29th December 2011

Hiya
Following his operation Steven has suffered varying degrees of pain. Initially the pain increased as the days went on. Xmas Day was the worst day for pain. But Boxing Day and today the pain has lessened slightly, so as I said before, the early signs are good. Steven says that the pain is completely different to before the operation. Before, the pain was permanent as bone rubbed against rough bone. This pain and the action of the joint, forced his left leg to swing outwards to the left. By using a walking frame he now walks in a straight line. This has allowed him to put his foot on the floor in a flat position instead of the out-step hitting the floor, thus removing some of the pain in his left ankle. The pain in his hip is now believed to be operation pain only, from the bruising, and the actions of the surgeon. He found an example of the operation on YouTube, and rather than be upset by the scenes, he found it reassuring. He now understands why he’s in pain, and has seen, that, following the stitching process, his hip is secure. Since leaving the hospital on Friday he has walked regularly using the walking frame, and has for short distances walked without the frame, thereby increasing his strength. We have successfully cleaned the wound at home, although my sadistic nature wishes I had the nerve to rip off the bandage with one hard pull;-). We have bought various pills to aid his recovery, one box alone costing 172euro!!, we hope to recover some of this from the National Health system. On Wednesday 28th, Steven visited the physiotherapy department to enquire as to when he could continue treatment. Here his confidence was shattered when his physiotherapist said that he could see no improvement whatever with Steven’s walking. It’s this sort of thing which upsets us all, so many people have so many opinions we don’t know who to listen to, so we follow our own instincts. I hope you remember some of the things he’s gone through:- his foot must come off, then another doctor says it’s okay; the elbow pain is caused by calcification, then another doctor says it’s a loose piece of bone; a half pelvis replacement is needed, then another doctor says just the ball and socket; and now this where a physiotherapist cannot see any change in his condition. This same physiotherapist is a believer in natural remedies, and considers operations pointless, this is the sort of thing we’ve had to put up with, so many opinions. Nearly everything that’s happened to Steven to get him right we’ve had to fight for, because we’ve learned that doctors and hospitals work to a criteria, rather than consider the differences in people. We’ve had to convince all manner of doctors that Steven is a good healer and he and we are responsive to their directions, and that he should be treated as an individual, not as a lab’ rat.
Best regards, and wishing you all a Happy New Year, Terry

20th December 2011

I haven’t written anything recently mainly due to internet problems, but also because there has been little change in Steven’s circumstances. Moving from Valencia to home has meant a different regime in treatment, as we await the date for his hip operation. In the meantime it’s physiotherapy on his whole body, speech therapy, and visits to hospitals for x-rays etc. I thought it would be prudent to update Steven’s problems, because there are people who think he is fine and is just waiting for the hip operation. In no particular order:- He still has a problem with his left elbow not being able to bend it or straighten it fully. He is in constant pain with this due to the calcification of the joint. He wonders whether taking Calgon would help;-) His left foot is causing problems in that he cannot lift his foot or toes making walking and standing difficult and painful. He has constant muscle/joint pains in left shoulder, left ribs, left knee and left ankle, most of this is caused by the muscles being forced upwards, and are now out of place. His jaw is giving him particular problems in that he cannot eat or talk properly. He cannot open his mouth fully properly, and his jaw clicks loudly when he’s eating. The internal damage particularly to his diaghram prevents him breathing properly, hence the difficult speech, being unable to control his breathing and speaking at the same time. The brain injury has healed sufficiently for him to perform almost everything as normal, just slower because his brain has had to re-routed, and so everything is done at a slower pace. He still has to consciously tell his body to move in the correct manner. Imagine having to tell toes, ankle, feet, knees, hips, and arms to move in a particular order in order to walk, that’s what he has to do. To repeat what he said about himself, he knows his head is Steven but he doesn’t know the rest of his body, it feels wooden and strange. On top of all this he is becoming depressed. He knows he’s done well to get this far and he could have been in a much worse state, but that doesn’t stop him thinking/dreaming about the accident (he can still vividly recall the collision), wondering as to his future life, lack of sleep, and the constant feeling of pain and discomfort, causing him to lose concentration. He (and we) feels very bitter that this has happened to him, asking the unanswerable question, why him? Especially knowing the circumstances of the accident. He has retained his languages, his humour, and his computer skills, but he and his friends recognise that he is a different Steven. In many ways he is better at language and thinking, at times being more aware and logical than we are. He has stopped taking all medicines choosing to feel the pain rather than increase the medicine. Wednesday 7th December, for the first time he spoke to the driver of his taxi, who initially couldn’t believe that he had survived. The taxi driver reminded Steven that Steven was in a very good mood that morning, laughing and joking as he got into the car. This upset Steven, but we think it’s important that Steven speaks to the different people involved, to get the full picture of what happened. Steven’s biggest problem is that when he’s out amongst the general public, because he looks okay in almost every way except his walking, people are unaware of his real problems, and therefore don’t understand when he crosses a road slowly for example, or is unable to move easily when coming to an obstruction or crowd.
We took him into hospital on Sunday evening 18th December. The first thing they did was shave his left knee??? After a protest by Steven the nurses realised that it wasn’t the knee to be operated on!! The following morning Steven was in theatre for about 4hrs for his hip replacement. Both the ball and socket of the left hip joint was replaced. Steven recovered quickly and was most annoyed to hear that the surgeon had thrown away his replaced parts. Steven had arranged for them to be kept to be sealed in resin for display!!!. It’s difficult to know what change of pain he has due to the after effects of the anaesthetic, but early signs are good. Today Tuesday, Steven is in a lot of pain, but it’s a different pain and is obviously due to the operation and bruising, and not the pain from the damaged hip he is so used to. He has received 5 litres of blood. The loss of blood has affected his blood pressure, and until his blood pressure has increased to where it should be, painkillers and sleeping pills and not a lot of good. This also makes him feel weak, so no walking just yet. This also makes him feel the cold, fortunately the room is very warm. He is not eating but recognises that he must eat when he’s in a mood to do so.
Best regards Terry

24th November 2011

Hiya, a busy week this week for all of us. Tidying the house of all the gear collected over the last 12 months at different houses was a mission. Steven started his physiotherapy at a local hospital. These sessions are one to one, and are of great benefit to Steven. Because the hip operation has been arranged, the physio' was centred on Steven's left leg. The break in his leg was extensive, both bones in the lower leg were shattered creating a very large scar at the back of his leg. It has healed well, but the skin has grown into the muscle, and needs to be removed, and this can only be done by painful massage and manipulation. Similarly, they're working on his left elbow by forcing the elbow beyond it's limits, straight and bent, again causing pain, will it ever end? Wednesday was a busy day, and of course that day there was a torrential rainstorm, creating floods everywhere. We had an early morning start at the private hospital, where Steven had blood tests, then an ECG, then x-rays, all different parts of the hospital of course!!. From there we had to go to the NHS hospital for a session with the speech therapist. From there we returned to the private hospital to see the anaesthatist. Then from there, to another NHS hospital for his physiotherapy. This all meant an awful lot of walking, and getting wet, what a day. Discussion with Steven revealed an interesting fact which I've touched on before. In the past he's said that he knows he's Steven in his head, but his body doesn't feel his. The latest from him, is that he doesn't know how to relax, because he feels wooden. He's having to re-learn every facet of living, including just leaning against a wall which he finds very unnatural and awkward. He doesn't know how to stand "at ease", he's forgotten how to laugh, and has to pretend to laugh in an exaggerated manner. We have no real idea what's going on in his mind. Having said all that, he does seem more positive that we are coming to the end of another chapter in his life. All the information he and we have discovered, is that after the hip operation, he will be almost back to normal. His physiotherapist has a girlfriend at the intensive care unit where Steven was first taken, and when he told her who he was dealing with, she couldn't believe it because all the signs then were that Steven would not survive. We are making plans to visit this unit to show how wrong they were, but also to show that their prompt action did save his life. There could be tears.
best regards
Terry

18th November 2011

Hiya
Another good weekend at home. Steven had time on his own at his own house, he enjoys that, while we go out and do our own thing, such as car-boots!!. On Sunday my birthday we drove up to see Paul. There, Steven got me to stand still in front of him, and told me to shut my eyes. I did, then he said open my eyes, as I did I saw that his eyes were shut, and then he opened them, this was to re-create what he did on my birthday last year. Very emotional that was. Opened cards at Paul's, and read them. When we get home this weekend I'm going to open last years cards and read them. We returned to the hospital intending to be there until Friday, only to receive information that we had to see a National Health doctor on Thursday morning, and then a private doctor on Friday morning. So we had a busy week emptying the house of all our property gathered in the 11 months we've been there. Luckily we'd been taking things home for the last 2 weeks, but there was still going to be a car full. So just 3 days of physio'. It was during this 3 days that Steven began to feel quite ill. We don't know if this the reaction to the reduction in his medication, or just unsettled stomach due to everything going on, last days at the hospital, returning home permanently, seeing other doctors, probably a mixture of everything.
Wednesday came, and we said our goodbyes to our friendly neighbour, then it was Steven's turn to say his goodbyes to all the staff. Lots of photo's taken and tears shed. They all want Steven to return when he's fully recovered. They all said it was a miracle that he was walking out after arriving in such a poorly condition. Then it was off to Paul's with an excessively overloaded car. We offloaded a lot of things there for later collection and brought Paul home with us. You just wouldn't believe the amount of gear we now have at home, what a mess. We have a lot of Steven's clothes as well as our own, but all manner of things have been tripled due to the different "homes", where we're going to put it I have no idea.
Thursday morning we visited the local hospital to see the traumatologist. This doctor never even looked at Steven's extensive file of reports, analysis results, x-rays, and scans, and didn't even examine him. All he did was make appointments for more tests, beginning on 9th December, which would considerably delay any operations. I asked if there was any objection to us going to see private doctors, and he said he couldn't give an opinion because he didn't know what was the matter with Steven??
Friday morning we visited the local private hospital, what a difference!!. Full examination of Steven, physical and oral, all manner of tests organized for next Wednesday morning, and the hip operation arranged for 19th December. This doctor said that a half pelvis replacement was not necessary. He said that Steven's pelvis in the region at the top of the thigh bone had been crushed, and would require a new socket fitted. Steven should be walking the same day. So it's all looking good for Christmas. We all felt really positive after the meeting, especially when the doctor said that he would probably operate on Steven's elbow later, and possibly fit him for an orthopaedic shoe for his left foot. Completely different to what we'd been told.
best regards
Terry

11th November 2011

8th November
Hiya,
I know it's going to sound horrible, but Steven is getting really depressed with this hospital. Mainly because the hospital is a specialist brain damage unit. Although Steven has some interaction issues he's not half as bad as most of the people here. So, we're going to go home early i.e. Thursday afternoon instead of Friday. We think because he had such a good time in his own home, he wants more time there, quite understandable, he wants his old life back. He is already getting doubts about the success or failure of his hip operation, will the pain be gone? will he be able to walk better? He's got so many reasons to feel the way he does. We can only try to reassure him, but it's difficult. As we keep telling him, only time will tell.

11th November
well, life is still confusing!! We know we are to leave the hospital on 18th November, but now we have an appointment at the local hospital on 17th November! So unless we hear anything different from the hospital near Valencia we'll come home at last, late 16th November. We've had another meeting with Steven's doctors and we now know more about his hip operation. It seems as though he has to return to the Alzira hospital at a date to notified, and I'll stay with him in his room for 3 to 5 days, whilst Pauline stays at home. Whereas Steven handled his last lot of inconveniences in the early days at the hospital, he's not looking forward to this session of after care because he knows what's going to happen. He is getting more and more depressed, for all manner of justifiable reasons, and there's only so much motivation we can give before it gets a bit boring. The phrase he hates is "poco y poco" (little by little), and it's perfectly true. But after 12months of "poco y poco" on a daily basis it gets a bit wearing. On his own admission he's borderline to giving up, even at this late stage in his recovery. As I have said fully understandable, he's had to put up with so much, but as we keep telling him, he's still here, and there's lots of people worse off than him. He understands this, but it doesn't stop the numerous thoughts going through his mind. He still "hears" the accident in his dreams, he still feels bitter at being a victim of being sensible, he worries about his future, he remembers how he was, and he's still in pain. For us, we are beginning to forget the Steven we knew, and the Steven we have now is beginning to seem normal and almost acceptable, which it obviously isn't, it's all so sad. The doctors are suggesting that we also get some counselling now!! We're beginning to think perhaps they're right.
best regards
Terry

8th November 2011

041111
Hiya,
at last Steven has seen his solicitor involved in his case. The solicitor and his clerk were really pleased to meet him for the first time, and put a body to the papers. Steven's file is now about 4" thick, far bigger than any other of the files on show. At hospital and home, we all talk about many things to do with Steven's claims, and from that I send the solicitor messages requesting answers. Steven was able to confirm everything that we had done, not that he'd doubted us, but now he knows what we've done, and what's being done on his behalf. There's a long way to go, and may take years to finalize, but there again, the insurance have to gamble whether Steven gets better or worse, and act accordingly. The solicitor is on a percentage of whatever is offered, so it's in his interest to get as much as he can for Steven, for doing the same work. Steven is going to be examined by a "friendly" doctor to counter any claim by the insurance, who obviously are working to reduce any claim. Whether this finally goes to court will depend on what's offered and what the solicitor says, it's all to do with bargaining, bluff and double bluff.
We've been given a figure for the cost of a private operation to replace Steven's hip, but we're asking more questions about that because we don't want a surprise bill that was forgotten. When I had my gallstone op' at the same hospital I had about 4 bills, surgeon, operating theatre, medicines, and hospital room, that was a surprise, but that was sorted by my insurance, but Steven's op' will be out of our pockets. Then there's the after care, private or public?? Once we get all the information we'll act on it. At the moment it looks hopeful, that he'll have the operation soon. There' a lot to organize, especially as the rent for the house will be finished on 18th November. But I can see myself staying with Steven for the op' and after care, while Pauline stops at home, should only be for a few days, this is the sort of information we need.
Steven had a successful night on his own at his own house Wednesday night, and is doing the same tonight. It's a massive worry but he's determined to have his independance. He takes his games, tinterweb, tele', and food/drink etc, and the first time he has a problem we'll re-evaluate that arrangement.

081111
Hiya,
Steven had another successful night at his own house Sunday evening with a kebab!!! He's thoroughly enjoyed being "normal" even though he knows he isn't really, but just being in a place he loves has been a huge success. Getting his own food and drinks, watching and listening to what he wants, and sleeping in his own bed. No problems at all. Monday afternoon he saw his speech therapist at the local hospital. Not a lot happened, just a get-to-know-you session, to see where Steven's problems lay. He's been given exercises to do, some old, others new, and a new appointment made for a couple of weeks time. We now await appointments for physiotherapy. We returned to the Alzira hospital Monday evening popping in to Paul's on the way. Tuesday morning at his physio' he saw his doctors and related to them what he has experienced the last week or so, especially that he may have to wait one or two years for an operation on his elbow. He was told to get a third opinion!! This is what frustrates Steven and us. They're the doctors they should know, how many opinions do you ask for?? We have to trust that these people know what they're doing. The doctors have done so well, why spoil it now with these views. None of this helps Steven in his bid for recovery, especially when he's in permanent pain, which causes it's own frustration and inevitably anger. There seems to be some confusion as to what Steven can actually do when it comes to walking. Steven basically shuffles along in great pain. He is very slow, but will not use a wheelchair, because the pain is there in wheelchair or not. He can climb stairs, sometimes one step at a time, sometimes both feet on one step, then proceed to the next step, just depends how "fit" he feels. He has occasionally stumbled but has corrected himself. He actually calls himself a bloody big baby. When walking around town or in public, because he's wearing normal clothes, people have no idea that Steven has such problems, so Steven and us have to watch other people's moves as well as Steven's. Steven is considering buying notice boards that he can wear around his shoulders to inform people to stay clear;-) Tuesday we had even more confusion when it came to finding out the cost of his hip operation. The admin' at the hospital said that the doctors knew the cost, but then the doctors said they didn't know, ask the admin'. More frustration for Steven and us. After a brief meeting between admin' and doctors the cost was established, with no apologies for the confusion, and we now await a suitable date for surgeon and operating theatre etc. We are hoping it will be soon.
Best regards Terry

2nd November 2011

Hiya,
at Torrevieja hospital this morning. Had a really intensive examination by hospital admission's head. Over one hour, including a lot of computer work. The doctor saw Steven on day one of his accident so was surprised with his improvement. The only real downside to the meeting was that nothing will be done to Steven's elbow. It was explained that the calcification was of a type and situation that will continue to grow and get worse for up to 2 years. If there was an operation now, there would have to be more operations as the calcification would continue to grow after the operation. Difficult to understand, just wish we'd been told this before, Steven could have prepared himself for a longer haul. On the plus side, Steven starts speech therapy at Torrevieja on Monday, which is awkward due to physio' at Valencia, but we'll sort that out. This speech therapy will also be in English which is a more difficult language to speak. For information, in the Spanish language you say almost every letter in every word, and even link words together. English is much more complicated, with many letters having different sounds, and is less fluid than Spanish. For a laugh, find a foreign/English dictionary and read how to speak English!!! We await appointments for the bone consultant, re' Steven's hip, and I'll keep you updated on that. Already at least 20 sessions of physiotherapy have been organised, we just need to be told the time and place, but it will be local and far more convenient. We felt it was a positive meeting. Last year Steven opened his eyes for me on my birthday 13th November, coming home on 18th November will do as this year's belated birthday present.
Best regards Terry