Thursday, 31 March 2011

31st March2011

It has been brought to my attention that I should more accurately describe Steven’s condition. I have been guilty of avoiding some sensitive subjects because I don’t want Steven to be embarrassed by good natured “mickey taking” when he fully recovers, and my position on this will not change.
Since Steven was brought here the doctors and physio’s have performed miracles, and Steven’s improvement has been immense. However he is still extremely incapacitated. Although my descriptions of his recovery are basically true, it seems that a combination of my poor reporting, and people’s perceptions, Steven is better than he really is. To me every improvement is a victory, even though they are so small.
Steven can now move between wheelchair and bed. First he has to push himself up from a lying position to a sitting position, a very difficult manoeuvre considering he has little or no strength is his arms. When sitting he has to start to stand but he can only do this with an orthopaedic boot on his left ankle to give him support. He then has to hold on to us during the manoeuvre, and we have to support him by holding him. He then has to mentally “ask” his legs to move in a shuffling motion. He has to consciously “tell” his legs to “lock”, and then to move in the correct direction. He occasionally has severe pain in his left leg, especially at night. This makes the shuffling motion more awkward due him to being reluctant, or unable, to put his weight on this leg to move his right leg. The best description is that he is learning how to walk again as if he was 18 months old.
Steven does not like the hospital gruel. So Pauline makes most of his food at “home” and takes it to the room. He can chew, but not hard foods such as tough meats or biscuits. He is fed from a bowl with a spoon. He has done this himself, but the results are erratic.
He has no strength in his arms and hands, to hold a spoon, or turn a page in a magazine. He can use a laptop, but due to his wayward fingers, many keys are pressed, but he knows how the laptop works, and does his best to correct mistakes. Keeping him occupied is sometimes a problem. He watches tele’, dvd’s, listens to music, play Connect 4, and even plays poker.
Steven’s throat muscles on the left side are weak, making it difficult for him to speak clearly. He also hasn’t yet mastered the art of correct breathing when speaking, making his speech slow, and in short monotone spells. He has retained all his language skills, even changing rapidly between Spanish and English.
He can touch his face with his left hand but slowly and with extreme difficulty, because of lack of movement in his left elbow. He still cannot turn over in bed by himself, but once comfortable, he can sleep well.
He describes the whole of his left hand side of his body as being heavy.
He has periods of depression from a variety of reasons, but mainly because he wants to work hard to get better, but can’t. These periods are awful, lots of crying, sleeping, and anger, and this affects us also. We have our own periods of depression, caused by the sheer anger of what happened to Steven, and watching him pushing himself so hard to get better. Steven just wishes he could flick a switch and it would be all over and he’s back to normal, but he’s been told that isn’t going to happen. Steven has so many plans for his “second” life, but we have to tell him not to dwell too much on that, but concentrate on getting better. There is no timetable to full recovery, everyone is different, but he has been told that his body is recovering fine, there are no obvious problems with his body, and that his brain is repairing itself after receiving so much damage. He has his own target of his birthday in late June to either walk confidently, or even return home. At times he has a good mental state. He can remember all manner of things, from how to make cocktails in a bar, to programming computers, and using electronic gadgets. But then at times he can forget the date, or what he was told earlier in the day, yet again, remember that later.
We give him very little information relating to the accident or his earlier treatment, because we want him to share his experiences with us later, rather than recall what we’ve told him. We have told him little pieces of information, but only to explain to him how different he is now to what he was then, in the hope that he can then see for himself that he is improving.
His physio’ and doctors tell us that Steven works hard in the physio’ lessons, thus explaining the state he is in when he returns to his room, tired, thirsty and hungry. He has put on a good amount of weight, and his legs are beginning to put on muscle. All his wounds have healed. No dressings, just regular cleaning and massaging with oils.
We have complained so many times about Steven’s tiredness, and the pain he suffers in his left leg. This all came to head one morning this week when Steven was incapable of going to physio’. After several visits by different doctors, Steven’s medicines have been changed, again, and we just have to wait for them to take effect. At the start of the week, Steven was a little depressed, and he finally said it was because he was frightened of the tests he sometimes has with the doctors. We and the doctors had to explain to him that the tests weren’t tests to be passed, but just an assessment of how he is progressing, and the results would determine the next level of treatment. Steven was relieved at this.
Our duties in looking after him have changed, some things have gone, only to be replaced by others. Steven is truly working so hard, and enjoys any sort of help and support, whether from us shouting encouragement, or the receipt of personal messages.
Best regards

Thursday, 24 March 2011

24th March 2011

a continuation of last week, more bad news than good. For at least 6 days Steven has been very quiet, the laughing and joking with us and the nurses has stopped, and he seems very depressed. His speech has become slurred, which causes further agitation when we can't understand him. He seems to have lost a lot of confidence in the ability to improve. He has lost confidence in his right ankle, which affect his movement between bed and chair. He is coping very well with this movement, but the lack of improvement in his right leg/ankle is bothering him. It isn't known whether some of these problems are caused by his impatience at getting better, or whether it's his medication. He wants desperately to get better, but he can't get better quick enough. He says he want's to get better for himself, and would love to do more physio'. He is enjoying the extra food, but we have to monitor what he has. He has fed himself occasionally. He has cleaned his own teeth. He is being taught how to clean himself. He is sleeping well, but not known whether this is caused by depression, physio' activity, or genuine tiredness. We've had some awful weather here, so we can't even get out for fresh air, hope this weekend is as sunny as last weekend, he enjoyed his picnics. I hope the next update is a little better. There's no doubt even our behaviour is affected by Steven's, and we have to try desperately not to upset him.
If anyone can find the time to send a letter or card directly to Steven at the hospital, we would be grateful, this could give him the encouragement he needs. He does enjoy me reading the messages we do receive via e-mail and Facebook, but a letter or card can be put on the wall for him, as a constant reminder of who's thinking of him.
best regards

Saturday, 19 March 2011

19th March 2011

After a brilliant couple of weeks, it was inevitable that there would be a backward step at some point. Steven’s medication has been greatly reduced, by being slowly weaned off some pills, and/or cancelling others. Whether this was the cause of his nervousness cannot be confirmed. But for a few days he was very nervous, affecting hand and leg movements, and his speech, and he sweated profusely day and night. This seems to have solved itself, and Steven is back on his forward steps, literally.
We now do not need the hoist to move him between bed and chair. We have been taught how to help him. Help is the important word, Steven has to do the work, we help and monitor his moves. Unbeknown to us Steven has been training for this for a while in physio’, and is now deemed capable of doing it himself with help. He has to stand up from the chair, lock his legs, and shuffle/walk to the bed and then sit on the bed. He then has to roll on the bed, and by using his legs and feet, push himself to a comfortable position. The sequence is reversed from bed to chair. A small, but very important part of his recovery. As Paul said, a giant leap for Steven.
Further, after I had shaved him, I applied a hot towel to his face. Steven then took a dry towel and wiped his face using both hands for the first time. Another small step, but one which made him cry with joy, the act of feeling his own face.
All the stories about hospital food are coming true. Now that Steven can eat “normally” he is getting bored with hospital soup type food. So now we smuggle in, sandwiches, cakes, and even meals cooked by his Mum. He manages very well, and is enjoying these “new” flavours. Freed from the need of the hoist we are now enjoying picnics nearby to the hospital.
It is difficult to understand or describe his feelings at experiencing such mundane things.
A further upset for him this week is the San Jose (Father’s Day) fiestas, prevalent in this area. Steven has encompassed himself greatly into Spanish life, and fiestas are very important to him, so to see on television the fireworks, the fires, the costumes, and the parades, and not being able to participate in them is a great disappointment to him.
So, it looks as though we’re going to have a strange party when we’re all back home, my birthday, Xmas, New Year, and now Father’s Day, mmmm Xmas carols, champagne, birthday cake, and fireworks, it’s going to be a bit noisy!!
Steven thoroughly enjoys the messages he and I receive, they’re a great help knowing that people are thinking about him, and this is where he gets his courage to work hard. A big thank you here to Harlow Vern, a fervent West Ham supporter, that doesn't make him a bad person;-), and fellow FC Torrevieja supporter, made a surprise visit to see Steven. He was in the area on business, and popped in. Steven loved it, as did we. Brilliant. Thanks Vern.
Best regards,

Sunday, 13 March 2011

13th March 2011


What an amazing week. Internet messages could not be sent due to the awful weather we’re experiencing, interrupting an already poor signal due to the nearby mountains. This bad weather also gave us local problems, such as no water at our rented house, and a short time without hot water at the hospital. A situation which can occur anytime anywhere.

Steven has continued his recovery with laughter. In no particular order, Steven has been declared free of PTA, which is very important for him, because it now means he may actually return to almost full recovery. The rules of PTA are not set on stone, but we have to be positive. The doctors have stopped testing Steven’s brain with repetitive questions of his memory, and are now concentrating on his arms and legs activity. Steven used a cycle machine for 2kms. He walked with a frame, otherwise unaided, for 10metres. He can take thickened water from a glass by mouth. This shows that his inner throat is healing. Thickened water is by a powder called Espesante, which is a natural sugar added to the water to make it like a “slush puppy”. Both his feet have healed completely, and his leg injury has almost healed.

On the downside, Steven is still experiencing pain in his left leg and foot, and his voice hasn’t yet changed, still sounding like a child. Due to the extra exercise he is doing, he is also having a lot of back pain, which is being controlled by medicine and the neuro strips.

He has had a nightmare where he says he can remember the car crash. We have told him nothing about the accident preferring to wait until he is stronger. But he says he can remember seeing the car coming at him, he can remember the sound of the tyres, he can remember putting his arm around Veronica, and can remember trying to move his leg out of the way of the collision. He thinks that it was his knee that hit Veronica’s face. He thinks he heard a car reversing, and heard glass smash. The accident is vivid in his mind, and has filled in some blanks for us, and we’ll fill in his blanks later. He has asked questions about the accident, and we answer them, but we haven’t given him all the information. He asked “what happened to the other driver”, and he was surprised at my answer that he had ran away. We have tried to tell Steven that his main concern is getting better, not thinking about things which cannot be altered, but it’s understandably hard for him to do so. Lying here in hospital does not give him scope for obtaining newer and better memories, but that will come in time, and hopefully the nightmares will be further apart. The Japanese earthquake has showed Steven that despite everything he has endured, he still has a lot to be grateful for.

Steven has enjoyed the company of his eldest brother for the weekend, and Mark has cared for him overnight, giving us a break.



Saturday, 5 March 2011

5th March 2011

temprary setback, we've been told not to put trainers on Steven's feet just yet. Couldn't get them on this morning anyway!! (Wednesday). Steven has a problem with his left foot. It's at a strange angle, and he has little movement in the foot, especially his toes, so his big toe was bent under when in the trainer. Steven is very aware of his appearance, and he prefers trainers to grandad slippers. But I'm afraid he's got to put up with them for the time being. At least it will make him work harder to wear trainers. He now has special tape on his neck and shoulder, left side. The tape is called neuro-proprioceptive taping (google it!!) It's commonly used in sports medicine. Basically, what do you do with a sore muscle, you rub it, this tape does that due to it's stretchy qualities. The doctor is really pleased with his progress. She says he is behaving when talking to the nurses. He is still in the PTA state and will be for about a month, may be shorter.
(Thursday) Continuing the saga of the trainers. Even though we were told not to use trainers, we found a pair on a local market with 3 rows of velcro fastenings, making it much easier to put on Steven's feet. So we sent him down to physio' with his new trainers. But when we collected him the trainers were missing. Steven said that due to the injuries to his feet, the trainers had been removed and would be kept in the gymnasium. His confidence had been destroyed. I immediately called for the doctor, even though I knew by now she would be finished for the day. Another doctor was found and I explained that the trainers were easier to fit, were comfortable, and more secure than the slippers he'd worn before. I stated Steven's case quite forcibly. As if that wasn't enough, we were then told that Steven was to have no more food by mouth. Again Steven's face dropped as the confidence was visibly knocked from him. Even the nurses in physio feed him the occasional yoghurt, and our treats for Steven were no thicker than those. Again I stated Steven's case, believe me I was very angry. There was little we could do that night, but I still fed him his treats. There's no way I was going to join in with knocking Steven backwards. To help matters, we lost all phone and internet connection for 36hrs. The following day, (Friday) sense prevailed, as a doctor spoke to me, and said that Steven could have his food by mouth, but no liquid (we already knew that??), and he could wear trainers for the periods when it was thought to be suitable. Apparently, although the injuries are healed, the doctors believed that the stronger trainers could rub the new skin on his feet. We'll call it a draw shall we.? Steven was much happier, at a time when he was really beginning to work at getting better. Steven can now touch his forehead, nose and eyes with his left hand, so some improvement there. Still no strength in either hand. We've bought him some 1kg dumpbells to use whilst in the room. We won't let him do it for long. Steven' talking has improved immensely. For a few days now a lot of the old Steven is coming out, lots of jokes, silly ad-libs, and just fun. We've had some good laughs. Friends from Torrevieja, Chris and Gordon came to see him. They've seen Steven several times, so have seen the slow and gradual changes, but this time they were amazed at his condition. Steven was pleased to see them, and the fun continued to their surprise. Steven has now been told that his left leg had to be almost rebuilt, and although shocked, he's accepted that he is getting better. Having said that, once told, he said his left leg was hurting!! All his thoughts now are to get fit and get home, such a positive attitude. His improvement has been so great, many other patients and carers are congratulating him, and are using him now as the example for themselves and/or charges to get better, just as others did to Steven in the early days. Friday evening, whilst Chris and Gordon were here, Steven received a parcel. He opened it himself to find a letter from Chelsea Football Club, wishing for Steven's recovery, and signed by John Terry. Enclosed were several signed photo's of Chelsea players. Although Steven isn't an avid Chelsea fan, he does follow the fortunes of all the UK's major clubs, and was absolutely over the moon that someone should do this for him. He was very emotional. This was all arranged by Paul, and was organized by another Paul, a Chelsea Fan and a member of my supporters club here in Torrevieja. Wonderful.

Tuesday, 1 March 2011

1st March 2011

Steven nor I slept last night, no reason given, just one of those things. He never complained of anything, just couldn't get comfortable. We thought that he would have a rough time in physio', but apparently he was fine, and went out into the sunshine for an hour afterwards. He does seem determined to get better, including getting the sun on him. He continues to talk to everyone. I've asked around, and he is being polite, so no problem there. One thing we've noticed is that he is taking pride in his appearance. He needs his hair combing even when in bed. He asks for his face to be washed. He asks to be kept tidy in his chair. We have to spray him with deodorant. And he wants his clothes changed twice a day, well that's a non-starter, we have enough hand-washing to do without doubling it. So he looks for the slightest mark to say something needs washing!!!! He is remembering all the recent activity, and is retaining his humour. All good signs. I actually managed to get his feet into a pair of trainers this afternoon (hope Paul doesn't mind, they were his!!). He says he feels better with them on for his walking. He stood unaided except by a small frame for 5 minutes this morning. His left ankle is now at a strange angle, and will require special physio'. He still cannot touch his face with his left arm, but it's getting closer. Can't remember the last time he complained of pain in his left leg or hip. He is now eating very thick gruel type food. Much thicker than a soup. That's on top of what we give him. However he still cannot drink thin liquids, because the inside of the tracheotomy is still fragile, and if liquid gets through to the windpipe it makes him cough. But we don't think it will be long before his stomach feeding tube is gone.
Best regards Terry