How Bad?

10 o’clock on a Sunday morning I’m fed, Freddie’s fed and Ruby is still in bed. Lisa is looking beautiful under her blanket watching some sex comedy with Ashton Kutcher in it. Or should that be watching Ashton Kutcher having sex as it seems that’s all he’s doing. Reminds me of my youth before I’d wake up in my lonely bed… The reality for most of us guys in our youth is fumbling shyness, probably falling for the impossible wrong girl and never telling her, before maturity brings us to our senses. No doubt it’s the same for the opposite sex but I’m not about to wander into that minefield blindfolded…..

This has been an ordinary weekend after an ordinary week. How bad? Lunch yesterday with Aiden in McCarthy’s bar while watching the Ireland Italy match was a perfectly simple treat. Time was that watching a rugby match, or any sports event in a pub for that matter, was accompanied by pints and a pack of Tayto. Yesterday it was a toasted sandwich and a cup of coffee. Tom was telling us what was on the menu and I asked him for cheese salad sandwich…

 “We do a big sandwich John which you’d need a knife and fork to eat” he said before adding dryly….”but we do supply knives and forks.”

Had to have that one. Moments like that are pretty special to me right now, a change from rushing back to the hospital or telling Aiden our latest dramas involving the Fredster. In fact it’s a while since we were able to have lunch together as I just couldn’t relax 35kms away from my boy. So a toasted sandwich, rugby and idle chat was most welcome. My mind was still preoccupied with Freddie so much so that Ireland’s poor first half display didn’t bother me too much but preoccupied is better than nail biting worry. At half-time I left to head home. Saturday afternoon and all day Sunday is the only time I have with my family these days so I had to leave Aiden with Tom and head for the hills. Listening to the second half in the car took me all the ways back to Tralee. Michael Corcoran is such a superior commentator than anyone on any channel and he’s a pleasure to listen to. Every move was clear to me and I knew exactly what was happening without being in front of the TV, such are the skills that man has. No pints and Taytos? “Who gives a bloody damn” as he once so famously said at the time of Ireland’s Grand Slam victory.

On the way back texts started coming through from Ruby. The peaceful idyllic Friday night the previous evening was shattered whilst I was out in the kitchen getting the wine and nibbles. I left the room in harmony only to come back to literally the mother and daughter of rows. What exactly they were rowing about wasn’t clear but it seemed Ruby had spoken disrespectfully to her mother. Nothing too new there but Lisa had had enough the Friday night and bit back. As a result Ruby was grounded for the weekend and the planned sleep over at Tara’s for Saturday night was verboten, as was all activity between now and her 21st. Like Red Adair I tried saving the night but with only limited success. The cold war continued into Saturday and thence the texts from Ruby begging me to talk to her mother. She knows that she can get around me easily and also knows that putting pressure on me usually works. One after another they came through….

“Please daddy can you talk to mummy?”

“Please daddy can I go to Tara’s?”

“Please daddy”

For once I didn’t respond; I knew that as soon as one was answered I’d be dragged in, doing my Kofi Annan bit this time, trying to negotiate Ruby’s release. So I drove back along the road, apparently being widened to let the oil companies in and home to the DMZ in Ballyseede, ignoring all my poor daughter’s pleas along the way. By the time I got there détente had broken out and Ruby had accepted her fate. We settled in to a night of food, TV, wine and snacks. All were safely in bed by 11.30. Who knew normal would be so welcome?

To lighten the morning I just did my Ashton Kutcher impression for Lisa to which she laughed her head off and said “maybe if you were 4 inches taller.” At least she didn’t add “and if you had any upper body muscle” which she usually does through the tears of laughter…….

Like my father before me I like these weekends when we’re all at home, they haven’t happened too much lately but we’ve got to Sunday morning with only minor skirmishes and I’m much relieved.

Again. How bad?

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.

Shattering the Stigma

Tomorrow is European Epilepsy Day. Never before have I had a direct connection with a day marking something of significance. Sure on cancer support days I think of my mother, on International Aids day of friends taken by the disease, Armistice Day my grandfather who fought in the First World War and Parkinson’s Day of a good friend busy kicking that disease’s ass! But epilepsy has come into my family home, tried it’s utmost to kick the living daylights out of my beautiful boy on a regular basis and really taken over our lives. So many other things that should be occupying my attention, even keeping me awake at night don’t matter a fig right now. Got no money in my pocket? Couldn’t care less. Did you know the economy is going down the toilet? Ditto. Haven’t been for a couple pints in well over a year and I’m not the least bit put out. Even when the Ireland France match was cancelled last night I wasn’t that disappointed, I was much more concerned that we could go another day without paying the hospital a visit.

The theme of this year’s day is Shattering the Stigma, a good one and something that I’ve been trying to address for the last few years. Epilepsy affects about 30,000 people in Ireland alone and is nothing to be ashamed of. Like all other long term afflictions all services associated with it are chronically under-funded including informing the public. There are many different forms of epilepsy, most controlled by medication while with some people like Freddie it’s really difficult to find the right medicine. Others need surgery to correct a malfunctioning brain. Yes it can seriously curtail your life at times but when you have it under control it doesn’t need to. You can drive, work, operate machinery and even run marathons. Once you know your limits, know your triggers and look after yourself then it becomes just another part of you. Nothing to hide, people don’t have to constantly expect you to keel over or hold your tongue down with a fork if you do. This sort of basic education is still lacking among the general public but hopefully days like tomorrow’s one will help lift some of the veil of secrecy surrounding the condition. Certainly I’m learning all the time and anyone who asks is always given a good rundown on Fred’s condition! There’s no quick fix for epilepsy, you are dealing with the central nervous system of which so little is known and hopefully few people will have to live through what we have over the last few years, but it is something that shouldn’t be hidden behind closed doors either.

The week just gone was a typical example of what living with epilepsy can be like. Freddie came home from hospital Sunday morning but by Monday evening we were heading back over to A&E again. Ruby and I were just in the door, a typical Monday evening tired and hungry. Fred was in great form teasing me in the kitchen and went in with Ruby to watch TV whilst waiting for dinner to be ready. After a couple of minutes that certain tone of shouting we all have  was coming from the front room, Ruby looking for help. He’d gone over in mid conversation and Ruby was holding him against her where he fell. He was soon out of it, even beckoning his mother to get out of his view of the TV, but the left side of his face was skewed upwards and his right leg wasn’t working. Not knowing what was happening we bundled him up, out the door and over to the hospital. Lisa rang the paeds dept of Cork University Hospital from the car while he went into another seizure, to be told the paralysis was nothing to be too concerned about, it’s normal enough in frontal lobe epilepsy, which we know Freddie has. The focal activity of the seizure can have these temporary side effects which quickly wear off but seeing him like he’d been fish-hooked was upsetting. The ghost of Giant Haystacks was in action there or so it looked.

By seven o’clock he’d had a total of four and they quickly gave him the Lorazepam, the old faithful drug, the one that knocks him for six. However despite everything he was sitting up on the trolley when they wheeled him up to the ward half an hour later, tough little fecker that he is! By now the legs had come back to him and his face was getting its shape back again too. In his room he settled into watching a DVD, something quiet, and munched on an apple having missed his dinner. The nurses brought him a slice of toast and Lisa a cup of tea. ‘Flap over’ as my father used to say and I knew there was little left for me to do cept go home and feed Ruby, the poor child having been abandoned earlier in the evening.

For the second time in four days we’d been through it but Fred’s resilience carried his family over it all. Home he came again Wednesday morning as if nothing ever happened, just a little sleepy from all the drugs. When we were going to bed that night he said “I’m home again Dad and not going back to that hospital.” Said with determination too, the little man!

Right now he’s watching an Austin Power’s movie laughing his little head off at all the inappropriate bits but I’m not complaining, I have my little boy home.

The Sunday Night Dreads

At the end of a weekend you always like to feel you’ve done something with the time given. Whether you’ve lazed around doing feck-all as planned or walked Mount Brandon on Saturday and climbed Carrantouhill on Sunday at least having a memory of something done is good. Unfortunately for me I have to work most Saturdays and end up Sunday evening wishing it was Saturday again and another day off to look forward to. Adding in the usual Sunday night dread of Monday coming, a throw-back to school days no doubt, can make this an evening full of wishful thinking. Tonight is no different. Freddie is beside me digging into a meal of chicken, wraps, sliced cheese, apple quarters and a cup of tomato soup. Of course Fred is a man of taste: the cheese is emmental from The Little Cheese Shop in Dingle and the soup is Cully and Sully’s Creamy of Tomato and Basil no less. He’s funny with his food, if he gets a taste of something he likes he’ll eat it over and over again for weeks at an end. A substitute won’t do, if he’s not sure something is the real McCoy he’ll sniff at it and if it doesn’t pass the smell test it’s rejected. This current combination has been on the go since at least last summer. We reckon its far better for him to be eating than just picking at his food. Looking at him now, he’s lining a wrap with soup, cheese and chicken then demolishing it in seconds flat. Man vs. Food wouldn’t get a look in.

Yesterday evening I wasn’t so lucky…I was sitting on his hospital bed whilst he slept, waking occasionally to see what was going on around him with no interest in food. We had to take him over again on Friday evening less than two weeks since he was last in. It wasn’t too dramatic an evening thankfully for him and he was sitting up eating an apple when I left at 9pm. The shot of Lorazepam had to be given during the night however as he had further two seizures after falling asleep and this drug always takes his appetite for the next day. It also wrecks him and he usually sleeps much as possible the next day. Having said all the he did wake for a good while Saturday evening to watch some DVDs and share some of my chips from the restaurant. But it was the same old routine for us… me leaving Lisa and Freddie at the hospital to go home to look after Ruby; that now familiar early morning trip over to the hospital with flasks of fresh coffee not knowing what I’m going to find when I arrive.

As always the care and love we get from the nursing staff is wonderful. This time I noticed that they all looked tired and they were. All these cutbacks and early retirements have left the wards really short staffed. At times this doesn’t matter but when they are busy the staff are really, really stretched. As one nurse said to me ‘I don’t know why I do this anymore.’ To have someone who does their job so well say something like this is really indicative of the direction our public health service is going. Ticking off your best staff isn’t a good way to improve the health service Minister.

The children’s ward was packed with kids of all shapes and sizes. As the porter was wheeling Freddie up from the A&E a Down’s syndrome kid in a wheelchair was coming down the corridor. He pulled the ventilator out of his mouth;

“Hi George” he shouted, happy to see the porter.

“Hi lad” George replied, then asking “what about Torres?” 

The kid pulled the ventilator out again:

“Torres is a bollocks” he said to laughter all round and off he went, ventilator in place again. 

Amid all the chaos humour reigned and is much needed on such nights on a children’s ward. The private rooms were all sick with little infants, three of whom were taken to Dublin by ambulance to try and cure their illnesses. One of these kids was from a traveller family and all the relations from miles around had gathered in the hospital. There really is comfort in numbers and to see so many people arriving to give support to the parents was lovely. A load of the men were sitting on the broken beds by the exit from the ward. When passing I caught the eye of one, I nodded at him. He nodded back, no need for words we both knew why we were there.

The result of the two night stay in hospital was that our weekend was interrupted once again. No lie ins, no lazy breakfasts, no jaunt for Muttley in the woods. Ruby escaped to Dingle for yesterday, going to the cinema and sleeping over at her friend Hannah’s. It’s important for us that her life isn’t affected too much by what’s happening with Freddie, I just wish she didn’t return like a bag of cats. To top it all off today she developed a cold sore on her travels. How can she go to school with a carbuncle on her lips?

Oh the Sunday night dreads.