On the 500th day of Steven’s accident, this is a précis of what has happened to now. The accident resulted in horrific injuries to Steven, so much so, that it seems that repair operations weren’t carried out due to the expectation that he wouldn’t survive. This lack of action resulted in the body repairing itself, but in some cases slightly incorrect. A hip joint replacement operation enabled Steven to improve his walking posture, which then resulted in new pain to his knee, and ankle. However the left pelvis was severely damaged and twisted and cannot be repaired. This also affected his stance. Because he is able to stand more erect, his stomach muscles tensed making it difficult for him to breathe, and strangely the stomach started making “gurgling” noises when he breathed. The elbow operation also caused a new pain in his shoulder. What is unknown is what these relatively new pains are. Are they the result of the muscles being moved in the accident, bone damage, or just the result of normal exercise pain. As time goes on there will have to be further examinations of these problems unless they disappear. Steven still has very little natural control over his body movements, almost everything he does has to be planned, there is very little he can do on instinct. Before he can speak he has to make sure he has enough breath to be able to speak. When he walks he has to tell each part of his legs to move in the correct order. A baby matures naturally, and doesn’t actually learn to do anything. Because Steven’s brain was damaged, he knows what he used to do naturally, but now has to tell the body what to do, he is learning all over again. He didn’t breathe properly for several months due to the tracheotomy, so has had to learn to breathe and cough. He didn’t eat for several months due to the gastroscopy, so had to learn to do that again. Throughout the process of healing he and we have had to cope with the varying opinions of doctors. We’ve actually been told by one doctor not to listen to different opinions, but when we have to see so many types of doctors, they all seem to have different opinions of what needs doing, how can we ignore them. Remember Steven was once told that his left foot should be amputated. He was also once told that he had no hip injury, and that it was his brain telling him he was in pain due to the damage to the nerves. He was told that the elbow pain was caused by a growth of calcium which could only be removed by manipulation. Due to the inevitable delays of an overworked national health system because of better health care and longevity, we have gone the private route for his hip and elbow operations. We are not complaining about the Spanish health system, they have been very helpful in many ways, but we couldn’t risk further damage by delaying treatment. We’ve also had to deal with social problems. There is the insensitivity of people, whether failing to move out of Steven’s way despite having a walking stick, or lack of patience when talking or listening to him. Strangely it seems that there is a competition as to who has the worst injuries when talking to certain people. We have always said that there are people worse off than Steven, and we don’t expect any special favours, all we have ever asked for, is understanding of Steven’s problems. Friends who were in constant touch before the accident now don’t make contact, yet total strangers have given us amazing support. Steven has received much support from his friends such as Pablo and Yoli, and Dominic. We have received support from Steven’s brother Paul, his Aunty Linda, and friends Chris’ and Gordon. We all have received incredible unwavering support in so many ways from our long term friend Javi. There are many others to name but these are the most important. What has amazed us is that Steven has retained or even improved his intelligence, he has retained his Spanish and English language skills, and he has retained his motor skills when operating computers and games consoles. Steven’s social and emotional awareness continues to improve as he “matures”. We have started to make light of many issues, and our humour is returning. We can see the amazing progress that’s been made and will continue to make. Despite the occasional “dark” day when depression takes hold, Steven’s overall patience and determination at getting better is wonderful and our positivity remains. We are so proud of him, and for what he has achieved. He has many operations or treatments to look forward to, including examination of left ankle, left knee, left shoulder, his stomach, and possibly cosmetic surgery to a badly healed tracheotomy scar. The day when our lives get back to normal is on the horizon. We all thank you for your continued support, we wouldn’t have got this far without it.
Love Terry
Tuesday, 13 March 2012
13th March 2012
Hiya,
a bad few days for us. Steven has been depressed for a few days now, and this wasn't improved by todays news. Steven visited the hospital today to see a foot specialist. The consultation wasn't a good one. Basically Steven's left foot is well and truly damaged, but deep inside the ankle. To make any sort of repair would cause more damage, and any operation may not even work. There's also the possibility that when his leg was broken almost in half, nerves affecting the foot were damaged and haven't regrown. On top of that, due to the lack of proper use, the foot is becoming useless as well as being very painful. The doctor said he wouldn't touch the foot for at least two years to give it chance to regenerate itself. This has knocked Steven back a lot. He went to bed afterwards due to pain, tiredness, and obviously depression. Hopefully his mood will improve next week when we see the bone surgeon at the private hospital. We will again consider going the private route to see if their skills are different.
Best regards Terry
a bad few days for us. Steven has been depressed for a few days now, and this wasn't improved by todays news. Steven visited the hospital today to see a foot specialist. The consultation wasn't a good one. Basically Steven's left foot is well and truly damaged, but deep inside the ankle. To make any sort of repair would cause more damage, and any operation may not even work. There's also the possibility that when his leg was broken almost in half, nerves affecting the foot were damaged and haven't regrown. On top of that, due to the lack of proper use, the foot is becoming useless as well as being very painful. The doctor said he wouldn't touch the foot for at least two years to give it chance to regenerate itself. This has knocked Steven back a lot. He went to bed afterwards due to pain, tiredness, and obviously depression. Hopefully his mood will improve next week when we see the bone surgeon at the private hospital. We will again consider going the private route to see if their skills are different.
Best regards Terry
Saturday, 10 March 2012
10th March 2012
Hiya,
again another week goes by with little change. Except for one evening when Steven having gone to bed, returned to the living room asking for a cuddle. It seems that things are getting to him, he's had enough. He feels he's not getting the right encouragement from many people. We had to explain that people are people, and can only do and say what they think is best, there is only so much that people can say. He understood this, but we think it's just getting too much for him, and it's dragging along too long. We had to get him to concentrate on the positives as much as he can, he does this, but even this is often surpassed by the negatives.
Tuesday evening Steven had an extra appointment to see a cosmetic surgeon regarding his tracheotomy scar. The surgeon told him that it's 3 to 6 months too soon to deal with the scar. The examination was uncomfortable for Steven, but the doctor said that the scar tissue was not affecting the trachea, and is healing well and provided he keeps the sun off it, it's possible no operation will be needed.His elbow has healed very well, and he's able to bend and straighten his arm almost fully. He has very little pain, so that will go soon. He's not having any pain at all from the hip joint. However other pains are appearing, especially the knee and shoulder. It's not known whether these have always been there and masked by bigger pains, or they're the result of slightly increased mobility and exercise. But overall he feels much better. He's had a session with a psychiatrist at last, and she's helping him a lot especially in relation to the sights and sounds of the accident, and his future. Steven still has some minor issues of understanding. He is getting a little fed up of people saying the healing process will take time, he knows this. But as I've said to him, what else can people say. At least people mean well, and are not ignoring him. His humour is returning, he's helping around the house with cooking and cleaning. Then today we go to a shop inland for furniture,(Brico Depot, Crevillente) and a checkout girl laughed at him because she couldn't understand him speaking. This upset him greatly, and spoilt what should have been a good dinner and day out. I've tried to explain, that her laughing was more a reflection of her character, not his, and he must remember that earlier he'd spoken to another assistant and he was fine. So Steven isn't the problem. We are constantly amazed at Steven's resolve and determination to get better, and these sort of days are just a blip, upsetting as they are, he soon forgets, remaining positive thinking of the good days.
love
Terry
again another week goes by with little change. Except for one evening when Steven having gone to bed, returned to the living room asking for a cuddle. It seems that things are getting to him, he's had enough. He feels he's not getting the right encouragement from many people. We had to explain that people are people, and can only do and say what they think is best, there is only so much that people can say. He understood this, but we think it's just getting too much for him, and it's dragging along too long. We had to get him to concentrate on the positives as much as he can, he does this, but even this is often surpassed by the negatives.
Tuesday evening Steven had an extra appointment to see a cosmetic surgeon regarding his tracheotomy scar. The surgeon told him that it's 3 to 6 months too soon to deal with the scar. The examination was uncomfortable for Steven, but the doctor said that the scar tissue was not affecting the trachea, and is healing well and provided he keeps the sun off it, it's possible no operation will be needed.His elbow has healed very well, and he's able to bend and straighten his arm almost fully. He has very little pain, so that will go soon. He's not having any pain at all from the hip joint. However other pains are appearing, especially the knee and shoulder. It's not known whether these have always been there and masked by bigger pains, or they're the result of slightly increased mobility and exercise. But overall he feels much better. He's had a session with a psychiatrist at last, and she's helping him a lot especially in relation to the sights and sounds of the accident, and his future. Steven still has some minor issues of understanding. He is getting a little fed up of people saying the healing process will take time, he knows this. But as I've said to him, what else can people say. At least people mean well, and are not ignoring him. His humour is returning, he's helping around the house with cooking and cleaning. Then today we go to a shop inland for furniture,(Brico Depot, Crevillente) and a checkout girl laughed at him because she couldn't understand him speaking. This upset him greatly, and spoilt what should have been a good dinner and day out. I've tried to explain, that her laughing was more a reflection of her character, not his, and he must remember that earlier he'd spoken to another assistant and he was fine. So Steven isn't the problem. We are constantly amazed at Steven's resolve and determination to get better, and these sort of days are just a blip, upsetting as they are, he soon forgets, remaining positive thinking of the good days.
love
Terry
Thursday, 1 March 2012
1st March 2012
Hiya,
not a lot to say really. Yesterday, Wednesday, Steven washed his face for the first time in 16 months. Up until now he's been washing his face with one hand, that is, with no handful of water just a wet right hand. Try it, one hand behind your back, and wash your face. But yesterday due to better mobility he was actually able to rub his face with both hands, and fill his hands with fresh water, can you imagine how that must have felt. Today he visited the hospital for the staples to be removed, however the nurse only removed 5 of the 15 staples, so another visit next Tuesday. He hasn't been to physiotherapy for nearly two weeks due to the general discomfort, but he'll make an effort to go next Monday.
best regards
Terry
not a lot to say really. Yesterday, Wednesday, Steven washed his face for the first time in 16 months. Up until now he's been washing his face with one hand, that is, with no handful of water just a wet right hand. Try it, one hand behind your back, and wash your face. But yesterday due to better mobility he was actually able to rub his face with both hands, and fill his hands with fresh water, can you imagine how that must have felt. Today he visited the hospital for the staples to be removed, however the nurse only removed 5 of the 15 staples, so another visit next Tuesday. He hasn't been to physiotherapy for nearly two weeks due to the general discomfort, but he'll make an effort to go next Monday.
best regards
Terry
Friday, 24 February 2012
24th February 2012
Hiya,
after a bit of a cock-up on the part of the hospital re' admission times (Awake at 7.00am and we intended to go at 8.00am but records had been mislaid), we took Steven to the hospital at 10.15am for his operation which started at about 11.45am. Returned to room at 2.15pm in fine order, laughing and joking. He wasn't aware that he'd been in the operating theatre for so long, so assumes he went to sleep. He was given injections all around his upper chest and arm, and was aware of the operation, but didn't look. He can remember the surgeons talking, and heard and felt hammer and chisel on his arm. He felt discomfort but no obvious pain. His arm was in a sling but he soon removed that for more comfort. Almost immediately he could move his little and ring finger, and we had a laugh as he tried to give me the "finger". He was also able to move his arm slightly. He was in a lot of pain after about 5.00pm, and was given painkilling drip. The pain returned at about 8.00pm with a vengeance. He's put up with so much we just want it to end, he doesn't deserve all this. He had visits from friends Dominic and Jessica, and Pablo and Cesar, and they livened him up with jokes and daft stories. He hasn't got any appetite, but we'll start fattening him as soon as we can. Due to the excess of pain, it was decided to keep him in hospital for another day.
Steven was released from hospital mid-afternoon Wednesday. He's still in pain, obviously from the op'. He has a large bandage on his left arm to prevent swelling of his hand. It's the bandage which is restricting the full arm movement, but even with the bandage on his arm movement seems better. As I said he has full hand movement. He returns to the hospital Friday for checking over. In the meantime we're back on the roundabout of other hospital appointments, grrrrrrrrrrrrr. We also have to cancel the NHS appointments for his arm. We're 4,000euro lighter, but there's no way we could wait another 2 months just for more scans, not even a consultation nor an operation, so as far as we're concerned it's money well spent.
Today Friday, Steven's arm movement has continued to improve, and believed to be just the bandage and operation swelling restricting movement. The bandage was removed. The scar is about 5inches long, and the area around the wound is incredibly bruised, more so than his hip operation. The elbow has been re-bandaged with a smaller dressing much to Steven's delight. The surgeon is pleased with result. Strangely I haven't got to touch the dressing until next Thursday when the stitches will be removed. With the hip operation I was changing the dressing on a daily basis. Steven has felt rough today, and we tend to forget that surely he is entitled to "off" days, and for the first time he missed his speech therapy. He can catch up later. Yesterday we spent 2 hours at hospital for a CAT scan on his foot, that didn't help his mood, nor ours. That's our first complaint since treatment started, the hospitals are so overwhelmed presumably the same as UK. We will consider soon whether to go the private route for his ankle problem. What has really amazed us about Steven is his incredible patience. He has no worries at missing "life", concentrating on getting better in order to enjoy his life in the hopefully near future.
Best regards
Terry
after a bit of a cock-up on the part of the hospital re' admission times (Awake at 7.00am and we intended to go at 8.00am but records had been mislaid), we took Steven to the hospital at 10.15am for his operation which started at about 11.45am. Returned to room at 2.15pm in fine order, laughing and joking. He wasn't aware that he'd been in the operating theatre for so long, so assumes he went to sleep. He was given injections all around his upper chest and arm, and was aware of the operation, but didn't look. He can remember the surgeons talking, and heard and felt hammer and chisel on his arm. He felt discomfort but no obvious pain. His arm was in a sling but he soon removed that for more comfort. Almost immediately he could move his little and ring finger, and we had a laugh as he tried to give me the "finger". He was also able to move his arm slightly. He was in a lot of pain after about 5.00pm, and was given painkilling drip. The pain returned at about 8.00pm with a vengeance. He's put up with so much we just want it to end, he doesn't deserve all this. He had visits from friends Dominic and Jessica, and Pablo and Cesar, and they livened him up with jokes and daft stories. He hasn't got any appetite, but we'll start fattening him as soon as we can. Due to the excess of pain, it was decided to keep him in hospital for another day.
Steven was released from hospital mid-afternoon Wednesday. He's still in pain, obviously from the op'. He has a large bandage on his left arm to prevent swelling of his hand. It's the bandage which is restricting the full arm movement, but even with the bandage on his arm movement seems better. As I said he has full hand movement. He returns to the hospital Friday for checking over. In the meantime we're back on the roundabout of other hospital appointments, grrrrrrrrrrrrr. We also have to cancel the NHS appointments for his arm. We're 4,000euro lighter, but there's no way we could wait another 2 months just for more scans, not even a consultation nor an operation, so as far as we're concerned it's money well spent.
Today Friday, Steven's arm movement has continued to improve, and believed to be just the bandage and operation swelling restricting movement. The bandage was removed. The scar is about 5inches long, and the area around the wound is incredibly bruised, more so than his hip operation. The elbow has been re-bandaged with a smaller dressing much to Steven's delight. The surgeon is pleased with result. Strangely I haven't got to touch the dressing until next Thursday when the stitches will be removed. With the hip operation I was changing the dressing on a daily basis. Steven has felt rough today, and we tend to forget that surely he is entitled to "off" days, and for the first time he missed his speech therapy. He can catch up later. Yesterday we spent 2 hours at hospital for a CAT scan on his foot, that didn't help his mood, nor ours. That's our first complaint since treatment started, the hospitals are so overwhelmed presumably the same as UK. We will consider soon whether to go the private route for his ankle problem. What has really amazed us about Steven is his incredible patience. He has no worries at missing "life", concentrating on getting better in order to enjoy his life in the hopefully near future.
Best regards
Terry
Tuesday, 14 February 2012
14th February 2012
Hiya,
took Steven to the private hospital today to get their opinion regarding Steven's left elbow. Examination of the x-ray revealed that Steven did break the point of his elbow in the accident. As with his hip, there was no operation earlier because the hospital didn't think he would survive. As a result, the elbow hasn't repaired properly, hence the extra bone or calcification at the elbow point, putting pressure on the Ulna nerve, causing the pins and needles in his fingers, and preventing the arm from bending and straightening. The surgeon (he did the hip operation) is confident that a small operation to remove the offending bone will cure the problem. The operation will be next Monday 20th February. Steven has been told that the whole left arm will be "frozen", he will lie on his back, and if he wishes, he can view the operation via mirrors!!! Steven is unsure about this, I'll update you on that!!.
We have decided to take this route, since appointments within the NHS system go into April, and still no date for an operation, preferring to see if the calcification will disappear by manipulation. But the pain and this timeline, and the varying opinions have forced the decision onto Steven and us, making up Steven's mind to go ahead now.
Steven wasn't impressed when he heard me make a spoof 'phone call to the doctor, suggesting the operation be done without anaesthetic to save money. It's this type of humour which keeps us all grounded.
best regards
Terry
took Steven to the private hospital today to get their opinion regarding Steven's left elbow. Examination of the x-ray revealed that Steven did break the point of his elbow in the accident. As with his hip, there was no operation earlier because the hospital didn't think he would survive. As a result, the elbow hasn't repaired properly, hence the extra bone or calcification at the elbow point, putting pressure on the Ulna nerve, causing the pins and needles in his fingers, and preventing the arm from bending and straightening. The surgeon (he did the hip operation) is confident that a small operation to remove the offending bone will cure the problem. The operation will be next Monday 20th February. Steven has been told that the whole left arm will be "frozen", he will lie on his back, and if he wishes, he can view the operation via mirrors!!! Steven is unsure about this, I'll update you on that!!.
We have decided to take this route, since appointments within the NHS system go into April, and still no date for an operation, preferring to see if the calcification will disappear by manipulation. But the pain and this timeline, and the varying opinions have forced the decision onto Steven and us, making up Steven's mind to go ahead now.
Steven wasn't impressed when he heard me make a spoof 'phone call to the doctor, suggesting the operation be done without anaesthetic to save money. It's this type of humour which keeps us all grounded.
best regards
Terry
Sunday, 12 February 2012
12th February 2012
Hiya,
firstly, a slight correction to the last message. I said that Steven was to see the "head doctor". Silly me, especially knowing Steven's brain injury, what I should have said was "Steven's head of department doctor" i.e. the one who is co-ordinating all the various treatments, sorry.
We are now not sure whether Steven has a hernia, it may just be inflammation from the operation to his hip, especially as nothing was found in the Echogram. Steven is taking more medicines and we'll review it as soon as possible. After a few days it looks promising that this indeed is the problem.
The elbow injury is causing some concern, Steven is now experiencing pins and needles in his little and ring finger of left hand. Steven has an appointment at yet another hospital in Elche, specialists in Nuclear medicine, in late March. This will be to examine the bone density of his left elbow. Apparently if he has an operation too soon, any calcification will regrow. We were told this before. We will continue to see both private and NHS doctors and depending on the amount of pain, and the information received, we'll decide which route to take. The private route will be quicker but is it better?? The pain and the possibility of damage to the Ulna nerve will decide for us.
best regards
Terry
firstly, a slight correction to the last message. I said that Steven was to see the "head doctor". Silly me, especially knowing Steven's brain injury, what I should have said was "Steven's head of department doctor" i.e. the one who is co-ordinating all the various treatments, sorry.
We are now not sure whether Steven has a hernia, it may just be inflammation from the operation to his hip, especially as nothing was found in the Echogram. Steven is taking more medicines and we'll review it as soon as possible. After a few days it looks promising that this indeed is the problem.
The elbow injury is causing some concern, Steven is now experiencing pins and needles in his little and ring finger of left hand. Steven has an appointment at yet another hospital in Elche, specialists in Nuclear medicine, in late March. This will be to examine the bone density of his left elbow. Apparently if he has an operation too soon, any calcification will regrow. We were told this before. We will continue to see both private and NHS doctors and depending on the amount of pain, and the information received, we'll decide which route to take. The private route will be quicker but is it better?? The pain and the possibility of damage to the Ulna nerve will decide for us.
best regards
Terry
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