Saturday, 30 July 2011

30th July 2011

Steven continues to improve. Having been given extra confidence by the removal of most walking aids, he does a lot of walking exercise. Playing games with the physio’ staff, climbing stairs, more swimming. He still has the Velcro straps around his ankle, and now he has a very clever, moulded support under his toes on his left foot, to help them bend and straighten. However all this is conducted under severe pain. Following previously unclear x-rays, a CAT scan revealed that he has suffered a small fracture of the left hip. The result of this is lack of mobility and of course pain. He’s been told that it is likely he will continue to be in pain, unless the bone wears in a way which makes the pain bearable. The alternative is to have a hip replacement. The only problem with this is that any hip replacement operation will need to be repeated every 15 or so years. Steven and us have already made the decision that he will have the operation if and when the doctors agree to do it. Steven’s left elbow is also causing problems in that he can almost straighten it, but not bend it fully. This is caused by calcification in the elbow joint. This can also only be rectified by an operation. However Steven is improving so well that the doctors are considering sending him home and be dealt with as an out-patient locally. Steven and us would like him to be home, but would that move send him to the back of any queue and delay any operations? Would it be better to have the operations where he is, and delay his homecoming just by a few weeks? So again he has decided, if he can, to have the operations as soon as possible.
One small crisis last weekend. I accompanied Steven to our swimming pool, a manoeuvre we have done many times. I climbed onto the surrounding border, and stepped down onto the first step. Steven stood on the raised border. I stepped down to the second step, but before either of us was steady we both slipped. We both fell from the edge of the pool and onto the patio, where Steven’s head forcibly struck a large terracotta plant pot, breaking the rim of the pot. I had done my best to get under him as he fell but wasn’t fully successful. Steven is 6ft tall, and he was nearly one foot above ground level, so his head fell about 7ft to hit the pot. It was a very traumatic, worrying, and emotional time for all of us, but luckily no damage was caused to Steven. He certainly must have a thick skull.
After 260 days, finally the early morning daily stomach injections have been stopped. We’ve been trying to get this stopped for many weeks due to Steven not being bed-ridden. Steven’s stomach is full of bruises from the injections, so he is glad that they’ve been stopped.
As for other problems. Steven is still not fully socially and emotionally correct in his dealings with people. His behaviour isn’t inappropriate, it’s just sometimes childish. He truly is growing up again. Yet inter-mixed with this is beautiful speech, very deep, thoughtful, and intelligent. We’re sure that Steven is responding to treatment possibly due to him looking forward to his weekends at home, the days at the hospital now seem to fly by much faster.
We’ve been here at the hospital now for 7 months, I thought I’d share some observations of the place. There are probably about 60/70 patients there, and they’re all seen by physio’ staff at irregular times throughout the day. Sometimes there are over 30 patients waiting in the waiting room along with their carers, making it extremely crowded. Many patients and the carers know the histories of each other, and it’s pleasing to see the progress of these patients, but sad to see the ones that don’t seem to progress as quickly. At least 2 patients have died.
I haven’t got exact statistics, but as a rough guide, I would say that over 90% of patients are men. About 10% are children, say from a few months to about 7yrs old. About 10% are elderly senior citizens. The remainder in the main are young men. The problems are similarly varied. They are there due to serious injury or from such things as strokes. Everyone shares the achievements of the patients.
Steven is seen as “the miracle one”, because people knew of the circumstances of his condition on arrival, and have seen him improve.
Another lad of Steven’s age, and there due to a car accident, has been there 2yrs, but there are small signs of improvement. In the short time we’ve been there we can see that he is aware of what’s going on around him, and he smiles at comments made.
Another lad, there from a car accident, was extremely violent and nasty, unable to speak and fidgety, has changed so much he is now talking and is settling down.
Another young lad involved in a motor-cycle accident where his head caught on fire under his helmet is now walking and talking, and helping other patients, incredible.
Another man, there for 8months with very little improvement had collapsed with a stroke whilst playing football. We are noticing very slight eye and hand movements.
Another man suffered an epileptic fit whilst having a shower. He fell hitting the tap and knocked it to full heat, remaining there for 30minutes, receiving horrible scalds about his head and face. He is beginning to acknowledge people by making sounds.
There’s a lady who suffered from a virus making her lose all bodily functions except her eyes, and all her memory. She’s had to be taught everything, and has had to be shown photographs of her own family. She has walked, but has regressed a little. These things do take time.
Another man we first saw in a wheel chair, progressed to a walking frame to a walking stick, but has also regressed and is back in a wheelchair.
Another man from an accident was also in a wheelchair, then went to using a walking stick, is also back in a wheelchair.
There is a very young boy who repeatedly smacks his own face with his hand.
There is an elderly man who repeatedly screams at the top of his voice when excited, otherwise he’s quiet and talkative.
There is a lady suffering from severe injury from a car accident who constantly swears, loudly.
There’s a pitiful young girl there, about 10yrs old, who has no control of any bodily function, and who has apparently been abandoned by her family. There’s little anyone can do because people have their own patients to deal with, and the nurses are too busy, but somehow she does receive some care and attention from nurses, auxiliaries, and carers.
There are so many stories, and everyone shares with the trials and tribulations. But no-one gives up, the staff and carers are constantly working to improve the lives of the patients. We all acknowledge when there is an obvious improvement in any patient, whether it’s an eye or hand movement of minute proportions. But we wonder how we would feel if it wasn’t Steven making such good improvements, but it was one of the others who was improving. So it makes us wonder how these other people are feeling. We just have to hope that their charges improve also. Any recovery however slight is seen as a minor miracle. Using Steven as an example bearing in mind that he has remembered things from when he was in a coma, our only fear is that patients who cannot communicate in any way, are totally aware of what’s going on but are in no position to say or do anything about it. We just hope that they are not knowingly suffering inside.
best regards

Thursday, 21 July 2011

22nd July 2011

Hiya, the insurance doctor came to see Steven again as she does on regular monthly visits. All she seems to be interested in is reducing any payout of monies from the taxi insurance company. She doesn’t want to learn the truth of Steven’s injuries. Yes he’s getting better, but she doesn’t take into account the pain, the psychological trauma, the inconvenience to him and us, his embarrassment, his and our workload. Nothing!!! She says Steven can walk, but she doesn’t say he can walk only with assistance, either personal or mechanical. She says Steven can talk, but she doesn’t say that it’s with difficulty due to jaw damage. She seems not to care about Steven’s difficulty in grasping social and emotional issues. She doesn’t care about the awful scar on his left leg. She doesn’t seem to care that Steven has difficulty controlling his hands, sometimes he appears clumsy. She doesn’t realise that he gets nervous very easily, and visibly shakes when in public situations. She doesn’t want to know about the fact that Steven has difficulty regulating his own body temperature. Has she forgotten that Steven suffered horrendous brain damage and he has had to be almost re-born. Steven has had to re-learn everything. She has no feeling whatsoever for Steven’s feelings. There seems to be no thought for Steven’s long term future, whether it’s extra pain, extra health problems, or whether he’ll need help at home as time goes on. Steven will probably need a lot of money for his future, there is no guarantee that he will be able to work or obtain a pension in this current crisis. There seems to be no thought to our feelings, our work, our expenses. We are so angry that this situation has been forced on us. We suspect that Steven will only be given a certain amount of money, but believe me, whatever he receives, it will not be enough, and the more angry we get, the more money we want for him, especially when we seem to have no sympathy towards his situation. We are constantly contacting our solicitor to give him our feelings, we are Steven’s representatives and we have to take care of him and will push for what we believe he’s entitled to.
This is getting better, another good week for Steven. The physio’ staff now have the confidence to allow Steven to walk more and more on his own. Always under supervision but with no personal or mechanical aids, except for the vital ankle and foot supports. These are proving to be a boon, giving Steven more and more confidence himself as if he needed more. Steven now only uses the wheelchair for long outdoor excursions, otherwise it’s just the walking frame. His speech is occasionally a little slurred due to his difficulty in opening his mouth properly when talking. When yawning he opens his mouth wide, but when talking it’s different. Steven still tends to have social issues, in that he has little concept of time, or has the attitude “what’s the rush”, when we are waiting for him to do something or go somewhere. He doesn’t take any sort of criticism easily, so we have to be careful of what we say. He has a small appetite for hospital food and won’t eat extra food which could be provided by us, but when out for the weekend he eats well. Otherwise everything is coming along slowly but surely. We had another weekend at home. No problems with the journey. We had meals out with friends, and he saw his own friends. Returning to the hospital Sunday, we went to Benidorm where we met up with Paul. Also there by pure chance was our good friend, and as she says “our substitute daughter”, was Jane Heneghan with husband Paddy. Jane has been a loyal supporter of Steven in many ways, even though she hasn’t seen him for over 10yrs. A lovely reunion. After a drink or two, Paul took Steven back to the rented house and the hospital, whilst Pauline and I had a few days on our own back at home. Hardly a rest though, many jobs have piled up in our absence, but a rest it was. On Tuesday 19th we received the news by ‘phone from Paul, that Steven’s doctors are delighted with his progress and are considering allowing him home permanently, and to go to a local hospital as an out-patient. This is excellent news. Although these weekends at home are most welcome, and important to bring normality back into all our lives, they do make life complicated. For just over 7months we have lived between our rented house and the hospital room, taking it in turns to care for Steven. Whilst doing this we have to constantly plan ahead in all manner of things. Often things are in the wrong place when needed such as ‘phone chargers, clothes, cosmetics, documents, medicines etc. We never know when the mobile ‘phone will need charging, and we never know when someone is going to contact us regarding some aspect of our lives. If clothes get dirty, we need a spare set in both places. If we get a headache we need the paracetamol. Now that we’re coming home regularly, we now have a third place to consider. It certainly makes life interesting!!
Best regards Terry

Tuesday, 12 July 2011

12th July 2011

An excellent week for Steven. Small but noticeable improvements in all areas. He no longer uses the wheelchair within the confines of the hospital, using a walking frame instead to go from his room to physio’. He is successfully negotiating stairs, up and down. He is walking on his own, slowly but surely, including walking with his hands clasped behind his back to prove that he has balance. Sometimes his walking is quite fluid and natural, other times he can be clumsy, this depending on his level of pain, and how tired he is. He now has two supports on his left foot. One which supports and protects his left ankle, preventing the ankle from turning inward, the other a system of Velcro straps which makes his left foot adopt the correct angles when walking. Both supports are uncomfortable and cause a fair amount of irritation, especially in the heat we’re experiencing at the moment. Obviously whenever we see these improvements we offer encouragement, but he doesn’t need that, he’s so determined to do this. Swimming is still a problem. Formerly a competent swimmer, he now struggles in his actions, and in his breathing. His left arm has suddenly become straighter, whether this is from his limited swimming action we don’t know, but it’s certainly better. However he still cannot fully bend his left arm. Steven is now using his laptop on a regular basis, and is quite proficient in it’s use, showing improvement in manual dexterity, and in the way his mind is working. Steven was in a very reflective mood last week. He’s mentioned before that he feels that he doesn’t own the body he has. This time he was talking about how he is learning to discover people. He’s suddenly realised, with much surprise, that there are as many fake people as good people, and he has to learn who he can trust in the future. Although not making plans, he insists that he is going to start his second life, and will concentrate on himself in the short term. He is still prone to being upset when mildly admonished, so we try our best not to tell him what to do, or even tell him if he does something wrong, but just ignore his failings. On Friday 8th July, we again returned home for the weekend. No problems during the journey for Steven or his dog. After a full English breakfast en route, I took Steven into town to meet a good friend Veronica Lozano. I sat in the background whilst they chatted and laughed, it was good to see. Friday evening we all went to Alan’s Bar, where we saw Lyndsey Madden and Javi Seva. For Javi this was very emotional, as the last time he saw Steven was in the first few weeks of his coma. Steven and Javi were inconsolable, but so happy. They have known each other for over 20yrs, Javi seeing Steven grow up. Many others at the bar came to Steven to congratulate him on his recovery progress. Saturday evening I took Steven to the O Zone area for him to speak with Kelly Dintino(me in the background again), and then later with another friend Irene Duncan we went to Steven’s old restaurant Pizza Nostra in town. In town he met up with a walking/running friend Jose, who was so pleased to see him, and then he saw an old friend Pete, a regular reader of this blog, he too was pleased to see him. After an excellent meal, we went to Bar Cinco Lobitos, a favourite haunt of Steven’s to see the owner, Ramon, friends for 12 yrs. An excellent night, very emotional, but Steven handled it all very well. Sunday lunchtime, Irene joined us again for a meal and relax around the pool. Then it was the long journey home, this time without incident. Steven goes very quiet after his weekends away, and it just may be that he sees people his age enjoying themselves, and he cannot yet join in. Also he knows he’s going back to the pain and discomfort of physio’, and though he hates the expression “poco y poco” he knows that it’s true. We have to keep reminding him of how he was just a few short weeks ago. We are considering letting him read his blog just to show him how far he’s come along this road to full recovery, but I want him to tell me of his dreams when in a coma, so that we can tell him whether they were real or not. We’ll see.
Best regards Terry

Sunday, 3 July 2011

3rd July 2011

Not sure these weekends out are good for Steven. During the week he's been down and depressed, not helped by being told that he may have done too much the previous weekend. Too much walking, too much time in the pool, too many people, wrong foods. We can understand the hospital being careful, but people are different, and they all act and react differently to all kinds of stresses. Steven wants to work, he's determined, he wants to get better, and we're not going to jeopardise that in any way. We are the ones constantly supervising Steven, we are the ones who should be spoken to, and we've told the doctors this. We do what the doctors say and just bend the rules a little. As an example if the doctors say walk 50metres, Steven will walk 70. Steven has to get out there to meet people, to give him hope that he will be able to join them equally one day. We can't just wrap him in bubblewrap. There are people in the hospital who, due to Steven's improvements, are now much worse than him, a few are overweight, many cannot do what Steven can now do, surely the protocols cannot be the same for everyone. For the first time Steven showed his anger and/or frustration to his doctor and she was surprised. Whether this will enable her to change his routine we'll soon find out. This weekend Steven was given permission to leave the hospital for the weekend. We stayed in our rented house within sight of the hospital, due to it being Paul's birthday and if we went home we wouldn't be able to celebrate it with him. Friday evening we stayed at the house with a takeaway Chinese, and Steven using his laptop for the first time. Saturday morning he had a quiet day with no routine, and just gentle exercise. Saturday afternoon we went to Javea to meet up with Paul at chiringito, and drank mojitos watching the sea, although Steven had to make do with a coke. From there we went to the Arenal area of Javea for a bar meal in a popular area, followed by a drink in another bar where thre was an excellent singer Adam King. This Adam has also been involved in an accident where he broke his back, but he is now fine, and he did offer encouragement to Steven. It was here that Steven became depressed again. It must be hard for him to be like this, so close to being better. He just wants it to end, he's fed up and he's had enough, and he wants it all to end. He sees all these young people having fun and he can't even walk properly let alone join in. He feels that people are watching him trying to see what's the matter with him and may be picking up the wrong signals, them not realising what he's gone through. I mean, he can't walk around with a sign saying "I died 5 times" can he? It was a very tearful and emotional moment. But we've run out of words. What can we say that hasn't been said before. He knows he's getting better. He knows he has the support of all you people and us. Do the words become meaningless, only time will tell.
Best regards Terry