Good Sunday Morning
Good Sunday morning, all,
Yes, it is just after 5 a.m. here but I am an early riser!!
Here is the latest on Graham. I went to see him twice yesterday (Saturday) as I was aware he was out of clothes and fruit juice and since I was taking Dylan to his work (for his last day, hurrah) at Freeport, which is about 10 minutes from the hospital, I decided to go in when it was not visiting hours to take these things. I managed to say for an hour and went back later on as well.
Graham was really glad to see me as I had not been in for 2 days. Charis visited him on Thursday and Charlotte saw him Friday. These are great friends from Airasa's school days -- and today Helen is going to see him, another friend from those days. So when I got there it was about 9:45 and I stayed an hour during which time I organised his clothes so he knew where everything was being put (in fact he told me where to put things and how to put them, so you see he is definitely improving!!). I got him 6 more pairs of loose casual trousers, which are easy for them to put on and take off him and he needs them for his exercising activities. I then took home all the dirty clothes so they can be washed and returned. There are enough t-shirts and trousers and other items now so that washing can be done once a week and he will still have a couple of 'outfits' left while the washing is being done.
He had asked for a pen to write on his clothes, as they will do his laundry there, but he said that he would prefer that we do it -- I am not surprised as hospital laundry really takes it out of stuff as they must boil wash everything. I arranged the bottom of his cupboard to have plastic bags there for them to put dirty clothes in and when I got back in the afternoon he said he had already trained them to put his used t-shirt into the bag. I think it will work fine.
I confess I left the clothes for Airasa to wash as I don't have much laundry these days (no more kids here!!) and they will have their holiday clothes to wash so I think it will be OK.
I took him in 4 kinds of juice, in packs of 3 little ones each. When I came back in the afternoon he remarked he thought I should bring in more, that 4 were not going to last him long and I said well there were 12 and he said, oh, he thought I had only brought in one of each kind. No, I was more efficient than that. He was happy to know he has plenty of juice to keep him going for a few days.
He described his exercise routine -- they take him to the gym in a wheel chair after hoisting him out of bed. I don't know how they dress him, but obviously they do that, including socks and shoes. They put him onto one or another machine and strap him in and the machine moves him. One is the bicycle I described a couple of letters ago. The other is something where he moves his arms out and back. He said they are hard to be on. It is partly because he cannot do anything to help them move his body yet, so it is mechanical motion. But they want him to help and with his arms he was trying to help and it produced some pain. He says they give him pain killers some time before the exercises to help alleviate the pain.
I read him a couple of emails from folks, showed him some photos I had printed out at work (in colour) and opened a package with a book of poems and a cassette book. Thank you to everyone who continues to write and send things. I can tell you it really cheers him up. I told him I had attempted to phone him the night before and was unsuccessful as the phone was busy for a couple of hours. He did mention that Randy had phoned so he was quite happy about that.
They came to give him a nice bath (in the bed) and I left and came home for a few hours. I left again around 4 to go visit him again, with more hangars to finish organising his clothes. His trousers and t shirts all hang up now and I think that made him feel happy, knowing it is all organised.
He was asleep when I got there at 4:30 so I did a couple of quiet things waiting for him to wake up, which he did about 10 to 5. I read him some more emails I had printed out and started to read a letter from Ian's mother to me, but I had to leave by 6 to pick up Dylan so there was not time for everything. His dinner came around 5 and I fed him the fish and peas -- which were pretty unappetizing and he didn't each much of those. But I gave him the strawberry yoghurt which he did like and he seemed to have had enough food.
He was all clean when I got there in the late afternoon, asleep with his headphones on and a CD in the player. He does not get exercised on the weekends.
I did massage his head, arms, neck, chest and legs. Unfortunately I lifted up his right arm to massage under and I was concerned about the plastic from his chest gizmo and when I did that he shouted out with pain -- I had twisted his shoulder some. I was really sorry that I had hurt him, and massaged him over and over until the pain left. Clearly there is pain now that he did not have before. The spasms of his body seem to be continuing but moving other places. Not just his legs but also his upper body.
Personally I look at this as progress -- I am not sure how they see it medically, but I figure that if his brain and body are trying to communicate, it will be in this jerky fashion. It reminds me a newborn baby lying down wiggling everywhere rather uncontrollably. Of course he cannot feel this in one sense, though when his body jerks it surprises him and he sometimes shouts out.
I also thought I detected some movement in his left hand, though I may be making that up. It was his left arm that was the one he could still move when we first found him, so that is the one that was least harmed. I am looking for anything that will demonstrate he is getting back use of his body. He can move his arms with a little bit more control, I believe, though his right arm he needs to have mechanically stretched out by someone else, his left arm seems to have that capacity back.
Ok, maybe I am grasping at straws here, but I keep on suggesting he is getting better. He is still using the Pac-man image to remove any negative thoughts, and he is still imaging microscopic molecules filling in where the spinal cord seems to be damaged. I drew him a picture from the MRI scan I saw, where it shows the cord and then these two sides where there is a white line above and below the cord along the sides, but it is missing where the cord is swollen. He is really doing his best to be positive and to think positive. I told him how proud I am of him and how he is keeping up a good attitude to the best of his ability.
On weekends some of the patients go home and so it was incredibly quiet there yesterday. They were nice in the morning and did not ask me to leave. They are very quick to answer his bell too -- I accidentally hit it shortly after I arrived and a nurse was there pronto! He needed to be readjusted in the bed to eat, and these amazing women came and pushed and shoved using the sheets he was lying on and soon he was repositioned and sitting halfway up so he could eat.
He has had an infection in his lungs again, which has distressed him a lot. They have put him onto a powerful drip of antibiotic twice a day and this is seeming to drain him emotionally as well as perhaps physically. He said he was stressed because he thought this was cleared up at LGI. But of course, as Ian's mum says (she was a nurse in such a unit some years ago) the three biggest problems are pneumonia, urological problems, and bedsores. At least his bedsores have cleared up for now.
Well, I think I have gone on quite a bit here -- perhaps more detail than you all wanted -- blame it on my typing speed!!
Airasa and Ian are home late tonight from their week in Italy with friends. I am sure they have had a wonderful time and that it will have done them a world of good. You will start to get Airasa's updates again. Perhaps after being away for a week she will see some improvements that are more difficult to perceive when visiting every day.
He has quite a stack of books on CD and tape now, and hopefully he will feel more up to listening to those soon. We all think it would be great, but after seeing how he was yesterday I can understand that he cannot concentrate enough on a book yet. He has dozed at every one of my visits and also when Charis saw him two days this week. I have not talked to Charlotte, so I don't know what she thought. Lying around can be amazingly tiring, plus they are working his muscles and also giving him drugs. It is difficult but he is doing well.
Thanks for all your continuing emails. He does get a lot out of what you send.
Wow I almost lost this email -- cleverly I saved it before I tried to send it and then the program crashed. Hmmm, wonder why it does that...
Enough from me!!
Kind regards,
Linda
Yes, it is just after 5 a.m. here but I am an early riser!!
Here is the latest on Graham. I went to see him twice yesterday (Saturday) as I was aware he was out of clothes and fruit juice and since I was taking Dylan to his work (for his last day, hurrah) at Freeport, which is about 10 minutes from the hospital, I decided to go in when it was not visiting hours to take these things. I managed to say for an hour and went back later on as well.
Graham was really glad to see me as I had not been in for 2 days. Charis visited him on Thursday and Charlotte saw him Friday. These are great friends from Airasa's school days -- and today Helen is going to see him, another friend from those days. So when I got there it was about 9:45 and I stayed an hour during which time I organised his clothes so he knew where everything was being put (in fact he told me where to put things and how to put them, so you see he is definitely improving!!). I got him 6 more pairs of loose casual trousers, which are easy for them to put on and take off him and he needs them for his exercising activities. I then took home all the dirty clothes so they can be washed and returned. There are enough t-shirts and trousers and other items now so that washing can be done once a week and he will still have a couple of 'outfits' left while the washing is being done.
He had asked for a pen to write on his clothes, as they will do his laundry there, but he said that he would prefer that we do it -- I am not surprised as hospital laundry really takes it out of stuff as they must boil wash everything. I arranged the bottom of his cupboard to have plastic bags there for them to put dirty clothes in and when I got back in the afternoon he said he had already trained them to put his used t-shirt into the bag. I think it will work fine.
I confess I left the clothes for Airasa to wash as I don't have much laundry these days (no more kids here!!) and they will have their holiday clothes to wash so I think it will be OK.
I took him in 4 kinds of juice, in packs of 3 little ones each. When I came back in the afternoon he remarked he thought I should bring in more, that 4 were not going to last him long and I said well there were 12 and he said, oh, he thought I had only brought in one of each kind. No, I was more efficient than that. He was happy to know he has plenty of juice to keep him going for a few days.
He described his exercise routine -- they take him to the gym in a wheel chair after hoisting him out of bed. I don't know how they dress him, but obviously they do that, including socks and shoes. They put him onto one or another machine and strap him in and the machine moves him. One is the bicycle I described a couple of letters ago. The other is something where he moves his arms out and back. He said they are hard to be on. It is partly because he cannot do anything to help them move his body yet, so it is mechanical motion. But they want him to help and with his arms he was trying to help and it produced some pain. He says they give him pain killers some time before the exercises to help alleviate the pain.
I read him a couple of emails from folks, showed him some photos I had printed out at work (in colour) and opened a package with a book of poems and a cassette book. Thank you to everyone who continues to write and send things. I can tell you it really cheers him up. I told him I had attempted to phone him the night before and was unsuccessful as the phone was busy for a couple of hours. He did mention that Randy had phoned so he was quite happy about that.
They came to give him a nice bath (in the bed) and I left and came home for a few hours. I left again around 4 to go visit him again, with more hangars to finish organising his clothes. His trousers and t shirts all hang up now and I think that made him feel happy, knowing it is all organised.
He was asleep when I got there at 4:30 so I did a couple of quiet things waiting for him to wake up, which he did about 10 to 5. I read him some more emails I had printed out and started to read a letter from Ian's mother to me, but I had to leave by 6 to pick up Dylan so there was not time for everything. His dinner came around 5 and I fed him the fish and peas -- which were pretty unappetizing and he didn't each much of those. But I gave him the strawberry yoghurt which he did like and he seemed to have had enough food.
He was all clean when I got there in the late afternoon, asleep with his headphones on and a CD in the player. He does not get exercised on the weekends.
I did massage his head, arms, neck, chest and legs. Unfortunately I lifted up his right arm to massage under and I was concerned about the plastic from his chest gizmo and when I did that he shouted out with pain -- I had twisted his shoulder some. I was really sorry that I had hurt him, and massaged him over and over until the pain left. Clearly there is pain now that he did not have before. The spasms of his body seem to be continuing but moving other places. Not just his legs but also his upper body.
Personally I look at this as progress -- I am not sure how they see it medically, but I figure that if his brain and body are trying to communicate, it will be in this jerky fashion. It reminds me a newborn baby lying down wiggling everywhere rather uncontrollably. Of course he cannot feel this in one sense, though when his body jerks it surprises him and he sometimes shouts out.
I also thought I detected some movement in his left hand, though I may be making that up. It was his left arm that was the one he could still move when we first found him, so that is the one that was least harmed. I am looking for anything that will demonstrate he is getting back use of his body. He can move his arms with a little bit more control, I believe, though his right arm he needs to have mechanically stretched out by someone else, his left arm seems to have that capacity back.
Ok, maybe I am grasping at straws here, but I keep on suggesting he is getting better. He is still using the Pac-man image to remove any negative thoughts, and he is still imaging microscopic molecules filling in where the spinal cord seems to be damaged. I drew him a picture from the MRI scan I saw, where it shows the cord and then these two sides where there is a white line above and below the cord along the sides, but it is missing where the cord is swollen. He is really doing his best to be positive and to think positive. I told him how proud I am of him and how he is keeping up a good attitude to the best of his ability.
On weekends some of the patients go home and so it was incredibly quiet there yesterday. They were nice in the morning and did not ask me to leave. They are very quick to answer his bell too -- I accidentally hit it shortly after I arrived and a nurse was there pronto! He needed to be readjusted in the bed to eat, and these amazing women came and pushed and shoved using the sheets he was lying on and soon he was repositioned and sitting halfway up so he could eat.
He has had an infection in his lungs again, which has distressed him a lot. They have put him onto a powerful drip of antibiotic twice a day and this is seeming to drain him emotionally as well as perhaps physically. He said he was stressed because he thought this was cleared up at LGI. But of course, as Ian's mum says (she was a nurse in such a unit some years ago) the three biggest problems are pneumonia, urological problems, and bedsores. At least his bedsores have cleared up for now.
Well, I think I have gone on quite a bit here -- perhaps more detail than you all wanted -- blame it on my typing speed!!
Airasa and Ian are home late tonight from their week in Italy with friends. I am sure they have had a wonderful time and that it will have done them a world of good. You will start to get Airasa's updates again. Perhaps after being away for a week she will see some improvements that are more difficult to perceive when visiting every day.
He has quite a stack of books on CD and tape now, and hopefully he will feel more up to listening to those soon. We all think it would be great, but after seeing how he was yesterday I can understand that he cannot concentrate enough on a book yet. He has dozed at every one of my visits and also when Charis saw him two days this week. I have not talked to Charlotte, so I don't know what she thought. Lying around can be amazingly tiring, plus they are working his muscles and also giving him drugs. It is difficult but he is doing well.
Thanks for all your continuing emails. He does get a lot out of what you send.
Wow I almost lost this email -- cleverly I saved it before I tried to send it and then the program crashed. Hmmm, wonder why it does that...
Enough from me!!
Kind regards,
Linda
posted by Fearless Leader Sue at 2:50 PM
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