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

25Nov/120

Operation Necrotic Appendix

Well it’s Sunday afternoon but none of us seem sure what day or time it actually is right now. It has been a hectic few days and we’re still not back to normal. Freddie and I are sitting in the hospital, Fred is watching The Fantastic Mr Fox on his DVD player and I’m just feck-arsing around.

Over the last few weeks Fred has had an upset tummy from time to time, nothing that bit of Paralink hasn’t been able to solve. This week gone by, he has had the odd bit of upset but has still been able to eat and drink. The problem when he’s on medication is that from time to time he can get a bit of upset, especially when levels are being increased or new meds introduced. He’s a good man for vomiting; I think it’s a coping mechanism for him, to help deal with the changes his body goes through.

On Thursday evening he was off his food a bit, just had a small bit of chicken and plain rice for dinner. About 9pm or so he fell off to sleep but didn’t go into a deep sleep, which is his usual form. Fred, Ruby and Lisa go into such deep sleeps so quickly that trying to rouse them after ten minutes or so can be very difficult. It’s the opposite with me and thankfully, the kids have inherited their mother’s sleeping patterns. So when he still wasn’t asleep properly by about 10.30pm, the two of us went off to bed, to try get settled.

About an hour or so later he said he’d a pain in his tummy so Lisa gave him some Paralink to help settle him.

The two of us went off to sleep and we slept soundly till about 5am when Fred woke me saying he was feeling sick. I got him to the toilet, where he tried to vomit but with no luck. After we settled back in bed, I gave Lisa a shout and she came rushing down. As I had to drive to Dingle in the morning Lisa sent me upstairs and she got in beside the little man. When I came back down at 7am, he was no better. He’d vomited a few times and had a seizure too for good measure. Lisa gave him some Diazepam and had him someway comfortable in the bed.

Ruby and I went off Dingle, neither of us too willingly either. Tiredness, the idea of the drive, Friday morning and Fred being sick were all combining to make us want to stay. The fact that we were both up and dressed helped push us out the door.

About 11am, I rang home, and the two were up and dressed, downstairs on the couch but little Fred wasn’t much better. Stable but still a sick little man and I could tell from Lisa’s voice that she was worried. When I got home about 2pm he was lying out on the couch and if anything, looked worse than he had done at 5am.  Lisa had been dosing him with the necessary meds but he looked wrecked and could barely communicate with us. He’d a few small seizures too, five second frontal lobe ones. As I tried talking with him, he just looked blankly back at me, unable to answer any question.

We were worried, very worried. Lisa said the hospital and we both knew we hadn’t an option. We quickly packed him up, jumped into the car and off we went to Kerry General. On the way over, he had another small seizure and memories of last winter, rushing to hospital, came back to haunt me.

I dropped them at the doors of the A&E and drove off to park the car. When I got back, they were in a cubicle and the nurses were looking after my little man. The nurse did the usual obs, they took some blood and a line put in. He looked wrecked, totally wiped; neither of us had seen him look so badly in a long time. Just in case we weren’t worried enough another small seizure broke through.  That time in the A&E was just horrible, Fred looked so sick, his temperature was up and all the machines he was wired to, were beeping. That’s the worst thing about those machines, you have no idea what they are checking and why they are beeping. We just didn’t know what was wrong with him. This time it wasn’t epilepsy and it threw us completely. Any parent will know that the worst thoughts fly around your head in such circumstances. Lisa was sitting with him, cuddling him; I was trying to occupy myself by walking around, reading info notices, anything to distract myself.

At 5pm Lisa had to go collect Ruby from the bus, thankfully I’d given her a tenner that morning, just in case. The two men stayed in the A&E cubicle, Freddie somewhat awake, me holding his hand. His urine test came back clear, some good news but still didn’t explain why our Fred was a near zombie. About 5.30 the porter came and took us to the ward.

We were back in the Cashel ward for the first time in seven months. The familiar faces, happy to see us, lessened the upset of being in hospital again.

In his room, Freddie settled into the bed but was still fairly non-responsive. The blood results were back and they showed a likelihood of infection but it was still too soon to say what was causing it. Mamon, the doctor who has been with us through so much of Freddie’s time in hospital, ordered a strong antibiotic. The nurse put Fred on a drip and added the dose of antibiotic. Soon afterwards, Lisa and Ruby came back. Fred roused himself a little but was still not really with us. After Lisa got him up and watching a DVD, Ruby and I went home. It was nearly 9 O’clock and the two of us were tired and hungry.

For the rest of the evening Lisa and I texted each other; Fred was still more or less the same.  About 11pm, Ruby and I went to bed. Fred was sleeping ok in the hospital, Lisa and the nurses taking good care of him.

Saturday morning and I was up and over to the hospital by 9am.

Fred was no better when I walked in. I was hoping to see him sitting up eating breakfast but no such luck. He still looked wrecked, trying to watch a DVD but still out of it.

He wanted to go to the toilet so I took him out of the bed. The poor man couldn’t straighten up and was walking very gingerly. Lisa thought he was sore from the vomiting; he’d been doing a lot of retching in the last 24 hours.

For some reason or other, I said that maybe it was his appendix.

Nurse Marie took me up on this and called a doctor to check him. The doctor was down in a matter of minutes and did a brief check. Fred was tender to the touch but wasn’t complaining of any pain. We only knew he was in pain when the doctor dug his fingers into Fred’s abdomen because Lisa felt him flinch. The doctor called his boss. He too thought there was a tenderness in Fred’s belly. The surgical registrar came down, did a few checks and ordered an ultrasound.

Down in the X-Ray ward they wheeled Freddie in for the scan. That was the worst ten minutes of the weekend so far. The radiologist was very thorough and very quiet. She said she would be, as she was concentrating on what she was doing, she would talk afterwards. Fred was dropping off, very sick in himself, very, very worrying and upsetting. Lisa was sitting next to him, holding his hand, whispering in his ear. I was doing the worst thing possible, standing behind the radiologist, looking at what she was looking at. How was I to know what to look for? The worst thoughts were going through my head. The biggest one was what if his appendix was fine... What then was wrong?

After what seemed an age she finished and the porter wheeled Freddie out and back to the ward. I stayed to get the news from the radiologist.

“It’s the appendix,” she said to me as soon as the porter had left.

Oh the relief, I could have kissed her, instead I welled up, thanked her, then thanked her again and ran off to tell Lisa.

Back on the ward we waited for the surgeon. After a while, he came down with his team, confirmed the diagnosis and had Lisa sign the consent form.

Then we had to wait for the call from the theatre.

Eventually we got the call, about 5.15, and off we set. Nurse Marie with us, as she always is, keeping us steady, keeping us reassured and fighting our cause. A truly dedicated, wonderful nurse…words fail me when I try to describe how much she means to Lisa and me.

In the theatre, Marie went through Freddie’s notes with the staff and told them what was what when it came to dealing with Freddie. They were in no doubt about what she expected of them…

They dressed me in theatre clothes and I went in with Freddie. Lisa and I had been reassuring him on the way over that he was going to get the pain taken out. In the operating room that it was all I could say, over and over again. He knew something was happening but took it all in, trusting in his parents that all would be ok. Once they gave the anaesthetic, I left, hugging them all as I went.

As Lisa and I walked back to the ward, I thought of something. The two of us were alone for the first time in years. It really was a strange feeling, we walked hand in hand along the corridors like young honeymooners, it felt wonderful.

For the next hour we drank tea, read books and waited. About 6.45pm, we walked back over and waited outside the theatre. I had a look around the door. The nurse said they weren’t finished yet, about another ten minutes or so. It sounded a bit strange.

About 7pm, one of the surgical team came out. Things had not gone as planned. The appendix had actually burst, not fully but in the centre and pus had seeped out. The team was working at cleaning the wound and the area surrounding where the appendix had been.

He went back in. Lisa shrank to the floor. I stood there in shock.

“What the fuck?” was all Lisa could say.

The surgical registrar came out and explained in more detail but it was still the same story. What he did add was that Freddie probably had the problem for seven or eight days. All that time and he hardly complained…some brave little man.

It would be a while before we’d be allowed in.

About 8.30pm, a nurse from the children’s ward came over to collect him and brought us into the theatre. We still weren’t allowed beyond the red line, half-ways up the hallway. After what seemed like forever, they wheeled Freddie out to us.

The brave little man was lying out on his bed. Amazingly, he was awake.

“How’re you doing?” I asked.

“Fine” he answered. Some man, all he’d been through and he gives me that for an answer.

“They took the pain away Mum” he said next.

Brave, brave little boy.

Now, it’s almost 24 hours later and he’s fallen asleep in the bed next to me. The pain is under control, he’s on two strong painkillers. Also, they put him on three different antibiotics to fight any potential infection. We’ll have to wait and see if they got all the pus out when he was in surgery, but the signs are good so far.

The surgeon came round this morning to check on Freddie.

“It was a very bad appendix,” he answered, when I asked him what had happened, “it was a necrotic appendix.”

Necrotic appendix…that’s a couple of words I won’t forget in a hurry.

 

 

 

 

 

 

 

 

 

 

 

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18Nov/120

Just a Normal Week

It’s Sunday evening and the family are settled indoors, away from the winter storm blowing outside. Poor Muttley the dog is in his kennel but he has been fed and gave me a look earlier that said ‘don’t expect to be going anywhere today.’ Ruby, having discovered EBay, is fighting with her mother over make-up brushes she wants to buy. Whatever happened to that little bundle we carried home from the hospital more than fourteen years ago? Well I suppose she has grown up to be the wonderful girl who knows her own mind and I wouldn’t change her for the world…

Last week finished and a new one began with a not totally, unexpected upheaval. All day Sunday Fred was a bundle of shakes and we were waiting for something to happen. No sooner had he settled down to sleep than a seizure broke through. A horrible one, with the ferocity of a force that couldn’t wait any longer to burst through. As soon as the first one finished, it came back to kick him a second time, just in case it hadn’t knocked him enough first time round. We settled him and gave him the shot of diazepam that we hoped would get him through the night. The strength and anger of the seizure upset us, it was like going back to last winter when all this began. About eleven o’clock he seemed settled and we took him up to bed. Lisa did the night watch duty as I had an early start taking Ruby to Dingle. About 6.50am, I came down to Fred in the middle of another bad one. Lisa was holding him, getting the diazepam ready for another dose.

“It’s the fucking Phenytoin,” she said, referring to the new drug we were trying. It obviously wasn’t working, if anything it was making things worse. “I’m taking him off it today.”

Couldn’t argue with that one. We skipped the morning dose and gave him an extra tablet of the Tegretol, to get him over the hump.

The list of medicines that have failed Freddie is growing by the week.

After a brief chat with the team at CUH, it was agreed that dropping the Phenytoin was a good move and Fred’s dose of Tegretol is to be increased gradually. The change in him was remarkable. Back to the man of a couple of weeks back, full of chat, drawing, painting, doing jigsaws and practicing his schoolwork. It was as if the cloud covering the little man’s brain had been removed. The ‘fucking Phenytoin’ was doing no good whatsoever.

During the week I had a chat with our pharmacist about what had happened. While he didn’t think that it couldn’t have caused the level of Tegretol to drop so quickly, John did think that the Phenytoin might have inhibited it from working properly. Just Fred’s luck, a rare enough side effect had to be the one he’d have, not just the drowsiness but the interfering with the one drug that was working.

As soon as he got over the Sunday night/ Monday morning kicking Freddie got on with his week as if nothing happened. His powers of recovery are amazing and it’s a credit to the little man how quickly he puts everything behind him.

Last night the shakes set in again, just the usual sign that something was brewing. He’d had a few days shake free so when they became obvious again it was a sign that a seizure probably wasn’t too far away. About 7 O’clock he had a sleep in Lisa’s arms, after a fine dinner of a chop, carrot, sweet corn and rice. He slept for a couple of hours waking about nine o’clock, a bit better in himself, but the shakes were still there. About 11.30 the two of us went up to bed, after his snooze he was in no desire for sleeping. Cuddled up to me in the bed he said he was feeling a bit dizzy and I held him close to me, knowing that a seizure was on its way must be so scary for the little man.

After reading my book for an hour or so, I put it down but stayed sitting up. Fred still hadn’t gone to sleep, not fully by any means. I dozed and about 1.45 the seizure broke through, not a bad one but a minute long piece of agony to watch nonetheless. Lisa came down and gave him a shot of Diazepam to settle him properly. Back in the spare room again, I couldn’t sleep and popped down a few times to check on the two. They were doing fine without me. Eventually I fell asleep only to wake again about 7am, out of habit more than anything else. The two downstairs were still sending up zeds and I had myself a lie in till almost 10 o’clock. Fred got through the night and the early morning danger points without anything happening.

What a relief...

The family have now had a lazy Sunday. The only time one of us went out was when I went for a tin of beans at breakfast time. Lisa just shouted, “How can that be fucking true?” at the TV because of the results of the X-Factor.

Ah lazy Sundays in winter, you just can’t beat them….

 

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11Nov/120

Shaking All Over

Freddie is asleep in his mother’s arms. The duvet, the white blanket as he calls it, has been brought down from the bedroom and he’s snuggled up under it. The duvet coming down from the bedroom is a sure sign of winter, that and Arsenal’s title challenge slipping away.

He’s asleep as the introduction of the Phenytoin is taking its toll. As usual we don’t know if this is a temporary thing or a sign that its not going to work as an AED. Lisa and I are beyond making any sense of it all, we just have to try the drugs, that we do know, but ask us if we think it will make a difference, neither of us have a clue at this stage. It’s certainly making him more jumpy, his limbs are constantly twitching and at times his whole body makes these uncontrollable jerks. He walks at a slow pace, seemingly being careful of his peripheries, and again he’s finding speech difficult. For Freddie’s sake we hope this is a temporary stage before there’s an improvement, but only time will tell.

Last Sunday night, Freddie and I were going to bed about 11pm. As he’s falling asleep during the day or Lisa is encouraging him to snooze so as to control the jerks, his sleep pattern is all over the shop. Usually he’s off to sleep by about 9pm, after having a sip of “Daddy’s beer” if I’m lucky enough to be having one. As I was washing my teeth on Sunday evening, Fred was choosing a book for a bedtime story. Suddenly I heard a “whoah” from the bedroom and the thump of a body hitting the carpet. I rushed out to find him thrown back between the bed and the radiator. Thankfully, he was conscious but very dazed. He’d had what he calls a fright, a tiny frontal lobe seizure that doesn’t develop but enough to knock him off his feet. I called Lisa and she rushed upstairs, swearing as she ran. She gave a shot of Diazepam to settle him and sent me to the spare room as I was working in the morning. The two cuddled up in the bed, as I left I looked over at the man, still awake but the eyes closing, he never has it easy.

On Monday morning I came down to that sound I hate. Freddie moaning in an after seizure state. As it was only 6.50am I had hoped to surprise Lisa with an early morning cup of tea. As it was, she was helping Freddie to the bathroom, the big seizure had struck as he slept and as he as was coming around he started to moan, meaning he needed the bathroom.  We sorted him and put the little man back to bed, to let him sleep. Lisa got her early morning cup of tea, Ruby and I got ready for the Dingle departure at 8am. Before we left Lisa, Ruby and I had our morning coffee in the bedroom while Freddie slept. Lisa remarked that it reminded her of last winter when many a cup of early morning coffee was shared in Tralee General Hospital. At least this winter we’re sharing that cup of coffee at home, an improvement of sorts on last year.

As the week moved on Freddie got shakier and often I’d come home to find him asleep. The one day he wasn’t, Thursday, he came up to me as I walked in…

“Daddy, I’ve bad news,” he said, his little hands cupping his mouth as if he was revealing a secret.

“What’s that little man?” I asked in reply.

“I fainted!” his little eyes wide open, hands thrown up in the air.

I looked at his mother. She’d come in from the kitchen about 4pm to find him getting up off the floor, seemingly ok but Fred thought he’d had a fright. Maybe something had hit, who knows.

Friday night he was particularly bad, shaking and jerking all evening. Just as he was going to sleep, a small seizure struck, something that has happened for a while now. It was just a small five-second frontal lobe one but another memory of last Winter when going to sleep was a regular trigger. A regular trigger for a full-blown seizure and a trip to the hospital. This time we were able to give a shot of diazepam but instead of settling him, he woke fully. It’s amazing the ability this man has for processing medicines. Sometimes they knock him, sometimes they do not. Lisa took him off to bed about 9.30pm to try settling him in a different environment but when I went up about 11pm he was wide awake. Mummy was despatched and he cuddled up to Daddy.

Soon Freddie was sawing logs, another of my father’s phrases for sleeping, wherever he got them all. My father used them a lot, as he was always encouraging us to go to bed early, probably more out of wanting peace for himself more than any Victorian attitude to child-rearing. 8.30pm was my bedtime growing up, no watching DVDs or X-Factor in our house, the house would be silent by 9pm, in darkness by 10pm on school nights.

Without exception…

The weekend has gone much as the week before went. Fred has been sleepy and dropping off at regular intervals. Last night, about 6.30pm, he asked if he could cuddle up to his mother and was asleep before he was in her arms. Twenty minutes later he was up again, the power nap had done its bit. The same happened during the day today but with no ill effects slipping in.

Now its Sunday evening, Freddie is watching a DVD, Ruby and Lisa the X-Factor. Not a programme I like watching and I sit with my back to the screen.

 

So she doesn’t feel neglected, I turn round when Nicole Scherzinger comes on…

 

 

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4Nov/120

The Thousand Yard Stare

The star man of the house is lying next to me, tying to get in a snooze before lunch. Despite the fact he only had breakfast about 11 o’clock, it’s now 1pm, he knows lunchtime has still to come. It was a late breakfast so I tried to introduce the idea of brunch to him…he wasn’t having it…

 

“This is a big breakfast,” I said bringing in the tray to him “it’s like having lunch and breakfast together.”

 

“This is not my lunch,” he said indignantly, looking at the plate and then at me, hand furiously waving in dissent, “this is my breakfast, I’ll have my lunch later!”

 

No point arguing I thought, I’m not going to win this one.

 

The reason for the upset in schedule was that old favourite, epilepsy. All day yesterday, it was hanging over our Fred. His was finding speech difficult and his eyes had that far away look or the ‘thousand yard stare’ as I sometimes call it. Wikipedia describes the thousand yard stare as… “The thousand-yard stare, or two-thousand-yard stare, is a phrase coined to describe the limp, unfocused gaze of a battle-weary warrior.” Used initially about US Marines during the horrors of the WW11, it somehow catches our battle weary warrior on days when epilepsy is trying to sneak up on him. During the day he was shaky and a bit out of it. Around 1pm, Lisa got him to snooze for a couple of hours and he was someway improved when he woke up. Later however it started to sneak back in and we feared the worst.

 

Because he’d had a big snooze during the day, we couldn’t get him off to sleep at his usual time, so the two of us went off to bed about 11pm. In our bedroom, he had that stare again, badly this time but he assured me he was fine. A telltale sign that he wasn’t, was that he only wanted me to read one bedtime story. Normally I’d be lucky to get away with three; indeed I was expecting the demand for five.

 

“Do you want three stories?” I asked.

 

“No, just the one,” was the answer.

 

We cuddled up in bed, reading Farmer Duck. About three pages in and the head turned in that stiff, involuntary jerk, his glasses flew off and the shuddering began. All I could do was hold him and whisper gentle thoughts. It was all over in about a minute, the after jerks lasted for another minute or so and I called Lisa.

 

We both knew it had been on the way, wished it wasn’t but it eventually caught up with us. Lisa gave him a shot of diazepam and he rolled over into my arms, still not fully ok but fighting back with all his might. Soon Fred was in a deep sleep and I was wide awake. Sometimes I wonder, if, in those early hours of the morning I have the thousand yard stare as well. After a while I started read my book and the sound of it falling to the floor woke me about 2am. Switching off the light, I turned and kissed the sleeping man before catching the night train again.

 

About 6am, I woke and he was sleeping soundly beside me, sending up Zeds as my father used to say. Lisa came down about 7am to give his medicines and a glass of water. He hardly woke, not a great sign, I thought. Immediately he was back in a deep sleep, a very deep sleep.

 

About 7.45 the epilepsy came back for another go. The seizure wasn’t as severe as last night’s one, almost like a car trying to start on a winter’s morning but still lasted the minute or so. Settling him in next to me, I called Lisa and she took over. She despatched me to the upstairs bedroom while she cared for the man. The family slept till mid-morning, thence the late breakfast and the trying to introduce the concept of brunch…

 

Last Tuesday Lisa popped out to the butchers on her own, I was at work but Ruby was home on mid-term break. The two were cuddled up on the sofa, doing drawings and watching TV. Not long after Lisa had gone, the inevitable happened. The one time she finds it in her to leave Freddie, a seizure strikes. Luckily, if that’s the right word, Ruby was well able to cope; she’s witnessed enough of these happenings to know what to do. Moreover, she has the Shanahan female gene of being able to cope no matter what the circumstances. To her mother’s chagrin she hasn’t got the housekeeping one, but the coping one kicked in on Tuesday.

 

Ruby was able to care for her brother till Lisa got back and by the time I was home from Dingle all was right in our home. Fred slept for the evening, waking for dinner about 8pm and carrying on as if nothing had happened.

 

That’s the great thing about Freddie; he is able to carry on regardless. No matter what the epilepsy throws at him, he keeps going. He may be a battle weary warrior but he’s always ready for a tour of duty. It now looks likely that we’ll have to introduce a new medicine to the mix, the Tegretol, while stopping the clusters, isn’t preventing the seizures on its own. The new AED, Phenytoin, is an old one, developed in 1908 but well tested and sometimes the old things work much better...Richard Nixon was on it, for anxiety, but Tricky Dicky was able to function on it and being able to function is our main concern. No more zombie Fred for us, not after we’ve seen the great improvements over the last two weeks…

 

Even now, after the night and morning he just put down, Freddie is sitting up watching Jaws 3 while making Lego Ben10 figures. A curious mix I know…

 

It is amazing what a bit of RnR can do for a battle weary warrior…

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