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

24Oct/120

Ten Days in the Cooler

Well it’s Tuesday and, as Ed Galvin and Aiden  pointed out over lunch today, two days later than my usual posting day. Anyway as both my good friends remarked, its been a tough week for us and writing was probably the last thing on my mind. It did occur to me,as a drove home from Cork Sunday night, Ruby as always by my side, that I was physically and mentally unable to write…

Today has been the first day in over a week that I’ve felt anyway normal. The same goes for all my family. Freddie and Lisa were deposited in the CUH last Friday week, with the idea of Freddie seizing to beat the band and all activity recorded. Over the weekend, his medicines were reduced at a rate that normally would take us at least six weeks. Come Monday morning and Brendan the technician wired Freddie to the EEG machine. For the rest of the week he was confined to bed. Monday night Lisa rang to say he was feeling ‘confusion’, as Freddie describes the onset of a seizure, and hopefully we would get some action. Later on he did perform, a large full blown seizure followed during the rest of the night by about twenty smaller frontal lobe ones. At that stage, they intervened with some diazepam to give him a break.

And that was it…if you didn’t want Freddie to seize he’d be seizing till the cows came home but when you want him to, as perverse as that sounds, only one seizure of note.

After Monday night’s mini session, the outlook had been good for a week of seizure activity. This was especially true as by Wednesday he was off the Vimpat, a very fast drop in a drug that was wrecking our little man. Lisa was doing everything to keep the run going. Waking him earlier than usual, keeping him up late at night, making him bounce up and down on the bed, things we usually avoid as much as possible. Short of slapping him around the head on a regular basis there’s not a lot else you can do when in hospital wired to a machine.

On Thursday morning he was begging to be released from the machine, it’s possible to unplug it for toilet breaks etc, and Lisa did so, to take him to the playroom. They weren’t ten minutes in there when he went over, nothing major, a fright as Fred would call it, but enough to have registered if he’d been connected. If there was a bookie giving odds you’d have been a brave punter to bet against that happening. Typical Freddie, if there’s an easy way he’ll find the hard one…but Lisa had to give him the break he’d been three solid days wired to the machine, confined to the bed, he deserved the change.

Because that ‘fright’ happened around midday Lisa was hopeful that more would follow…they rushed him back to the machine and wired him up. But then, nothing happened, sweet FA, not a sausage. A whole five days wired up and only one decent day of activity but then one day is better than none at all. On Friday evening, Brendan removed the machine from Freddie’s head; the week of monitoring was over. As the electrodes are super glued to his head the removal is a painful process but Brendan made it as smooth as possible. When I came to see him Saturday morning Fred’s hair was full of glue, big patches of it stuck together and only time will get it all out. He said to me this evening that he wanted to go to the hairdressers tomorrow to get it all out. You know the world is off kilter when Freddie wants to go to the hairdresser…

 

So that was the week that was in our household. A week that has left us all wrecked. The driving up and down to Cork has been exhausting. Ruby, my darling daughter, has kept me company on all the trips and even though she wouldn’t say it, I think she knew I needed the company. She came with me Friday when we dropped the two to CUH, again on the Sunday when we did a day return. We did the trip again on Tuesday, after school, straight from Dingle. When we got home Tuesday evening, about ten-thirty, neither of us spoke a word… just went our separate ways straight to our beds. Again, on Saturday when I went down, she came with and on Sunday, she came back with Lisa, who’d escaped back to Tralee for a night. The girls had a marathon session of watching the Vampire Diaries on Saturday night, while Freddie and I entertained the nurses of CUH.

The consultant was wary of letting Freddie out at the weekend in case he had a bad reaction to the week of drug withdrawals. He’s now completely off the Vimpat and far better a man for it too. His speech is better, he’s much more alert, far better on his feet, these drugs really do affect our little man. In addition, he’s down to only one tablet of Keppra per day, down from two a day. Keppra is such a strong drug that now we can only drop half a tablet once every four weeks, Fred dropped a full tablet dose in the space of three days last week. He’s still on the Tegretol and hopefully that will do a better job on its own than it was allowed to do when combined with the other two.

Monday morning they got the all clear and Lisa called about noon to give me the good news. At lunchtime I closed up shop and went looking for Ruby. As she’d left her phone in her locker I had to make a few enquiries on the street. Apparently she was in The Diner and there I found her with the girls who lunch. Hannah, Allie, Ella and Ruby dining out and no doubt having the dramas. Ruby was exhausted, not up for another trip to Cork and so I headed off on my own. She did offer to come with me but I didn’t encourage it, she’d had enough at that stage.

So I headed off on my Todd.

On the back road before Killarney my friend Brian rang. My dear, close friend who’s been such a help in these tough times. He’d had a look at the early readings and the quality was excellent. The early indications were that they’d caught the seizures of Monday evening and were analysing them to see where in the brain they were starting. The whole point here is to find the point of beginning, a point that can be operated on. Because the PET scan was clear we need the evidence of the week’s telemetry to build an acceptable case for the surgical consult. As the quality is very good and there is activity the hope is that we’ll have something to present. Brendan is editing the five days of readings, trying to capture all the important bits and correlate them with all the relevant parts of the brain. Brian is hopeful we’ll have a preliminary report for Wednesday and from there who knows...

Brian went on to say that in the video, all activity is videoed so as to compare body movement with brain activity, Lisa is seen making Fred comfortable before the seizure begins. Not at all surprising that Lisa is able to pre-empt a seizure onset. She is so devoted to Freddie, sitting with him all day, loving him every minute, that she knows exactly when he’s about to perform. All last week she was as confined as Freddie was and never once complained. Not once…what a woman I am lucky enough to be married to.  Not even on Saturday morning, when I rang, did she say she needed a break from it all, though I was able to tell from her voice that she was fairly burnt out.  No surprise that she was dressed and ready to go by the time we arrived. Not only was she dressed but looking great, amazing after eight days in the Puffin Ward.

Now that we are all back home, it all seems so long ago. We’re all still very tired, Fred even had a nap this afternoon and I think his mother snuck one in as well.

After the week they just put down who would begrudge them an afternoon snooze?

 

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Posted by John Verling

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