Mike's doing very well with the blocked-off trachie and is talking more and more and more loudly. He still gets tired easily and sleeps a lot - being read to seems to send him to sleep, even when Frodo and the others are trapped in the Barrow by the Barrow-wright, which I thought would have been exciting enough to keep anyone awake. He is a lot more peaceful now that he is getting more sleep.
When I (Tracy) arrived this morning Mike was in his wheelchair, so I took him for a tour around the rehab centre. When I wheeled him into the day-room, another of the clients was there. On seeing Mike, his whole face lit up and though he can't talk, all his attention was focussed on Mike, and Mike gave him a grin and a hand-wave and asked him how he was doing. Also, another of the clients gave Mike his Charlie Brown doll last night, and according to the staff he does not give presents to just anyone. Looks like Mike's friendship skills are still intact.
Mike really enjoys Kent & Amanda's mini-discs, and wants to compete in another Ironman. Which is fair enough, I would be deeply frustrated by doing all that training and getting two weeks from the start line, and then not competing. But right now he's still got to learn to walk.
At least he does have a shorter-term goal, which also shows how much of a JAFA he still is - he wants to go out to a cafe and have a coffee.
Saturday, April 09, 2005
9 & 10 April Visiting Notice -- Still no visitors please
Cavit's experts are in the process of cutting back on his reliance on the tracheotomy to keep fluid out of his lungs. If all goes well, it could be removed entirely on Monday. Meanwhile, the expert view seems to be that it is best if Mike continues to rest without visitors.
Friday, April 08, 2005
Sleeping Beauty
Mike is sleeping lots now. When he is awake he is talking lots. His voice is deep and getting clearer, although it is still not easy to follow. He is consistently concerned about others and wanting to get news of how friends and family are faring. Yesterday, he wanted to know everything Ben had told us about his accident. Then he wanted to know if Ben was running the Ironman in 2006. So we 'text' (as our kids say) Ben, who affirmed that he was, perhaps with a deep breath. The nurse then told Mike to think again. She said, not unkindly, that the last bloke who was in Cavit with Mike's degree of injury was there for 18 months. Mike looked a bit shocked. So was I, truth to tell. The nurse added that while Cavit would do everything it could to help Mike recover, Cavit could not effect a recovery, that had to come from Mike. I think that was what Mike wanted to hear. As Ben 'text' back, the 18 months benchmark is one target Mike will be keen to blow away. Mike was sleepier today, and perhaps a bit less lucid with it. For example, he asked that I take care of the hotel bill for now. A nurse put his mind at rest by explaining that this was a hospital. (We did not need to explain that it was not a US hospital, or that he was insured.) It is good to see him more relaxed -- indicating that the nurses were right about his being over-stimulated earlier in the week .
Bryce
Bryce
8 April Visitor Update -- Still no visitors please
Mike had a good night's sleep, but is still tired
Thursday, April 07, 2005
April 7th: Good progress day
The experts seem to be right. Cutting Mike back to a low stimulus existence is improving his sleep patterns and though he is tiring easily, we are really thrilled by his progress. Mike was started on the process towards trachy removal yesterday. The first step is blocking off the trachy for a few hours and closely monitoring his oxygen levels and how he manages his swallowing. He did so well that today they have left the blocked off trachy on all day. It means that he can whisper a bit and by today the whisper was getting reasonably audible. The speech language therapist tested him and found he could make all the necessary sounds for English, including ones very similar such as 'k' and 'b'. It's so wonderful to be whispering away with him. It feels like we're talking to the old Mike, though we're still having to be really careful that he rests a lot. One aspect that makes this easier is that Mike seems to realise for himself how tired he gets and so far doesn't seem to be getting bored. That will come apparently and will be a sign that he is getting better.
At present he is hanging out for a cup of coffee! Of course he has had 'nil by mouth' since 20 Feb, and even when this changes it is a long process and liquid is the last food added because it is so hard to keep out of the windpipe.
Those of you who know Mike will not be surprised to know that his mind is working away on missing the Ironman. He's already had Bryce text Ben Schurr (who was training with Mike when he had the accident) asking if he is planning to do next years' one. He's asking after so many of his friends and his memory for past events connected with you all seems on the whole to be fine.
At present he is hanging out for a cup of coffee! Of course he has had 'nil by mouth' since 20 Feb, and even when this changes it is a long process and liquid is the last food added because it is so hard to keep out of the windpipe.
Those of you who know Mike will not be surprised to know that his mind is working away on missing the Ironman. He's already had Bryce text Ben Schurr (who was training with Mike when he had the accident) asking if he is planning to do next years' one. He's asking after so many of his friends and his memory for past events connected with you all seems on the whole to be fine.
Wednesday, April 06, 2005
April 6: Mike's second posting
Thank you for your words of encouragement. Please come and visit when I am well enough.
Mike
PS: The messages are a bit limited, partly because Mike has to either whisper them or spell them out via the alphabet sheet and then we have to work out what he means! As soon as he gets tired, the spelling and whispering become erratic.
Mike
PS: The messages are a bit limited, partly because Mike has to either whisper them or spell them out via the alphabet sheet and then we have to work out what he means! As soon as he gets tired, the spelling and whispering become erratic.
6 April Visiting Notice - No visitors please
This is the first of many notices we expect to post advising of the assessment by Cavit staff of Mike's capacity to take visitors.
As explained in the 6 April family meeting blog, Mike's condition is currently so fragile that it would be best if he has no visitors until his condition materially improves.
Thank you for your restraint. Please post any messages for Mike on the blog, or email them to one of us directly.
Bryce
As explained in the 6 April family meeting blog, Mike's condition is currently so fragile that it would be best if he has no visitors until his condition materially improves.
Thank you for your restraint. Please post any messages for Mike on the blog, or email them to one of us directly.
Bryce
Family Meeting with Cavit staff
We had our first family meeting with the staff at Cavit today.
There was plenty of good news. Given his progress at swallowing and coughing and the encouraging findings from his ENT inspection on Monday, his trachy is likely to be out in a matter of days rather than weeks. Then they would wait to see how he handles that before taking the peg out of his stomach. So that step is weeks away rather than days away (all assuming no setbacks of course). The ENT inspection is also encouraging in respect of his vocal chords, etc, and therefore his ability to speak. But of course his actual ability remains to be revealed. In many other ways his progress (eg listening and understanding) has been"superb".
The bad news is that staff say that his health is very fragile, medically. There is a concern about infection and about his failure to sleep well. Apparently last night was the first night since his readmission to Cavit during which he has slept at all satisfactorily. The staff attribute that in good part to reduced numbers of visitors yesterday, compared to the weekend. They believe that his failure to sleep well is likely due to exhaustion from over-stimulation.
Obviously, making sure that he gets enough rest has to be a high priority right now, at least until he is sleeping better and in a more robust state. The staff think that he needs the (quiet) company of immediate family for reasons of familiarity and reassurance.
After some discussion, we reached the following gameplan in respect of visiting arrangements:
(1) We ask all Mike's friends, cussies and colleagues to (continue to) refrain from visiting Mike until further notice;
(2) Where you need to be an exception -- eg because you are just heading off for your OE and won't be able to visit Mike later -- please call Lee 021 455 326.
(3) Once or twice a day, one of us will call Cavit and ascertain whether Mike is in a condition at that time to take some visitors. If so, we will post a blog telling you this. (Staff say that his condition is so unstable that his capacity for visitors can change almost hourly.)
(4) Please don't visit even then if you might be carrying a bug;
(5) If you do get to visit, please aim to make it between 3pm and 5 pm, and limit it to 10 minutes, and keep it restful.
(6) Make sure in particular that you do not visit between 1 pm and 3 pm. This is when they are trying to keep the area quiet for all patients.
(7) If you do visit, please use the hand-cleaner on the table on the left immediately inside the entrance door.
(8) If all else fails, please call Cavit ABI Rehabilitation directly on 04 570 9284 to check on Mike's ability to take visitors.
We know these are hard restrictions, not just for you but we suspect for Mike as well. However, if it is in Mike's best interests for now, so be it.
Meantime, if you want to send any messages to Mike, please post them on the blog. Lee is doing a daily reading to Mike of your postings. He is keenly interested and it will not surprise you to know that Mike thinks they should all be replied too. However, it seems clear that Mike can't go 'online' until his condition is much more stable.
All in all, we can all be thankful and encouraged by the confirmation of Mike's superb progress, notwithstanding the long, difficult, even hazardous, road ahead.
Mike's Dad
There was plenty of good news. Given his progress at swallowing and coughing and the encouraging findings from his ENT inspection on Monday, his trachy is likely to be out in a matter of days rather than weeks. Then they would wait to see how he handles that before taking the peg out of his stomach. So that step is weeks away rather than days away (all assuming no setbacks of course). The ENT inspection is also encouraging in respect of his vocal chords, etc, and therefore his ability to speak. But of course his actual ability remains to be revealed. In many other ways his progress (eg listening and understanding) has been"superb".
The bad news is that staff say that his health is very fragile, medically. There is a concern about infection and about his failure to sleep well. Apparently last night was the first night since his readmission to Cavit during which he has slept at all satisfactorily. The staff attribute that in good part to reduced numbers of visitors yesterday, compared to the weekend. They believe that his failure to sleep well is likely due to exhaustion from over-stimulation.
Obviously, making sure that he gets enough rest has to be a high priority right now, at least until he is sleeping better and in a more robust state. The staff think that he needs the (quiet) company of immediate family for reasons of familiarity and reassurance.
After some discussion, we reached the following gameplan in respect of visiting arrangements:
(1) We ask all Mike's friends, cussies and colleagues to (continue to) refrain from visiting Mike until further notice;
(2) Where you need to be an exception -- eg because you are just heading off for your OE and won't be able to visit Mike later -- please call Lee 021 455 326.
(3) Once or twice a day, one of us will call Cavit and ascertain whether Mike is in a condition at that time to take some visitors. If so, we will post a blog telling you this. (Staff say that his condition is so unstable that his capacity for visitors can change almost hourly.)
(4) Please don't visit even then if you might be carrying a bug;
(5) If you do get to visit, please aim to make it between 3pm and 5 pm, and limit it to 10 minutes, and keep it restful.
(6) Make sure in particular that you do not visit between 1 pm and 3 pm. This is when they are trying to keep the area quiet for all patients.
(7) If you do visit, please use the hand-cleaner on the table on the left immediately inside the entrance door.
(8) If all else fails, please call Cavit ABI Rehabilitation directly on 04 570 9284 to check on Mike's ability to take visitors.
We know these are hard restrictions, not just for you but we suspect for Mike as well. However, if it is in Mike's best interests for now, so be it.
Meantime, if you want to send any messages to Mike, please post them on the blog. Lee is doing a daily reading to Mike of your postings. He is keenly interested and it will not surprise you to know that Mike thinks they should all be replied too. However, it seems clear that Mike can't go 'online' until his condition is much more stable.
All in all, we can all be thankful and encouraged by the confirmation of Mike's superb progress, notwithstanding the long, difficult, even hazardous, road ahead.
Mike's Dad
Tuesday, April 05, 2005
April 5: Not such a good day
Bit of a difficult day today. Mike was very tired,restless and sleepless. He was supposed to have a whole bunch of tests, but some couldn't be done because he was too tired. In the end, his boring fart mother, me, arrived. Only five minutes being read to by soporific me and off he went to sleep - and that happened twice, not once.
Mike is thrilled by the responses to his blog site. He expected updates from each visitor as they arrived, so thank you everyone. Mikes 31 hits have outdone the rest of us!
Interesting with one lot of tests - checking for Post Trauma Amnesia. The Occupational Therapist asked him how old he was. Now he didn't have a twenty-fifth birthday because of being unconscious, so he said he is twenty four. Fair enough I thought, no cake, no presents, no birthday, one year younger.
Tomorrow is the family conference and our first opportunity to discuss where we are going.
Lee
Mike is thrilled by the responses to his blog site. He expected updates from each visitor as they arrived, so thank you everyone. Mikes 31 hits have outdone the rest of us!
Interesting with one lot of tests - checking for Post Trauma Amnesia. The Occupational Therapist asked him how old he was. Now he didn't have a twenty-fifth birthday because of being unconscious, so he said he is twenty four. Fair enough I thought, no cake, no presents, no birthday, one year younger.
Tomorrow is the family conference and our first opportunity to discuss where we are going.
Lee
Monday, April 04, 2005
Mike's first post - typed by Tracy earlier in the day and confirmed with Mike
Thank you to everyone for your support.
April 4th:Mike the Imminent Blogger
Well this has been a day of bafflement at the rapidity of Mike's progress. We started the day on a high note because Mike had somehow got the staff to dress him in his Ironman shirt (Go Foot Traffic!). Next we headed down to the ENT specialist who investigated his vocal chords and announced them fine. He also started the downsizing process for eventually removing the trachy.
The effort of Mike attending the appointment was supposed to exhaust him, but he was firing on all cylinders. Yesterday Mike had wanted to know how many visitors came while he was in Intensive Care. Those of you who were there know that the answer was a hell of a lot of people. I'd taken my laptop into the hospital to show him those photos I took in the first few days. He was thrilled with them and could mouth the names of all the people in the photos. He then proceeded to want to see the blog and insisting he should reply.
So tonight Bryce and Andrew took in Andrew's Mac and a standard wireless keyboard. Mike's small motor skills still have a way to go. The keys are a bit small for him and were hard for him to hit, but the first thing he typed out was "Hullo." When they showed him the blog, to their amazement he seemed to read it and kept to gesturing them to scroll down. Eventually they organised Mike to scroll down himself. So now he wants to post on the blog - he wants to reply to you all. TJ is trying to create him his own account on the site . If you see 'Michael Wilkinson' at the bottom of the post, that is Mike himself. At the moment his desire is ahead of his small motor skills, so we will post the messages he wants to send. At this rate, it's not going to be long before Mike's the main blogger and we are all redundant.
The next big thing is the family conference on Wednesday. We're sure we'll be told we have to make Mike rest. Any suggestions how??
The effort of Mike attending the appointment was supposed to exhaust him, but he was firing on all cylinders. Yesterday Mike had wanted to know how many visitors came while he was in Intensive Care. Those of you who were there know that the answer was a hell of a lot of people. I'd taken my laptop into the hospital to show him those photos I took in the first few days. He was thrilled with them and could mouth the names of all the people in the photos. He then proceeded to want to see the blog and insisting he should reply.
So tonight Bryce and Andrew took in Andrew's Mac and a standard wireless keyboard. Mike's small motor skills still have a way to go. The keys are a bit small for him and were hard for him to hit, but the first thing he typed out was "Hullo." When they showed him the blog, to their amazement he seemed to read it and kept to gesturing them to scroll down. Eventually they organised Mike to scroll down himself. So now he wants to post on the blog - he wants to reply to you all. TJ is trying to create him his own account on the site . If you see 'Michael Wilkinson' at the bottom of the post, that is Mike himself. At the moment his desire is ahead of his small motor skills, so we will post the messages he wants to send. At this rate, it's not going to be long before Mike's the main blogger and we are all redundant.
The next big thing is the family conference on Wednesday. We're sure we'll be told we have to make Mike rest. Any suggestions how??
Sunday, April 03, 2005
Mike Moves the Goalposts
Mike set some new achievement benchmarks today.
(1) He walked about 4 paces from his bed to his wheelchair. Sure he had a nurse holding each arm to keep him balanced and ready to take the weight. But he lifted each leg up forward and down all by himself.
(2) He communicated his first full sentence, letter by letter picked out of a sheet of A4 with all the letters of the alphabet on it that the speech therapist had left with us.
(3) He showed self-awareness by laughing at himself.
(4) He smiled and did thumbs-up and high fives on demand.
(5) He affirmed that he could smell rosemary and basil.
How did (2) and (3) happen? We wheeled him into an outside courtyard above the street and he pointed decisively ahead, apparently urging his to run his wheelchair straight forward into the wall of the courtyard. We were puzzled and produced a pencil, sheet of paper, backing board and the sheet of paper with the alphabet. Pointing at the alphabet he spelt out G-O-D. Really? But no, there was more. He got to GO DOWN THE ROAD and we all burst out laughing - he was ready to roll. Have wheelchair and pyjamas, will travel. Mike joined in the laughter. But, again there was more. He added TO DA before he ran out of steam. We asked "to the dairy?" and he nodded. We asked if he wanted to buy something. He nodded. It wasn't ice cream. We asked him to point to the first letter. He pointed to C and then O. We asked if it was Coke. It was. He joined in the laughter again. What a commercial for Coke.
We took the chance to ask him what he meant by that arm signal that had baffled us yesterday. He spelt out B-E. We asked: "BELIEVE"? He nodded. Perhaps he was signalling that we should believe in his recovery. Why not?
Bryce
(1) He walked about 4 paces from his bed to his wheelchair. Sure he had a nurse holding each arm to keep him balanced and ready to take the weight. But he lifted each leg up forward and down all by himself.
(2) He communicated his first full sentence, letter by letter picked out of a sheet of A4 with all the letters of the alphabet on it that the speech therapist had left with us.
(3) He showed self-awareness by laughing at himself.
(4) He smiled and did thumbs-up and high fives on demand.
(5) He affirmed that he could smell rosemary and basil.
How did (2) and (3) happen? We wheeled him into an outside courtyard above the street and he pointed decisively ahead, apparently urging his to run his wheelchair straight forward into the wall of the courtyard. We were puzzled and produced a pencil, sheet of paper, backing board and the sheet of paper with the alphabet. Pointing at the alphabet he spelt out G-O-D. Really? But no, there was more. He got to GO DOWN THE ROAD and we all burst out laughing - he was ready to roll. Have wheelchair and pyjamas, will travel. Mike joined in the laughter. But, again there was more. He added TO DA before he ran out of steam. We asked "to the dairy?" and he nodded. We asked if he wanted to buy something. He nodded. It wasn't ice cream. We asked him to point to the first letter. He pointed to C and then O. We asked if it was Coke. It was. He joined in the laughter again. What a commercial for Coke.
We took the chance to ask him what he meant by that arm signal that had baffled us yesterday. He spelt out B-E. We asked: "BELIEVE"? He nodded. Perhaps he was signalling that we should believe in his recovery. Why not?
Bryce
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