Monday, 28 February 2011

28th February 2011

I've written about the eepops oopops, (it’s actually Upupa epops!!) that was said by Steven with a Groucho Marx sort of look, twiddling fingers, rolling eyes etc. Here's some more Stevenisms. The place where we crush his pills had some residue of pills, so Steven says "Clean that, it looks like I've done a line of coke". The nurses and us are laughing our heads off at his antics. Just hope this isn't a sympton of inappropriate behaviour in PTA. I gave him a dessert mixture of, wait for it, strawberries, ice cream, strawberry yoghurt drink, and crushed malted milk biscuits, he has a taste and says "Is Mum here" I say no she's at the house, He says "This is (expletive deleted!!) gorgeous". He went to see the donkey and saw it eating an orange which had fallen in it's own muck, and Steven keeps talking and laughing about that. I could go on, but the whole day was a riot of laughter. Steven has such an amazing smile, no wonder the nurses are after him. He still keeps crying, and he says it's with happiness. That started again this morning when he was told his tracheotomy had healed completely and was now closed, with no need for a dressing. At the same time, his left foot injury was declared healed, again with no need for a dressing. So tears all round again. He's making good progress, we hope it doesn't stop. Sunday morning he remembered everything that had happened yesterday, from the jokes to going for a walk to seeing his dog, this is all good for the PTA, new memories are important.
Monday morning, injury on right foot healed enough to have dressings removed, another plus for Steven. These signs are important for Steven, because even he can now recognise progress. Again he retained his memory of the weekend.
We now don’t know how to handle Steven at the moment due to his increased talking. To listen to him, we can’t make our mind up whether we’re laughing at him, or with him, sounds horrible, but he does seem very innocent and vulnerable. When we have the opportunity we’ll ask the doctors, but it’s possible it’s all part of the PTA. There’s no doubting his intelligence and language skills, but it’s like listening to an old man with a child’s voice. We’re sure speech therapy and any sort of psycho’ therapy will correct this. Also today he walked 12 steps with the help of 2 nurses, but he’s still dizzy and tired afterwards. He says it’s the balancing which is the problem. His progress in such a short time has been amazing.
We have always told him about messages of support from people, but now he understands them, remembers them, and is grateful for them, and again that starts him crying, because it’s only now he’s fully realising what’s being said about him.
He says he has been through hell, and is beginning to remember much of the pain, but doesn’t yet want to know the full details of his ordeal. He originally thought he’d been involved in yet another motorbike accident, but now knows it was when he was in a taxi. He cried when he knew that his girlfriend, Veronica, had been injured.
best regards

Saturday, 26 February 2011

25th/26th February 2011

thought it was time to send you a photo' of Steven to the family. Taken today in glorious sunshine, at the front of the hospital, sitting upright in his wheelchair. He's had a good day today, but he is extremely emotional. We brought back from his house a bird-of-paradise flower which has taken 7yrs to flower, very time he looks at it he cries. The flower now has 3 sets of wings, it's gorgeous. We feed him, he thanks us, then cries again. We tell him he's getting better, he cries again. One of us walks into the room having been out for an hour or so, he cries again. He says he's crying with happiness. He still doesn't like to go to the physio' but we have to continue to tell him it's the only way he'll get better. A lady who for a long time has been staring into the ceiling in the hospital has suddenly started to move her head, and today she started speaking. Every day we see some sort of apparent minor miracle. Steven next.
Steven's progress for the last couple of days has been remarkable. I just managed to briefly see him sitting unaided on a bench in physio'. He has told me he is standing for longer periods, and though he feels dizzy, it's not as bad as before. When standing, he stands in a "loose" frame, with a nurse standing close by in case he falls. His talking is improving all the time except when he's tired. He is talking about everything, old and new, even a joke. There is a bird locally called a hoopoe (google it), it's latin (or even Spanish) name is something like eepops oopops. Steven said that this name was invented by someone who was smoking weed, and with a pretend cigarette in his hand and a smile on his face, he made us laugh so much. He cried at seeing his dog. He still claims he is crying because he's happy and knows he's getting better. Still sleeping well.

Thursday, 24 February 2011

24th February 2011

Steven is going through a very strange phase at the moment. He is very emotional about almost everything. He cries over the smallest thing, whether it's bringing his bird-of-paradise flower from home, receiving verbal or written messages of support, or just doing him a food treat. He often says "this isn't fair" or "why me". All we can answer is, that all that's behind him, it's happened, concentrate on getting better. He hates going to physio', sometimes saying he doesn't want to get better. So we have to remind him, he's not going to get better lying in a bed, and he's got a lot to live for. He often forgets things within minutes, as per the PTA, other times his memory and conversation is wonderful. His speech is often slurred, this makes him think he's going crazy because we can't understand him, or in his words "you're doing my head in". But he can't or won't open his mouth wide, unless it's for a spoon full of food!! He is sleeping very well, no moaning nor discomfort, despite daytime complaints of pain to leg and arm. We now get about 7hrs sleep, the longest period being 3hrs. So we sometimes take a daytime nap (Nuria --- siesta). He is having more food delivered, and it's thicker because he can take it by mouth, and of course we're still giving him many treats, such as cold custard (Nuria----natilla o flan) and sponge cake or coconut biscuits. He has lumpy porridge, sometimes mixed with weetabix for breakfast. He is putting weight at last on his legs. Today, whilst waiting for him to come out of physio', a carer for Steven's friend here, came running to me, to tell me to go to the sliding door to see Steven walking. By the time I'd got there he was just sitting in his chair, grrrrrrrrr.
best regards

Monday, 21 February 2011

21st February 2011

We've all had an extremely emotional weekend. Steven has been very lucid and open for long periods of time. He has cried so much, he says, through happiness that he is okay and getting better. He cried when we told him that Veronica had been slightly injured. The crying was full-on, really upset, which made us all feel the same. He says he doesn't deserve the attention he's getting because he's been a bad lad in the past. He doesn't want us to worry about him. He misses us when we change "shifts". He constantly wanted to talk about anything. He wanted to know about the accident, but not what's happened to him. He was surprised at how long he'd been in this situation. But then in amongst all this, he forgot who I was, and forgot my name. He again forgot he was in hospital. At times his speech was slurred and low. But when he was okay he insisted on sending messages via hotmail and facebook. I typed them at his dictation.
Best regards

Friday, 18 February 2011

18th February 2011

Today we spoke to one of Steven's doctors. She was more than pleased with his progress, and in fact had called us to see her 3 weeks before she normally would. These doctors are so experienced, they normally know at what stage a person is at in his recovery. Steven is now in what's called Post Traumatic Amnesia, or PTA. If you wish to know more, visit website, However, if you put PTA in the search engine it comes back in Welsh! I don't know why and haven't the time now to check it, but I assume you could copy the section into Google's translator to have it in English or Spanish. But basically it is describing Steven perfectly, and gives a great understanding of what's going on, or could go on in Steven's brain, including regressing to childhood, and not knowing where he is, which I've described in previous updates. What happens next with Steven is determined by the length of time he is in PTA, and whether he goes the violent way or the placid way. This is the unknown. None of this takes into account his body control which is of great concern to us. But we are still hopeful of a good recovery.
Best regards Terry.

Thursday, 17 February 2011

17th February 2011

a rough few days. Generally speaking Steven has been calm, and has slept well at night. However there have been some disturbing features, all of which are, too us, big backward steps. Steven has been very delusional, whether this is caused by his medication, which is constantly being changed, of whether it's his awareness of what's going on, but it does show the fight between the 26 year old body and the 5 year old child within it. In no particluar order, he has said that he can feel a tube moving in his head, and he rubs his head where the probe was inserted at Benidorm; One night, he said that his feet were on fire, and I was to call an ambulance, and also a nurse to come with some ice for his feet; He says that the nurses aren't really nurses but are strangers changing him in the middle of Carrefour (A Spanish multi-store like Tesco); He wants his new black trousers to wear for his first day at school and to see the headmistress; He thinks he is in a hotel, and wants us to pack his things and go home. A lot of this is accompanied by real crying episodes of despair, and to see that in who was once a fit young man is heartbreaking. It doesn't matter how much we hug him or talk to him, he's inconsoleable. His worst episode was on Wednesday afternoon when he just refused to go to physio'. He was crying loudly, so much so that the nurses tried to calm him down, but it didn't work. He cried and fought all the way to the lift and held his arms out in attempt to stop me pushing him into the lift. He was in this state for at least 25mins, until the physio' staff started him working. All of this doesn't do any of us any good, and we wonder how much more of this we can take. We too cry every day. But we are heartened by friends messages and the obvious evidence of improvement of others.
His feet injuries have almost healed and all dressings except small plasters have been removed. He is visibly putting on weight. His skin is in good condition, helped by the copious amounts of Nivea cream he has rubbed on every day in his massages. His right arm, which has been injected with botox to relax his muscles is now so relaxed he cannot use it to spell messages on his alphabet, we have been told this is temporary. His left arm is still giving problems due to excessive growths on the joints due to inactivity. His speech is becoming more mumbled, so conversation sometimes proves difficult.
He brightened a little when he finally received his Valentines Card from Veronica, and we brought home from shopping a leaflet about new mobile telephones, something Steven knows a lot about. He is now in the process of advising Paul of which 'phone to buy.
best regards

Tuesday, 15 February 2011

14th February 2011

Steven has had a good weekend sleeping at night, and enjoying his extra food during the day. He especially prefers "lumpy" food, particularly his morning porridge, and is chewing fine, which should help with jaw exercises and help him speak better. All of this of course a secret from the nurses, but he is fine. He is putting on some weight, all he needs now is the ability to move his legs to command and walk. We won't allow him to put on too much weight.
For those who are interested and wish to do some “googling”, these are the medicines which Steven is taking:-
Zolpidem; Osteum; Catapresan; Nexium mups; Tizandina; Lioresal; Artrovent; Propranadol; Flumil; Trankimazan; Rivotril; Alprazolam; Nolitol; Tramadol; Botox.
He has been having about 30 of these in various mixes every day, but now the dosages are being reduced.
best regards

Friday, 11 February 2011

11th February 2011

Well, I wrote this message last night to say how good Steven had been at night, and last night he had a bad nights sleep. That's after 4 full nights sleep. However, he is still drowsy during the daytime, caused mainly by the medication. Steven has his minor setbacks, otherwise okay. The pains are in the same places, but his wounds are healing very well. But....according to Steven he was in a boat at 1am one night, and he even repeated this story to his speech therapist, in our presence, much to her surprise. He's also had a good 2 weeks with his elder brother Mark, despite the fact that Mark has been at work in England since his return from New Zealand a month ago. And, according to Steven there are too many Chinese in the physio'. Where all these stories are coming from we have no idea, but he mentioned the Chinese a few weeks ago. Needless to say there are no Chinese in the physio' and Steven hasn't got a racist bone in his body. We've told him he's probably been dreaming, but he insists he hasn't, and now thinks he's going crazy. We saw his speech therapist yesterday. She was going to explain about Steven's ability to swallow and move his tongue, but Steven had bubbled us to the speech therapy police, and we'd been rumbled. But she was fine, and was pleased he was feeding well. Steven's speech is still in it's infancy. There are times when we can't understand what he's saying because he's not very clear, other times he's fine, and we can have small conversations. But generally it's difficult, and that makes us all irritated to some degree. If we ignore him it's upsetting for him, but when we can't understand him, it's upsetting for all of us. We have to wait for Steven's muscles in his throat and jaw to work properly. He understands us fully, that isn't a problem, as I've said before, he's retained his intelligence, and that's the problem for him, causing him much frustration that he can't do what he wants to do. We are now going to be given mouth and facial excercises for Steven to follow, and we have to encourage him to do those.
As each week goes by we see the improvements in other patients, this makes us hopeful for Steven's future.
best regards

Tuesday, 8 February 2011

100 Days.

It’s now been 100 days since that terrible ‘phone call. We were at home having breakfast when the call came from the hospital. Steven has had a few motorcycle accidents, and we assumed that this was yet another one, and thinking “What’s he done now?”. Little did we know! We were directed to Intensive Care, and even then we were in denial that this was just precautionary. Until the Doctor spoke to us! Our world fell apart. The injuries were so severe that Steven’s prognosis was very poor, and there were 3 possible outcomes, 2 of which were unthinkable.

The circumstances of Steven’s accident were equally upsetting. He was a passenger in a taxi that he could ill-afford, but the sensible person within him retained the money after a night out. The taxi was struck violently and at high speed by a car passing through a red light, before the offending driver ran away, leaving behind his forged passport, and a mobile ‘phone obtained by fraudulent means. The Police are now searching for possibly a member of a criminal gang, at least they know who he is from fingerprints and DNA.

Steven was lying motionless in a bed with all manner of tubes and wires protruding from him, yet he looked asleep. Once the seriousness of the situation had set in, we had to inform friends and family. One son, Mark, was in Mexico, and as much as we wanted him with us, he was left at the mercy of airline schedules and cancellations. The other son, Paul, had been estranged for several years, what an awful way to get back together, all differences set aside. Since then Paul has been a great help in caring for Steven, giving up his own life in UK.

From the very outset we had enormous invaluable help from Javi Seva, young man, a friend for over 20 years, who’d known Steven since he was about 5yrs old, when Javi himself was just a teenager. Javi helped us with Doctors, Police, and other translations. Thank you Javi.

The following day we received yet another call from the hospital telling us to go there immediately. We never spoke a word, our minds working overtime. The reason for the visit was for the immediate transfer of Steven to a special unit at Benidorm. Here were conducted many tests to determine the level of damage to Steven’s brain. It was extensive. Steven’s head, though not visibly damaged, had been shaken violently, damaging many neurons, essential for the working of brain and body. The prognosis remained very poor.

After a week he was returned to Torrevieja, to the Intensive Care ward, where he remained for a few days until his condition was stabilised, and he was put into his own room under constant care.

The medical staff at both hospitals, some of whom knew Steven from school and his various work placements, were nothing short of wonderful, and we thank them deeply.

For several weeks Steven fought the ravages of minor infections and setbacks, almost as if different sections of the brain were repairing themselves. His heart and breathing rate fluctuated wildly from very low to dangerously high. His weight loss was incredible, despite food supplements.

At this point we’d like to thank Charli and her staff at Legends Bar, Flamenca Beach. Steven only worked for them for just 2 weeks, yet Charli and her staff continued to visit Steven at both hospitals, for 6 weeks. They have continued to enquire as to Steven’s health.

After several weeks, Steven was transferred to a specialist hospital at Alzira near Valencia, where he is now.

Here we would like to thank Gordon for his efforts in trying to find a foster home for Steven’s dog, and to Paul for having this dog for a few days. This action prevented the dog from being put down.

The difference here at Alzira has been remarkable. With the correct medicines and therapy, every day we see minor improvements, whether it’s a foot or hand movement, or even a tear. Steven is now talking, after initially just making noises. He has retained both languages, when there was a great fear that he would lose one of them. He can alternate between the languages when necessary. He can spell in text-speak. He is beginning to have assisted “walks”. His food intake has been increased resulting in a slight increase in weight, and we allow him to have some food on a spoon for him to taste. Even doing this, it’s a victory for us to see him just lick his lips, and wipe his mouth with a serviette. He can move his right arm almost normally, whereas he still has a lot of problems with his left arm, caused mainly by calcification of the joints due to immobility. He has a lot of pain in his hips and left leg, but x-rays show no damage, so it’s muscle or tendon pain, probably from physiotherapy work. His injuries to his feet are healing well, but these and the injury to his left leg will require skin grafting in the future. He has shuffled from chair to bed with help, proving he has the ability to walk, and all we hope now is for his strength to return to his legs. His hearing seems to have improved because any noise irritates him. He says he doesn’t want to learn to drive, he is frightened of cars. Steven has periods of time when he can be very thoughtful, and at other times, very blunt and forward. He doesn’t mean what he says, but it can be hurtful. He has pushed us all away at times. But the nurses say that this is normal, and that sometimes patients can be very violent, even to the nurses. At one point he was so agitated he broke 4 welded bolts on his bed. It’s as though Steven has two sections of his brain fighting themselves, one as the intelligent adult, the other a vulnerable baby, and we never know which Steven we’re going to have. Steven has had a rough few days when he stated he wanted to die, again we were told this is normal, but it’s not normal to us, and was extremely upsetting. He no longer feels this way, but occasionally he does get depressed and asks himself how can he go on. His sleeping pattern is almost non-existant, awake during most of the night due to nightmares, and dozing during the day. He cannot move himself at all, so we have to move him from side to side in bed, being careful not to hurt his arm and leg. He has no muscle on his backside so he’s uncomfortable in the wheelchair, but change of posture is important, as is the chance of fresh mountain air outside. All we can do is encourage and comfort. We have no way of knowing what is going on in Steven’s mind. He often says he’s confused. He says we don’t know what he’s going through.

I asked a dear cousin involved in a serious accident about 25yrs ago for her thoughts on Steven’s situation. The next paragraph is her informative reply.

“Hi Terry & Pauline, I have read Stevens diary. Yes I can relate to some of the Hell that Steven is going through. I had a swelling of the brain, nothing as horrific as Steven, but never the less hell. The things I saw when I was asleep were a complete hell, they were real, not like a nightmare. You are there, these horrible things are happening to you, there was also the noise I can’t explain what it was like, I pushed tissue into my ear drums to try to deaden the noise, I could remember doing that, they managed to get it out ok. I can’t emphasise the reality of all this, my horrors, they had nothing to do with the accident. I could not remember that, even to this day I cannot remember the actual head on collision (I can only remember before the accident and after.) My bad dreams were coming from my brain playing tricks on me related to trauma and drugs. I didn’t want to go to sleep (I didn’t want to go there any more.) I too was making a right nuisance of myself, shouting, demanding that they take me home, I thought that the nurses and doctors were all in on it, they were trying to send me mad, I thought they didn’t like me. Like Steven I too wanted to die, probably not for the same reason, but never the less I did. But I decided I was going to live, I couldn’t leave my children. It was the biggest fight of my life, but I made it. Steven has to want to live, to beat it, (get rid of the demons.) I know he is frightened who wouldn’t be. I hope some of this has helped. I think you are all doing fantastic in helping Steven to his recovery.”

We can indeed relate to the above, and this has been most helpful.

We have seen all manner of improvements, from opening his eyes, moving a leg, or holding his head high. He is no longer violent, nor visibly frightened. He is much calmer to the point of being asleep at inappropriate times, probably the side effects of some drugs. But it is difficult for the Doctors to adjust the medication to suit all his problems. We just have to wait for the drugs to take effect, and do their job. He is gradually being weaned off some of the drugs.

We would also like to say thank you to Eddie, Nick, and Phil for their work in setting up the Steven’s Diary website, and as a result of that, we thank all of you for your help, and messages of support.

We try to forget the backward steps and try every day to feel a little more positive of a wonderful outcome, and a return to normal life.

Best regards
Terry, Pauline, and Paul.

Monday, 7 February 2011

6th February 2011

strange few days!!!! Steven was agitated Thursday morning through to the afternoon's physio' session, when he said that the physio's make him fight. When I asked what he meant, he said that the physio's make him fight the others, and that they bet on it. Well, I haven't got a clue what he's on about, when I said I thought he was mistaken, he said "Why do you find it hard to believe me". When I went to collect him he was actually smiling, and he said he had a good session. Friday we left him in Paul's hands because of our trip to Torrevieja to visit solicitor, courts, and bank. Paul told us he had been agitated all day. Saturday morning Paul told us Steven had a good nights sleep, but Steven said he didn't, and that he felt rough. By mid-morning Veronica and 3 friends had arrived to see Steven. But Steven was very rude to them, and dismissive of them. I tried to tell Steven to be polite and respectful, but he wouldn't/couldn't. Basically he doesn't like to be seen in his present state. He's embarrassed that he looks the way he is in front of 4 pretty girls. Understandable, but the girls had spent a lot of time and money to see Steven, they must have felt awful. I tried to explain to them that he sometimes is the same with us, but we don't have to spend 50euro and travel 400kms, over 4hrs to be acknowledged in the way that they were. But in reality, it wasn't really Steven. They and us know that Steven is a polite gentleman, and wouldn't knowingly hurt anyone. I apologized on Steven's behalf, and I hope they understood. But we just cannot guarantee how Steven is going to be one minute to the next. If they had 'phoned to say they were coming I would have said he was okay, but, he obviously wasn't. Over the weekend he has been very drowsy. He's still in a lot of pain with his left leg, and his throat is bothering him a little. The tracheotomy is healing well, but Steven's tiredness is causing him to mumble. We'll just have to wait and see how he gets on. There's no doubt a ot of Steven's problems could be down to the large amount of drugs he is taking. As we are constantly being reminded, we just have to be patient, and things will improve little by little, but it's Steven who has to do the hard work, and he can't do that if/when he's tired.

Thursday, 3 February 2011

3rd Febuary 2011

firstly, the tracheotomy has been removed/closed. We have yet to receive instructions about the care of Steven's throat, but we don't anticipate any problems. He can still speak, and now sounds more like Steven. We'll update you on this. He's had a few good nights sleep, excepting Tuesday night, when he seemed to have a lot of dreams. At about 3am Wednesday morning he spelt out for me "I am being beaten up at school to make me dance". We have no idea what this means, it could just be random, but, a few weeks ago in another dream state he asked me to help him with his dancing, so it seems to be connected to something, but we don't know what. We don't know if anything happened when he was at school all those years ago, or, as I said, it could just be random thoughts. Last night he slept really well, but after having his breakfast, and his morning medicines, he's gone very sleepy, and he said himself he wasn't happy. I've asked the doctor to review his medicines.

29th January 2011

lots of improvements and encouraging signs. Since the tracheotomy has been temporarily closed he has got used to breathing through his mouth and nose, and is now talking more and more. His voice started as low, but is now a higher melodic pitch, but is monotone. If he tries to talk too fast it becomes a mumble, but he obviously wants to speak his mind. He's talking about general things, mainly food, so we haven't broached the subject of his accident. However he does know he's lucky to be alive, but won't elaborate. He spoke to Mark on the mobile tonight, I wanted to be there to hear that, but that honour fell to Paul.
He still seems to be in a dream state sometimes as if not completely conscious, especially late evening and early morning when he's drowsy. This is when he has the least control over body movements. He's much calmer, so much so, I was able to wet shave him today for the first time in 6 weeks, it was good to see him after so long with designer stubble, but we couldn't risk a proper shave due to his agitation.
His left leg, and both feet injuries are healing very well, but all will require skin grafts in the future.
He seems to be permanently hungry, the doctor has ordered him extra food. I know we shouldn't, but we allow him to taste (hardly a spoonfull) the food as we feed him by syringe, let's hope that makes him feel as though he's actually had some food.
For some reason the physio' staff are very secretive in what they do, and it took another patient to tell us that Steven had been crawling, and then Steven told us himself that he had been walking with the help of 4 staff members. Perhaps that's why he's feeling hungry, more excercise.
We hope that the tracheotomy will be removed/closed permanently on Wednesday evening, we'll keep you updated on that.
Steven still doesn't like the wheelchair, he says it's uncomfortable due to the loss of weight on his backside, despite the air-filled cushion. But we put him in it to change his posture, and get some fresh air. I say that loosely, because the weather has been awful, frosts, rain, thick fog, high winds, and occasionally very sunny but very cold.
We're all fine. My darts team, and in fact, the darts league, have managed perfectly well without me. My adopted football team is not doing very well, even though I've temporarily stopped supporting them (that's another story!!), I still check their results. We've all lost weight, and we have to buy new clothes (as if Pauline needs that as an excuse), because those back at home won't fit either. Paul is keeping fit, but has still to climb the nearby mountain despite having bought the boots!!