Hi Everyone,
Lee here again. TJ and Bryce are off at an economics talk, would you believe! As they say: Everyone copes in their own way!
Another quite tough day, but Andrew and I think a bit better. These sympathetic storm things seem more like a series of squalls. One arrives, there's a rough patch for about half an hour or so. We can be just constantly wiping him down with a cool damp cloth, rinsing it out and wiping him down again. Then suddenly it subsides and suddenly he's a normal temperature, breathing calmly, and relaxed in his face. Nerve-racking, but we're getting used to them.
In one of the calm periods, I dripped some coca cola on to his lips. The positive reaction would have been a poignant ad for coke.
Mike's old friends Kim and Paul came up from Tauranga. Kim (another of the Speech Language crew) explained a new system of lightly massaging the face muscles to build Mike's responsiveness. I'm looking forward to the right opportunity to try it out. Again some different communication. Meanwhile I've shifted on to retelling the stories of children's books he used to enjoy. You'd think having read them a thousand times I'd remember them better. It's really sketchy but at least another SUBJECT!
You've no idea what a wonderful support it is for us to see your comments on the blog. . To hear from friends, rellies, old friends we've lost touch with, Mike's friends and even people who have only met him briefly. It adds a lot to our courage.
Saturday, March 12, 2005
Friday, March 11, 2005
11 March Setback
Last night Mike had what is called a mild sympathetic brainstorm. This is not the the burst of lateral thinking it might appear. Apparently the sympathetic nervous system controls all the automatic systems such as temperature, heart rate, breathing, fight and flight. This malfunctioned about 4.30 in the morning and Mike has been pretty miserable all day - very sweaty, panting and grimacing with pain. The medics feel that he is fit enough to withstand it without them having to use medical intervention. So they just keep monitoring and we have just sat by his bedside most of the day,talking to him quietly and trying to appear calm. It's very like the helpless feeling when your small kids are in pain and unable to tell you the problem.
Apparently this brainstorm thing occurs in 15-33% of severe brain injury cases. I have no idea why that is relevant, but as many of you know, Bryce really likes that sort of data!
Here's hoping for a better day tomorrow.
Regards
Lee
Apparently this brainstorm thing occurs in 15-33% of severe brain injury cases. I have no idea why that is relevant, but as many of you know, Bryce really likes that sort of data!
Here's hoping for a better day tomorrow.
Regards
Lee
Thursday, March 10, 2005
The Raincheck Birthday
Well we all survived the birthday. Mike's birthday celebration took the form of a mouth swab of cold apple juice. From his tongue movement, it obviously tasted like the best beer in the world. Our thanks to all those who sent cards, messages, presents and came along to the hospital. It meant a lot to us and you can be sure Mike will hear all about it when he's up to it. Mike got pretty tired in the late afternoon, so we had to halt the visitors. We think he may be entering the next stage of recovering consciousness. Unfortunately this stage seems to involve agitation and confusion. It's also possible he's finally realised he's missed the Ironman!
A few more pieces of progress today. The physio got Mike standing up. He needed a huge amount of support, but there he was - upright. It's interesting how much more alert he is when more upright. For the first time he seemed to cast his eyes about his surroundings and he was able to blink 'yes' - for more apple juice! Over the day we started to notice a bit bigger range of facial expression and his eyes look a bit less vacant.
It is likely that Mike will be moved to Wellington next Monday. We think that before this we will still have to keep visitors restricted to avoid fatiguing and confusing him, If you are planning to visit, give us a call to check how he is. Bryce's mobile is 0274 455326, Lee's is 021 455 326. Our apologies for this, but we know you will understand. You Aucklanders have been such a wonderful support to us, we'll never let anyone criticise Jaffas again. Once Mike has settled into Cavit in Lower Hutt and made some more progress, we know he will love to have visitors.
A few more pieces of progress today. The physio got Mike standing up. He needed a huge amount of support, but there he was - upright. It's interesting how much more alert he is when more upright. For the first time he seemed to cast his eyes about his surroundings and he was able to blink 'yes' - for more apple juice! Over the day we started to notice a bit bigger range of facial expression and his eyes look a bit less vacant.
It is likely that Mike will be moved to Wellington next Monday. We think that before this we will still have to keep visitors restricted to avoid fatiguing and confusing him, If you are planning to visit, give us a call to check how he is. Bryce's mobile is 0274 455326, Lee's is 021 455 326. Our apologies for this, but we know you will understand. You Aucklanders have been such a wonderful support to us, we'll never let anyone criticise Jaffas again. Once Mike has settled into Cavit in Lower Hutt and made some more progress, we know he will love to have visitors.
Wednesday, March 09, 2005
Happy birthdayfor the 10 March, Mike
By the time you all read this, Mike will have turned 25. Mike had thought about what might be good for his quarter century celebration. It's fortunate that we'd never imagined anything like this. We have to just hope that his next birthday will be better.
A quiet day at the office for Mike. The hospital decided to replace Mike's food line with something called a plug. The tube down through his nose is just too irritating to have in for long periods of time. This plug thing is a neat hole in through his stomach with a tube and valve on it so they can use it to feed him, or not. Apparently it can even take fruit juice, soup or beer, which I am sure would cheer Mike up if he knew. It required an operation, so he was still very dozy through the day.
Many many thanks for all your suggestions of people who can help us understand this brain injury world. We will follow them all up gradually. It is amazing all the interconnections between people and it does feel like a whole support crew out there.
Andrew (Tracy's husband) and I have spent the evening following up on Christine Archer's music therapy suggestions and we now have a temporary version of a discman, with two sets of headphones, and a cd of the more mellow forms of Mike's music taste on it. We've made two cds, one of reallly mellow and a more noisy one for later when he is better. So tomorrow we start in on exploring it with Mike, using Christine's suggested system of pulsing our hand with Mike's hand to the beat of the music, watching for a response and so on. We'll start there and then later follow Christine's suggestions for taking it further.
It will be great to have another means of trying to reach him aside from touch and talking. The hospital said to talk about childhood memories and familiar people. We are all running out of stories about that period of time and getting bored with the ones we do remember! Much as we love you all of course!! I presume Mike doesn't remember it from day to day anyway.
Every day Mike receives at least five or six cards from friends and family. They all mean so much to us. We read them all out to him several times and talk about the people who sent them. I'm lucky Mike always talked so much about all of you as it means I can remember where you all fit in and remind him. we have to believe that at some level he absorbs all that warmth.
Regards
Lee
A quiet day at the office for Mike. The hospital decided to replace Mike's food line with something called a plug. The tube down through his nose is just too irritating to have in for long periods of time. This plug thing is a neat hole in through his stomach with a tube and valve on it so they can use it to feed him, or not. Apparently it can even take fruit juice, soup or beer, which I am sure would cheer Mike up if he knew. It required an operation, so he was still very dozy through the day.
Many many thanks for all your suggestions of people who can help us understand this brain injury world. We will follow them all up gradually. It is amazing all the interconnections between people and it does feel like a whole support crew out there.
Andrew (Tracy's husband) and I have spent the evening following up on Christine Archer's music therapy suggestions and we now have a temporary version of a discman, with two sets of headphones, and a cd of the more mellow forms of Mike's music taste on it. We've made two cds, one of reallly mellow and a more noisy one for later when he is better. So tomorrow we start in on exploring it with Mike, using Christine's suggested system of pulsing our hand with Mike's hand to the beat of the music, watching for a response and so on. We'll start there and then later follow Christine's suggestions for taking it further.
It will be great to have another means of trying to reach him aside from touch and talking. The hospital said to talk about childhood memories and familiar people. We are all running out of stories about that period of time and getting bored with the ones we do remember! Much as we love you all of course!! I presume Mike doesn't remember it from day to day anyway.
Every day Mike receives at least five or six cards from friends and family. They all mean so much to us. We read them all out to him several times and talk about the people who sent them. I'm lucky Mike always talked so much about all of you as it means I can remember where you all fit in and remind him. we have to believe that at some level he absorbs all that warmth.
Regards
Lee
Tuesday, March 08, 2005
Update, 8 March
Hi everyone, Lee again
We are inching forward. Mike was a little more alert today, awake longer and his eyes were a bit more open. The physio and speech therapy is still focusing on developing more swallowing and coughing, so the trachy can be removed. The effort Mike has to put in to lift his head up is immense, but he is getting it further. When we are talking in terms of 'awake', this is only his eyes being open and him registering familiar voices. The sad thing is that I keep hoping he will start frowning, because then we'd know he was trying to make sense of his situation.
Bryce and I have decided we have to rapidly learn a great deal about the long term treatment of severe brain injury. Mike seems on a conveyor belt where the hospital's focus is on the next step. While this is obviously sensible, we have no idea what could be happening now that could have a long term positive impact. Would music help him right now, or merely confuse him? Should we work more on developing his movement? ..etc etc. There doesn't seem to be any particular person looking at his case from the broad and long term view. We plan to start investigating, but don't really have any clear starting point to track down in depth unbiased advice. Any suggestions of people to talk to or books to read are very welcome
We are inching forward. Mike was a little more alert today, awake longer and his eyes were a bit more open. The physio and speech therapy is still focusing on developing more swallowing and coughing, so the trachy can be removed. The effort Mike has to put in to lift his head up is immense, but he is getting it further. When we are talking in terms of 'awake', this is only his eyes being open and him registering familiar voices. The sad thing is that I keep hoping he will start frowning, because then we'd know he was trying to make sense of his situation.
Bryce and I have decided we have to rapidly learn a great deal about the long term treatment of severe brain injury. Mike seems on a conveyor belt where the hospital's focus is on the next step. While this is obviously sensible, we have no idea what could be happening now that could have a long term positive impact. Would music help him right now, or merely confuse him? Should we work more on developing his movement? ..etc etc. There doesn't seem to be any particular person looking at his case from the broad and long term view. We plan to start investigating, but don't really have any clear starting point to track down in depth unbiased advice. Any suggestions of people to talk to or books to read are very welcome
Monday, March 07, 2005
Bedside report 7 March
Thank you for all those jokes and anecdotes, we will try them on Mike tomorrow. Big thanks also to Paul (Fonterra) for lots of motivational talk today about the weekend's Ironman and anecdotes of amazing recoveries from serious head injuries. All Mike's mates seem to have done extremely well.
Mike made more progress today. The physiotherapist (Kylie's very impressive friend Araminta)had Mike sitting upright on the edge of the bed this morning fighting manfully to get his neck to lift that concrete head of his into a fully vertical position. You could see him working hard to do it and he managed a few centimeters. I got the sense that the challenge interested him.
His eyes are opening more, when he is not exhausted, but are not obviously taking anything in yet. He smiled again (the third time since his accident) when his Mum told him that his Dad was meant to be helping but was distracted by a new number puzzle game "Sudoku" in the Herald (page A10, they were right that today's one was easy). I think his swallowing and coughing is getting stronger, but not enough yet for them to risk taking out his "trachy" as they call it. His right hand, which has been pretty passive and entirely easy going up to now, was clenching strongly today. To put your hand into either of his now may feel like putting your hand into a clam. Maybe he is dreaming of Indian wrestling.
We are still trying to train him to signal 'yes' or 'no' by tapping. Notwithstanding his opening of the eyes etc, he is still out to it.
We were told today that he might be moved to Wellington early next week. Apparently ACC contract the management of head injury cases like Mike's to a firm called Cavit that has units in Auckland and Lower Hutt. They would fly him down in a special plane (sponsored by NZ Post). If you can forgive the excrutiating pun, will keep you posted on this.
Mike's Dad
Mike made more progress today. The physiotherapist (Kylie's very impressive friend Araminta)had Mike sitting upright on the edge of the bed this morning fighting manfully to get his neck to lift that concrete head of his into a fully vertical position. You could see him working hard to do it and he managed a few centimeters. I got the sense that the challenge interested him.
His eyes are opening more, when he is not exhausted, but are not obviously taking anything in yet. He smiled again (the third time since his accident) when his Mum told him that his Dad was meant to be helping but was distracted by a new number puzzle game "Sudoku" in the Herald (page A10, they were right that today's one was easy). I think his swallowing and coughing is getting stronger, but not enough yet for them to risk taking out his "trachy" as they call it. His right hand, which has been pretty passive and entirely easy going up to now, was clenching strongly today. To put your hand into either of his now may feel like putting your hand into a clam. Maybe he is dreaming of Indian wrestling.
We are still trying to train him to signal 'yes' or 'no' by tapping. Notwithstanding his opening of the eyes etc, he is still out to it.
We were told today that he might be moved to Wellington early next week. Apparently ACC contract the management of head injury cases like Mike's to a firm called Cavit that has units in Auckland and Lower Hutt. They would fly him down in a special plane (sponsored by NZ Post). If you can forgive the excrutiating pun, will keep you posted on this.
Mike's Dad
Bedside Jokes?
Any suggestions anyone for simple (eg one-liner) jokes that might trigger Mike's trademark smile? So far he has smiled twice, a great morale booster. Another idea would be for amusing anecdotes that might stimulate Mike's long-term memory.
Thanks
Mike's Dad
Thanks
Mike's Dad
Sunday, March 06, 2005
6 March Post Mike's Ironman continues
We're thinking of the Ironmen and women resting up and presumably still euphoric. You all must be feeling so thrilled. We're presuming from your successes that Mike would have made his eleven hour goal. Strange to think that just over a fortnight ago Mike's biggest problem was how to cope if he didn't come in under eleven hours. None of us have dared mention 'Ironman' to Mike in case he is more conscious than he appears to be. He will be so furious to realise that he missed out on the Ironman. The key to recovery is supposed to be tranquility, not fury!
Its a frustratingly slow process here. Each day Mike makes a little more progress, but it is fairly small. Today he had his eyes half open a bit longer and some of that time seemed to focus on familiar voices. We keep telling him his first goal is to really get on top of swallowing and coughing, because then they can take the trachy thingy out of his throat. We think that is going okay.
We really appreciate all your comments on the blog. It is taking all our emotional and physical resources to get through this ordeal and your support makes a huge difference to us. It feels like there's an army of Mike supporters out there, helping us all on our journey.
From Mike's Mum
Its a frustratingly slow process here. Each day Mike makes a little more progress, but it is fairly small. Today he had his eyes half open a bit longer and some of that time seemed to focus on familiar voices. We keep telling him his first goal is to really get on top of swallowing and coughing, because then they can take the trachy thingy out of his throat. We think that is going okay.
We really appreciate all your comments on the blog. It is taking all our emotional and physical resources to get through this ordeal and your support makes a huge difference to us. It feels like there's an army of Mike supporters out there, helping us all on our journey.
From Mike's Mum
Subscribe to:
Posts (Atom)