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

17Feb/130

Nurse Favourite

After last weeks post I had a visit from Dr Shahwan. He has this ability appear from nowhere, to teleport in from upstairs, just to add to his range of skills.  In his hand he had a few sheets of paper, his report on the telemetry from the previous visit. It wasn’t for our reading, not yet, but Amre went through it in detail. Not long after he’d begun, Lisa came back from her trip round Dublin, a break away before being locked up for the rest of the week.

The readings were in line with what he’d expected…a lot of the seizure action, about 75%, was coming from the left frontal lobe, the other 25% was from the right hand side but it looked like that too originated from the left before showing on the right. So far, so good. Because of the slowness of the left frontal lobe, the flow of electricity through the brain isn’t as smooth as it should be.  As a result, Fred has an ‘angry brain’ and one that isn’t functioning as fully as it should. This explains Fred’s temper tantrums, to an extent, but also his frustrations with education, how he can read something in the morning and not recognise a word in the afternoon. It was such a precise interim report, which gives us good hope for surgery still, but as always, Amre tempered our expectations. There is still a lot of road to go down and the PET scan he’d ordered for Friday was the next step. The radiologist, who was to do the PET, had been given full instructions from Dr Shahwan on what he was looking for and where he saw the problems. All this was great reassurance for Lisa and me.

The other big part of the week ahead were sessions with the Neuropsychologist and the speech therapist. The purpose of these is to set a baseline of Freddie’s abilities, to see what we’re working with and to compare with, after the possible surgery. It also helps us to decide where he is in his development, what level of help he needs and also what support he’ll need when he goes back to school. This is a great service for us to get,Temple Street is the only hospital with an in-house paediatric Neuropsychologist and she works closely with Dr Shahwan. It makes perfect sense to have all these people working in close proximity with each other, to know each other’s style and to know the high expectations of their colleagues. Its one matter to do a report and then send it to Dublin to someone you may never have met, quite another matter to compile one for top dog in the next office.

Dr Shahwan plans to make one report. This will be from his one on the telemetry, together with the Neuropsychologist and the finished one from the PET scan. The initial PET scan report is to be done by the radiologist. When Amre gets this he will not read it, but read the scans first, then do his report, only then will he read her input. Finally, he will put a final, definitive report together, bringing everything into one and only then will he deliver this to us. Such work but such wonderful work too, all done on our little boy with the idea of finding some solution to all he’s going through.

When Dr Shahwan left, Lisa and I really had nothing to say on what he’d said. What could we? He’d completely updated on all that was going on and what was going to happen, he’d left nothing to chance. There are no unknown unknowns with Amre.

We do know we’re in good hands.

Monday evening I was staying in the hospital. They have parent rooms, converted nun’s cells, which are comfortable and clean. The section is run by a lady who rivals Amre for efficiency and Genghis Khan for ruthlessness. Unless you have a parent room in your name, you’re not allowed near the onsite kitchen. More than once she put the run on Lisa, leaving Lisa with no access to tea making facilities. If Lisa gets a tea from the restaurant down in the basement, she’s not allowed drink it on the ward and the warden has her banned from the kitchen. The warden caught her at this once too and put the run on her again, no emotion wasted there.  The tea from the restaurant would have to be drunk  on the stairs or outside on the street with the smokers.

InTemple Street, efficiency runs from the top down and no breaches are tolerated at any level.

If this efficiency fixes our Fred, I won’t complain.

On Tuesday morning, Amre and I were due on the Pat Kenny show together, talking on epilepsy and services. Amre was the expert and I was the family perspective. Because some fellow in Rome had resigned the day before, our slot was delayed and kept being put back as the morning went on.  The two of us were on the couch in the studio, waiting to go on and we had a great time. Its not often you get a chance to get to know the person who’s working on your son. We spoke on anything and everything, laughing and joking and the two hours waiting went in no time. Once our time to go on arrived we were both very relaxed and almost indifferent to the fact we were going live to the nation. When I walked into the studio Pat Kenny put out his hand and asked...“How’s Freddie?” Totally took me by surprise, it was as any of my close friends would say it.

The piece went well and I hope we left the nation a bit better informed on epilepsy.

Back in Temple Street Lisa was very emotional. A morning of speech therapy and Neuropsychology had left her drained. We’re under very little illusion on what epilepsy has done to Freddie but having it all laid out for you is very upsetting. This was something Lisa was going to go through all on her own, as I had to go back down to look after darling Ruby. It’s not always as bad as it seems but yet seeing him struggle with very simple tasks is horrible to witness. Now, if all the questions were about Godzilla or Jurassic Park it might be a different matter.

On Wednesday morning Freddie had a session at the hospital school. The teacher sent Lisa off to get a cup of tea, for once she could go off in peace. While relaxing in the café her phone went, Fred had had a seizure. The one time she was away from him, typical. Typical the little man that as soon as he tries something on his own, the epilepsy wags its little finger. That is one wagging finger I wouldn’t mind breaking. At least it all happened in a place where he could be cared for and people who knew what to do were on hand. They got him back to the ward where he slept it off. Amre doesn’t want us to use the Diazepam anymore, only in emergency and the hospital was a perfect place to go cold turkey. He feels that constant use of the drug only slows Freddie’s brain further and is to be avoided. The experiment went ok, he had a couple more seizures but yet a big cluster didn’t develop, which is a relief, but it takes a lot for us to watch Freddie go through a few seizures each episode.

We’ll see.

On Thursday, Ruby and I left home early and were at Temple Street by one. The idea was to give the two ladies a shopping day in Dublin, well for Lisa to get out and Ruby to go to Forever 21. The two men were left behind. Freddie had taken a shine to one of the nurses, a pretty one too. All afternoon he was calling her over to show her his DVDs and trying to get her to sit with him. She was laughing and loving his efforts. About 4pm, they came to put the line in for his scan the next day. Amre wanted him fully sedated and so he was to get a general anaesthetic. Fred didn’t want the needle stuck into him. Nurse Favourite did her best to try calming him down. Eventually Amre, two nurses and the one doing the job, managed to hold him and get the line in. After the team had gone off, Freddie looked very sad to Nurse Favourite. She came over to see if he was ok. He looked at her with his big brown eyes and held out the bandaged hand. She cracked. “What would make you happy,” she asked. Freddie moved over slightly, patted the bed and she sat down to watch Sponge Bob.

Mission accomplished.

About seven o’clock Lisa and Ruby returned. Lisa had gotten her hair done and Ruby had a few bags. All in all, it was a great afternoon and soon after, Ruby and I left for Inchicore. At home with Conor and Cathy we had great fun, Cathy fussing over us, making us dinner, whilst Conor poured the beers. Such a great escape for us on these trips, having a welcoming home at hand. The two ladies went off to bed after a while, Conor and I stayed up to polish off the beers, it must have been 11 O’clock before we threw in the towel, leaving the two empties in the recycling.

Friday morning I was up at 6.30 and out the door by 6.50. The morning chorus was beginning as I walked to the car, reminding me spring is here. The trip across Dublin was lovely. Despite the Satnav telling me differently, I took Cathy’s directions and went down by the canal. Before I knew it, I was in Blackrock and the sun was just rising over Dublin Bay, a lovely sight. At the clinic, I’d arrived earlier than the special taxi coming over from Temple Street so I took my time taking in the surrounds. Such a difference.Temple Street an inner city hospital in a rough area, Blackrock Clinic, the best private money can buy in a very salubrious district.Temple Street is full of people, full of hustle and bustle. Blackrock is very sedate in contrast and you could be anywhere except in a hospital. Give me the character of Temple Street any day, with maybe a few less people. Certainly the food is much better at Temple Street and the parking cheaper. One thing I noticed too was that all the senior staff we dealt were on secondment from the public service. Blackrock didn’t have the qualified staff to deal with Freddie. Even though the radiologist was a Blackrock employee, she was instructed by our Dr Shahwan.

The morning went quickly. They gave Freddie a shot and he was asleep in seconds. Before we knew it, the scan was over and he was in recovery. He woke of his own accord and they sent us home about eleven o’clock. We headed back to Temple Street, packed up and headed off to Inchicore, to collect our darling girl. Cathy was busy cooking breakfast when we arrived and it was gone two before we headed home to Kerry. Reluctantly we left too; Freddie had to be dragged out the door as he was convinced Conor was on his way home.

Now it’s Sunday evening and we’re back to normal. Ruby is back to school tomorrow and it’s almost as if the week gone by never happened.

However, it did and so much now depends on last week’s activity.

So, so much.

 

 

 

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Posted by John Verling

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