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

30Dec/120

Talking Nonsense

A week of Christmas has gone by and all is well in our little household in Ballyard. Even though neither of us said anything, I think both Lisa and I feared that it would be a Christmas of shakes and seizures. However, we just had the most peaceful seven days in a long time. A veritable Christmas miracle…

Christmas morning broke and it was a miserable, dark winter’s day. The sort of day I love, when you don’t have to feel guilty for not moving off the couch, just beating a track from the kitchen to the front room and back. Fred woke at 8am and by about 8.30, he was ready for going downstairs. Lisa and Ruby were waiting for us at the top of the stairs and we went down to see if Santa had arrived. Under the tree there was a big red sack waiting for the man and he wasn’t disappointed. Godzilla and Ultraman gifts, Santa knows what our Fred likes. Ruby got clothes and makeup galore, within minutes, she was back upstairs to try them all on and I went to make the breakfast.

The rest of our day went smoothly. Every now and again we’d ask Fred if he was ok and by the end of the day, he was getting fed up with all the questions. He’s been on this new medicine, Clonazepam, half a tablet morning and evening, and it seems to have done the job. The involuntary jerking has gone, he’s not shaking and we just had eight days seizure free. The only problem is that its only recommended for short term use, it’s a valium derivative and, as the housewives of the ‘60s found out, it can become quite addictive. The neurologist only wants him to take it five days running at a time, preferably only three. It seems to have had such a good effect at stretching the gap between seizures that we’re loath to stop now…something we’ll have to discuss with Olivia in the New Year.

The eight days seizure free was only broken early Saturday morning. Fred had gone to bed late and only dropped off to sleep about midnight. The problem with holidays is we’re rising late and doing nothing all day. Its difficult to break the cycle when the whole household is lazy and the weather doesn’t encourage you either. When I went to bed, about 11.30pm, he was still awake, waiting for a bedtime story. I had to be tough on the man and refuse him a story; I didn’t want him to get in the habit of waiting for me every night. “Ok Dad,” he said when I told him no story and to go to sleep. He was still restless when I put down my book about 12.30am and I kissed him goodnight before closing my eyes. About an hour later, I was woken by the first frontal lobe seizure, no more that five seconds but he makes a noise as if he’s struggling for breath after getting a huge fright. He rolled over. Another struck about ten minutes later. The exact same as the previous one and I called Lisa.

Lisa came down and took over the night watch. About an hour later she called me…he’d had another four, all the same. We decided to give him a half shot of Diazepam, to try get him off to sleep. The seizures were striking just as he was falling into a deep sleep, thus preventing him from falling into a deep sleep and so the cycle continues until you intervene. We all get the sensation from time to time when going from stage 1 sleep to stage 2 sleep, its like you’re falling off a cliff and you wake to stop yourself. When you suffer from epilepsy instead of waking, you have a seizure. Thankfully, on Saturday morning, these were small five-second frontal lobes unlike the full seizures of other nights. Was this another sign that the new med combination was working? Unfortunately, you never know with epilepsy…

Fred slept the night from then on. I woke about 7.30am and went straight down to see what was happening. As always, I feared the worst but thankfully he was still in a deep sleep with Lisa dozing beside him. About 9am, we went downstairs and I went to get the breakfast. Fred wanted to help but Lisa and I were still unsure of his stability but he was having none of it. As he got up of the couch I took his arm to try hold him back but his legs went from under him, another five-second seizure. He looked at me in fear and began to cry, the fight upset him, as did the fall to the ground. Thankfully, he hadn’t been in kitchen turning the rashers…just shows how careful we have to be with him.

That was the last of them however and we spent the day in seventh heaven.

Ruby had Tara staying over and the two went into town shopping after breakfast. The ladies who shop and lunch then headed off to Dingle on the 4pm bus, probably good for us all to have a break. Certainly, mother and daughter had a good old set-to before Ruby left the house. Probably all about nothing and after apologies for things said, Ruby went off. Freddie and I did the sensible thing and stayed in the front room…”oh the noise” Fred said at one stage….

The big present for Freddie from Santa was a new portable DVD player. He’s had a few over the years, all did their service but the last one didn’t last kissing time. As a result, he’d been using my laptop for the last couple of months as we waited for the big man to deliver a smashing present. I’m not sure where Santa is getting his gear from these days but the DVD player kept on defaulting to French…

“This DVD player keeps talking nonsense,” Freddie said in annoyance, before I changed the settings back to English…

Oh how we all love Fred’s way of putting things.

Here’s to 2013 and more wonderfulness from our wonderful boy…

 

 

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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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16Dec/120

I’d Love a Pint but…

Another weekend and we’ve got to Sunday evening. Freddie is sitting on the couch demolishing a plate of chicken, mashed potatoes, cauliflower cheese and fresh peas. Now he is stuffed, watching some old Mr Bean TV shows and I have my back to it. Ruby after demolishing a plate similar to Fred’s is on Facebook, tired after two days of shopping. Yesterday I took her, Hannah and Tara to the great city ofCorkto do some Christmas chopping and today Lisa took Ruby into Tralee for more of the same.

Lisa also went and got the Christmas tree. Freddie has been on about getting it for the last month. For some reason or other we just didn’t get it yet, but I’m one for just the week before, much to the kids displeasure. Also on the mind of Lisa and I is how Freddie collapsed in a heap when we were putting up the tree last year and spent a few days in hospital. Something we’re keen to avoid these days. Now when will we pluck up the courage to put it up and decorate it. The tree is ready and the decorations are in a box, we should get the two together by Wednesday.

The week gone by has been much the same as previous ones. Even though we are seeing improvements in his awareness and interest in the world around him, Fred is still getting seizures. On Tuesday he was in great form, chatting, drawing and talking about friends he hadn’t seen for a while. When he was settling for sleep on the couch, he asked for a sip of my beer. A tradition now, when I open a beer he has the first sip. Something I too used to do with Dad’s bottles of Phoenix or Guinness back in the seventies. As he held the glass, he jerked or didn’t concentrate properly, both consequences of the meds, and spilled it on the blanket. With both parents giving out, he went to the corner and stood with one foot leaning on the other knee and his arm against the wall. A classic Freddie pose. After we cleaned up the mess, he settled into the crook of his mother’s arm…

“Ah Mum,” he said, “when I was in the kitchen with Dad I had the confusion.”

The confusion is his way of saying he feels a seizure coming on. He had been helping me cook dinner earlier and actually seemed fine.

“Do you have it now?” Lisa asked.

Fred nodded…

Lisa and I took him up to bed and as I go the bed ready, he went to the bathroom with Lisa. On his way to bed, I went to give him a cuddle and he fell into a seizure. Lisa cared for him on the carpet and when it was all over, we put him into the bed. We gave him a shot of diazepam and I left the two to settle in for the night.

Back downstairs, Ruby and I watched some TV and after she went to bed, I read for a while.

On my way to bed, I looked in on the two, Freddie was awake. Sometimes he has a remarkable tolerance of medicines, the diazepam should knock a horse but Fred was having none of it. I kissed him goodnight and headed off to the spare room.

The rest of the week went ok, he was having little frontal lobe seizures, five second ones every now and again but nothing too much. It just happened that the day he was due to go to the hospital, Wednesday, for blood levels on the Tegretol, he got sick. So the appointment was put off till Friday.

Friday morning and Lisa is with Fred in bed. Ruby wasn’t up for school, sometimes all the driving to and fro is just too much and we take a day off. Suited me perfectly, with my course starting at 9am, Friday is a busy day for me. The luxury of being able to have a coffee without having to rush, was much appreciated. Lisa and I were relaxing and chatting when suddenly Freddie went into a seizure. The usual one minute one, but a seizure nonetheless. Lisa comforted him, settled him on the pillow and gave him a shot of Diazepam. This time he rolled over and fell back asleep.

He’d had a tiny one with me about 6.30am but we didn’t think much of that. Plus as he was going over to the hospital for blood levels we’d held off on giving him his medicines. Maybe we should have been extra careful and given the meds but we do need to get the levels taken so we know where we are with his daily dose. It has to be at least twelve hours since a dose before you take the blood sample. As a result we still don’t know if he’s ok on the current dose or if he could take an increase. Lisa and I both feel that an increase might stop the current cycle of every couple of days, I’d take once a week at the moment. The problem is that you can’t increase the dose without checking how the liver is processing the current one. A little too much can stop the whole thing working properly causing all sorts of problems.

Unfortunately, Freddie is the man for the problems, if there is one out there Fred will find it.

On Friday evening Ruby had the two, Hannah and Tara over for a sleepover, part of the whole trip to the real capital. After feeding the hungry teens, I went to meet my fellow students for an end of term pint. This was the first time I’d been out for a pint for a long time, first inTraleesince we moved here eighteen months ago. The company was great but I couldn’t relax, all around me were people drinking and having fun. All I could think of what could be happening at home. I kept checking my phone in case I missed a call or text. This epilepsy has us living on our nerves night and day. Much and all as I wanted a pint, I only risked a non-alcoholic Becks, I just couldn’t let myself have anything stronger…

Maybe next time I’ll have the courage for a real man’s pint….

Now after a weekend of travelling to Cork, leaving my darling daughter free on the poor shopkeepers of that fair city, its Sunday and we’re settling into an evening of relaxing. Freddie is now reading some story books Lisa got for him. Its lovely to listen to hear him read out loud, pride in his achievements, looking at me from time to time to check if I’m listening and to see my approval.

There is a bottle of 6% Shepherd Neame IPA waiting for me in the kitchen, the little man might get the first sup again…

 

 

 

 

 

 

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9Dec/120

They haven’t gone away, you know…

Sunday evening in Ballyard. Ruby is on the couch, texting, on her laptop and watching the X-Factor. Who said she wasn’t a multi-talented child? Her mother, looking effortlessly beautiful is lying out on the other couch and Freddie is just drifting off to sleep. The poor little wonderful man has just put down another tough week.

After nearly eight months without a serious seizure cluster one struck this week. When he’d had a good ten days seizure free I thought he might be heading into a good stretch. No such luck... On Monday he was in great form. Doing his homework, laughing and joking being just like the little boy we know he can be, if given the chance. About two o’clock I went up to my office to do some work.  As I was settling down, I heard that horrible, horrible sound of Freddie in a seizure. Even though I was two floors up, the high-pitched scream of the fright he gets, made its way up to me. By the time I got downstairs Lisa was with him, taking care if him. The little man had just been starting his lunch; he’d hardly had a bite when the epilepsy struck. A full-blown, minute and a half long seizure. Lisa gave Fred a shot of Diazepam and I tidied up around him. The two settled in on the couch and I went back upstairs to try do some work. Nothing too unusual for us, Fred had had a few days seizure free but now was back in it.

When I came down again about an hour later Freddie had just had another small five-second frontal lobe seizure. Again, nothing we weren’t used to lately. About 4 O’clock, he had another full seizure, 90 seconds long. This was something that hadn’t happened for a while, it didn’t look good. Before I went to collect Ruby at 5 O’clock Fred had another full seizure, three big ones in three hours is not good. Just after I got back with Ruby, another big one broke through. As you can only give Diazepam once every 8 hours, we were stuck. We had to go to the hospital, for the first time in seven months we would have to take Freddie in because of a seizure cluster. The disappointment was massive for the Lisa and me.

Lisa quickly threw a few things into a bag and we bundled Freddie out to the car. Last winter Lisa had a bag permanently packed and ready for the hospital. One thing I didn’t miss was seeing that in the spare room. This was also our first time since moving to Ballyard. With Lisa and Freddie in the back I drove over to KGH, Fred fairly knocked out in the back. I dropped them at the entrance to the A&E and went off to park the car. By the time I got back and into the resuss room, the doctor was working on Freddie. He’d had another seizure, another full blown one. Why was this happening again? Lisa and I could only think that maybe the levels of Tegretol had continued to slide after his appendicitis and days of being toxic. The doctor was trying to find a vein, so he could take blood and put a line in. Not an easy job with Fred’s hard to find veins. With much patience, he managed it.

With Freddie and Lisa someway comfortable, I went home to feed Ruby and get things we’d forgotten on the rush out the door, like Freddie’s glasses. On the way back over Lisa texted me to say they were heading up to the ward. Once I got there, I rushed up the stairs and into the ward. The nurses, though glad to see me, were surprised, as Freddie hadn’t come up yet. I dropped the stuff by his bed and went off to find them. After about ten minutes waiting by the lifts there was no sign of them. Down I went to the A&E and found them in the corridor. Freddie had had another seizure and they had given him Lorazepam. The drug that stops the seizures in their track but is so strong he has to get it via IV. Now he was totally zonked.

The porter wheeled him up to the ward and we settled in for the evening. Remarkably, Freddie woke up for a while but was totally spaced. I’d forgotten how Lorazepam affects him, ruins him really but at times he has to have it. Seven months without it was a great run. Now Lisa and I were fretting over why we were back in hospital, back to last winter’s situation. The last thing we wanted was to be back to going in every week, Freddie getting big doses of Lorazepam to try to stop the seizures. It must have something to do with his blood level dropping due to the interruptions of the previous week, we both thought and hoped.

About nine o’clock Lisa sent me home to look after Ruby. I kissed my little man; he tried to say good night but just couldn’t get the words out. As I walked back to the car I was really down, really upset at being back to this again. Back home I texted Lisa and the news coming back was that he was settling and falling into a deep sleep. A relief, at least the Lorazepam was working…

In the morning, I drove Ruby out to Dingle and immediately headed back to the hospital. The two had had a quiet night and Freddie was still dozing when I arrived in. The doctors had taken a blood sample to test for the levels of Tegretol and Lisa was waiting for the result. We had coffee and scones on the bed, just like so many mornings last winter. When Fred woke up he wasn’t hungry and he couldn’t talk, the usual after a shot of Lorazepam. He watched a DVD for a while but soon was back asleep. The levels came back at 41, a drop from the 56 they had been at but still a good level. The feeling was that all he had been through the previous week was affecting its effectiveness. The neurology team inCorkfelt the same but recommended we go up half a tablet more in the evenings.

Fred was too wrecked to go home Tuesday but when I came in early Wednesday morning he was sitting up, watching a DVD and hungry. He was getting back to some sort of normality. The doctor was happy for us to go home and Fred walked out as if nothing had ever happened. What a man! Back home I went back to my office to try catch up on my work, at almost the same time as I’d tried to do the same on Monday. This time there wasn’t any interruption.

Now though Lisa and I were back to watching every move of Fred’s, dreading another seizure breaking through and maybe another visit to the hospital. We wouldn’t know if the Tegretol was working again until it was tested…We didn’t have to wait too long.

Five o’clock on Friday morning a seizure broke through. Just a small one, but one that woke me, nonetheless. I don’t think I could sleep through one anyway, the slightest twitch from the man and I’m awake. Lisa gave him a shot of Diazepam and took over watch, as I was taking Ruby to school, she sent me downstairs to sleep. Not that I got much, I was worrying so much, every noise had me on alert, waiting for Lisa to call me. By the time we headed off at 7.30am Freddie was doing fine, fast asleep and no sign of a seizure.

Throughout the morning, I rang home but all was fine, he had the odd small frontal lobe seizure, but no major breakthroughs. Maybe the Tegretol was beginning to work again. Who knows?

That seems to be a major problem with epilepsy and other neurological conditions, nobody really does know. As parents, we just do what we can to make Freddie safe, give him his medicines and mind him every day.

It’s all we can do.

 

 

 

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2Dec/120

The Warrior

Sunday afternoon, a week and a day since the operation and things are heading back to normal. Whatever passes for normal round here... Freddie and I are watching The Santa Clause a favourite movie of mine. We watched it last night and loved it so much we’re watching again this afternoon. It’s great when your kids like the films you like, even if its just a feel-good Christmas one. At one stage, he was laughing so much I thought the wound would burst open. He’s inherited a love of slapstick from me, something I in turn inherited from my father. From what my father told me of his parents, I don’t think a sense of fun was their thing. Reared in the Victorian era struggle and strife was more their thing, no time for slapstick.

 

Last Sunday Freddie was very tired, not surprising after the Friday and Saturday he’d put down. When I left on Sunday evening he hadn’t woken much during the day, he just lay on the bed, getting the odd swab of water on his lips. About 8pm I went home to look after Ruby, leaving Lisa to care for Freddie. Lisa has an incredible ability to keep going on very little sleep, just cups of tea and the odd biscuit. Sleep in the hospital, especially last weekend, is only by lying across the end of the bed. They do provide a camp bed for parents but I think Lisa just wants to be as close to her little boy as possible.

 

When I came back in Monday morning, about ten o’clock after dropping Ruby to school, he was still the same. Completely zonked, his eyes were rolled up into his head, we couldn’t rouse him. The nurses came in and tried as well. No luck. They were concerned, as Fred should have been someway awake by that stage. The doctors felt the same, even though the surgeon was happy that the wound was healthy. The team on the ward however ordered a full set of blood tests. The fear of infection was high, due to the necrotic appendix and all our worst fears were running through our heads. The Halapannaver case was also there…not negligence just the fear of septicaemia

 

The blood tests came back clear. Which of course was a major relief but didn’t explain why Freddie was so wrecked? He tried waking a few times, at least we managed to wake him, but he couldn’t stay awake for long. Lisa and I wondered if his Tegretol levels were ok. The liver needs to process a certain amount of the drug per day.  Ironically, he had been due to go in for a blood level check the Friday we rushed him to hospital. Blood levels show how much of a drug is in the system, they should be around a certain therapeutic mark, the point at which too much is a long-term danger.

 

By now, we were frantic. Our boy was a wreck, knocked out and not responding to anything. I bit him hard on the arm, not a flinch. Then I tried the ear, he turned away from me, nothing else. That sick feeling in my stomach came back, the one that had been there Saturday evening. Something was up, something wasn’t right. I had been looking forward to spending the day with Freddie, him watching a DVD, me reading the paper.

 

“It must be the Tegretol,” Lisa said.

 

I grabbed the laptop. A quick Google check for Tegretol side effects and there it was… ‘Drowsiness’. Well he was certainly drowsy…

 

 

Manon, one of the doctors came in. He’d been on to the epilepsy team at CUH and they asked for a blood level on his Tegretol to be done. Due to the operation, his levels could be up as the liver function might slow or possibly one of the three antibiotics he was on was interfering someway.

 

They took more blood. We had to wait for a while for the levels to be done. In the meantime, we tried waking Freddie but no joy. He’d rouse slightly but drop off again. It was really upsetting. When he had to go to the toilet, we’d almost have to drag him across to the bathroom. The surgeon wanted Freddie moving as it lessens the chances of infection.

 

The levels came back. They were at 90 per 1000 of blood. The usual level was 40. The highest the neurologist was looking for was around 46.

 

Freddie was toxic.

 

If it’s possible to do something the hard way Freddie will find it. The poor little man just doesn’t get a break.

 

Manon said that one of the antibiotics, Flagyl, eats all the enzymes in the liver. Those very enzymes that are supposed to filter the Tegretol through the liver…Freddie had to be on Flagyl as it was vital for fighting any possible infection,

 

No wonder Freddie was in such a state. The advice from CUH was to stop the Tegretol, to bring down the blood level of the drug. This we did and subsequent tests saw the levels drop, a bit at a time.

 

Tuesday saw Freddie a bit better. He sat up a bit, watched a DVD and still slept a lot. By Wednesday, he’d improved greatly by when I came in early in the morning. The blood levels had dropped again. By this stage poor Freddie was like a pincushion, he’d had so many needles in him. To add to Fred’s complications its very hard to find a vein on him that gives blood easily. Every time he needs a blood sample they have to prick and prod at the little man till they find a flow. One of the doctors on Tuesday had to take blood from between Fred’s fingers as all other veins had dried up.

 

Wednesday evening and the Freddie was out of the woods. He was off the antibiotics and the painkillers. The nurses were not worried about him anymore and moved us to a room away from their station. Its always a good sign when they don’t think you need constant observation. I stayed with Freddie that night, the two men keeping the nurses entertained. About eleven o’clock Freddie wanted water and the two of us walked down to the nurses station. Fred leaned against the desk, one hand holding the wound, the other holding up his water jug.

 

“Ah excuse me,” he said, “can I have some more water please?”

 

It was like a hospital scene from a war movie. Nurse Angie broke into a big smile, took the jug and sent us back to bed. A lovely cold jug was delivered within minutes.

 

Thursday morning and they sent us home. Such a turnaround. Less than week since we’d rushed in, gone through hell, and the little man was deemed good for road.

 

Being at home again was wonderful. We quickly settled into routine and got life back on an even keel. Fred had to go in to hospital again on Friday morning to have his stitches taken out and have yet another blood test. They were down to 56 this time.

 

Freddie has been walking around like one of the walking wounded all weekend. Now we’ve got to Sunday and he’s still shuffling round in his pyjamas, hand on the wound all the time.

 

At one stage today, he said, “Dad there’s a hole in my body; I don’t want my insides to fall out!”

 

He’d pulled one of the steri-strips off the incision and there was a little hole.

 

Luckily, we had a mobile wound station on the go and I bandaged him up again. He went off slowly, hand on his side, gently feeling his way.

 

Freddie the warrior, off to fight to the next battle.

 

 

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