Monday, 30 July 2012

30th July 2012

Hiya Life for us is getting more manageable and easier. Whereas before we were busy, or had to be prepared to be busy, 24hrs a day, life is much simpler due to the fewer hospital appointments. Roughly our days start at 7.45am when I have to make sure Steven is awake. He has to be at the hospital for 9am, but we never know how long he'll be there, it can be anytime between 11am and 1pm, so there's little we can do in that time. Also whenever we see Steven we never know what mood he's going to be in. He has a few mental issues, in that he gets stressed and upset very easily, but he hasn't been really upset now for about a month or so. Also, we, nor he, knows what his pain level is going to be, and that depends on his sleep, his household chores, and what they do to him in physio'. Usually now, that's it, our afternoons and evenings are generally free, but we always have to be at close call for any problems. He's doing so well at looking after himself in his own house, cooking cleaning etc. But sometimes he may drop something, and we then have to convince him that we all drop things and it's not his brain damage. He's gradually growing up and becoming the young man he wants to be. It's been very strange watching him grow from babyhood again, difficult to believe but that's what it's been like. He's had crying sessions, tantrums, awkward teenager times. But now he's growing mentally, and the problem there is, that he knows how he used to be and it's upsetting him trying to be that young man again, and it may not happen, but my goodness you should see him try. His stay at the spa was a treat for himself. He took advantage of all the treatments available, full body showers, body and/or foot and/or head massage, a la carte food, and cost a bomb, but it was so much worth it. He will do it again but probably as a day treatment guest. We try to go out for meals with Steven to his favourite restaurants, this gets him used to going out and meeting/talking to different people. One particular night we went into town for a meal, as we did so he walked past many of his old haunts, and he "bumped" into over 20people who knew and worked with him. Their reactions to him were amazing, all knowing what had happened to him. It did give him a tremendous boost. But he does get stressed when there's too many people about, especially shopping. He has to be careful now that he doesn't use a walking stick, because when people see him they see a fit young man, walking slowly, with no obvious damage. He still has problems with change of direction and his balance. So we have to walk in a way that tries to protect him. The physio' team are really helping him with new exercises, especially for his left foot. He is now able to move his foot, slightly, in all directions, this making his walk much more natural. Still slow but improving. But this is beginning to make us wonder about the many opinions we've received from different doctors, whether to remove the foot, change tendons over, operate on the ankle to make it rigid. But with his determination and the physio' things are improving. He has had another session of acupuncture, this time 24 needles. He swears that it's making a difference to his pain level and mobility. He will have more sessions, and then hopefully he won't need many more. We are now in possession of all Steven's hospital records from immediately after the accident. Over 40pages of medical reports over a period of just a few days. The conclusion at that time was that his recovery was "improbable". Well he's proved them wrong. There are also over 2,500 x-rays and CAT scans showing incredible damage to his body. He and we have seen the breaks in his neck, ribs, hip joint, pelvis, and leg, the bleeding in his liver, and the bleeding in the brain. The damage is frightening to see, particularly the pelvis and brain. But what these records do show, is that, even though the outcome was doubtful, the hospital staff did everything in their power to "fix" him, and obviously we will be forever grateful. best regards Terry

Saturday, 14 July 2012

14th July 2012

Hiya, Monday evening Steven had a revision of his problems and the treatment being given especially in relation to the amount of pain he is in. After this he had an acupuncture session, where 20 needles were put on his neck, back, wrists, elbow, forehead, shins and feet. He only painfully felt one pin in his back, and one near his toes, apart from those he never felt a thing. Almost immediately he began to feel different. He was able to move his head side to side for the first time for months, and other pains were reduced. His frowning stopped and he looked fresher in his face. Overall he was pleased after the 2 hour session, at the end of which the needles just began to fall out on their own, weird. He has another session in two weeks time. This morning he was fine, having had an excellent sleep. It was obviously worth trying, and we will continue to do what we can to investigate any means of treatment. Steven has had a good relatively pain free week, however this has allowed the physio' team to put him through extra exercises which creates their own pain, he can't win!!. His whole demeanour has changed this week, a combination of good food, the acupuncture, and the physio'. The physio' psychiatry team are also talking to him, and this has brought on new problems. When this hospital initially saw Steven's doctor's reports, they said that if they hadn't seen Steven and just relied on the reports they wouldn't have considered treating him. I think that this has brought more challenges to the hospital staff them having never been able to speak to someone who has had such catastrophic brain injuries and survived. Steven has been able to explain what he felt and experienced whilst in his coma and in PTA. This is confusing the staff and are taking literally everything that Steven says, or not understanding him at all. There's no doubt that Steven has become more intelligent, whether that's as a result of the injury, or being around intelligent people (I don't mean us I mean doctors etc in team meetings) I don't know. Steven speaks eloquently and beautifully about his experiences. This week he tried to explain that even now he still feels "wooden". It's as though his body doesn't belong to him. He knows what he has to do but has to tell his body what to do. The hospital just cannot understand this and it's causing confusion and stress for Steven. Steven explains it in this manner. If for example he needs to open a bottle he knows that the procedure is to hold the bottle with one hand, and the bottle top with the other, he then has to twist the bottle and top in different directions, using the correct amount of strength to do so. To everyone else this is simple and is as easy as going from A to B. However, Steven's brain has to tell the body to go to C then D then E then F then G before reaching B. Everything he does is the same, he knows what to do but everything is much slower due to the route that the brain takes to get the job done. This applies to speaking, walking, everything. This is particularly frustrating to Steven when it comes to speaking. Before the accident he could, for example, listen to Spanish music or speech and instantly translate that to English. Now, he can still translate, but it's not immediate. Also when speaking Spanish he no longer has the Spanish accent, he speaks Spanish as an English person. It's the same with the English language. In Spanish, every letter in each word is pronounced, you cannot do this with the English language because there are so many English words with unneccesary silent letters, and this is now confusing Steven. To us it's as though Steven is reliving a childhood, and is learning and growing in every respect, but whereas a child has never done these things before, he has, and that's the confusion. Steven has explained to the staff that whilst in his coma he saw "God". Steven is not religious in any way, but when in his coma, he saw a man with a long white beard and long white hair approach him and be very close to him. In not a religious way at all he could only think that he saw the popular image of God. What happened was, during the night of 6th January, one of the Three Kings in popular Spanish culture visited the patients at the hospital in way that Father Christmas visits English hospitals. One of these Three Kings is black, and Steven gave the staff that King's name by mistake, which the staff immediately thought that Steven's God was black. This created so much confusion to the point of upsetting Steven. He was able to explain it correctly, but we fear now that incorrect facts have been written about him in his hospital file, which I must address. It's frightening to think what people in comas could be experiencing. Steven was able to see, hear, and think, but was unable to do anything about what he was experiencing. Steven is living proof that family and friends, and even hospital staff must be aware that coma patients are indeed very much aware of their surroundings. This weekend Steven and us have confident enough to allow Steven to have 3 days at a local Hotel and Spa. Hopefully this will give him extra confidence. He will be in his own room with a different view, eating top quality food, and having all manner of treatments including jacuzzi, hot and cold baths, and massages, all in a tranquil atmosphere. He's only a few miles away and we can be there in 15 minutes if he needs us. best regards Terry

Thursday, 5 July 2012

5th July 2012

Hiya, the depression continues, although it seems to be reducing, or hidden away for a while. There's no doubt that it all stems from another birthday. This then brings back memories of how he celebrated his birthday with beach party and fireworks with friends. It's summertime and there are so many people out there enjoying themselves, but he can't join in, though he does enjoy looking at the scantily dressed young ladies. He's also receiving a lot of psychiatric help. He's being told to forget the past and concentrate on the future. He's been told that the past has gone, and he may never be like he was. In other words he has to accept what's happened and adapt. Of course this is so difficult, for him and for us, we've seen a young man in the prime of his life cut down to how he is now. Steven is happy to continue working hard to regain his strength, but all he is being told is that he will do this one day. If he could be given a specific day he would be happy, he just doesn't know when that day will be. Believe me he is working hard, we see his face every single day, and see the amount of effort he puts in. Wednesday he was told by the physio' team to put away his walking stick. He tried this before but it didn't work, maybe that was too early. So he's trying again. Without the stick he does walk a little faster, but this will then create muscle pain as he exercises more. As a reminder he still has to "tell" every part of his body what to do. It's not just a matter of walking, he has to "tell" his arms, shoulders, legs, feet, everything how to move. The idea is that once he does more, the body will re-learn what to do. Whilst walking he cannot look around or else he loses concentration, he has to look at the ground immediately in front of him. Without the stick it will be even more difficult, because people approaching him from any direction will have no idea of the problems he's facing. It's almost as if he'll need a poster round his neck due to the no obvious signs of injury. Pain killing medicines seem to have little effect, so next Monday he's commencing a course of acupuncture. Thank you for all your support. We have just received word of Ian Wykes' fund rasing activity climbing to Mount Everest Base Camp, and Steven was genuinely overwhelmed at the response especially from total strangers who were customers of Body Shop, thank you. best regards Terry