, tends to lay waste to any room she’s in leaving her mother exasperated in response.  Usually when I hear “that child” I know its time to turn up the TV or become even more engrossed in my newspaper until the storm blows over. A benefit of half-term too was that I didn’t have to be in Dingle till ten each morning so a week of eight o’clock rises was more than welcome, back to seven o’clock tomorrow though. What was preying on our minds all week, outside of the daily worries over Freddie, was an appointment with his neurologist on Friday. The trip to CUH always makes us nervous in case of even more bad news of more of the same, which as parents we’ve had enough of. When we hear increase in meds, adding new meds or staying as we are it just fills us with a feeling of real helplessness and self-doubt. Are we doing enough? How much more of this does Freddie have to endure? Will this nightmare for him ever end? Lisa and I know there’s no quick fix solution here but our wish for him to have a normal life couldn’t be stronger.

This appointment was going to be a big one not only because of all the recent hospital visits but also because finally his doctor was in possession of the results from all the tests done in the autumn. Ruby came with us for a change and we set off on our little journey in hope but with fear too of what might arise. Arriving fashionably late we were soon sitting with the junior consultant giving details of Fred’s recent history. After she left and what seemed a never ending wait the consultant finally arrived in with apologies for being late. Considering we’d been over an hour late ourselves apologies were dismissed and we got down to business. Usually these meetings are fairly drab, more of the same, keeping taking the meds and see you in three months sort of affairs but this time Dr O’Mahoney strode in confidently as if she had something to say. She had. After reviewing everything she was putting Freddie forward as a candidate for surgery. Normally being told that your child has to have brain surgery would be cause for despair but this isn’t normal circumstances. Freddie can’t go on like he has for the last few months spending all that time in hospital nor like the last few years have been for him with his restricted life.

Of course there is a long way to go yet, a long way to go before it can even be confirmed that he is suitable for surgery. He has to have a PET scan which should show where the imbalance lies in the metabolic structure of his brain. After that has been determined and a name put on it he has to undergo further video telemetry to confirm the diagnosis. Video telemetry is an EEG where the electrodes, about 27, are glued to his head, seizures are in induced and the results filmed. He’s had this done before, it’s got us to this stage, but it will have to be repeated to confirm the PET scan. If both tests correlate then it will be surgery for sure. For this he’ll have to have his skullcap folded back, the electrodes placed directly onto his brain and have everything covered up in a turban like dressing containing the computer equipment. Just as well his Punjabi is up to scratch. Back in the ward they will do further video telemetry to finally pinpoint the part of the frontal lobe to remove. Yes remove. As soon as this is confirmed he’ll go straight to surgery and hopefully begin the road to recovery. This whole process will take up to eighteen months, it will be a long eighteen months with much upset along the way but if Fred gets his normal life back it will be all worthwhile. Dr O’Mahoney went on to explain how so much of what has been happening recently, seizure clusters, the temporary paralysis, quick recovery between seizures etc is all indicative of frontal lobe epilepsy and as medicine isn’t solving anything surgery is our best option. She also believes the way his seizures have been going that the trouble is at the edge of the frontal lobe, a good thing when it comes to surgery. At the edges is away from the parts which control speech and limb movements. Also being at the edge would explain why his seizures spread so quickly throughout the brain and why it’s been so difficult to diagnose the type of epilepsy the little man has. All this has yet to be confirmed and is as yet qualified speculation at best. In the meantime more adjustments to his meds but at least it feels that these are now being aimed at something specific not just shots in the dark.

For the first time in three years we left an appointment feeling positive, it was a nice change. We headed for the car and back to Tralee. On the way Fred watched a DVD, Lisa and I discussed all we’d just heard and Ruby listened to her music. Life felt a little clearer for once. There’s a line Frank Sinatra sings in “That’s Life” one of my favourite songs and it goes “ You’re flying high in April, shot down in May” and I always think of it with epilepsy. Just when you think things are ok it kicks you in the teeth. About twenty miles from Killarney and now pitch dark Freddie keeled over. There was nothing for us to do but pull into the hard shoulder and let him go through it. Thankfully it was over in less than two minutes. We quickly rearranged things, Ruby coming up front with me and Lisa lying Freddie out in the back, his head on her lap. Off we set for Tralee hoping that we’d make it without further drama. Of course the tough little man woke up and stayed conscious all the ways back. So good was he that we headed to the house instead of the hospital and soon he was sitting up having spaghetti tossed in chicken and garlic with a slice of toast. After that he had some olives, sliced cheese and an apple. Some little man. I phoned the hospital, because of all that’s happened we knew that a visit would be inevitable, explained the situation and they told us the come over when ready. So Lisa packed the bags and about 9PM I drove them over. The sight of him walking out the door, DVD case in hand, saying goodnight to Ruby was heartbreaking. He knew what was ahead and he walked out to face it, head held high, John Wayne style…. “Get down of your horse epilepsy and put up your dukes.”

After they settled in the room, I left to go home and look after Ruby. Soon after the doctor arrived and put in the line, ready for the IV Lorazepam, the drug that helps stop the clusters. He looked so young Lisa said “how old are you? Sixteen?” I saw him the next morning, Doogie Howser’s kid brother! Good doctor though. The outcome of all this was great; he didn’t need the Lorazepam at all! He had two more seizures in the early morning but spread apart and not big ones. When I arrived at 8am the two were asleep after a relatively peaceful night. The rest of the weekend was an uneventful one and we all came home this morning, a beautiful spring day, without a doped Freddie in tow. Now he’s moved into his armchair by the TV having a dinner of….spaghetti tossed in chicken and garlic with a slice of toast. His new favourite.

What really made today special was something Lisa said to me this morning, words I never heard her say in seventeen years of being a couple….”I’m wrong and you are right, my love.”  We truly do live in wonderful times.

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