Monday, 26 October 2009

The Belfast trip

Matthew has improved, doesn't need to be hospitalised any more and will, from now, be an outpatient at the cardiac unit.

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Saturday 17th October.

After arriving at Belfast International Airport, I go to the Royal Belfast Hospital for Sick Children. The same hospital where my son Colm fought for his life 28 years ago.

The taxi leaves me off at the entrance to the hospital. It is at the opposite side of the building to the old entrance I had used so often while Colm was resident there. The doorway leads into a recently constructed extension to the hospital. There is long, wide lobby decorated with pictures and sculptures presumably aimed at a juvenile public. Perhaps they are meant to give the impression that this is a fun place to visit? In the centre of the floor is a large display of toy animals under thick glass, with long, curved fluorescent tubes to to make an impressive visual impression. Unfortunately the fluorescent tubes don't work...

The lobby leads into a narrower, brighter corridor with glass walls. Outside the walls I get an unobstructed view of untended patio areas and the brightness highlights the fact that the corridor needs cleaning. A wall sign at the end of the corridor indicates that the intensive care unit is up a gloomy flight of stairs. Then another dusty corridor and a couple of sets of self-opening doors lead into the much cleaner lobby of the intensive care unit and operating theatres. A relatives' room is off the lobby, and Jenna and husband Colin are waiting for me here. Matthew is in the operating theatre.

The hospital is on an elevated site and the waiting room has good views of the wide valley which encompasses Belfast.
I get a good view of the twin spires of St Peter's cathedral overshadowed by the ugly, dominant tower of Belfast City Hospital and lots of grey buildings framed by a grey sky. In the foreground is one of Belfast's many gable wall tribal murals. (Click on the images if you want to see them enlarged.)
It's depressing.

Let's have a cup of tea, suggests Jenna.

We go into the old Children's Hospital building and proceed through a dirty corridor with a cracked floor and turn into a dimly-lit, filthy corridor lined with black refuse sacks. Soon the smell of burned fat offends my nostrils. Here is the café.

The café is bright and cheerful and clean, but the smell of burned fat pervades. The cooked food on offer consists of refried, pre-fried, fat-laden potato bread, sausages and some dried-up, brittle bacon. It occurs to me that there should be health warning here. The chatty staff operate at a snail's pace. Fortunately the tea is palatable.

There is no craic. Conversation is forced, leaden; everyone is worried about baby Matthew, now being carved up on the operating table.

We go back to the relatives' room. I realise that I need to go to the toilet. It turns out that the public toilets are far away, in the entrance lobby. Luckily my need is not urgent. When I get to the toilets - there are only two to service the entire children's hospital! - I discover that one of these has no light. Someone has, I'm guessing, tried to use it anyway and the nice urine puddle on the floor is testament to the fact that they had aimed badly. The other toilet is smelly, but serviceable.

On my return to the relatives' room, we receive the welcome news that Matthew is back in the intensive care unit. The operation has gone well. We can see him. Jenna and Colin are elated.

Matthew is motionless, his tiny, yellow, jaundiced body attached to several banks of electronic equipment. He cannot breathe unaided and his heart cannot function unassisted. It is simultaneously incredibly sad and happy - sad that he should should be here like this, and happy that he survived the operation.

The staff in the intensive care unit are extremely friendly, tactful, helpful and informative.
The ward is spotlessly clean. It's a shame that the rest of the hospital isn't like that.

Over the next few days, travelling to and fro the hospital, I get a chance to see how Belfast has changed since I left, 15 years ago. As in many other cities, modern development has robbed entire areas of their identity. The security situation has improved, but Belfast is still a very troubled and divided city and tribal symbols (flags, graffiti and murals) are still strategically placed to indicate which tribe rules which area. Police are still equipped with flak jackets and guns. This isn't exactly conducive to anxiety free ambling in the quieter areas. The economic recession seems to be biting hard here and about 25% of the city's shops appear to be vacant or up for sale. There are a surprising number of boarded-up derelict buildings.

The hospital is situated on the west side of Belfast in what was always a “dodgy” area. It's still a dodgy area. It is Sunday morning, and the main road to the hospital is closed due to suspected terrorist activity. We have to get there by a different route.There are lots of bomb scares, the taxi driver tells me. On the way back, there is a police road block. It is still there on Monday.
The heavily fortified building is a police station.
A police road block is in progress.
Here is the road block from the opposite direction.

In case anyone is in any doubt, I really did not enjoy my time in Belfast. This gives me conflicting emotions since it is my home town and I feel that I'm being disloyal to it. The situation has improved since I left Ireland's shores 15 years ago, but I'm sad that things haven't improved more.

I'm going back to Belfast tomorrow morning. Joseph, Orla and my granddaughter Shannon are accompanying me this time. Since Matthew isn't so ill now, my visit will be much less stressful. Perhaps I'll like the city this time. Or even dislike it less. We'll see...

Thursday, 22 October 2009

Agoraphobia - another slap in the face

Marie's first reaction to my decision to go and see my daughter and critically ill grandson was, ”What am I going to do?”

This is the nature of agoraphobia. Its needs must be met before anything else can be considered.

Marie has never been able to stay at home while I was outside our local area. Therefore I had to arrange for Marie to stay at her parents' house while I was in Ireland and for one of my daughters – Colleen – to look after her until she could get there. The downside of all of this was that the children would miss school during my absence.

While travelling to Ireland it suddenly occurred to me that if I was hospitalised we would have the same problems. When I was last in hospital with kidney problems, two of my adult daughters were still living at home. They were able to look after Marie and the children. They even brought Marie to see me in hospital. Now that they had moved out, it would seem that if I was to go into hospital, not only would Marie have to go to her parents', 1½ hours' drive away (thus not able to visit me often), but also the children's education would be interrupted.

Not a happy state of affairs.

I was therefore pleasantly surprised to learn, when I phoned Marie from Ireland, that she was still at home. Colleen had driven Marie to Weymouth to collect my mother-in-law. Marie's mother was now staying at our house, and would stay until I returned home from Ireland. She would be taking the children to school.

Marie now knows that she can stay at home – albeit with a “safe” person – when I am away.

This is a great relief to me and, although they don't realise it, a great benefit for the children.

Equally important, it is another slap in the face for Marie's agoraphobia/monophobia demon.

Tuesday, 20 October 2009

Baby is improving!

Lucky baby Matthew is winning the fight to live!

More about why he is lucky later. First, here he is, just after surviving the operation on his heart.

Matthew had recovered enough yesterday to come off life support. He opened his eyes and mum Jenna was able to hold him.

He has still got some problems, the most serious of which is a hole in his heart, but the worst is over. Today he was moved to the congenital cardiac unit where he will receive less intensive specialist care. He is expected to recover sufficiently to go home in the not-too-distant future.

The only bad news is that he is more like to suffer heart problems in the future than the average person.

Why is he lucky? Here's the story...

On Friday, Jenna's midwife called to see her. It was an unplanned visit. The wound from Jenna's c-section had become infected and she had been taking antibiotics. The midwife was in the area and thought that she would take the opportunity to see how Jenna's wound was reacting to medication.

Inspection of the wound over, Jenna and the midwife were chatting when Jenna felt the need to visit the toilet. Almost simultaneously, Matthew began to cry. Jenna went to him to see what was wrong. A rancid smell emanating from the direction of the noisy baby was a pretty good indication of his problem.

"Just when I need to go to the toilet urgently, Matthew needs to be changed," Jenna complained good-naturedly.

"Don't worry about that," replied the midwife. "You go to the toilet and I'll change the baby."

While changing and bathing Matthew, the midwife could see that all was not well with the baby.

"Jenna, I think Matthew isn't breathing properly," the midwife told her when Jenna returned.

"I know that," said Jenna. "I've taken him to the doctor twice and the hospital once, and they've told me that there's nothing to worry about. Some virus, probably."

"I think you need to take him to the hospital again," said the midwife. "I'll call them and tell them that you're on your way."

Matthew was examined almost immediately on arriving at the hospital. A few minutes later, he was in the intensive care unit, and Jenna learned that her little boy had heart defects and was critically ill.

Later Jenna learned that if she had not presented the baby at the hospital on Friday evening, he would have died during the night! Matthew's life had been saved by way of a chance visit by Jenna's midwife. Now you can see why I call him lucky!

Friday, 16 October 2009

Baby's life is in the balance

Baby Matthew is in the intensive ward at the hospital on a life support machine.

Today we found out that he has heart defects. He has immature, narrow arteries and two holes in his heart. He is to have a make-or-break operation in the morning. Jenna told me that she needs me to be with her so I am flying to Ireland early (very) in the morning.

Daughter Colleen is staying with Marie until her parents come to take her to their house. The children will go there too, and will be absent from school until I return. Such are the consequences of having an agoraphobic, monophobic wife.

I'm keeping my fingers crossed.

Sunday, 11 October 2009

The dinner party

There's this TV programme called "
Come Dine With Me" (in the UK - other countries have their national variations. Click on the link if you don't know what this programme is about, or you'd like to know what your country's version is called). Marie and I find it very enjoyable. My older daughters and their spouses also enjoy watching it (some more than others). Marie thought that it might be fun to have our own "Come Dine With Me" competition, and mentioned this to my sons-in-law. They were enthusiastic about the idea, and soon the whole family was involved.

After pairing now-single Colleen with family friend Guillaume, we had four couples and we decided to dine at each other's houses on consecutive Saturdays. Lots were drawn to determine the order in which we would be hosting the dinner parties. Marie and I were to be the first hosts. Diners would give each of the host couples marks (out of 10) and the winning couple would get a meal at a posh restaurant paid for by the losers. To make sure that everyone had an even chance, everyone would post their menus on Facebook by 9 p.m. last Wednesday, and all meals had to be totally home cooked.

Thus on Saturday last, Marie and I gave care of Joseph and Orla to our baby sitter while we prepared the meal. Marie had selected the starter and dessert, and I had selected the main course.

This was our menu -

Bruschetta with salad garnish

Moroccan spiced roasted Exmoor lamb shanks
Maris Piper potatoes and sweet potatoes
Selection of vegetables

Individual strawberry or banana pavlova

Cheese tray
Selection of biscuits

Tea or coffee
Selection of chocolates

By lunch time on Saturday, Marie had cooked the meringues for the pavlovas. They looked perfect.

I had marinaded the lamb shanks all night in my specially prepared, 12 spice, red wine marinade. I individually wrapped the lamb shanks in tin foil and put them in the oven, five hours before they were required. I cubed the potatoes, coated them in olive oil and spices and put them in the oven just two hours before required. The tomato-based sauce was prepared and cooked and the vegetables - baby carrots, miniature courgettes, baby corn and asparagus tips - were ready for their few minutes in the steamer, just prior to serving.

Preparations complete, and with Marie busy creating her bruschettas, I turned my attentions to getting the dining room ready.
With just one hour to go, I thought I noticed the faint smell of burning. Marie was changing into her evening wear, so I quickly checked the cooker.


Someone had turned the oven up to 250º! (Probably Orla, when the babysitter wasn't looking.)

I took out the somewhat charred potatoes and the tray of lamb shanks. Although a little burned, the potatoes still tasted good. Since the lamb shanks were wrapped in tin foil, it was impossible to know whether or not they had been incinerated. There wasn't enough time to prepare anything else, so I decided to take a chance and serve them as planned.

The guests arrived bearing gifts of fine wine and were soon sampling the culinary efforts of Marie and myself. Marie's bruschettas were superb and she was duly complimented. The lamb shanks, when unwrapped, turned out to be crisp on the outside, but very tender, succulent and aromatic on the inside. The marinade had done its job superbly. The potatoes were equally delicious despite their charred appearance. The main course had almost turned out the way I had hoped. Later, the meringues Marie had prepared were absolutely perfect and her pavlovas were a big hit.

After dinner, our guests requested that I play the piano for them. I was able to play some of their favourite tunes and I remembered some popular French melodies which greatly pleased Guillaume. After much wine consumption, festivities ceased around 2 a.m.

Our dinner party had been a great success. We retired, happy tired, looking forward to seeing what the other dinner parties will have to offer.

And Marie's anxiety was absent all day long.

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Did you know that Tesco sells saffron for almost £6,000 per kilo!!? (That's about $4.300 per pound.) You knew that? Well, it was quite a surprise for me.

Friday, 2 October 2009

My autistic son - Back in the saddle again

Colm has had many riding lessons, but few as important as yesterday's.

And this is why...

Our local branch of the Riding for the Disabled Association provides riding lessons during school term time. This means that during the summer, it is closed for lessons for 5 weeks.

Five weeks is an eternity to Colm, if it means 5 weeks without riding. So we looked around for somewhere else to go during the summer - somewhere that would be sympathetic to Colm's peculiar needs. We found such a place - or so we thought - near Ilminster, thus not far from where Colm lives.

Colm was well pleased with his new riding school and, despite all the staff and all the horses being new to him, adjusted extremely well. The first weeks were very enjoyable, but then there came a point where the inexperience of trainer and horse of having pupils like Colm began to show. The owner of the school was taking a lesson with Colm and moving things a bit too fast... She tried to get Colm to do a small jump while cantering. Colm looked uneasy and tried to object, but she ordered him to continue. His lack of confidence caused him to let the reigns go loose. The lack of direction caused the horse to refuse the jump. Colm went sailing over the horse's head, landing heavily on his side.

Colm got to his feet quickly, but looked shaken and very distressed.

"My arm," he said to the trainer.

"It's only a bad bump," said the trainer. "Come up here and we'll get you on the horse again."

I knew from Colm's demeanour that it was more than a bad bump, and went over to the trainer to tell her so. She argued with me and wanted Colm to continue with his lesson, but I wasn't having any of it. I took Colm to the car and then speedily to the hospital.

An x-ray proved that my suspicion had been well founded. Colm had broken his wrist. An hour or so later he was wearing a rather large plaster. Throughout the 3 hours we had been at the hospital, Colm had been the model patient. He was compliant in every respect.

His first plaster was rather heavy, made him very itchy and became quite tight, which affected Colm's disposition. He became a more than a little tetchy, so it was a relief when, after x-rays showed that all was as well as could be hoped for, this was replaced by a smaller, lighter one. The healing process continued and last week the plaster was declared redundant and removed. Colm's wrist is as good as new.

This week Colm went back to the RDA centre. His delight at returning there - the moment he had been anticipating for all those weeks - was obvious for all to see.

Apart from some issues arising from his broken wrist, Colm's life continues to improve. He has been 2 years at his current address, and he is now in his most settled period since leaving home 7 years ago. The 3 sisters who live in Taunton take him out regularly and he visits Marie and me from time to time. He seems very satisfied with this arrangement, and now when he comes to our house for dinner, is ready to leave after a couple of hours. Progress indeed.

Oh yes - the other riding school - Colm won't be going back there!