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

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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Posted by John Verling

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