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

24Dec/120

Oh What a Week

The week we just put down….

 

Monday 17th December 2012…

 

We were going for a blood level check at the hospital so even though Freddie woke as usual at 8am we didn’t give his meds…he’d had a tiny frontal lobe seizure about 6.30am, so small I wasn’t even sure if he’d had it or not. Ruby was off school, sick, mara dhea, but I was happy not to have to drive to Dingle for a change. About 9am Lisa, Fred and I went down for breakfast, Ruby wasn’t to be seen till about noon. As soon as we were downstairs, Fred had a seizure on the couch. The usual minute long full-blown tonic clonic one. I knew it would happen, he just isn’t strong enough on his meds to miss a dose, even by an hour or so. This was the third time in the past week when he’d had a seizure the morning of a planned blood test. The problem is that you can’t do a blood test until at least ten hours after a dose, which means missing that morning one. Anyway Lisa took over, gave him a shot of diazepam and we made him comfortable on the sofa.

 

As I had a few jobs to do, I went off, leaving the two cuddled up on the couch. When I got back, Fred was sitting up having breakfast, as if nothing had happened. This blood level test is important, as we need to know where he’s at with the Tegretol and if he can go up to higher daily amount. If his level is too high then the step up wouldn’t be possible, a low one gave us a bit of room to play with. Then I had one of my smart ideas, why didn’t we go in that night and get the level taken at 7am in the hospital, saving us the journey and missed morning dose. A quick call to the Cashel ward and it was all arranged, once again they were being so understanding of us. For the rest of the day Freddie took it easy, I did my jobs, Ruby learned a lot about make-up from YouTube and we all waited for the trip over to the hospital at 6pm.

 

On the way over at about 6pm, I decided to take a detour around town, to show Freddie the Christmas lights and decorated shops ofTralee. The little man hadn’t yet had the chance to see it all and in fairness,Traleedid a good job of it. Freddie loved the lights and all the decorations, so much so that I drove around for a second time…

 

Then Fred said:

 

“Thank you for showing me the Christmas lights, Dad, it makes me happy.”

 

Such a sweet thing to say but it broke Lisa’s heart. It was just another reminder of the limited life he leads at the moment, that he can only get to see the lights on a trip to the hospital and then he is so grateful. Lisa was in tears holding the little man tightly in the back, pointing out bits as we drove past.

 

At the hospital, I dropped the two at the door and went off to park the car. As I was schlepping back with the bags I had another good idea…as we were at the hospital and almost ten hours sine the morning dose maybe we could get the blood taken and go back home again….On the ward Fred was settled in bed and the nurse was doing his obs. I suggested my great idea and the staff all agreed.

 

When the doctor came up to take the blood, Angela the senior staff nurse came in to help. As usual, they found it difficult to find a vein but eventually the poor man got a flow. Angela had forgotten to bring in a vial and knocked on the ward window get the attention of the other nurses. All five at the desk jumped up in alarm and came running onto the ward, looking worried

 

“Its alright” Angela said, “I only want a vial, I wish you all came running as quickly when I normally call ye..”

 

They all were on high alert cos Fred was on the ward, such power over the ladies the little man has!

 

Soon we were off home, via the town centre to see the lights once again. Despite the loving care we get on the Cashel Ward, it was still nice to be home once more.

 

Tuesday and Wednesday 18th and 19th December 2012…

 

The next two days were wonderful reminders of what life can be like when the epilepsy leaves Fred alone. He was reading, writing, doing sums, drawing, colouring, speaking clearly and generally just wide-awake. For the first time he was talking about Christmas and how much he was looking forward to it. The clarity in his brain was making the idea of Christmas much clearer to him. Its such a pleasure when Fred has these clear days, reminds us of the great man he will be when all this is behind him. Lisa always cries a bit during these days as she sees his potential but knows it’s only a temporary reprieve…

 

Thursday 20th December 2012…

 

Thursday arrived and we were back to our version of normality. Fred woke with a small five-second seizure and spent the rest of the day as a shaking wreck. Every now and again he’d have a frontal lobe seizure but most of the time he was sleeping or twitching. When Lisa came back from Dingle, Fred and I had just come downstairs. To get him down I’d given him a piggy back, I was nervous about him falling over on the stairs. The man was in a daze all day. The ever-lovely Siobhan paid us a visit and though Fred was happy to see her, he didn’t pay her much attention.

 

About five o’clock the inevitable happened and in a way it was a relief. A full seizure broke through, a big, dirty, angry one. Fred shook and hollered his way through it and once it was over, he seemed at peace. Lisa gave him a shot of Diazepam and he slept for a while, waking for dinner, which was demolished with style. The rest of the evening we did our usual things, Fred and I went off to bed about eleven and after a few stories, he slipped off to sleep.

 

 

Friday 21 December 2012…

 

Friday morning and I took Ruby off for her last day at school. Fred was in a deep sleep when I left and Lisa got in beside him to look after the man. This was to be Ruby and mine’s last trip to Dingle for the year, an end to our early mornings and car journeys for a couple of weeks. After dropping her at school, I headed off to do some shopping. When I parked up, I rang home, as per normal. Fred had woken up in a terrible state of jerks and jitters. To make things worse he had a couple of vomits as well. Lisa was really upset, as was I. She rang Pam the epilepsy nurse, to see what could be done. As usual, she wasn’t at her desk, she is the only one inCork, and I doubt she gets much chance to sit down. A few minutes later, my phone rang. It was Pam. She’s gotten Lisa’s message and was very concerned with what Lisa had said and at how upset she sounded. I added my tuppence worth of worry and filled her in on anything else I could think of as relevant.

 

“Leave it with me John,” she said and hung up.

 

About twenty minutes later, I was in the bookshop, trying to find a present for myself, when my phone went again. Pam, again. She had spoken with Fred’s neurologist as a matter of urgency and Olivia wanted us to come up toCork. The worst weekend of the year to be going into hospital, especially as it was a bit of an open-ended invitation. We bough knew it was for the best, maybe get this current cycle of upset stopped in its tracks.

 

“See you in a few hours,” I said, the tears beginning to come on. The last, last thing I wanted for our man was for him to be in hospital for Christmas. Especially after he was so much looking forward to it all.

 

I rang Lisa.

 

“They want us to come up toCork…”

 

“Ok,” she answered, “I’ll get ready.”  I could hear the disappointment and upset in her voice.

 

Such a turnaround in a couple of days.

 

By the time I got home, Fred was up and dressed. The shaking had settled a bit as Lisa had given him a small bit of Diazepam.

 

We set off in silence and in a couple of hours; we were settled into the ward in CUH. By the time I arrived with his bags, Fred was ordering dinner from the catering lady. He wasn’t going to miss a dinner just because we weren’t at home.

 

Soon Olivia arrived, a lot quicker than I had expected. She could see the state he was in and thought the jerks were predominantly on the right of his body. Another indicator that the misfiring neuron is on the left of his brain. She ordered a full set of bloods and laid out her plans for Fred.

 

That evening he was to get a full IV shot of Lorazepam. This is the strong drug we get when in hospital, to stop the horrible clusters. If that didn’t stop the jerking, he was to get another dose Saturday night. She also wanted to prescribe him a drug called Clonazepam, a lighter version of Lorazepam, which we could give in tablet form at home, whenever the shakes kicked in. Her hope then was to leave us till Sunday, when she’d be back on the wards, and review his situation.

 

She had some good news though. The children’s epilepsy expert atTemple Streethospital and just emailed her that afternoon. He’d reviewed the DVD of Fred’s case that Brian had sent him and believes that there is a case for surgery. In the new year, he wants Freddie to come up to Temple Street for more and more tests, to try tie down exactly where that fecking misfiring neuron actually is hiding. Also, he’d found a tiny defect on an MRI scan, one not noticed before. More hope.

 

While we can’t get our hopes up this was certainly good news and gives us something to hang onto.

 

A couple of minutes later my phone rang. Brian ringing to say he’d gotten a call from the man inTemple Street, confirming what Olivia had just told us on the ward. The fact he’d taken time to ring Brian at home on the Friday before Christmas makes me like the man already. Also he asked Brian for my number so he could talk with me in the New Year, which Brian had done but then asked if that was ok with me…knowing only too well that it was.

 

After Fred was settled for the evening I headed off home, happy that he couldn’t be in a safer place and that there was a chance he’d be home on Sunday.

 

Saturday 22nd December 2012…

 

Up early and into the Christmas shopping that I hadn’t yet done. By the time I was home, Ruby came in with her friend Tara. They had been at a youth club disco in Dingle Friday night and Ruby had stayed over inTara’s house. Tara’s Mum had dropped them off earlier but being the ladies that they are, they first went shopping inTralee.

 

Tarawent off home and Ruby went for a shower. When she came down, I fed her, a BLT and hot chocolate with marshmallows. The poor child was wrecked after her night out. Soon after I headed off to CUH and left, her on the couch, laid out with remote and TV guide in her hands, lunch on her lap.

 

At the hospital Fred was a bit of a wreck, the Lorazepam does that to him, but at least the shakes had stopped. Lisa headed off back toTraleeand the two men cuddled up in the bed. When Fred was having dinner, one of the nurses came in. As it was so quiet on the ward, a private room had opened up and if we wanted it, we could move in for the night. Too good an opportunity to turn down, so we took her up on the kind offer.

 

Fred finished his dinner and I took the empty tray back to the dinner trolley in the corridor. This is a big Thomas the Tank engine on wheels with heated food compartments and slots for the empty trays. As I slotted Fred’s tray into the Thomas, I heard someone running behind me. I looked around and saw Fred running down the corridor. As he got near the tank engine, his legs started to go from under him. The Lorazepam wrecks his coordination. Down he went, just before the tank engine and slid head first into the guardrail that ran around it. Luckily, it was padded with hard plastic, double luckily that Fred lifted his head just on impact and his chest smacked into the trolley, not his face. It all happened in slow motion, something every nurse that came running said as well. As I peeled him off the rail I had visions of x-rays and broken chest bones, definitely no going home now, I thought. But the warrior that he is stood up, too brave in front of the onlookers to cry and shook himself down. The nurse took him to our new room, gave him the once over and declared him to be very lucky.

 

The rest of the night went peacefully. Fred eventually went off the sleep about 10.30pm and I read for a while. At 11pm, I picked up the Prairie Home Companion Christmas show live fromNew York, via an app on my phone. I love this radio show and to get the live Christmas edition was a bit special. When it finished at 1am I really felt Christmas was upon us but doubly hoped that Freddie would be allowed home Sunday morning…

 

To get ready for bed I headed off to the bathroom. Everything was peaceful and quiet on the ward, no noise except for the nurses filling out forms and kids sleeping. The lights were flashing on the trees and decorations were glittering. A lovely Christmas scene. Then outside the children’s ICU two parents were hugging, in floods of tears.

 

Put it all in perspective for me. Reminded me of where I was…

 

Sunday 23rd December 2012 …

 

Lisa rang first thing, checking on how we’d gotten through the night. All clear I could report, thankfully. She headed off to do a few jobs before heading back up to us. About ten o’clock I spotted the neurologist on the ward. At least we wouldn’t be hanging round all day waiting to hear if we could go home or not. By the time Lisa arrived in, about noon, Olivia still hadn’t gotten to us but soon afterwards, she was at the door.

 

Olivia was happy with Fred, he could go home. Yippee, I could relax, even if she hadn’t wanted us to go we were going, I’d decided…Fred wasn’t hanging around the hospital for Christmas.

 

Now it’s Christmas Eve. The family are comfortable in our front room, waiting for Santa. Freddie is watching The Grinch, Ruby is watching YouTube videos and Lisa is under her blanket reading her Kindle…

 

Merry Christmas…

 

 

 

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Posted by John Verling

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