Thursday, 29 December 2011

29th December 2011

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

Tuesday, 20 December 2011

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