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

29Oct/120

Return Of The Man

The week just gone has seen improvements, well improvements of sort. Sitting here beside Freddie on a bank holiday Monday afternoon, life couldn’t be better, he’s happy watching a DVD, Ruby is on the other couch watching The Vampire Diaries. Lisa is off for a run, poor Muttley the dog was wondering when he was going to see life outside of the backyard again. Lisa needed the break from us all but still we had to push her out the door.

Fred is such a wriggler, he never seems to get comfortable, always trying to find that perfect spot to relax. Just now, he decided to get some of his toys, to do some battles while watching the DVD. Instead of getting up, he had to lean over the side of the couch, still under a blanket, still squashed up to me. He pulled his hands up, two toys got, but with his fingers covered in black ink. He had been drawing faces on balloons earlier and now the ink was all over his hands, as his mother had put them in with his toys. Off to the bathroom to wash off the ink and now ten minutes after I sat down with him, he has finally settled. Let’s see how long it takes him to move again.

The improvements this week have been a carry over from last week. With the withdrawal of the Vimpat medication, his all round awareness has improved dramatically. His speech has improved, no more slurring of words or too much searching for the right word in mid-sentence. Walking and spatial awareness has also gotten much better. The constant twitching is dropping off but still not gone altogether. That the twitching will probably always be there in some form or other we’ve accepted reluctantly, but at least now its just a little bit of involuntary jerking. All these improvements make us feel as if we’ve got our little boy back again and also doesn’t encourage us to start him on any new meds, as his neurologist plans. As its unlikely that Tegretol on its own will prevent seizures, inevitably we’ll have to add something to the mix at some stage.

For now we’re enjoying the return of the man. His artwork output is prodigious to say the least. He hasn’t produced anything for weeks but this week he’s made up for it, in spades. All day he’s at it, making snowflakes for Christmas, drawings of Blennerville Windmill.Then on Friday he really outdid himself. Ruby was going to a disco, in Cloghane, and was bringing four friends over after school to get ready for the night out. Lisa went off to collect the crew from Dingle while Freddie and I stayed behind inTralee, to wait the girl’s arrival. Freddie got his drawing markers and his art pad.

“What are you doing?” I asked.

“Oh, something for the girls…” he answered.

Drawing number one was done, torn out and put aside in a safe place.

“That’s for Hannah,” he said.

Then number two...

”For Tara,” I was told.

“Dad…what are the girls names again?” he asked, after doing a third one for Ruby.

“Hannah, Tara, Bobbie and Eilish” I told him.

Two more were done, for Bobbie and Eilish. The one for Eilish only finished as the girls came in the door.

Freddie jumped up in excitement when they arrived, the drawings behind his back. He lined the girls up and presented each with their special piece of artwork. Each girl’s heart was broken by the gesture and Freddie got lots of hugs and kisses. He was appropriately bashful in the face of all the affection but I could see how pleased he was that the artwork had gone down as well as it did…

Fred’s speech has improved dramatically too. He no longer slurs his words and he’s finding the right words to describe his thoughts. Its as if his thought process and word formation are again in sync. While sentence structure is still difficult, he is putting words together more than he has done for a while and with practice, much practice, he should master the art. He’s still giving great descriptions for everyday things… Yesterday evening he had potato cakes for dinner. I asked him what he was eating…

“Oh, potato, rasher and onion pie” his little voice said looking up from the plate for a second. Freddie has such a lovely speaking voice and he mixes wonderful facial expressions with his words so you just can’t stop looking at him as he talks. His beseeching raising of the eyebrows when he’s looking for something always manages to get around his mother, even when she’s told him no…

It hasn’t been all plain sailing this week. On Wednesday, I was making breakfast when I heard an almighty thump from upstairs. Freddie had collapsed in a seizure in the bathroom, banging his head in the process. It’s a thing we always fear but we try to give him as much a normal life as possible. First thing in the morning is proving to be a trigger time for the man these days. As a result we try to wake him slowly, leaving him sleep too long can be a trigger also. So, about 7.am we wake him to give his morning medicines and a glass of water. Then we let him doze till about 8am, at least if something happens he’s in the safety of his bed. Not so Wednesday morning, but then Freddie is Freddie.

Ruby and I headed off to Dingle about 8am, leaving Freddie and Lisa cuddled up in the bed. Lisa had given diazepam to settle him, so Freddie was due a morning of sleeping and recovery. Even by the time I was leaving, the bump was a fair size and now five days later it is a nice shade of yellow. Poor little man never gets a break, why hadn’t it held off for another thirty seconds when he would have been safely back in bed?

Ruby and I returned about six that evening to a very dozy little man lying in his mother arms. Not content with knocking him sideways in the morning the epilepsy had come back for a second go about 5pm. Not as bad as the morning one but still a second seizure in the one day. Lisa was looking after him, as only she can and he drifted off back to sleep not long after we came home. He slept till about 8.30pm when he woke, looking for dinner.

Saturday evening he had two small frontal lobe seizures, just after he got the markers and pad ready for some artwork. Again, they took it out of him and he slept it off, waking about 8pm for another late dinner.

No matter what this epilepsy throws at him, he always bounces back.

Freddie is incredible, really.

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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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14Oct/120

More Seizures Please

Well its late on Sunday evening. Ruby is under a blanket watching Factor- the Results, a program that I can just about tolerate. Not watch-tolerate…when its on in the background and I either read the paper or listen to the radio via my phone. Of course, I’d prefer if she watched some documentary on algebraic equations but then I am only the father.

Its night time this week as I write this and the reason I’m doing so at such a time of night is due to the two missing players of the piece.

Lisa and Freddie are in the CUH, not an emergency I hasten to add. We got a call from the epilepsy nurse on Thursday evening. They wanted Freddie to come in Friday and to plan for a week, if not more, of a stay. The idea is to put Freddie on a full course of video telemetry, in a final effort to find where the seizures actually begin in the brain. If that point can be found then he will be forwarded as a surgical candidate, eventually. The week long stint of having the EEG sensors glued to his head and all seizure activity recorded should do the job. The focal point of the seizure activity, where it all begins will be found, of that I’m sure, it has to be there somewhere. This telemetry is only good if Freddie has a seizure or two, usually something not too difficult for the little man to do. The idea behind bringing him in on Friday was to begin a rapid withdrawal of his medicines, to ensure seizure activity will start within a couple of days. By tomorrow evening he should be off Vimpat, a time process that would have taken us six weeks under normal circumstances. That should do it…

For once we’re wishing for our little man to have a seizure and lots of them. It doesn’t feel right but then its for the greater good.

Lisa has been in the hospital since Friday evening and was going a bit stir crazy. Ruby and I left early this morning, both because we wanted to see the other two but also to let Lisa escape for a while. It really was a beautiful autumn morning, the sun rising in front of us, the mist gently clearing around the trees and mountains of Killarney. Ruby was good company for me on the journey and it seemed to go very quickly. We spend a lot of time in the car together these days which I suppose must be good for father daughter relations…still manage the odd row or two though, which can only be healthy.

In the room, the two inmates were happy to see us and soon, in true Verling family tradition, we were digging into a Sunday morning big breakfast. This one, from the café in the hospital, was gone in no time, Freddie obviously not remembering that he’d eaten one earlier!

At midday the two women in my life headed into the real capital for some retail therapy. Afterwards Lisa said she was the one sitting around while Ruby shopped, sounds like the early days of our own relationship before I was excused shopping duty…

Freddie and were confined to the ward. We watched movies, I read a bit, I studied a bit and Freddie snoozed a bit.  Every now and then we’d go for a walk, round and round the ward. Up to the door, stop to look at the fish, stop to look out the window. All this was on Freddie’s insistence, in fact, he seemed the most alert and active that I’ve known him to be for weeks. His gait was better, his arms weren’t jerking constantly and he wasn’t as dopey as he has been. Just goes to show the negative effect the Vimpat has been having on him.

Let’s hope it does us a favour and gives him a bit of seizure activity as it leaves.

About half-past four they brought in Freddie’s tea. Not exactly sure what qualifies for Sunday evening tea these days but a plate of three sausages, two rashers and a fried egg seems a fair feed to me. The offer of chips to go with was declined, by me, Fred was eager but accepted my word as final. His eyes nearly popped with excitement when he saw the plate put in front of him, licking his lips with the knife and fork to the ready. Needless to say he put the half pig away in no time, refusing to share with his mother when she returned.

Soon after the two came back, Ruby and I headed for home. It was getting late and we were getting hungry, plus Ruby didn’t want to miss the X-Factor…

We said our goodbyes as the two were getting ready for bed. They looked so cute under the blankets, Freddie sad to see us go. In his usual way he tried to hide his sadness by not looking at us, but his little face couldn’t hide the emotions. That little sad face of his is going to be such a winner when he gets older, watch out ladies, you have been warned. Wonder where inherited that one from?

Ruby and I headed off into the sunset, a full day down.

Let us hope the full week ahead of us is a successful.

 

 

 

 

 

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7Oct/120

Freddie and The Giant Magnet

Freddie is lying next to me, dozing. He had ‘a fright’ shortly after noon, a small seizure that knocks him to the ground but not unconscious.  We got him up on the couch and gave him a shot of diazepam to keep things at bay. He’s tried snoozing but wasn’t up for it, so the two of us cuddled up while he watched a ‘quiet program’ on TV. A few minutes ago he asked for lunch, and after demolishing a bowl of risotto, left over from last night, he’s ready for sleeping.

 

Lisa and Ruby are off at the Dingle Food Festival, well at least they went off together but no doubt Ruby quickly disappeared with her friends, not wanting to be seen with her Mum. Ironically, I’d love to be parading around Dingle with my beautiful wife, tasting all the food on offer…maybe next year.

 

This week was the one we’ve been waiting for, Freddie’s PET scan, Tuesday morning. As the scan was at 8.30am, we headed down toCorkMonday afternoon. The hospital arranged for an overnight bed for Freddie, understanding the need for us to rest properly the night before. We headed off about 2.30pm, car packed by Lisa, bags packed by Lisa, change of clothes laid out by Lisa, I’m really only a bit player when it comes to Verling family trips. About two minutes into the journey and Freddie has ‘a fright’ while reading a magazine. Lisa told me to keep driving while she laid him out on the back seat. About twenty minutes later he had a full seizure, just before Killarney, and we pulled over to give him a shot of diazepam. We’d waited so long for this scan, we weren’t turning back and anyway we were heading for a hospital after all. The next hour or so of a drive toCorkwent well, Freddie fell into a deep sleep, allowing Lisa and I to chat on our own, something we don’t always get a chance to do.

 

Just outside of the city Freddie shot up in the seat, he’d finished sleeping and wanted to see where we were. He gave me a fright the way he shot up in the rear-view mirror but I was glad to see my man was ok.

 

At the hospital, I dropped the two at the door and drove off to park. By the time I’d gotten down to the ward they were already settling into their room. A private room no less, they really do look out for us. Familiar faces from last winter came to say hello, staff we’d gotten to know during the long spells spent in CUH.  My bed for the night was in Bru Columbanus, a great facility for family members of patients of the hospital and I headed over to check in. When I got back to the hospital, with supplies of water and liquorice, Freddie was digging into a plate of chicken, beans and croquettes…

 

“Look what I got,” he exclaimed between mouthfuls.

 

Saying goodnight later that evening before heading off for my empty room was difficult, I never like leaving loved ones behind.

 

The next morning I headed over about 7.30am. Thankfully its been a while since I’ve had to do an early morning hospital visit but I still had that dreaded feeling in my stomach as I opened the door of Freddie’s room. All was ok; they’d slept well and were ready for the scan. Poor Fred had had to have a line put in, for the scan dye to be injected, and he told me the story of the big needle. Thankfully, its been a while since he’s had that done.

 

At the scan centre we were really well looked after by the radiology nurse, Peter. He showed us around the PET scan and put all three of us at our ease. Even when it came to injecting the dye, Freddie let him do it with little protest. While we were waiting for the dye to get into his system, Freddie wanted to go back to the giant magnet, as he called the scan unit. Another one for the Freddie lexicon…

 

In the giant magnet Freddie was excellent. He had to lie out on a table, which was slid into the unit, his head held tight in a padded headrest type box. Lisa was at one end of the unit and I was up by his head, talking to him, keeping him calm and still. Still he laid for ten minutes, absolutely stock still, not a twitch, amazing little man that he is.

 

When it was all over we went back to the ward to recover. As Freddie was radioactive, we had to stay in our room, door closed, and no contact with the outside world. The poor man hadn’t eaten since the evening before and he devoured the breakfast I got for us. Those meals are always the best ever, in this case the sated hunger matched by the relief that the procedure was behind us, eventually.

 

We headed home about 2.30, Fred was no longer going to set off the Geiger counter and Ruby had to be collected. It felt strange to be heading off so soon after waiting so long for the scan. However as it really was a simple, non-invasive procedure, we shouldn’t have had to wait so long…

 

Wednesday morning and Freddie woke up sick. All day he was vomiting, so much so that Lisa had to pack him in the car and head off to the chemist to get some medicine. Thankfully, he managed to keep his main medicines down and got through the day seizure free. He must have picked something up in the hospital or maybe it was his body reacting to the radioactive glucose from the previous day. Who knows?

 

On Friday evening Lisa’s phone rang. It was Pam, the epilepsy nurse; Lisa couldn’t face it so I went off to the kitchen to take the call. I knew from the tone of her voice that the news could not be good and it wasn’t either. Nothing had shown up on the scan.

 

Nothing.

 

I could not believe it.

 

Pam has heard many tears from Lisa over the phone but I was so disappointed I was just numb. After a brief chat explaining what comes next, I hung up.

 

Lisa was distraught. Freddie was hugging her asking what was the matter; he’s such a protective little boy. How could we explain what was wrong?

 

So now we’re back to the drawing board. The only system that has ever shown a fault in Freddie’s brainwaves, shown us where the seizures start, is the video telemetry. The system where the EEG receptors are glued to Freddie’s head and seizures are recorded from start to finish. When this was done last year, it was the first time we had an indication that his seizures began in the Frontal Lobe, giving us hope that surgery was an option. Now it looks like that he’ll have to have a lot more telemetry done, to try discover exactly where everything is going wrong. Exactly where in the Frontal Lobe his seizures begin. Luckily, for once, seizures aren’t in short supply with Freddie, so hopefully we’ll get somewhere going down this route.

 

If only that PET scan had shown something…

 

The neurologist is going to talk to the surgery team this week, to see exactly what is needed from the telemetry sessions.

 

There won’t be any waiting on our side, not again.

 

 

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