Well its Sunday afternoon in Ballyseede and its the end of a long week for us. Ruby is behind me on a the kitchen couch watching some movie with Katherine Heigel which I would have been embarrassed to watch in front of my father! Freddie is inside on the other couch watching a Star Wars The Clone Wars DVD. Having never seen a Star Wars movie I can easily say this DVD makes no sense to me.
Yes its been a long week. Freddie reached day 34 seizure free on Monday, a new record since things went south two years ago. He keeled over on Monday evening however and all four of us were in A&E at Tralee General by 10.30pm. The move in here has paid off, we didn't want to be tested but we were and everything went to plan. Ruby and I went home at about 11.15 when Freddie and Lisa were admitted to the ward. The little man was put through the ringer overnight though and when I went back at 6.30am he was doped to the nines. But he made it through without the drama of previous visits which was a comfort. Boy was he cranky and he spent the day fighting with his mother. After work I came back and poor Lisa nearly ran out the door when she saw me coming to take over. Freddie doesn't normally fight with me but he did Tuesday evening, poor fellow those emergency AEDs are really mood altering. The consultant sent him home Wednesday morning as there was no point staying when we lived so close. The gurrier was still very cranky though and when Lisa rang at 11am to say they could go home, I asked when did she want me to collect them. "NOW!" was the order and I jumped. It was great to have them home and so soon too was a major bonus. Unfortunately he had another small one Wednesday evening as he fell asleep. Depressing. However we saw it as a chance to get the video telemetry done. This is a procedure where you are wired 24/7 to an EEG machine with a video camera on you also. The idea is to catch a sezuire when one occurs and try find where it begins in the brain which can really help in solving the problem. Fred had been wired before but after seven days and no seizure we'd given up. As he was in a cluster we hoped it might be the ideal time. This procedure can only be done in CUH so I called the reg on duty on the childrens ward. A bed was available but he had nothing to do with the EEG department and "the boss man was off". After a late night call to my great friend Brian, "the boss man", who was at home, we sat around waiting to see if it could be arranged. Ten minutes later he called back, all sorted and we were expected anytime the next day. You can't beat the Cork Mafia boy!
Well we drove like the clappers the next morning and Freddie was sitting up in his bed by lunchtime. The welcome we got there was great but we're on first name terms with far too many medical people for my liking. The dinner ladies came to say hello and asked if he wanted the usual for dinner! At about four I left and soon afterwards the legendary Brendan arrived to wire Freddie up. He has to use superglue to keep the sensors on and poor Freddies hair is full of glue for days afterwards. The drive back to Dingle, I had to collect Ruby, is a hard one when I've left Freddie and Lisa behind in the Real Capital. Back home at about nine that night the text came through from Lisa, "he performed". Ironically the thing I hate the most was for once welcomed, maybe now we'll find a road out of this, I hoped. Well the little soldier performed nine times that night before they intervened with the AED to stop the cluster. For once things went our way. Brian rang in the morning to see how he'd done. Though upset that Freddie had had to go through it he was hopeful we'd get readings. Brendan arrived midmorning, took him off the machine and wheeled it away for downloading. But boy was Freddie cranky that day. At one stage I got a call.. "Dad can you come collect me and leave Mummy behind?" There's appreciation for you! Poor Lisa who'd been to hell and back with him was been dispensed with at the first opportunity. Mid-afternoon and Lisa on the way back from the bathroom is met by Freddie's neurologist. She's smiling. After a quick look at the first couple of readings it looked like they could see where his seizures were beginning. What a relief. When you can diagnose something its easier to find a cure, at least thats the logic as far as I'm concerned! Brian rang a couple of minutes later. Though at home he'd spoken with Brendan and confirmed what Olivia had said to Lisa. He's naturally very,very cautious at this stage but at least we have something to go on. Its the beginning of a long, long road. Deep MRI's, more telemetry, surgical conferences its all ahead of us but we
now have the audacity of hope.....
Lisa rang first thing on Saturday morning, they could come home. I was in Cork by eleven and home again by 1.30. On the way back Ruby rang...she'd hurt her finger playing football. She's on the Kerry Ladies development squad and had been on a skills session in Killorglin. Our great friend Fiona collected her back in Dingle and took her to the doctor. As I feared she had to go to A&E. We weren't back half an hour in Tralee when Lisa was off down the hospital again. No speedy treatment when it isn't an emergency and the two weren't home again till 6.30pm. Home again and we were a family together once more.
Home again.... its a phrase I've been using a lot lately but it never loses it's lustre I can tell you!