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

22Apr/120

The week of ups and downs

The end of a long week. That first week back at school is always tough, back to the early rises, lunch making and no more lingering over breakfast. The worst is that it seems to last forever and the return to all the routine gets me down. Having said that, when you have a weekly routine of early rises etc it does make the weekend more enjoyable, something to look forward to. Since Fred’s epilepsy took its present course, our weekends have become fairly lazy affairs, keeping him relaxed and out of hospital is our main objective.  So, if sitting around reading and watching football is what is required, then, to quote Kev Moriarty “it has to be done.”

Since we started reducing Fred’s Topomax, one of the failed Anti-Epileptic Drugs he’s been on, he seems to have increased his seizure activity.  AEDs are very difficult to deal with... You are dealing with the central nervous system so everything has to be done slowly, very slowly. Firstly, you have to increase the intake over a number of weeks until you reach a therapeutic dose, this being defined as the amount of the drug you should be taking according to your weight and age. Only when this dose is reached and tested over another length of time can you decide if it’s working or not. To reach a therapeutic dose can take months and the only way to test if its working is you remain seizure free or have a reduction in your amount of seizures. To add to the annoyance of it all you can have a honeymoon period when the dose works and suddenly stops working, then you have to decide whether to increase the dose again, introduce another AED or start weaning yourself off it. Fred has tried seven different AEDs since he was two years old, all with some limited success and currently he’s on four different ones. Four is too many, one is optimal and two is usually the most you should be on. So now we have to start weaning him off two, Keppra and Topomax, then try introducing a new AED on the market, Vimpat, leaving us to get him then off the last one, Frisium. At that stage, he’ll be on just two, Tegretol and the Vimpat, which, so the theory goes, will give him seizure control. Seizure control, that elusive term we’ve been hearing since he was first prescribed Epilim seven years ago. Lisa is in charge of Fred’s medicines and she is so meticulous about it all. She might not remember my birthday but can tell you the exact four, twice-daily doses, his different vitamin intakes and where exactly Fred is on the reduction ladder for Topomax.

One of the terrible paradoxes of these AEDs is that even though they might not work, the coming off them can be a nightmare. So it was with Epilim Chrono, the reduction of which put Freddie in the ICU last August and it have given him no protection at all on the therapeutic dose. So it is too with the Topomax, it has had a moderate effect but nothing to justify keeping him on it. Lisa has begun weaning Fred off it but its taking about 8 to 10 weeks. On Monday evening, Ruby and I came home to Freddie in tears on the couch cuddled up to Lisa. With his tear stained eyes he looked up at me and said, “I had a faint” his words for a seizure. Wednesday, Saturday and now Monday, the weaning of the Topomax is not going well. The poor man was so upset by it all that he had burst into tears, uncontrollable tears at this epilepsy giving him such a hard time, his feeling that he can’t escape it is really getting him down. The helplessness his parents feel at these times is beyond description. For the rest of the evening we watched him like a hawk but for the third time in a row, the little man faced epilepsy down and avoided going into a cluster that requires the IV drug Lorazepam. He ate a big dinner, watched a movie or two on his DVD player and slept soundly through the night. At 1am I went to bed leaving Lisa, Freddie and Ruby asleep in the front room, we don’t like moving him on these nights after he’s settled. As before, at about 3am, my door was thrown open like John Wayne looking for Maureen O’Hara and in strode Fred, looking to cuddle his Dad for the rest of the night. Despite the horrible circumstances, I love having him come to cuddle me in the middle of the night.

Thursday was a great day. A man brought me a half-dozen duck eggs as a thank you for holding a parcel from the courier for him. Others brought a cup of coffee and a big bar of chocolate as a thank you for other small jobs done. The coffee was drunk and I delivered the chocolate to Ruby at school with her lunch money, which she had forgotten in her hurry out of the car that morning. The one thing I was never in a hurry to do was get to school and certainly not to get there early. Ruby and her friends demolished the bar of organic, fair-trade, expensive present in no time, which I was delighted to hear. Just before noon, the lovely Siobhan Mac called and offered to take me to lunch at a new place in town. We sat outside in the Spring sunshine discussing the world with another man who had joined us, laughing at our financial woes, how fecked we all are and how to put things right. A perfect way to escape from the world for a while.

Friday began a bit the same. My fellow Gooner Keith rang and offered to take me to lunch. Am I looking particularly thin these days? Doubt it. We had a lovely lunch of sandwiches and coffee whist discussing TV, family life, things to auction on EBay and football. As with the day before I was in no hurry back to work afterwards but back I went. About four Ruby came in from school, tired after her first week back and collapsed into my seat. Lisa rang shortly afterwards, Fred had had another seizure and was sleeping on the couch. She told me not to worry but then she is great at coping and I am not. As soon as I could, but not soon enough, Ruby and I closed up and headed for home. We spoke with Lisa and all was fine, Freddie was awake and waiting for dinner. Just as we got in the door the little man had another, it wasn’t looking good for a peaceful night. He recovered quickly enough and managed to eat his dinner and watch a bit of TV but by 7.30 he’d had two more so we headed over to the hospital. As per normal, I dropped them at the door and went to park the car. Then the usual rush back with the bags, up the stairs and into the ward, I could do it all blindfolded. On the ward, the desk was empty but as I walked down the corridor a familiar nurse’s voice, somewhere behind me, said “Room 1 Dad.” In Room 1, Freddie was laid out and just beginning another seizure. As with the strict protocol, they gave him the Lorazepam, once they found a vein, Doctor Brian handling it all with calm and reassurance. Doctor Brian looks like he should be sitting the Junior Cert. but despite his youthful looks he’s a very good doctor and we’re always happy to see him on duty.

Lorazepam is a very strong sedative but on Friday night, Freddie was having none of it and by 10 o’clock when I was heading home, he was sitting up watching a DVD. Lisa was sending me away so she could get him settled. As I left Nurse Angie was wondering why he wasn’t knocked out, if he’d gotten the full dose from Brian! She checked and he had.  Back home Ruby and I watched TV till about midnight when I felt I was tired enough to sleep. Only after another hour of reading did my eyes begin to tire, eventually my brain was relaxing, maybe Lisa and I should get a shot of Lorazepam from Doctor Brian in future. Not that it would work for Lisa; she is so dedicated to minding our little man that I don’t think anything would get her to sleep when he’s inside.

Saturday morning and I repeat what I’ve done so often these days. Up before seven, shower, flask of coffee made and head over. This time the two are awake, Lisa with her kindle, Fred watching yet another DVD, he’d woken at 5.30am but had a peaceful night. The Lorazepam might not have knocked him out but did stop the cluster. Didn’t stop him being a cranky fecker though, the usual side effect, and by nine o’clock he was fighting with everyone. Lisa went off to drop Ruby to the Dingle bus, I’d already decided that I wasn’t going to work, I just couldn’t face it. Not long after Lisa returned, the consultant called in to check on us. He took one look at Freddie, awake and feisty, one look at us and suggested that we could go home if we liked. It didn’t take ten minutes for us to pack and go. Being home only twelve hours after going in was a relief. Freddie’s mood improved remarkably after a big lunch and a three-hour snooze, the bad night on Friday wasn’t ruining our weekend completely.

Now its Sunday lunchtime, the weather is picking up and I am thinking of walking the dog. Freddie is demolishing a fine Sunday lunch and Lisa is….looking beautiful and effortlessly elegant as if nothing had ever happened. Never in my wildest dreams did I see myself being married to such a wonderful person.

Lucky, lucky man.

 

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Posted by John Verling

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