Dougs home visit on Christmas Day went very well indeed. It was a bit emotional (quite understandable really!) and nearly proved disastrous when I tried liquidising tomato soup!!
We always wanted to change the colour scheme in the kitchen anyhow ............
Seriously though, it was really a very nice day - quiet with plenty of time for Doug to get used to the home atmosphere and settle into a different atmosphere.
He has been quite overcome by the good wishes for Christmas from all his friends - cards, emails and FaceBook posts, all of which really helped to make this Christmas quite memorable.
We returned him to the hospital at around 7.30pm, more or less intact (!!) and absolutely bushed but so happy. The staff tell us he slept like a babe (even through medication injections in the tummy!!) and woke up talking about his visit.
We plan to have him home on New Years Day though sadly medication, feed regime etc. mean he could not be with us to see the New Year in. I suspect that, given his propensity for calling folk on his mobile, some of you may just get a shout!!!!
Otherwise things have been ( and will be) a bit quiet until after the New Year holiday when the physio etc. all restarts. I sincerely hope that the home visits will have given added incentive to work hard at the programme since the biggest contributor to getting better is Douglas himself.
Douglas, Sheena and I all hope that you had a very happy Christmas and that you will all have a happy and prosperous New Year when it comes.
Iain
Friday 26 December 2008
Friday 19 December 2008
Things they are a moving ...........
This is just a quick update to let folks know that, at long last, we have got the go ahead for a 'day release' for Doug on Saturday 20th.
We'll be picking him up at around mid-day for a home visit of up to 4 hours!!! Whoopeeeeeee :-)
In honour of this he took delivery of his spanking new wheel chair to-day (although he's already talking about mods to fit a 500cc power pack - harum).
From this you will have gathered that he has not only recovered his upbeat mood but has been doing very well at physio, occupational therapy and speech and language.
He has put up with his somewhat hesitant parents trundling him out to the car park and loading him into the front seat of the car (whenever the rain stops that is!!) As he says - "guess who's the dummy for this dummy run!!"
He is now dealing with semi solid food (creamy mashed potato consistency is the thickest he can manage) and routinely has soup, main course (pureed), sweet and coffee. Absolutely brilliant I say!! He can't consume very much of anything as yet 'cause it is quite an effort to swallow but this is improving the more he does it. He really relishes re-discovering the taste of food; something he has not experienced since April.
We just have to be a little careful to ensure that he sits up for at least 30 minutes after eating (to let gravity do its work) in order to avoid regurgitation. Mind you, its a pointer for us auld yins who often complain after eating very late and then collapsing in bed - yeah well ..........
He has really been doing very well although, as always with Doug, it's never quite fast enough! Never the less I do get a sense that he has established a better understanding of how he is improving and consequently seems a bit more at peace with himself.
A very happy (and nervous!) Pappy!!
Iain
........ must apologise to anyone who had planned to visit the glories of the Astley on Saturday but we only had final confirmation this evening of the visit. All rather weather dependant and, so far, looks OK.
We'll be picking him up at around mid-day for a home visit of up to 4 hours!!! Whoopeeeeeee :-)
In honour of this he took delivery of his spanking new wheel chair to-day (although he's already talking about mods to fit a 500cc power pack - harum).
From this you will have gathered that he has not only recovered his upbeat mood but has been doing very well at physio, occupational therapy and speech and language.
He has put up with his somewhat hesitant parents trundling him out to the car park and loading him into the front seat of the car (whenever the rain stops that is!!) As he says - "guess who's the dummy for this dummy run!!"
He is now dealing with semi solid food (creamy mashed potato consistency is the thickest he can manage) and routinely has soup, main course (pureed), sweet and coffee. Absolutely brilliant I say!! He can't consume very much of anything as yet 'cause it is quite an effort to swallow but this is improving the more he does it. He really relishes re-discovering the taste of food; something he has not experienced since April.
We just have to be a little careful to ensure that he sits up for at least 30 minutes after eating (to let gravity do its work) in order to avoid regurgitation. Mind you, its a pointer for us auld yins who often complain after eating very late and then collapsing in bed - yeah well ..........
He has really been doing very well although, as always with Doug, it's never quite fast enough! Never the less I do get a sense that he has established a better understanding of how he is improving and consequently seems a bit more at peace with himself.
A very happy (and nervous!) Pappy!!
Iain
........ must apologise to anyone who had planned to visit the glories of the Astley on Saturday but we only had final confirmation this evening of the visit. All rather weather dependant and, so far, looks OK.
Sunday 7 December 2008
A period of mixed blessings ..........
Sorry for the delay in posting an update but I was holding off pending the outcome of Dougs eye tests on Friday 5th.
Like so many things recently, the results were good and not so good. Unfortunately it was decided not to remove the last stitch in the left eyelid at this point because the blink reaction had not improved sufficiently to ensure that the eyeball would remain fully lubricated.
This was a very great disappointment to Doug, who I fear had really been setting his heart on its removal. In consequence he was really quite upset on Friday evening but by Saturday afternoon he appeared to have rationalised the situation in his own mind.
The plus part concerned the fact that both eyes are essentially in good condition and any vision issues are nerve related and therefore subject to gradual improvement. The vision in his right eye can (and will) be improved by a pair of glasses; the vision in his left eye will remain slightly blurred mainly as a result of the eye ointment being used as a replacement for tears (the natural lubricant). However, when the blink response comes back it is possible that a less viscous ointment can be used, thus reducing the blurring effect.
He also had a series of swallow tests using fluoroscopy techniques and this showed that, although there was a continuing improvement, he really had to do more swallow related exercises. Never the less he is able to have his occasional cup of thickened coffee, which goes down a bundle!!
He is presently working on bed - chair - bed transfers aimed at hopefully getting him home on a day pass. I guess it'll not be a full day, given that he still needs peg applied medication and fluids, but even a couple of hours would be great!!!!!!!
If this works, we can think of a repeat at Christmas time but we are NOT building our hopes too much at this point.
His other physio is coming along, although as the physios say "he has great potential, if he could just get with the programme" - Doug of course agrees that he is lazy and needs to get his backside in gear :-)
I continue to be impressed by Doug ....... I'm not at all sure I could have dealt with the eye test business as well as he has done. I just hope that there are going to be some real positives in the near future. He badly needs a confidence builder to boost his morale. Having said that, he generally manages to talk a storm when visitors come in - so much so that they have difficulty getting a word in edgewise!!
Thanks to everyone ................ Sheena and I don't know how we could cope without you all.
Iain
Like so many things recently, the results were good and not so good. Unfortunately it was decided not to remove the last stitch in the left eyelid at this point because the blink reaction had not improved sufficiently to ensure that the eyeball would remain fully lubricated.
This was a very great disappointment to Doug, who I fear had really been setting his heart on its removal. In consequence he was really quite upset on Friday evening but by Saturday afternoon he appeared to have rationalised the situation in his own mind.
The plus part concerned the fact that both eyes are essentially in good condition and any vision issues are nerve related and therefore subject to gradual improvement. The vision in his right eye can (and will) be improved by a pair of glasses; the vision in his left eye will remain slightly blurred mainly as a result of the eye ointment being used as a replacement for tears (the natural lubricant). However, when the blink response comes back it is possible that a less viscous ointment can be used, thus reducing the blurring effect.
He also had a series of swallow tests using fluoroscopy techniques and this showed that, although there was a continuing improvement, he really had to do more swallow related exercises. Never the less he is able to have his occasional cup of thickened coffee, which goes down a bundle!!
He is presently working on bed - chair - bed transfers aimed at hopefully getting him home on a day pass. I guess it'll not be a full day, given that he still needs peg applied medication and fluids, but even a couple of hours would be great!!!!!!!
If this works, we can think of a repeat at Christmas time but we are NOT building our hopes too much at this point.
His other physio is coming along, although as the physios say "he has great potential, if he could just get with the programme" - Doug of course agrees that he is lazy and needs to get his backside in gear :-)
I continue to be impressed by Doug ....... I'm not at all sure I could have dealt with the eye test business as well as he has done. I just hope that there are going to be some real positives in the near future. He badly needs a confidence builder to boost his morale. Having said that, he generally manages to talk a storm when visitors come in - so much so that they have difficulty getting a word in edgewise!!
Thanks to everyone ................ Sheena and I don't know how we could cope without you all.
Iain
Tuesday 25 November 2008
An upset to the progress .....
Poor Doug hit a really bad spot late on Sunday evening (23rd) initiated by a somewhat hurried move of bed space within the ward that placed him at the opposite end to the nursing station.
This seemed to completely destroy his sense of personal space and badly affected his confidence in his ability to control his environment.
This reawakened his feelings of insecurity and knocked his mood completely out of kilter - his feeling of frustration at his perceived lack of progress and his anger at all that he has lost returned in a trice, the consequence of which was a refusal to accept any intervention (feed, water, medication, physio etc.) and also a desire to be left completely alone.
However thank God, the good news is that, after an agonising couple of days he appears to have come round to accepting feed and medication as of 11 pm Tuesday 25th.
We were getting very concerned over his weakening state especially the effects of dehydration.
We can only hope that his mood continues to improve as the days pass.
Sheena and I have no way of knowing for sure just what he is going through but, from what he has said, it must be absolute torment and the fact that he is able to deal with it I believe says a great deal about him as a person. I'm sure he will tell me I'm talking rubbish when he gets round to reading all this for himself but ...............
So, on behalf of Douglas I extend apologies to those staunch friends who braved the Edinburgh weather in the last few days only to be turned away at the door so to speak. Your thoughts and kindness is now and always will be of immense importance to Doug as he struggles to come to terms with his own personal disaster.
Iain
This seemed to completely destroy his sense of personal space and badly affected his confidence in his ability to control his environment.
This reawakened his feelings of insecurity and knocked his mood completely out of kilter - his feeling of frustration at his perceived lack of progress and his anger at all that he has lost returned in a trice, the consequence of which was a refusal to accept any intervention (feed, water, medication, physio etc.) and also a desire to be left completely alone.
However thank God, the good news is that, after an agonising couple of days he appears to have come round to accepting feed and medication as of 11 pm Tuesday 25th.
We were getting very concerned over his weakening state especially the effects of dehydration.
We can only hope that his mood continues to improve as the days pass.
Sheena and I have no way of knowing for sure just what he is going through but, from what he has said, it must be absolute torment and the fact that he is able to deal with it I believe says a great deal about him as a person. I'm sure he will tell me I'm talking rubbish when he gets round to reading all this for himself but ...............
So, on behalf of Douglas I extend apologies to those staunch friends who braved the Edinburgh weather in the last few days only to be turned away at the door so to speak. Your thoughts and kindness is now and always will be of immense importance to Doug as he struggles to come to terms with his own personal disaster.
Iain
Friday 21 November 2008
Onward - ever onward .........
Douglas continues to do well with lots of little improvements that, in the great scheme of things, add up to a steady move forward.
Needless to say it's all too slow for Doug but I do believe he is now recognising that it does all take time and railing about lack of progress can change very little.
He is generally in very good spirits and, when the mood takes him, his sense of humour really reasserts itself. The other night I happened to make a remark about rather onerous loo cleaning duties in our caravaning days and that really set him off!! We all ended up in fits of laughter .... so much so that the nurses were coming over to share the hilarity!!
His next eye appointment is still to come on the 5th December and, as he says, we'll see what happens, but hopefully it will be good. He is resigned to the possibility he'll have to wear specs at least for the medium term, and if this improves his sight, he's happy to go along with it.
Swallow tests are now routine and the latest one had him, at long last, consuming coffee, albeit thickened to a custard consistence. He was in seventh heaven at this .... as he says he's a coffee junkie!! It's notiable that his mental arithmetic goe a bit skewy at this point .... his speech therapist ALWAYS counts more spoonfulls than Doug does!! :-) (His swallow response is very good but does need a bit of improvement before any attempt at solids and no-one is making any predictions about this just yet.
He is due for a full scale swallow test using fluoroscopy to investigate more fully how things are working but we haven't a date for this yet.
The main reason for this is that the left vocal chord is still not working properly (hence the rather guteral voice) although the right chord is doing its best to compensate but he still cannot cough in the same way we all do (seems to need a rapid closure of the chords).
Feeling in the left side of his face is slowly returning and now extends from the jaw line up to the cheek bone. Makes shaving a bit easier for him!! Hopefully this signals the possibility of a return of some muscular activity and, if so, it'll also help with his swallow and maybe his blink control.
His physio and occupational therapy continues with the focus on balance, standing and walking and in spacial awareness. He seems to be doing well at all these and his 'I'm just rubbish' comments do seem to have diminished in frequency. The staff are very strong on weekly and monthly goal setting and I guess this helps greatly in giving him a sense of achievement.
The gift from all his friends of a Sony DVD player (when he was in the Western) is really appreciated and he uses it a great deal now - even to the extent of enjoying biking DVDs (which shows great resilience I reccon).
He still has short periods of high emotion - sad news or kindness - but he can get through these without too much difficulty - all credit to him!!
As you can imagine, Sheena and I are much lighter in mood as a result, although we still find ourselves saying ' now don't get too confident in continued improvement .........'
Keep up the visits .. Doug really does love to see all his friends (even though you might have a problem getting a word in edgewise!!!)
Iain
Needless to say it's all too slow for Doug but I do believe he is now recognising that it does all take time and railing about lack of progress can change very little.
He is generally in very good spirits and, when the mood takes him, his sense of humour really reasserts itself. The other night I happened to make a remark about rather onerous loo cleaning duties in our caravaning days and that really set him off!! We all ended up in fits of laughter .... so much so that the nurses were coming over to share the hilarity!!
His next eye appointment is still to come on the 5th December and, as he says, we'll see what happens, but hopefully it will be good. He is resigned to the possibility he'll have to wear specs at least for the medium term, and if this improves his sight, he's happy to go along with it.
Swallow tests are now routine and the latest one had him, at long last, consuming coffee, albeit thickened to a custard consistence. He was in seventh heaven at this .... as he says he's a coffee junkie!! It's notiable that his mental arithmetic goe a bit skewy at this point .... his speech therapist ALWAYS counts more spoonfulls than Doug does!! :-) (His swallow response is very good but does need a bit of improvement before any attempt at solids and no-one is making any predictions about this just yet.
He is due for a full scale swallow test using fluoroscopy to investigate more fully how things are working but we haven't a date for this yet.
The main reason for this is that the left vocal chord is still not working properly (hence the rather guteral voice) although the right chord is doing its best to compensate but he still cannot cough in the same way we all do (seems to need a rapid closure of the chords).
Feeling in the left side of his face is slowly returning and now extends from the jaw line up to the cheek bone. Makes shaving a bit easier for him!! Hopefully this signals the possibility of a return of some muscular activity and, if so, it'll also help with his swallow and maybe his blink control.
His physio and occupational therapy continues with the focus on balance, standing and walking and in spacial awareness. He seems to be doing well at all these and his 'I'm just rubbish' comments do seem to have diminished in frequency. The staff are very strong on weekly and monthly goal setting and I guess this helps greatly in giving him a sense of achievement.
The gift from all his friends of a Sony DVD player (when he was in the Western) is really appreciated and he uses it a great deal now - even to the extent of enjoying biking DVDs (which shows great resilience I reccon).
He still has short periods of high emotion - sad news or kindness - but he can get through these without too much difficulty - all credit to him!!
As you can imagine, Sheena and I are much lighter in mood as a result, although we still find ourselves saying ' now don't get too confident in continued improvement .........'
Keep up the visits .. Doug really does love to see all his friends (even though you might have a problem getting a word in edgewise!!!)
Iain
Tuesday 11 November 2008
Back on track .....................
Douglas continues to amaze me!!
He overcame his immense frustration and anger and agreed to go along to the second eye appointment at the Eye Pavilion on Monday. The outcome was not quite what he had hoped for in that the remaining stitch was not completely removed but was 'lengthened ' to give around a 5mm opening. However it is a step in the right direction.
This is just enough to expose the cornea when he looks down. The intention appears to be to further open the lid in early December, assuming the eye condition does not deteriorate in the meantime. Vision is obviously fuzzy and will likely be so until it all gets used to being exposed and used and needless to say it can't come soon enough for Doug.
His mood has recovered quite remarkably - looks like I underestimated his recovery rate (again!!) although he can still get a bit agitated when the eye subject is raised.
He is due to go for an appointment with the audio consultant (a follow up on tests done last week) on Thursday 13th (afternoon) to review the hearing weakness on the left side and the options and, just as important, to convince Doug that using his right ear is not going to have adverse effects.
So I guess the message is ......... Let Visiting Commence!!!
With hindsight both Sheena and I find ourselves becoming perhaps over protective on occasion. forgetting that Doug is a 36 year old man and also that there are so many things that he alone must come to terms with. Having said that I'm sure we'll do the same thing over and over again in the coming months. Guess its all a part of being a parent :-)
Iain
He overcame his immense frustration and anger and agreed to go along to the second eye appointment at the Eye Pavilion on Monday. The outcome was not quite what he had hoped for in that the remaining stitch was not completely removed but was 'lengthened ' to give around a 5mm opening. However it is a step in the right direction.
This is just enough to expose the cornea when he looks down. The intention appears to be to further open the lid in early December, assuming the eye condition does not deteriorate in the meantime. Vision is obviously fuzzy and will likely be so until it all gets used to being exposed and used and needless to say it can't come soon enough for Doug.
His mood has recovered quite remarkably - looks like I underestimated his recovery rate (again!!) although he can still get a bit agitated when the eye subject is raised.
He is due to go for an appointment with the audio consultant (a follow up on tests done last week) on Thursday 13th (afternoon) to review the hearing weakness on the left side and the options and, just as important, to convince Doug that using his right ear is not going to have adverse effects.
So I guess the message is ......... Let Visiting Commence!!!
With hindsight both Sheena and I find ourselves becoming perhaps over protective on occasion. forgetting that Doug is a 36 year old man and also that there are so many things that he alone must come to terms with. Having said that I'm sure we'll do the same thing over and over again in the coming months. Guess its all a part of being a parent :-)
Iain
Saturday 8 November 2008
A bit of a setback ...............
Hi folks,
It's me again with a rambling update.
Doug has really been doing pretty well since his move to the Astley although, by his lights, his performance has all been a bit 'wubbish' and progress has been too slow.
There have been so many little improvements which, I can understand, count for little in his book, given his ambition.
I guess the underlying improvement has been in his acceptance of just how much has changed and therefore how much must be rebuilt and, ultimately, just how much of this has got to come from him and his efforts (although possibly the latter has not yet formed into any sort of cohesive plan).
To us, the most obvious indicator is that he has been talking about what will happen at Christmas time ..... I'll (Iain) drive to Dundee, Mhairi and Kirsty will do the food and we'll have a whale of a time!!! And then of course there's Heike and Nicks' wedding .................
And he'll have to find some way to earn a living and pay the bills cause .............
Oh, and for those in the know - he's had a rather fetching haircut!! All the long curls at the back have gone and although he's still got his sideburns, thet're quite a bit shorter. Sorry, but he refuses to let me post any piks!!
All this would have been unthinkable only a month ago!!!!!!!!
Unfortunately, on Thursday 6th his eye appointment was canceled at the very last minute and this really upset him a very great deal. He had been setting great store on getting the stitch out and having the use of his left eye again and the cancellation knocked him way back.
As a result he has become un-cooperative and has been refusing feed and medication and is insisting that folk should just forget about him and get on with their lives 'cause he's useless'.
I suspect many of you may have had a call from him saying not to bother coming in to see him.
Please remember, this is not really Douglas talking ....... it's all being driven by feelings of helplessness and a lack of conviction that things will ever get better.
We have decided to give him space to work his way out of this depression and would ask you to do the same please, at least for a few days.
He does have a replacement eye appointment at the Eye Hospital on Monday 10th, but whether or not he'll agree to go along remains to be seen. We can only hope ............ We can also only hope that the outcome is good from his point of view.
I shall do my best to keep you all up to date.
Iain
It's me again with a rambling update.
Doug has really been doing pretty well since his move to the Astley although, by his lights, his performance has all been a bit 'wubbish' and progress has been too slow.
There have been so many little improvements which, I can understand, count for little in his book, given his ambition.
I guess the underlying improvement has been in his acceptance of just how much has changed and therefore how much must be rebuilt and, ultimately, just how much of this has got to come from him and his efforts (although possibly the latter has not yet formed into any sort of cohesive plan).
To us, the most obvious indicator is that he has been talking about what will happen at Christmas time ..... I'll (Iain) drive to Dundee, Mhairi and Kirsty will do the food and we'll have a whale of a time!!! And then of course there's Heike and Nicks' wedding .................
And he'll have to find some way to earn a living and pay the bills cause .............
Oh, and for those in the know - he's had a rather fetching haircut!! All the long curls at the back have gone and although he's still got his sideburns, thet're quite a bit shorter. Sorry, but he refuses to let me post any piks!!
All this would have been unthinkable only a month ago!!!!!!!!
Unfortunately, on Thursday 6th his eye appointment was canceled at the very last minute and this really upset him a very great deal. He had been setting great store on getting the stitch out and having the use of his left eye again and the cancellation knocked him way back.
As a result he has become un-cooperative and has been refusing feed and medication and is insisting that folk should just forget about him and get on with their lives 'cause he's useless'.
I suspect many of you may have had a call from him saying not to bother coming in to see him.
Please remember, this is not really Douglas talking ....... it's all being driven by feelings of helplessness and a lack of conviction that things will ever get better.
We have decided to give him space to work his way out of this depression and would ask you to do the same please, at least for a few days.
He does have a replacement eye appointment at the Eye Hospital on Monday 10th, but whether or not he'll agree to go along remains to be seen. We can only hope ............ We can also only hope that the outcome is good from his point of view.
I shall do my best to keep you all up to date.
Iain
Tuesday 28 October 2008
12 days in and we're really motoring ...........
My .... what a difference :-)
Douglas is really getting stuck into the rehab process now and with around 1.5 hours physio and 3 hrs up in his chair every day the results are beginning to show! This is topped up with speech therapists and occupational therapists - all of which makes for a real busy day.
Unfortunately it can never be fast enough for Douglas!! However he does seem to have reached an equilibrium between desires and ability which allows him to say '... I was rubbish at that, but it is getting better'. Believe you me that is one tremendous stride forward and we are so proud of him for getting to this point.
He still waxes lyrical about coffee, curry and chips and now Lucas' ice cream sodas!! The moment of truth is getting closer ....... he is now having regular sips of coffee, albeit via a sponge stick, and is loving it. More swallow tests have still to come but things are looking good since he is now able to move his mouth much more (opening especially) and his tongue movement is also improving.
The downside is that we can't stop him talking now!!!! In fairness he has nearly six months of enforced silence to make up for - heaven only knows what that must have been like for him; to listen and not to be able to join in. Even more to have been unable to articulate the simple things like 'my head hurts' or I want to go to the toilet'; stuff that we all take so for granted in our own lives.
On the plus side, his speech is much clearer than it was only 10 days ago even though its still very guttural and quite tiring for him.
He is now able to slowly walk 20 to 30 paces using a zimmer frame and with a bit of balance support from physios although general muscular strength in the torso means it is hard for him to keep an upright stance. This is however improving the more he has to do it. He is also working on the left/right co-ordination, but in his own words 'I'm ruuubish at that ...' Please note that 'ruuubish' must be said al la Elmer Fudd (I hate wabbits) to be truly effective!
We are currently working on a more acceptable version of 'I must get my arse in gear!!'. Mainly because, right now, volume control is almost impossible for him and the sound of 'get my arse in gear' echoing through the corridors is a mite discombubilating :-))
Thank you all for your visits ............ they really mean a very great deal to Dougie and really bring him to life.
Iain
Douglas is really getting stuck into the rehab process now and with around 1.5 hours physio and 3 hrs up in his chair every day the results are beginning to show! This is topped up with speech therapists and occupational therapists - all of which makes for a real busy day.
Unfortunately it can never be fast enough for Douglas!! However he does seem to have reached an equilibrium between desires and ability which allows him to say '... I was rubbish at that, but it is getting better'. Believe you me that is one tremendous stride forward and we are so proud of him for getting to this point.
He still waxes lyrical about coffee, curry and chips and now Lucas' ice cream sodas!! The moment of truth is getting closer ....... he is now having regular sips of coffee, albeit via a sponge stick, and is loving it. More swallow tests have still to come but things are looking good since he is now able to move his mouth much more (opening especially) and his tongue movement is also improving.
The downside is that we can't stop him talking now!!!! In fairness he has nearly six months of enforced silence to make up for - heaven only knows what that must have been like for him; to listen and not to be able to join in. Even more to have been unable to articulate the simple things like 'my head hurts' or I want to go to the toilet'; stuff that we all take so for granted in our own lives.
On the plus side, his speech is much clearer than it was only 10 days ago even though its still very guttural and quite tiring for him.
He is now able to slowly walk 20 to 30 paces using a zimmer frame and with a bit of balance support from physios although general muscular strength in the torso means it is hard for him to keep an upright stance. This is however improving the more he has to do it. He is also working on the left/right co-ordination, but in his own words 'I'm ruuubish at that ...' Please note that 'ruuubish' must be said al la Elmer Fudd (I hate wabbits) to be truly effective!
We are currently working on a more acceptable version of 'I must get my arse in gear!!'. Mainly because, right now, volume control is almost impossible for him and the sound of 'get my arse in gear' echoing through the corridors is a mite discombubilating :-))
Thank you all for your visits ............ they really mean a very great deal to Dougie and really bring him to life.
Iain
Friday 17 October 2008
And now the hard work starts ..................
Douglas is now ensconced in the East Pavilion of the Astley Ainslie :-)
The move went off OK at 12:30 on the 16th. Unfortunately however he is in a ward where the general population is rather elderly and I think this has taken him rather aback, which I can quite understand, especially after the western where the residents were much younger and very chatty.
He did seem a bit down and quite worried that he'd end up as he put it "disabled and unable to drive, climb or ride his bike". It seems that the realisation of just how far he has to go had suddenly dawned and the lack of progress was really frustrating. In his words "I'm an impatient bugger who wants it all now!".
Yesterday afternoon was quite a busy one what with meet and greet sessions with physios, doctors and speech therapists so by early evening he was really tired, particularly since he'd been up in the chair since he arrived. However he is a great chat merchant and managed to get a few laughs out of it all. His lead physio is a very nice young lady called Jane and, when searching for an aid to remember names, his mum suggested perhaps "Me Tarzan - you Jane" could fill the bill :-)) Brought tears of laughter to Dougs eyes I can tell you!!
His speech therapist, Anne, seemed to strike up a good rapport with him which is great.
Doug does seem to be speaking much more clearly with wider mouth opening and I gather some of his friends have already had phone conversations with him!! However it is still rather hard work and he can get quite tired after a while.
Visiting hours at the Astley are 3pm till 8pm.
I think, until he has truly settled in, Sheena and I will keep to the 3 to 5 and 6:30 to 8 routine but please feel free to visit whenever you can.
For those who do not know the hospital, the East Pavilion is actually at the west end of the complex, with easy access from Canan Lane. If arriving by bus, alight at the Canny Man pub and walk down the side towards the hospital.
Be warned that Canan Lane is closed to all traffic (road works) right now, so, if coming by car you'll need to enter by the main gate and follow the signs.
Iain
The move went off OK at 12:30 on the 16th. Unfortunately however he is in a ward where the general population is rather elderly and I think this has taken him rather aback, which I can quite understand, especially after the western where the residents were much younger and very chatty.
He did seem a bit down and quite worried that he'd end up as he put it "disabled and unable to drive, climb or ride his bike". It seems that the realisation of just how far he has to go had suddenly dawned and the lack of progress was really frustrating. In his words "I'm an impatient bugger who wants it all now!".
Yesterday afternoon was quite a busy one what with meet and greet sessions with physios, doctors and speech therapists so by early evening he was really tired, particularly since he'd been up in the chair since he arrived. However he is a great chat merchant and managed to get a few laughs out of it all. His lead physio is a very nice young lady called Jane and, when searching for an aid to remember names, his mum suggested perhaps "Me Tarzan - you Jane" could fill the bill :-)) Brought tears of laughter to Dougs eyes I can tell you!!
His speech therapist, Anne, seemed to strike up a good rapport with him which is great.
Doug does seem to be speaking much more clearly with wider mouth opening and I gather some of his friends have already had phone conversations with him!! However it is still rather hard work and he can get quite tired after a while.
Visiting hours at the Astley are 3pm till 8pm.
I think, until he has truly settled in, Sheena and I will keep to the 3 to 5 and 6:30 to 8 routine but please feel free to visit whenever you can.
For those who do not know the hospital, the East Pavilion is actually at the west end of the complex, with easy access from Canan Lane. If arriving by bus, alight at the Canny Man pub and walk down the side towards the hospital.
Be warned that Canan Lane is closed to all traffic (road works) right now, so, if coming by car you'll need to enter by the main gate and follow the signs.
Iain
Friday 10 October 2008
Wagons Ho for the Astley Ainslie !!!!!!!!!
Some days are certainly whoopeeeee days and this was one of them!!
Douglas continues to improve, albeit in many small ways.
However the most important improvement for quite a while came to-day when we heard Doug is due to move to Astley Ainslie next Thursday (16th Oct) !!!!!!!!!!!!!!!!!!
Doug, in his usual pragmatic fashion, said 'yeah well I'll believe it when it happens!" - but never the less we have seen the transfer list and his transport has been booked, as has his bed at the other end!
Looks like the destination is the East Pavilion!
We are not certain of visiting hours or anything else right now, but I'll post immediately I have firm info to go on.
He was in a bit of a funny (strange) mood earlier to-day which I'm sure was due to the feeling that he'd been down this route before and nothing had come of it. However I'm sure he was secretly grinning to himself (although he'd never admit it!!). Certainly he was in fine fettle in the evening when he had a string of visitors (Annette, Kay, Veronica, Neil (Hay) and Lorna). Belly laughs abounded as did OohAah moments when things like fish'n'chips; coffeee; G&Ts; Stella; curry & chips were mentioned in the conversation!!
I feel for him .......... after all he's tasted nothing by mouth since April (PEG feeding conveys no great pleasure to the taste buds at all!! In fact I'm told by those who know that, if eaten, it tastes not unlike wall paper paste!!! Ugh..)
So ........ if you have a hot line to anyone of importance - get it working please. We don't want another let down.
A very happy pappy (and a yummy mummy as well!!!)
Douglas continues to improve, albeit in many small ways.
However the most important improvement for quite a while came to-day when we heard Doug is due to move to Astley Ainslie next Thursday (16th Oct) !!!!!!!!!!!!!!!!!!
Doug, in his usual pragmatic fashion, said 'yeah well I'll believe it when it happens!" - but never the less we have seen the transfer list and his transport has been booked, as has his bed at the other end!
Looks like the destination is the East Pavilion!
We are not certain of visiting hours or anything else right now, but I'll post immediately I have firm info to go on.
He was in a bit of a funny (strange) mood earlier to-day which I'm sure was due to the feeling that he'd been down this route before and nothing had come of it. However I'm sure he was secretly grinning to himself (although he'd never admit it!!). Certainly he was in fine fettle in the evening when he had a string of visitors (Annette, Kay, Veronica, Neil (Hay) and Lorna). Belly laughs abounded as did OohAah moments when things like fish'n'chips; coffeee; G&Ts; Stella; curry & chips were mentioned in the conversation!!
I feel for him .......... after all he's tasted nothing by mouth since April (PEG feeding conveys no great pleasure to the taste buds at all!! In fact I'm told by those who know that, if eaten, it tastes not unlike wall paper paste!!! Ugh..)
So ........ if you have a hot line to anyone of importance - get it working please. We don't want another let down.
A very happy pappy (and a yummy mummy as well!!!)
Wednesday 1 October 2008
The improvement continues ........
Over the last 10 days Douglas has continued to improve.
Most significantly his mood has really lightened and become much more positive and, with the removal of his trachy, his speech is getting better. He still has a lot of work to do in getting throat muscles and jaw movement to improve but there are definite positive signs (sticking his tongue out and blowing raspberries!!).
The swallow tests, which included a wee camera up the nose to look at the throat movement, went OK and showed that his vocal chords are in good order, all of which bodes well for swallowing. He just needs to get back to doing the swallow more frequently and this means more practice.
His sense of humor is still all there and it's wonderful to see him have a good belly laugh on occasion!!
He (and we) are eagerly awaiting the Astley Ainslie evaluation team (expected this week and possibly even to-day) which will give us a moving date we hope. Dougs consultant really wants to see him moving on to intensive rehab and is pushing hard on his behalf.
Although he's still not comfortable usng any form of keyboard, his writing is getting better (a relative term!!) and he asked me to say a very big thank you to everyone for their best wishes and words of encouragement :-))
I'll post more on rehab as soon as we get info.
Iain & Doug
Most significantly his mood has really lightened and become much more positive and, with the removal of his trachy, his speech is getting better. He still has a lot of work to do in getting throat muscles and jaw movement to improve but there are definite positive signs (sticking his tongue out and blowing raspberries!!).
The swallow tests, which included a wee camera up the nose to look at the throat movement, went OK and showed that his vocal chords are in good order, all of which bodes well for swallowing. He just needs to get back to doing the swallow more frequently and this means more practice.
His sense of humor is still all there and it's wonderful to see him have a good belly laugh on occasion!!
He (and we) are eagerly awaiting the Astley Ainslie evaluation team (expected this week and possibly even to-day) which will give us a moving date we hope. Dougs consultant really wants to see him moving on to intensive rehab and is pushing hard on his behalf.
Although he's still not comfortable usng any form of keyboard, his writing is getting better (a relative term!!) and he asked me to say a very big thank you to everyone for their best wishes and words of encouragement :-))
I'll post more on rehab as soon as we get info.
Iain & Doug
Saturday 20 September 2008
And the trachy is gone ........ !!!!
Up to to-day, Douglas seemed to be doing very well on the micro trachy and talk was of 'maybe in a week or so we'll remove it altogether'.
This afternoon, Doug suddenly decided that he'd had enough of it and, with no warning, he undid the neck strap and popped it out himself. We were a bit panicky about this but the nurse said 'well OK, lets see how you do without it at all!' and applied a dressing over the wee hole.
All with the docs agreement of course!
By the time we left this evening, Doug had been doing fine, coughing and spitting as necessary!
I'll tell you what, it was NOT what we were expecting!!!!!
To top it all off, we were told that Friday next a team from the Astly Ainslie will be in to do an evaluation in preparation for Dougs admittance to rehab.
Whoopee .....................
However he does seem to be a bit more moody over the last couple of days, up and down, although when he's good, he's very good. Drowsy also tends to still be an issue but probably this is down to the anti-depressant they are using.
None the less it's all good progress :-))
Iain
This afternoon, Doug suddenly decided that he'd had enough of it and, with no warning, he undid the neck strap and popped it out himself. We were a bit panicky about this but the nurse said 'well OK, lets see how you do without it at all!' and applied a dressing over the wee hole.
All with the docs agreement of course!
By the time we left this evening, Doug had been doing fine, coughing and spitting as necessary!
I'll tell you what, it was NOT what we were expecting!!!!!
To top it all off, we were told that Friday next a team from the Astly Ainslie will be in to do an evaluation in preparation for Dougs admittance to rehab.
Whoopee .....................
However he does seem to be a bit more moody over the last couple of days, up and down, although when he's good, he's very good. Drowsy also tends to still be an issue but probably this is down to the anti-depressant they are using.
None the less it's all good progress :-))
Iain
Wednesday 17 September 2008
And the good stuff continues ......... !!!
Much to our surprise the medics to-day decided that now would be a good time to put Dougie on the smallest size tracky (micro trachy) and this was duly done this afternoon!!!
This size only allows small scale intervention for suctioning and, since it is only 4mm in diameter and does NOT have a cuff, Douglas is now breathing unaided through his mouth and nose and can talk as and when he wants to. This was quite unexpected ......... a week or two from now was hoped for so he has really jumped ahead a great deal. He seems quite delighted with all this.
However it is all a very different breathing regime and even more so when it comes to getting rid of any sputum which he needs to bring up (sorry .... gory details and all!) so he has a bit of acclimatisation to do. Poor Jules visited this afternoon and was treated to 45 minutes of a recumbent body snoring gently!!!
However, when he woke up, his mood was very upbeat and, as he signed, he can't wait to get started talking - he's got lots and lots to talk about :-))
The nursing staff are now trying to work out how they can fit a 'pause' button!!
His most recent trip to the gym involved three round trips on the parallel bars of which he was rightly proud! However he is now all concerned about having put on weight round the middle!
As the Registrar pointed out, it simply meant that he had a bit more work to do to turn it all back into muscle again .......... this got a half hearted response I'm told.
In addition to all this, his writing has improved very considerably (i.e. is much more readable) and he had made several promises regarding his future progress (including getting set for a visit to Mike and Liz in Canada!!) to Lorna. Great stuff!
Whoopee .....................
a Very Happy Pappy
Iain
This size only allows small scale intervention for suctioning and, since it is only 4mm in diameter and does NOT have a cuff, Douglas is now breathing unaided through his mouth and nose and can talk as and when he wants to. This was quite unexpected ......... a week or two from now was hoped for so he has really jumped ahead a great deal. He seems quite delighted with all this.
However it is all a very different breathing regime and even more so when it comes to getting rid of any sputum which he needs to bring up (sorry .... gory details and all!) so he has a bit of acclimatisation to do. Poor Jules visited this afternoon and was treated to 45 minutes of a recumbent body snoring gently!!!
However, when he woke up, his mood was very upbeat and, as he signed, he can't wait to get started talking - he's got lots and lots to talk about :-))
The nursing staff are now trying to work out how they can fit a 'pause' button!!
His most recent trip to the gym involved three round trips on the parallel bars of which he was rightly proud! However he is now all concerned about having put on weight round the middle!
As the Registrar pointed out, it simply meant that he had a bit more work to do to turn it all back into muscle again .......... this got a half hearted response I'm told.
In addition to all this, his writing has improved very considerably (i.e. is much more readable) and he had made several promises regarding his future progress (including getting set for a visit to Mike and Liz in Canada!!) to Lorna. Great stuff!
Whoopee .....................
a Very Happy Pappy
Iain
Thursday 11 September 2008
A truly wonderful week ............
Douglas seems to have turned another corner in the last five days and the result is really quite something to see !!!!
His mood has greatly improved and as a result he is much more receptive to physio and is very much more communicative and really very positive in his outlook. I find it quite hard to truly describe the change in him but, to give an example, this afternoon the physios fitted the smallest size trachy together with the talking valve and, much to their delight, he told them he wanted to give them a big hug and say thanks which he promptly did :-))
Rhea came in to see him shortly afterwards and he talked away great style with much hand gesturing and, although his words were not always easy to make out, the conversation flowed for around 45 minutes before he got a bit too tired.
Later on the Registrar (Dr. Murray) popped in to see him, having heard of the goings on, and he promptly held out his arms and gave her a hug, with hand signs to say thank you for all her work!!!
I think she was quite overcome to be truthfull.
He has also taking a much increased interest in his DVD library and has started to listen to music once again.
All of this is such a significant improvement that I'm almost afraid to believe it will still be true tomorrow ............ But despite this, to-day was the most wonderfull day for many months! Just to hear Dougs voice again and to see the animation in his responses was almost beyond description. Sheena and I were really quite lost for words - we haven't stopped grinning all evening!!
Iain
a real happy pappy
His mood has greatly improved and as a result he is much more receptive to physio and is very much more communicative and really very positive in his outlook. I find it quite hard to truly describe the change in him but, to give an example, this afternoon the physios fitted the smallest size trachy together with the talking valve and, much to their delight, he told them he wanted to give them a big hug and say thanks which he promptly did :-))
Rhea came in to see him shortly afterwards and he talked away great style with much hand gesturing and, although his words were not always easy to make out, the conversation flowed for around 45 minutes before he got a bit too tired.
Later on the Registrar (Dr. Murray) popped in to see him, having heard of the goings on, and he promptly held out his arms and gave her a hug, with hand signs to say thank you for all her work!!!
I think she was quite overcome to be truthfull.
He has also taking a much increased interest in his DVD library and has started to listen to music once again.
All of this is such a significant improvement that I'm almost afraid to believe it will still be true tomorrow ............ But despite this, to-day was the most wonderfull day for many months! Just to hear Dougs voice again and to see the animation in his responses was almost beyond description. Sheena and I were really quite lost for words - we haven't stopped grinning all evening!!
Iain
a real happy pappy
Wednesday 3 September 2008
and the improvement continues ..........
Douglas does seem to have turned a corner over the last week, whether due to his own efforts or the influence of anti-depressants we're not entirely sure, although I believe the former.
He has been undergoing a steady reduction in his trachy size and is now using the smallest size and tolerating it very well! It does also seem to have brought about an improvement in his chesty condition. The docs have done a sputum sample a couple of days ago and appear to have found nothing that needs anti-biotics which is very good news. This has been confirmed by a chest Xray. Unfortunately all this upset Doug quite a bit. Hardly surprising really 'cause is has always been the case that when a doctor comes visiting and Xrays were done it was because something was wrong, whereas, on this occasion, it was all to confirm that NOTHING was wrong!
He has been much more externally focussed than before - watching DVD's, listening to his Talking Books and having a concern for the well being of not only his friends but also others in the ward (and their visitors!!). As a measure of this, the other day a chap was admitted who was not at all well and, at the end of visiting time, several of his family stayed behind. Douglas signed to us that we should give out chairs to the family and not just take them away. Brought a lump to my throat I'll tell you.
He still has a tendency to turn night into day - awake all night and asleep much of the day! Mind you, if the right physios are on duty, he still gets popped into his chair for a couple of hours and taken down to the gym for walking practice!!
The plan is to start him using the 'talking valve' as soon as the docs believe he'll be able to cope with it - hopefully this week. Mind you, the results will doubtless need a lot of work on his part since he hasn't really used this ability for quite some time!! However, you never know .......
All in all, a week of progress, all in the right direction.
Mind the usual caveat applies to visiting ........... if he hasn't had a good night you could end up staring at a recumbent body draped over the bed!! But please - don't let this put you off visiting.
When he hears anyone other than Sheena and I he pretty soon wakes up :-)
Predictions ? Not much given to these after 4 months on a roller coaster but ... possibly end September for the rehab phase might just about be reasonable (God willing)
Iain
He has been undergoing a steady reduction in his trachy size and is now using the smallest size and tolerating it very well! It does also seem to have brought about an improvement in his chesty condition. The docs have done a sputum sample a couple of days ago and appear to have found nothing that needs anti-biotics which is very good news. This has been confirmed by a chest Xray. Unfortunately all this upset Doug quite a bit. Hardly surprising really 'cause is has always been the case that when a doctor comes visiting and Xrays were done it was because something was wrong, whereas, on this occasion, it was all to confirm that NOTHING was wrong!
He has been much more externally focussed than before - watching DVD's, listening to his Talking Books and having a concern for the well being of not only his friends but also others in the ward (and their visitors!!). As a measure of this, the other day a chap was admitted who was not at all well and, at the end of visiting time, several of his family stayed behind. Douglas signed to us that we should give out chairs to the family and not just take them away. Brought a lump to my throat I'll tell you.
He still has a tendency to turn night into day - awake all night and asleep much of the day! Mind you, if the right physios are on duty, he still gets popped into his chair for a couple of hours and taken down to the gym for walking practice!!
The plan is to start him using the 'talking valve' as soon as the docs believe he'll be able to cope with it - hopefully this week. Mind you, the results will doubtless need a lot of work on his part since he hasn't really used this ability for quite some time!! However, you never know .......
All in all, a week of progress, all in the right direction.
Mind the usual caveat applies to visiting ........... if he hasn't had a good night you could end up staring at a recumbent body draped over the bed!! But please - don't let this put you off visiting.
When he hears anyone other than Sheena and I he pretty soon wakes up :-)
Predictions ? Not much given to these after 4 months on a roller coaster but ... possibly end September for the rehab phase might just about be reasonable (God willing)
Iain
Monday 25 August 2008
And getting better in many small ways .....
Since the last post Douglas has been quite up and down by turns. The downs were really quite miserable for him I suspect and he was rather unresponsive to the extent that any form of physio was refused.
However by Wednesday he seemed to have gathered himself together a bit and, much to everyones surprise, one of the nurses (who has a very good way with him) breezed in and said - right now Doug. You don't get to lie there looking scruffy in my ward, so you're going to have a bath, get your hair washed and sit up in the chair for a couple of hours, so lets get started. In no time at all he was up in his chair, looking good! However, by the time it was all done, he was pretty bushed and sadly his visitors didn't really get much of his attention!
This was repeated every day and, by Sunday he was looking much better and being more positive about getting his trachy out and then getting rid of the PEG feeding tube!! He actually asked if he could have a drink of water! We felt really bad about saying 'no - cause you've still got to re-learn the art of swallowing'
He was a bit upset at that, but it didn't last long - Sheena explained all about trachies and swallowing etc. and one of the nurses talked over the business of getting used to breathing through his mouth and nose in preparation for trachy removal.
All in all his mood does seem to have improved greatly and he does appear to be thinking about the way forward (although perhaps he doesn't think of it quite that way yet). More important perhaps is that he does, at long last, appear to be believing folk when they say he IS getting better.
We hope this continues .....................
Once more ....... thank you all for your support! I know Douglas appreciates it even although he can't always join in the chat.
Iain
However by Wednesday he seemed to have gathered himself together a bit and, much to everyones surprise, one of the nurses (who has a very good way with him) breezed in and said - right now Doug. You don't get to lie there looking scruffy in my ward, so you're going to have a bath, get your hair washed and sit up in the chair for a couple of hours, so lets get started. In no time at all he was up in his chair, looking good! However, by the time it was all done, he was pretty bushed and sadly his visitors didn't really get much of his attention!
This was repeated every day and, by Sunday he was looking much better and being more positive about getting his trachy out and then getting rid of the PEG feeding tube!! He actually asked if he could have a drink of water! We felt really bad about saying 'no - cause you've still got to re-learn the art of swallowing'
He was a bit upset at that, but it didn't last long - Sheena explained all about trachies and swallowing etc. and one of the nurses talked over the business of getting used to breathing through his mouth and nose in preparation for trachy removal.
All in all his mood does seem to have improved greatly and he does appear to be thinking about the way forward (although perhaps he doesn't think of it quite that way yet). More important perhaps is that he does, at long last, appear to be believing folk when they say he IS getting better.
We hope this continues .....................
Once more ....... thank you all for your support! I know Douglas appreciates it even although he can't always join in the chat.
Iain
Friday 15 August 2008
A much better week ....
Some time ago I referred to a roller coaster ride. Well here we go again, but this time a definite up slope!!
Douglas suddenly seemed to have established a new sense of peace and acceptance by the end of last week and his mood lightened very considerably. This co-incided with the arrival of a new Registrar who talked with him about how he was going to progress to getting out of the Western and on to re-hab. He spoke with Doug about having a set of weekly goals (agreed with Doug) against which to measure progression and made it quite clear that Douglas was not sick enough to still be lying abed.
Much to our surprise, Doug agreed with all his plans and gave him the "O" finger sign!!
Things started to look up quite a bit.
His chest is still an issue and the Docs decided that, on the basis of a couple of cultures, that they'd put him on a 5 day anti-biotic blast (Wednesday). Furthermore the Opthalmist told him that he really wanted to re-apply the eyelid stitches to his left eye in order to make sure that it was not damaged before a 'final fix' could be applied. Doug was a bit upset at the thought of this (Thursday) and we were somewhat concerned at the possibility that he'd refuse at the last minute.
However, this afternoon (Friday) the stitching went ahead and after it all Doug was quite relaxed.
Absolutely brilliant !!!!!!!
We read out a few messages (Lorna, Jules and DavyP) and this caused a few tears, but he quickly recovered.
He does seem to have crossed over some invisible boundary ..................
He now has a new 'laptop like device' for speech generation and thinks its a bit dubious but is prepared to give it a go. On Thursday he wrote that he wished a very happy holiday to one of the nurses who was off to Malta for a couple of weeks - sheesh, he continually surprises us!
Keep up the support folks .................... at long last it seems to be really working!
Iain
Douglas suddenly seemed to have established a new sense of peace and acceptance by the end of last week and his mood lightened very considerably. This co-incided with the arrival of a new Registrar who talked with him about how he was going to progress to getting out of the Western and on to re-hab. He spoke with Doug about having a set of weekly goals (agreed with Doug) against which to measure progression and made it quite clear that Douglas was not sick enough to still be lying abed.
Much to our surprise, Doug agreed with all his plans and gave him the "O" finger sign!!
Things started to look up quite a bit.
His chest is still an issue and the Docs decided that, on the basis of a couple of cultures, that they'd put him on a 5 day anti-biotic blast (Wednesday). Furthermore the Opthalmist told him that he really wanted to re-apply the eyelid stitches to his left eye in order to make sure that it was not damaged before a 'final fix' could be applied. Doug was a bit upset at the thought of this (Thursday) and we were somewhat concerned at the possibility that he'd refuse at the last minute.
However, this afternoon (Friday) the stitching went ahead and after it all Doug was quite relaxed.
Absolutely brilliant !!!!!!!
We read out a few messages (Lorna, Jules and DavyP) and this caused a few tears, but he quickly recovered.
He does seem to have crossed over some invisible boundary ..................
He now has a new 'laptop like device' for speech generation and thinks its a bit dubious but is prepared to give it a go. On Thursday he wrote that he wished a very happy holiday to one of the nurses who was off to Malta for a couple of weeks - sheesh, he continually surprises us!
Keep up the support folks .................... at long last it seems to be really working!
Iain
Monday 11 August 2008
A real mixed up week ............
Poor Douglas has had quite a rotten week and is obviously trying to come to terms with all that has happened to him. Sometimes his mood lightens a bit but its all very up and down right now.
He had a really bad 24 hours on Wednesday/Thursday when it seemed that he had completely abandoned any attempt to keep going and was refusing to be fed, suctioned or given medication. We were very worried about him ............
However, by Friday he seemed to have recovered his will to go on and by Sunday he was becoming more responsive and a bit less negative. Unfortunately this has not yet resulted in co-operation with the physios (sitting up out of bed etc.) and so his chesty condition continues to be a bother to him although, despite it all, his cough reflex does seem to be getting much of it out without deep suctioning.
He has had spells when he wanted to watch videos and listen to audio books so perhaps all is not as gloomy as it sometimes feels.
We can but hope that he recovers his will to press on.
Every day seems to bring new challenges and we are, I think, coming to terms with the fact that we deal with things on a day to day basis where long term really means the end of a week.
We read the Blog and Facebook messages to him whenever he seems to be receptive - he can get quite emotional and tearful sometimes - and he does listen attentively and frequently gives thumbs up (or down!) depending on the content !! So keep them coming folks - Doug does appreciate them and one day I'm sure he'll be replying for himself.
If asked whether he wants visitors he'll often shake his head but when folk turn up 'unannounced' he's pleased to see them so please bear with him if he's feeling really lousy when you come along.
Iain
He had a really bad 24 hours on Wednesday/Thursday when it seemed that he had completely abandoned any attempt to keep going and was refusing to be fed, suctioned or given medication. We were very worried about him ............
However, by Friday he seemed to have recovered his will to go on and by Sunday he was becoming more responsive and a bit less negative. Unfortunately this has not yet resulted in co-operation with the physios (sitting up out of bed etc.) and so his chesty condition continues to be a bother to him although, despite it all, his cough reflex does seem to be getting much of it out without deep suctioning.
He has had spells when he wanted to watch videos and listen to audio books so perhaps all is not as gloomy as it sometimes feels.
We can but hope that he recovers his will to press on.
Every day seems to bring new challenges and we are, I think, coming to terms with the fact that we deal with things on a day to day basis where long term really means the end of a week.
We read the Blog and Facebook messages to him whenever he seems to be receptive - he can get quite emotional and tearful sometimes - and he does listen attentively and frequently gives thumbs up (or down!) depending on the content !! So keep them coming folks - Doug does appreciate them and one day I'm sure he'll be replying for himself.
If asked whether he wants visitors he'll often shake his head but when folk turn up 'unannounced' he's pleased to see them so please bear with him if he's feeling really lousy when you come along.
Iain
Friday 1 August 2008
Another flitting .........
To-day Doug was moved from Ward 33 to Ward 31. He was a bit upset at the thought of the move but he seemed to get over this after it was all over.
I really would love to believe that it represents one step nearer the door out but perhaps that's wishful thinking.
He does seem to be marginally lighter in mood but can still be a bit reluctant to see folk sometimes.
Thank you all for your blog messages ... I'll have quite a lot to read out to him to-morrow. I only hope I can do them justice.
Iain
I really would love to believe that it represents one step nearer the door out but perhaps that's wishful thinking.
He does seem to be marginally lighter in mood but can still be a bit reluctant to see folk sometimes.
Thank you all for your blog messages ... I'll have quite a lot to read out to him to-morrow. I only hope I can do them justice.
Iain
Wednesday 30 July 2008
Rumbling along the bottom .........
Douglas is really in a very bad place right now having decided that he really just wants to end it all. He has been swinging from total non compliance with anything to extremes of anger and frustration.
We have no way of knowing how much this is Douglas himself talking and how much is down to depression or is the result of the brain injury and we swing from faint optimism to depths of despair probably very much like Doug himself.
As of yesterday, Doug has at least accepted both medication and feeding again and very limited compliance with physio, washing, shaving etc. . As a result the removal of the trachy has been further delayed since he still needs a little suction.
He appears fairly communicative now, albeit in a rather negative fashion, and we take hope from this 'cause it means he hasn't really turned off so to speak. He is still very fragile however with his emotions very near the surface.
As for visitors, it really is almost an hour by hour judgment right now and I know this must make it hard for all of you, but its a case of suck it and see. I still feel its very important that he knows his friends are there for him so even if its only a 5 minute head round the door type of visit it really counts.
I know I don't have to say it but, for Doug right now, saying 'NO' to things is about the only degree of control he has so if you come along and he says no ..... don't take it personally.
Medically he is in very good shape and is on the minimum of drug intervention (anti-depressants) and physically his strength and mobility continue to return slowly and the only thing stopping his move to rehab is the need for the trachy. Somehow I wish we could better convince him of this in a rational fashion.
We hope and pray that he will eventually scramble out of this bad place and recover his drive to getting better.
Iain
We have no way of knowing how much this is Douglas himself talking and how much is down to depression or is the result of the brain injury and we swing from faint optimism to depths of despair probably very much like Doug himself.
As of yesterday, Doug has at least accepted both medication and feeding again and very limited compliance with physio, washing, shaving etc. . As a result the removal of the trachy has been further delayed since he still needs a little suction.
He appears fairly communicative now, albeit in a rather negative fashion, and we take hope from this 'cause it means he hasn't really turned off so to speak. He is still very fragile however with his emotions very near the surface.
As for visitors, it really is almost an hour by hour judgment right now and I know this must make it hard for all of you, but its a case of suck it and see. I still feel its very important that he knows his friends are there for him so even if its only a 5 minute head round the door type of visit it really counts.
I know I don't have to say it but, for Doug right now, saying 'NO' to things is about the only degree of control he has so if you come along and he says no ..... don't take it personally.
Medically he is in very good shape and is on the minimum of drug intervention (anti-depressants) and physically his strength and mobility continue to return slowly and the only thing stopping his move to rehab is the need for the trachy. Somehow I wish we could better convince him of this in a rational fashion.
We hope and pray that he will eventually scramble out of this bad place and recover his drive to getting better.
Iain
Thursday 17 July 2008
Back on the up again .....
Sorry for the long wait between posts but I wanted to wait to avoid 'false positives' so to speak.
Poor Douglas really had 4 days of absolute misery having pretty well convinced himself that he was 'never going to get out of here' in his own words. Nothing that anyone said or did seemed to convince him otherwise and he was really getting very desperate.
However by Wednesday morning he seemed to have recovered his spirits quite a bit, so much so that he was quite happy to go outside in the fresh air for around 45 minutes in his wheel chair and, with the aid of his talking valve, was able to converse quite a bit. Mind you he was pretty bushed after it all and slept for the remainder of the afternoon.
By the evening he was on pretty good form for his visitors and though his emotions were pretty near the surface he even managed to join in a joke or two.
To-day was equally good with an improvement in his speech and, it appeared to us, very much less in the way of 'suction' being needed. Mind you it must be an agonising experience having someone stick a tube down your throat and tickle to make you cough so any improvement is good. He managed a couple of hours on his talking valve which is really very good.
I can only hope that he stays as positive 'cause, apart from being better for him mentally, its also immensely better for his physical condition.
Thanks to all his friends who have visited and helped him through this tough spot. The real trick will be to keep his spirits up over time.
Iain
Poor Douglas really had 4 days of absolute misery having pretty well convinced himself that he was 'never going to get out of here' in his own words. Nothing that anyone said or did seemed to convince him otherwise and he was really getting very desperate.
However by Wednesday morning he seemed to have recovered his spirits quite a bit, so much so that he was quite happy to go outside in the fresh air for around 45 minutes in his wheel chair and, with the aid of his talking valve, was able to converse quite a bit. Mind you he was pretty bushed after it all and slept for the remainder of the afternoon.
By the evening he was on pretty good form for his visitors and though his emotions were pretty near the surface he even managed to join in a joke or two.
To-day was equally good with an improvement in his speech and, it appeared to us, very much less in the way of 'suction' being needed. Mind you it must be an agonising experience having someone stick a tube down your throat and tickle to make you cough so any improvement is good. He managed a couple of hours on his talking valve which is really very good.
I can only hope that he stays as positive 'cause, apart from being better for him mentally, its also immensely better for his physical condition.
Thanks to all his friends who have visited and helped him through this tough spot. The real trick will be to keep his spirits up over time.
Iain
Friday 11 July 2008
A real mixed up day ...........
Today was not one I'd hope to repeat I'm afraid. Douglas was really down, very, very frustrated and quite angry at his view of his progress. So much so that the bronchoscopy was in doubt because he simply refused to agree to it. Sheena and I spent a couple of hours this morning talking with him and eventually succeeded in persuading him to have it.
The good news is that it confirmed the improvement in his lung condition (the amount of gunge found was very significantly less that was seen on the CAT scan on Monday) and the docs did not believe it was necessary to do much suction at all since this would have required the use of a mild sedative (which they wanted to avoid given his state).
This was all explained to Douglas but it did little to lighten his mood.
By this evening he seemed to have quietened a bit and we can only hope this carries him through the night.
It's so heart rending when he says that all he wants is to go home and we have to tell him its not possible right now.
On a brighter note it is true that he has required very much less suction in the last 36 hours than ever before. We hope and pray this improvement continues.
Iain
The good news is that it confirmed the improvement in his lung condition (the amount of gunge found was very significantly less that was seen on the CAT scan on Monday) and the docs did not believe it was necessary to do much suction at all since this would have required the use of a mild sedative (which they wanted to avoid given his state).
This was all explained to Douglas but it did little to lighten his mood.
By this evening he seemed to have quietened a bit and we can only hope this carries him through the night.
It's so heart rending when he says that all he wants is to go home and we have to tell him its not possible right now.
On a brighter note it is true that he has required very much less suction in the last 36 hours than ever before. We hope and pray this improvement continues.
Iain
Wednesday 9 July 2008
Three forward ... one back
Sorry for the delay in posting an update but I have been holding off pending the results of the latest CAT scan.
Poor Douglas has had a pretty distressing four days mainly as a result of the remains of his chest infection which seems to have settled in the top of his left lung. He has been coughing a lot and needing fairly frequent 'suction', all of which is both very tiring and quite distressing.
However the good news is that the CAT scan shows that the source of the infection (3 small areas) have been killed off so hopefully things will improve now.
The Docs have decided to be a bit more aggressive in their treatment and have agreed with Doug to do a bronchioscopy (spelling??) examination with focused suction on Friday this week to try to finally clear out all the gunge. This is so important 'cause there is no chance of downsizing or even removing his trachy until his chest is finally clear. So be warned ... Friday may not be the best day to visit (he gets a low level of sedation for the procedure so may be woozy). I'll post if the procedure is canceled for any reason.
Despite all this he has been keeping up with his walking exercises and has managed around 5 mtrs down in the gym with the help of their 'walky' machine. The physios have agreed a 5 point plan with him outlining goals and timescales - imagine that, all with a chest condition that would lay most of us flat on our backs and incapable!!! I honestly can't remember them off hand but he is really trying. One was a minimum of 2 hours per day sitting upright in a chair - the first of which he achieved to-day. By the end he was really finding it difficult to keep his head upright and was really glad to get back into bed.
To top it all off he was moved into a 4 bed ward a couple of days ago and, despite being a bit uncertain over it, has coped well so far. Being dispassionate - all the goings on are a good distraction I feel and they do try to match patient care requirements where possible so that all need around the same level of care activity.
Nothing to do with his arrival, but within around 4 hours, two of the other occupants were moved out which meant relative peace and quiet! Maybe it was something we said???? Mind you that won't last long I suspect.
He is now in Room C Ward 32.
He does like seeing his friends and hearing their chat even though he may be a bit tired and not very responsive so thanks to all the folk that have visited!! It looks like around 30 minutes max seems to be optimum at the moment.
Even though we haven't been able to rig up wireless broadband yet, Sheena and I do read out all the blog and Facebook posts to him and it's amazing just how expressive one eye can be!!
Iain
Poor Douglas has had a pretty distressing four days mainly as a result of the remains of his chest infection which seems to have settled in the top of his left lung. He has been coughing a lot and needing fairly frequent 'suction', all of which is both very tiring and quite distressing.
However the good news is that the CAT scan shows that the source of the infection (3 small areas) have been killed off so hopefully things will improve now.
The Docs have decided to be a bit more aggressive in their treatment and have agreed with Doug to do a bronchioscopy (spelling??) examination with focused suction on Friday this week to try to finally clear out all the gunge. This is so important 'cause there is no chance of downsizing or even removing his trachy until his chest is finally clear. So be warned ... Friday may not be the best day to visit (he gets a low level of sedation for the procedure so may be woozy). I'll post if the procedure is canceled for any reason.
Despite all this he has been keeping up with his walking exercises and has managed around 5 mtrs down in the gym with the help of their 'walky' machine. The physios have agreed a 5 point plan with him outlining goals and timescales - imagine that, all with a chest condition that would lay most of us flat on our backs and incapable!!! I honestly can't remember them off hand but he is really trying. One was a minimum of 2 hours per day sitting upright in a chair - the first of which he achieved to-day. By the end he was really finding it difficult to keep his head upright and was really glad to get back into bed.
To top it all off he was moved into a 4 bed ward a couple of days ago and, despite being a bit uncertain over it, has coped well so far. Being dispassionate - all the goings on are a good distraction I feel and they do try to match patient care requirements where possible so that all need around the same level of care activity.
Nothing to do with his arrival, but within around 4 hours, two of the other occupants were moved out which meant relative peace and quiet! Maybe it was something we said???? Mind you that won't last long I suspect.
He is now in Room C Ward 32.
He does like seeing his friends and hearing their chat even though he may be a bit tired and not very responsive so thanks to all the folk that have visited!! It looks like around 30 minutes max seems to be optimum at the moment.
Even though we haven't been able to rig up wireless broadband yet, Sheena and I do read out all the blog and Facebook posts to him and it's amazing just how expressive one eye can be!!
Iain
Wednesday 2 July 2008
And a Whoopeee ..................
Doug had a quiet day ( one occupied entirely by physios !) yesterday and managed his three step routine but in the ward corridor this time!!
When we got in to see him, the physio had just re-fitted his talky valve. After a couple of tries he managed a clear "I love you both" and "Tell Anna I love her" !! The wonderful thing was that this was said using his vocal chords rather than a low down chesty sound :-) He was really chuffed !!
He gets really tired using it, mainly because after a fairly short time his throat dries out. If he were breathing through his nose and mouth, the input air would be moist, but with the trachy, it is dry.
After a few tries (25 mins or so) he signed "Enough already" and just before they disconnected it he said "Goodbye". That nearly had us in tears I can tell you!
His breathing does seem to have cleared quite a lot which really helps. We saw some of his writing, presumably in response to questions asked by the nurses and it is getting much clearer.
Quite a day all things considered!!
Iain
When we got in to see him, the physio had just re-fitted his talky valve. After a couple of tries he managed a clear "I love you both" and "Tell Anna I love her" !! The wonderful thing was that this was said using his vocal chords rather than a low down chesty sound :-) He was really chuffed !!
He gets really tired using it, mainly because after a fairly short time his throat dries out. If he were breathing through his nose and mouth, the input air would be moist, but with the trachy, it is dry.
After a few tries (25 mins or so) he signed "Enough already" and just before they disconnected it he said "Goodbye". That nearly had us in tears I can tell you!
His breathing does seem to have cleared quite a lot which really helps. We saw some of his writing, presumably in response to questions asked by the nurses and it is getting much clearer.
Quite a day all things considered!!
Iain
Monday 30 June 2008
Many small steps .......
It has been a relatively quiet few days with some small but significant improvements, none of which seem to have impressed Doug very much :-(
His breathing is definitely getting quieter and easier even though he still needs to be 'suctioned' every so often. The samples have cultured no bugs over the last three (or possibly 4) days so it is just possible he's managed to beat the dreaded chest infection at long last.
However he has yet to get to the point of having the trachy removed - something I'm certain he's really looking forward to. As are we all!!
Doug still gets mood swings although not quite as great as before but we're not really the people to judge since I suspect he uses our visits to relax, knowing there is someone there to keep watch over him. In consequence he probably does not feel the need to be bright and responsive when its only Sheena and I around.
In general he's looking a lot better - colour, skin tone etc. and his left eye seems to be coming along very well indeed. The Neuro Team were in to see him this afternoon and pronounced themselves very happy with his progress and the boss man spend some time telling all the good developments to Doug and detailing why he was so pleased - all of which can only have been beneficial.
He has now acquired a goodly collection of DVDs from all his many friends (for which we thank you most sincerely!) and treats his Sony DVD player with great care although he still finds it a bit difficult to concentrate on it for any length of time. Whether this is due to having only one active eye at the moment or because of rapid movement causing feelings of dizzyness I'm not sure.
I do know he gets a bit dizzy when he stands upright ... to be expected I guess given the areas of the brain that have been affected.
None the less it and the collection are treasured possessions !!!!
His writing is getting very much clearer with very little letter overlap and what he expresses is clear and unambiguous with very good use of language and spelling. All of this bodes well for the eventual return of speech and pleases the Docs greatly. Needless to say, we are delighted !!! :-)
He is still in Ward 32 with no sign of imminent moves.
Iain
His breathing is definitely getting quieter and easier even though he still needs to be 'suctioned' every so often. The samples have cultured no bugs over the last three (or possibly 4) days so it is just possible he's managed to beat the dreaded chest infection at long last.
However he has yet to get to the point of having the trachy removed - something I'm certain he's really looking forward to. As are we all!!
Doug still gets mood swings although not quite as great as before but we're not really the people to judge since I suspect he uses our visits to relax, knowing there is someone there to keep watch over him. In consequence he probably does not feel the need to be bright and responsive when its only Sheena and I around.
In general he's looking a lot better - colour, skin tone etc. and his left eye seems to be coming along very well indeed. The Neuro Team were in to see him this afternoon and pronounced themselves very happy with his progress and the boss man spend some time telling all the good developments to Doug and detailing why he was so pleased - all of which can only have been beneficial.
He has now acquired a goodly collection of DVDs from all his many friends (for which we thank you most sincerely!) and treats his Sony DVD player with great care although he still finds it a bit difficult to concentrate on it for any length of time. Whether this is due to having only one active eye at the moment or because of rapid movement causing feelings of dizzyness I'm not sure.
I do know he gets a bit dizzy when he stands upright ... to be expected I guess given the areas of the brain that have been affected.
None the less it and the collection are treasured possessions !!!!
His writing is getting very much clearer with very little letter overlap and what he expresses is clear and unambiguous with very good use of language and spelling. All of this bodes well for the eventual return of speech and pleases the Docs greatly. Needless to say, we are delighted !!! :-)
He is still in Ward 32 with no sign of imminent moves.
Iain
Wednesday 25 June 2008
And the progress continues ..... slowly
Sorry for the delay in posting an update on Dougies condition but I've been struggling with the right words and tone. However here goes:
Since my last post, Doug HAS been getting better but things have slowed down a bit.
He still has a very chesty condition that does appear to be clearing (according to nursing staff) although we find it difficult to see improvements. I guess this is because we are a bit too close and get very upset when he is distressed with his breathing. He can get very congested after a while and 'suction' seems to be getting more distressing possibly as he gets better at coughing for himself. I confess to extreme irritation, bordering on anger, at the time it takes to respond to his distress (and I know all the reasons but ..). I do feel that the old adage of 'do unto others what you would have done unto yourself' could be a salutory lesson for many. But then again the exception proves the rule as they do say.
As a result he can get very down in spirits and I can almost see the thoughts - when oh when is this going to get better???
His eye condition varied tremendously over the last week and eventually the opthalmist decided to go for a small stitch closure of the eyelid as being the only sure way of ensuring that the healing condition could be maintained. Needless to say this was yet another thing poor Doug had to cope with. The procedure was done just after lunch to-day and by visiting time the local anesthetic has begun to wear off and his eye was a bit sore. I think he was also getting tingling sensations in his left cheek and eyebrow (lots of rubbing) However, at long last consistent, effective treatment of the eye will be possible and healing should be pretty rapid. All the makee learn closure with sticky tape had served no useful purpose, merely prolonging the healing process by several weeks.
Probably the stitch will stay in until the muscles controlling the eyelids have recovered to the point of ensuring full closure.
Despite all this, Douglas still maintains his sense of humour and can joke with hand signals with his visitors.
Gees ........ I admire that lad I really do.
His writing continues to get better as does the degree of movement of his lips, jaw and tongue.
Because of all the other things going on he has not been up and about in the last couple of days, although just before this, he managed several steps on his own - albeit supported by a couple of physios - on his way from bed to chair !!!!!!!!! I'm sure he doesn't appreciate just how bit a thing this is in recovery terms, even though we tell him.
His planned move to Ward 31 has not yet happened (watch this space) so visiting hours remain at 3 to 5 pm and 6.30 to 8 pm.
If you're planning to pop in, I suggest between 4 and 5 or 6.30 and 7.30 since he may well be tired and sleepy at around 3 and needing meds and suction close to 8pm. Obviously all this may change on the day!!!!!
Many thanks for all your support.
Iain
Since my last post, Doug HAS been getting better but things have slowed down a bit.
He still has a very chesty condition that does appear to be clearing (according to nursing staff) although we find it difficult to see improvements. I guess this is because we are a bit too close and get very upset when he is distressed with his breathing. He can get very congested after a while and 'suction' seems to be getting more distressing possibly as he gets better at coughing for himself. I confess to extreme irritation, bordering on anger, at the time it takes to respond to his distress (and I know all the reasons but ..). I do feel that the old adage of 'do unto others what you would have done unto yourself' could be a salutory lesson for many. But then again the exception proves the rule as they do say.
As a result he can get very down in spirits and I can almost see the thoughts - when oh when is this going to get better???
His eye condition varied tremendously over the last week and eventually the opthalmist decided to go for a small stitch closure of the eyelid as being the only sure way of ensuring that the healing condition could be maintained. Needless to say this was yet another thing poor Doug had to cope with. The procedure was done just after lunch to-day and by visiting time the local anesthetic has begun to wear off and his eye was a bit sore. I think he was also getting tingling sensations in his left cheek and eyebrow (lots of rubbing) However, at long last consistent, effective treatment of the eye will be possible and healing should be pretty rapid. All the makee learn closure with sticky tape had served no useful purpose, merely prolonging the healing process by several weeks.
Probably the stitch will stay in until the muscles controlling the eyelids have recovered to the point of ensuring full closure.
Despite all this, Douglas still maintains his sense of humour and can joke with hand signals with his visitors.
Gees ........ I admire that lad I really do.
His writing continues to get better as does the degree of movement of his lips, jaw and tongue.
Because of all the other things going on he has not been up and about in the last couple of days, although just before this, he managed several steps on his own - albeit supported by a couple of physios - on his way from bed to chair !!!!!!!!! I'm sure he doesn't appreciate just how bit a thing this is in recovery terms, even though we tell him.
His planned move to Ward 31 has not yet happened (watch this space) so visiting hours remain at 3 to 5 pm and 6.30 to 8 pm.
If you're planning to pop in, I suggest between 4 and 5 or 6.30 and 7.30 since he may well be tired and sleepy at around 3 and needing meds and suction close to 8pm. Obviously all this may change on the day!!!!!
Many thanks for all your support.
Iain
Friday 20 June 2008
The possible cause .....
Dougie has again had a couple of mixed days, partly because of the intensifying physio involving longer periods of sitting up in a chair to strengthen the muscles of the torso and neck and also fighting off what we hope are the remnants of his chest infection.
He still has several days of the antibiotic course to go and does end up with quite a lot of gunge in his chest.
He is still on moisturised oxygen/air mix over night and he is getting really pissed off and frustrated with the whole thing so by early evening he's both tired, frustrated and angry at what he sees as a lack of progress. A very difficult combination for him.
Sheena and I find it all very distressing 'cause there is so little we can do other than try to offer re-assurance.
Mind you, when he is feeling OK he's really positive and very communicative.
As I mentioned in the previous post Doug had an series of tests on his heart earlier this week (part of the investigation planned quite some time ago) to determine whether or not there was some defect that could have caused the stroke. The Docs have found that he does in fact have a 'hole in the heart' (a Patent Foramen Ovale or PFO) that could have been the cause. This has been present since birth and so I guess there was always the possibility of a stroke.
According to the medical blurb around 20% of the population have this defect and a relatively small proportion ever have it treated because it gives no problem.
Given the combination of the defect and having had a stroke the feeling is that, in due course, a repair should be done to prevent any recurrence.
So now we all wait for proposals/information etc. on how this can be done.
In the meantime Doug will continue to have anti-clotting injections and wear rather fetching pressure stockings :-(.
All this has now been explained to Doug and he seems to have taken it well although I am sure it has added to the things Doug worries about.
Please keep up the support .......... its now that it really counts but equally don't be disheartened if you find he's far too tired to do much except sleep.
Iain
He still has several days of the antibiotic course to go and does end up with quite a lot of gunge in his chest.
He is still on moisturised oxygen/air mix over night and he is getting really pissed off and frustrated with the whole thing so by early evening he's both tired, frustrated and angry at what he sees as a lack of progress. A very difficult combination for him.
Sheena and I find it all very distressing 'cause there is so little we can do other than try to offer re-assurance.
Mind you, when he is feeling OK he's really positive and very communicative.
As I mentioned in the previous post Doug had an series of tests on his heart earlier this week (part of the investigation planned quite some time ago) to determine whether or not there was some defect that could have caused the stroke. The Docs have found that he does in fact have a 'hole in the heart' (a Patent Foramen Ovale or PFO) that could have been the cause. This has been present since birth and so I guess there was always the possibility of a stroke.
According to the medical blurb around 20% of the population have this defect and a relatively small proportion ever have it treated because it gives no problem.
Given the combination of the defect and having had a stroke the feeling is that, in due course, a repair should be done to prevent any recurrence.
So now we all wait for proposals/information etc. on how this can be done.
In the meantime Doug will continue to have anti-clotting injections and wear rather fetching pressure stockings :-(.
All this has now been explained to Doug and he seems to have taken it well although I am sure it has added to the things Doug worries about.
Please keep up the support .......... its now that it really counts but equally don't be disheartened if you find he's far too tired to do much except sleep.
Iain
Wednesday 18 June 2008
Slow and sometimes not so sure ...
Dougie has had a really mixed couple of days.
Yesterday was really quite good and he was responsive and active although still a bit chesty.
However to-day he was very down. We eventually discovered that he had had a couple of ultrasonic scans (echo??) of the heart done, one of which (yesterday) didn't work because they had removed the venflon in his left foot and couldn't get sufficient resolution without the dye present.
A venflon had been placed in his left hand to-day and the echo scan repeated.
The reason for the two scans in rapid succession was due to the first one not having worked.
Regrettably the staff had not thought it worth while mentioning this to Douglas and he had spent the whole day worrying himself sick with the fear that he had a critical heart problem particularly since he'd had a pain in his chest on Monday.
We managed to re-assure him I think (hope) before we left this evening that if anything was wrong, he'd be told.
Poor Clare walked into all this on her visit .......... however she did manage to lighten his mood quite a bit by bringing in several DVDs for him to watch.
I hope he has a better night and we'll see what to-morrow brings.
Iain
Yesterday was really quite good and he was responsive and active although still a bit chesty.
However to-day he was very down. We eventually discovered that he had had a couple of ultrasonic scans (echo??) of the heart done, one of which (yesterday) didn't work because they had removed the venflon in his left foot and couldn't get sufficient resolution without the dye present.
A venflon had been placed in his left hand to-day and the echo scan repeated.
The reason for the two scans in rapid succession was due to the first one not having worked.
Regrettably the staff had not thought it worth while mentioning this to Douglas and he had spent the whole day worrying himself sick with the fear that he had a critical heart problem particularly since he'd had a pain in his chest on Monday.
We managed to re-assure him I think (hope) before we left this evening that if anything was wrong, he'd be told.
Poor Clare walked into all this on her visit .......... however she did manage to lighten his mood quite a bit by bringing in several DVDs for him to watch.
I hope he has a better night and we'll see what to-morrow brings.
Iain
Monday 16 June 2008
And again ........... plus a Whoopeeeee !
Dougie has again been moved, this time to Ward 32 (also a single bed room).
When we got in to see him this afternoon, he actually spoke ! OK, as Heike says, it sounded a bit like Darth Vader (or Edward G Robinson for the older folk!) but it was recognisable.
I was having a hunt for his Shuffle in the bed side cupboard and couldn't find it when his hand popped out, pointing at the bottom section and he said, quite clearly " its in there! "
A feather would have been an adequate weapon just at that point I can tell you.
He then proceeded to try other words like Mum, Dad, Anna, Love You. Way to go maan!
Seems simple perhaps but given the fact that he still has a trachy tube in and has not uttered a sound since around the 20th April Its bloomin marvelous. Now that he's started it will be a matter of practice to kick start all the many muscles associated with forming words and controlling the vocal chords.
Keith (Feek) and Sarah (Shering) came in and brought a brilliant Tee Shirt complete with a Barks Vee sign logo!!! That REALLY went down well and raised many thumbs ups!! Perhaps Keith (who drew it up) may share it with us?? I tried a photo before I remembered that I'd followed the rules and switched off at the door...
To top it all off Nick & Heike gave him a present, on behalf of so many of his 'Good Vibes Group', of a Sony portable DVD player!! He was both quite overcome really delighted.
There is no way that we (Doug, Sheena and I) can ever truly express our thanks and appreciation for all that you folk have done since this all started but I'm sure it won't be long before Doug can return to firing off emails etc. and rest assured 'Thank You' will be the most used topic.
His writing continues to improve as does the spacial awareness.
All in all, the 16th June has been quite a memorable day.
Iain
When we got in to see him this afternoon, he actually spoke ! OK, as Heike says, it sounded a bit like Darth Vader (or Edward G Robinson for the older folk!) but it was recognisable.
I was having a hunt for his Shuffle in the bed side cupboard and couldn't find it when his hand popped out, pointing at the bottom section and he said, quite clearly " its in there! "
A feather would have been an adequate weapon just at that point I can tell you.
He then proceeded to try other words like Mum, Dad, Anna, Love You. Way to go maan!
Seems simple perhaps but given the fact that he still has a trachy tube in and has not uttered a sound since around the 20th April Its bloomin marvelous. Now that he's started it will be a matter of practice to kick start all the many muscles associated with forming words and controlling the vocal chords.
Keith (Feek) and Sarah (Shering) came in and brought a brilliant Tee Shirt complete with a Barks Vee sign logo!!! That REALLY went down well and raised many thumbs ups!! Perhaps Keith (who drew it up) may share it with us?? I tried a photo before I remembered that I'd followed the rules and switched off at the door...
To top it all off Nick & Heike gave him a present, on behalf of so many of his 'Good Vibes Group', of a Sony portable DVD player!! He was both quite overcome really delighted.
There is no way that we (Doug, Sheena and I) can ever truly express our thanks and appreciation for all that you folk have done since this all started but I'm sure it won't be long before Doug can return to firing off emails etc. and rest assured 'Thank You' will be the most used topic.
His writing continues to improve as does the spacial awareness.
All in all, the 16th June has been quite a memorable day.
Iain
Sunday 15 June 2008
Another move of digs .......
Much to our surprise Dougie was moved from Ward 33 to Ward 31 into a single bed room.
I think it'll be much better from his point of view (quiet etc) and does indicate how he is progressing.
However his chest did seem to be a bit rattly this afternoon and was not so productive. I only hope this doesn't mean the chest infection is back.
Importantly the visiting hours are a wee bit different:
3 to 5 pm as before
but 6.30 to 8 pm in the evening.
He really broke me up to-day ........ I got a hand written Fathers Day card (at the instigation of Kay) that was really quite legible. Wow.
Iain
I think it'll be much better from his point of view (quiet etc) and does indicate how he is progressing.
However his chest did seem to be a bit rattly this afternoon and was not so productive. I only hope this doesn't mean the chest infection is back.
Importantly the visiting hours are a wee bit different:
3 to 5 pm as before
but 6.30 to 8 pm in the evening.
He really broke me up to-day ........ I got a hand written Fathers Day card (at the instigation of Kay) that was really quite legible. Wow.
Iain
Update from Saturday
To-day (Friday) was NOT a good day .........
The change from ICU to NHCU was quite traumatic I fear. Poor Dougie was extremely frustrated, partly with our inability to understand what he was trying to write but also by the change from a one bed unit to a four bedder. If we find it a bit difficult to deal with, Doug must feel it much more :-(((
Because of the limited space, personal stuff is severely constrained so we've had to take away all the CDs plus most of the PC's etc..
We're struggling to find a music player that does NOT require the fine manual dexterity of the IPod for control. Now, there's a thought for messrs Apple. Hows about your disabled users fellahs ..............
I think the trying time really starts now ..................
Iain
To-day (Saturday) was a much better day. Dougie had settled down in the new ward environment - much busier and noisier that Ward 20 what with four folk in the same room.
To-day he was up in a chair, although they seem to find difficulty in getting one that really fits him ..... he's too long for most!!
I managed to get his IPod Shuffle charged up and loaded with music, so he was very pleased to be able to blank out the background. (I got a spare Shuffle so we can keep the thing charged and swop music)
He was a bit tired - not a good nights sleep last night I'm afraid but was very responsive.
His writing is getting much better with practice.
He can almost get himself out of bed ....... aah now that'll be a challenge for the nurses!!!
Iain
The change from ICU to NHCU was quite traumatic I fear. Poor Dougie was extremely frustrated, partly with our inability to understand what he was trying to write but also by the change from a one bed unit to a four bedder. If we find it a bit difficult to deal with, Doug must feel it much more :-(((
Because of the limited space, personal stuff is severely constrained so we've had to take away all the CDs plus most of the PC's etc..
We're struggling to find a music player that does NOT require the fine manual dexterity of the IPod for control. Now, there's a thought for messrs Apple. Hows about your disabled users fellahs ..............
I think the trying time really starts now ..................
Iain
To-day (Saturday) was a much better day. Dougie had settled down in the new ward environment - much busier and noisier that Ward 20 what with four folk in the same room.
To-day he was up in a chair, although they seem to find difficulty in getting one that really fits him ..... he's too long for most!!
I managed to get his IPod Shuffle charged up and loaded with music, so he was very pleased to be able to blank out the background. (I got a spare Shuffle so we can keep the thing charged and swop music)
He was a bit tired - not a good nights sleep last night I'm afraid but was very responsive.
His writing is getting much better with practice.
He can almost get himself out of bed ....... aah now that'll be a challenge for the nurses!!!
Iain
Friday 13 June 2008
Move to new digs ...
Hi folks ....
TRANSFER happening now.
Dougie is being moved to Ward 33 Neuro HDU this morning.
He has been up in his standing frame again this am and seems in fine fettle!
Please be aware that Ward 33 has strict visiting hours unlike Ward 20, so visiting will offer a new set of challenges!!
As I remember it times are as follows:
3 to 5 pm
6 to 7.30 pm
(If I've got these wrong I'll post a correction shortly)
These are strictly adhered to ..............
Way to go maan ...
Iain
TRANSFER happening now.
Dougie is being moved to Ward 33 Neuro HDU this morning.
He has been up in his standing frame again this am and seems in fine fettle!
Please be aware that Ward 33 has strict visiting hours unlike Ward 20, so visiting will offer a new set of challenges!!
As I remember it times are as follows:
3 to 5 pm
6 to 7.30 pm
(If I've got these wrong I'll post a correction shortly)
These are strictly adhered to ..............
Way to go maan ...
Iain
Thursday 12 June 2008
Another whoopeeeee moment!
Doug had a rather disturbed night last night although the night before he slept pretty well right through. We had kindof expected a quiet day to-day as a result, but no way. The physios descended with a motorised sort of zimmer and, after getting Doug sitting on the edge of the bed, suggested that he'd perhaps like to stand up, holding onto the device.
Damn me if he didn't do it too!!! He stood for a good three minutes, taking balance from the frame and even though he tended to have a list to port, was able to correct it himself.
Later I was recounting this to a passing Doctor and Doug, never one to miss an opportunity waved his hand and held up three fingers - right enough he'd done the standing exercise three times during the morning.
So now this is the standard method of transferring from bed to chair and back again.
He also had a chair outing to the hospital car park to cast an eye over a fine collection of motor bikes (including a Harley which he didn't think much of - and a big BMW shaft drive a la Boreman/McGregor which got the seal of approval) .
Tomorrow ................ well we'll have to wait and see what he comes up with won't we :-)
BTW the planned move to Neurology HDU was postponed due to lack of bed space. So he stays in Ward 20 for the time being.
Iain
Damn me if he didn't do it too!!! He stood for a good three minutes, taking balance from the frame and even though he tended to have a list to port, was able to correct it himself.
Later I was recounting this to a passing Doctor and Doug, never one to miss an opportunity waved his hand and held up three fingers - right enough he'd done the standing exercise three times during the morning.
So now this is the standard method of transferring from bed to chair and back again.
He also had a chair outing to the hospital car park to cast an eye over a fine collection of motor bikes (including a Harley which he didn't think much of - and a big BMW shaft drive a la Boreman/McGregor which got the seal of approval) .
Tomorrow ................ well we'll have to wait and see what he comes up with won't we :-)
BTW the planned move to Neurology HDU was postponed due to lack of bed space. So he stays in Ward 20 for the time being.
Iain
Tuesday 10 June 2008
And another step forward ........update to update
Doug has had a really mixed four days. Two were really not all that good, partly because of medical reasons and partly down to feeling really pissed off and despondent.
He has had most of the drug intervention points removed but, since he still has around 5 days of anti-biotics still to go, the Docs had tried to get a line in that would allow drugs to go directly to a larger vein. Unfortunately poor Doug had had so many such 'inlets' that his veins declared a go-slow and got very difficult to find.
None of this was too pleasant.
However to-day he was very much brighter. He has had his trachy tube down-sized in anticipation of a move to the Neurology HDU. This is now likely to happen on Thursday some time. I'll post as soon as we know more definitely.
From then on, the physio starts on the rehabilitation phase so I guess he'll be worked pretty hard. Mind you I know he relishes a challenge and it must be better than lying there getting frustrated.
Every day sees some little improvement and I'm sure, since we see him twice a day, we are not really appreciating the totality of it all.
I guess the most significant has been the writing since it shows that the use of language remains largely intact and this is good news for the return of speech when the combination of breathing and vocal chords recover.
Oh dear me .... I've just had another read through the blog and I realise I'd not mentioned the writing business before. So here goes with an update to the update :-)
About 3 days ago, when he was really pissed off, thrashing around in the bed and generally being pretty unresponsive, Sheena wrote on a bit of paper "Douglas, are you in pain?" and held it up in front of him. To our utter amazement, he grabbed the pen from her hand and wrote "YES !!". A little while later when he was pointing over his shoulder towards the window, he waggled his fingers and, when given the pen and paper, wrote "I want to escape .......".
You have no idea how much this means in neurological terms !! As Anna said, since he has not lost the use of language and can transmit to his hand for writing, it really means that his speech returning is much more likely - albeit over time since the other bits like tongue, mouth and throat muscles have also to recover.
He tends to pile one letter on top of another right now so when he goes fast I'm just not quick enough to catch it all but its a comin' :-)) Whoopee !!
Keep fighting Doug.
We're so proud of you.
Iain
He has had most of the drug intervention points removed but, since he still has around 5 days of anti-biotics still to go, the Docs had tried to get a line in that would allow drugs to go directly to a larger vein. Unfortunately poor Doug had had so many such 'inlets' that his veins declared a go-slow and got very difficult to find.
None of this was too pleasant.
However to-day he was very much brighter. He has had his trachy tube down-sized in anticipation of a move to the Neurology HDU. This is now likely to happen on Thursday some time. I'll post as soon as we know more definitely.
From then on, the physio starts on the rehabilitation phase so I guess he'll be worked pretty hard. Mind you I know he relishes a challenge and it must be better than lying there getting frustrated.
Every day sees some little improvement and I'm sure, since we see him twice a day, we are not really appreciating the totality of it all.
I guess the most significant has been the writing since it shows that the use of language remains largely intact and this is good news for the return of speech when the combination of breathing and vocal chords recover.
Oh dear me .... I've just had another read through the blog and I realise I'd not mentioned the writing business before. So here goes with an update to the update :-)
About 3 days ago, when he was really pissed off, thrashing around in the bed and generally being pretty unresponsive, Sheena wrote on a bit of paper "Douglas, are you in pain?" and held it up in front of him. To our utter amazement, he grabbed the pen from her hand and wrote "YES !!". A little while later when he was pointing over his shoulder towards the window, he waggled his fingers and, when given the pen and paper, wrote "I want to escape .......".
You have no idea how much this means in neurological terms !! As Anna said, since he has not lost the use of language and can transmit to his hand for writing, it really means that his speech returning is much more likely - albeit over time since the other bits like tongue, mouth and throat muscles have also to recover.
He tends to pile one letter on top of another right now so when he goes fast I'm just not quick enough to catch it all but its a comin' :-)) Whoopee !!
Keep fighting Doug.
We're so proud of you.
Iain
Wednesday 4 June 2008
PEG Inserted ........
Dougie had his PEG inserted this afternoon and the whole thing went smoothly. I think he was a bit disappointed to discover that he still had the NG tube up his nose, but this is normal practice until they are sure the op outcomes are satisfactory.
So ........ tomorrow no NG perhaps? :-)
As a bit of a distraction, this morning he was popped into the all singing-all dancing chair and all the ventilator bits were bolted on and he was taken for a quick outside visit!!!!!!!!
Not sure he was all that impressed but the sunshine and fresh air must have been great although probably a bit scary!
We arrived just after he had been brought back to the ward to be greeted by the Receptionist who said "hang on I'll just check whether Dougie is back from his walk".
Talk about dumbstruck!!
To-night he was a bit weary so we just sat, one doing hand holding duty and the other administering foot massage ... a sure way to get him to sleep.
We'll see what tomorrow brings ............
Iain
So ........ tomorrow no NG perhaps? :-)
As a bit of a distraction, this morning he was popped into the all singing-all dancing chair and all the ventilator bits were bolted on and he was taken for a quick outside visit!!!!!!!!
Not sure he was all that impressed but the sunshine and fresh air must have been great although probably a bit scary!
We arrived just after he had been brought back to the ward to be greeted by the Receptionist who said "hang on I'll just check whether Dougie is back from his walk".
Talk about dumbstruck!!
To-night he was a bit weary so we just sat, one doing hand holding duty and the other administering foot massage ... a sure way to get him to sleep.
We'll see what tomorrow brings ............
Iain
Tuesday 3 June 2008
... and a little bit more .....
Doug has had a reasonable couple of days although he is getting pretty restless during his waking hours. He has taken to working his way round until he's across the bed with his legs over one side and his head resting on the other :-) Looks odd, but I guess it must be comfortable ........
Unfortunately he has managed to dislodge his NG tube a couple of times (the feeding tube down the nose) and finds it both difficult and painful to have it replaced. Luckily he is scheduled to have his PEG fitted to-morrow (Wed 4th) between 1 and 2 pm which, after around 24 hours, will mean he no longer needs the NG tube.
His general strength continues to slowly improve and, whats most amazing, he manages to retain his sense of humour. His dietary input has been increased to support his greater activity.
Tomorrow afternoon he'll be recovering from the anisthetic/sedation used for the PEG op so, if you were planning to visit, either do so before 1 pm or postpone until Thursday.
Keep at it Dougie.
Iain
Unfortunately he has managed to dislodge his NG tube a couple of times (the feeding tube down the nose) and finds it both difficult and painful to have it replaced. Luckily he is scheduled to have his PEG fitted to-morrow (Wed 4th) between 1 and 2 pm which, after around 24 hours, will mean he no longer needs the NG tube.
His general strength continues to slowly improve and, whats most amazing, he manages to retain his sense of humour. His dietary input has been increased to support his greater activity.
Tomorrow afternoon he'll be recovering from the anisthetic/sedation used for the PEG op so, if you were planning to visit, either do so before 1 pm or postpone until Thursday.
Keep at it Dougie.
Iain
Friday 30 May 2008
And the progress continues ......
Doug has had a good couple of days with steady improvement in his breathing ..... he's now on the C-Pap ventilator with no added oxygen and appears to be doing well.
Unfortunately he has still not truly got rid of the chest infection so he's been put back on anti-biotics again.
However it does not seem to have affected his other improvements in mobility, co-ordination and spacial awareness.
The dreaded "V" has now become a stock in trade symbol to go with thumbs up, down and wagging, much to the amusement of the nurses!! I think we'll have to re-designate it as a "Vibes to Douglas" sign, even if only to avoid those not in the know from making wrong assumptions!!
Whether or not he goes down for his PEG feeding tube this coming Wednesday will depend largely on his breathing, so here's hoping allus good.
Last night he occupied a fair time playing right handed 'catch' with the night shift nurse using one of these grip improver balls. All very impressive really. Unfortunately he's become very adept at tossing it into the corner of the ward whereupon it disappears under one of the many cabinets!
Daytime he's been up in a chair but he's so active that staff find it difficult to maintain his position and spend a lot of time moving him back to where he should be. All good stuff though.
Keep it up Dougie :-) :-)
Iain
Unfortunately he has still not truly got rid of the chest infection so he's been put back on anti-biotics again.
However it does not seem to have affected his other improvements in mobility, co-ordination and spacial awareness.
The dreaded "V" has now become a stock in trade symbol to go with thumbs up, down and wagging, much to the amusement of the nurses!! I think we'll have to re-designate it as a "Vibes to Douglas" sign, even if only to avoid those not in the know from making wrong assumptions!!
Whether or not he goes down for his PEG feeding tube this coming Wednesday will depend largely on his breathing, so here's hoping allus good.
Last night he occupied a fair time playing right handed 'catch' with the night shift nurse using one of these grip improver balls. All very impressive really. Unfortunately he's become very adept at tossing it into the corner of the ward whereupon it disappears under one of the many cabinets!
Daytime he's been up in a chair but he's so active that staff find it difficult to maintain his position and spend a lot of time moving him back to where he should be. All good stuff though.
Keep it up Dougie :-) :-)
Iain
Tuesday 27 May 2008
Quiet Progress
It has been a relatively quiet couple of days with small but significant improvements in movement and co-ordination. Muscular movements are more positive and there has also been a considerable improvement in Dougies left eye condition. Unfortunately his eye had developed an ulcerated area due to incomplete closure of the eyelid which had allowed the eyeball to dry out. This was accompanied by a viral infection that has proved difficult to shift. However things do seem to be coming right.
He has definitely not lost his sense of humour! Kinda wonderous given what he has been through really! I wish I had such resilience.
He had been moved into the HDU (High Dependency Unit) - really just around the corner but a significant indication that his condition has become much more stable since it involves one nurse to two patients rather than the 1:1 of ICU.
His breathing steadily improves and over the next couple of days he'll be moved to an even lower level of external support from the ventilator (he's been on no added oxygen for a couple of days now and seems to have coped OK).
The neurological team are very, very happy with his progress - quite something compared to two weeks ago as the consultant said.
As for visiting ......... his ventilator changes will mean he will be very tired at some point during the day and may well sleep a lot. Given that, and remembering that it is still a HDU with lots of other very sick patients to be considered, I'm sure he'd love to see a few more well kent faces and something other than mom'n'pop chatter!!! But PLEASE ... keep it down to 2 late morning and two late afternoon as a maximum - there will be plenty of opportunity to visit in the future since recovery will be an extended process, so pace yourselves folks!!!!!!
Also do be prepared for the fact that medical requirements will always take priority so you may not actually see him at all (the waiting area can become very familiar after a wee while!!)
We routinely read out Blog and Facebook chat to him, so he's being kept in touch.
Iain (the Auld Yin ... getting aulder by the minute:-))
He has definitely not lost his sense of humour! Kinda wonderous given what he has been through really! I wish I had such resilience.
He had been moved into the HDU (High Dependency Unit) - really just around the corner but a significant indication that his condition has become much more stable since it involves one nurse to two patients rather than the 1:1 of ICU.
His breathing steadily improves and over the next couple of days he'll be moved to an even lower level of external support from the ventilator (he's been on no added oxygen for a couple of days now and seems to have coped OK).
The neurological team are very, very happy with his progress - quite something compared to two weeks ago as the consultant said.
As for visiting ......... his ventilator changes will mean he will be very tired at some point during the day and may well sleep a lot. Given that, and remembering that it is still a HDU with lots of other very sick patients to be considered, I'm sure he'd love to see a few more well kent faces and something other than mom'n'pop chatter!!! But PLEASE ... keep it down to 2 late morning and two late afternoon as a maximum - there will be plenty of opportunity to visit in the future since recovery will be an extended process, so pace yourselves folks!!!!!!
Also do be prepared for the fact that medical requirements will always take priority so you may not actually see him at all (the waiting area can become very familiar after a wee while!!)
We routinely read out Blog and Facebook chat to him, so he's being kept in touch.
Iain (the Auld Yin ... getting aulder by the minute:-))
Friday 23 May 2008
A whopee day .............
Well to-day was a real whopee day!! Dougie was up and about in a chair for the first time!!
OK, so it was a 'special' one (a bit like a super recliner) and he wasn't sitting bolt upright but never the less it was quite an achievement especially since he was on the BiPap ventilator breathing normal air (i.e. no added oxygen).
He spent a total of 4 hours in it, much to the surprise of the nursing staff who'd expected more like an hour by which time he'd be tired out. He was lifting his head off the back and moving his head around very well. In addition his right leg had developed enough thrust to shove the contraption across the floor ...... Go Dougie ... go !!!! He nearly wore me out acting as a thrust pad!
His left leg was also moving much more and, to top off a really good day, we got a somewhat shaky hand wave when we said goodnight!! Needless to say, our cup runneth over so to speak.
He's back on full ventilator for the night to rest but will revert to BiPap tomorrow .. and the chair of course, provided he's not too tired.
Mind you, seeing him sitting up really points out how much muscle loss there has been over the past month - it's not surprising that he gets tired moving.
He also has a long way to go in re-establishing co-ordination. He does seem to have mastered the 'thumb touches finger' test on his right hand although he had a little difficulty touching his little finger.
Whoopee indeed ..................... :-) :-) :-)
Iain
OK, so it was a 'special' one (a bit like a super recliner) and he wasn't sitting bolt upright but never the less it was quite an achievement especially since he was on the BiPap ventilator breathing normal air (i.e. no added oxygen).
He spent a total of 4 hours in it, much to the surprise of the nursing staff who'd expected more like an hour by which time he'd be tired out. He was lifting his head off the back and moving his head around very well. In addition his right leg had developed enough thrust to shove the contraption across the floor ...... Go Dougie ... go !!!! He nearly wore me out acting as a thrust pad!
His left leg was also moving much more and, to top off a really good day, we got a somewhat shaky hand wave when we said goodnight!! Needless to say, our cup runneth over so to speak.
He's back on full ventilator for the night to rest but will revert to BiPap tomorrow .. and the chair of course, provided he's not too tired.
Mind you, seeing him sitting up really points out how much muscle loss there has been over the past month - it's not surprising that he gets tired moving.
He also has a long way to go in re-establishing co-ordination. He does seem to have mastered the 'thumb touches finger' test on his right hand although he had a little difficulty touching his little finger.
Whoopee indeed ..................... :-) :-) :-)
Iain
Thursday 22 May 2008
One .. maybe two forward !
To-day Doug spent most of the morning dozing off after a somewhat disturbed night. However the good news is that he is now off the anti-biotic so it looks like the chest infection has cleared (please God).
Perhaps, as a result of this, he has been pretty active leg wise and his left leg is beginning to pick up again. His right could pedal for Scotland ... and it does seem like it is controlled activity and not just nerve spikes. His range of voluntary movements also seems to have got stronger - like moving his lower body on the bed - not quite inverse press-ups but getting there.
Veronica was in to see him to-day followed later by Anna and that must really have brightened his day :-) Must have ..... see Anna post on Facebook :-))
I'm not sure whether Nick and Heike made it in 'cause we missed the day shift nurse, so by the time we saw him this evening, he was in his 'just let me sleep' mode again ! Mind you he did respond pretty positively to DavyPs' "V" sign with a huge grin ............ really must find out what all that is about!!!
He's still in the full ventilator (24 hours) and, although is breathing seems much better, it still gallops away on occasion.
The Docs are saying that we should keep him quiet for a few more days yet to build up his reserves ready for the next round of physio and BiPap activity. It also seems likely that he'll get what is called a PEG 'installed' in the next week or so to enable the nose feeding tube to be dispensed with. The PEG is a direct tap into the stomach below the valve that prevents regurgitation and is a far better way to administer external feeding especially since Doug has been on a nose tube for over a month now. Jees ........ its hard to believe.
We really do appreciate all your help in this 'cause I know many of you would really like to visit. However think of it this way ..... the better his rest, the better his recovery rate.
We'd really like to see him move beyond ICU although I for one would really miss the marvelous care and attention he's getting and the re-assurance that it gives Sheena and I.
Iain
Perhaps, as a result of this, he has been pretty active leg wise and his left leg is beginning to pick up again. His right could pedal for Scotland ... and it does seem like it is controlled activity and not just nerve spikes. His range of voluntary movements also seems to have got stronger - like moving his lower body on the bed - not quite inverse press-ups but getting there.
Veronica was in to see him to-day followed later by Anna and that must really have brightened his day :-) Must have ..... see Anna post on Facebook :-))
I'm not sure whether Nick and Heike made it in 'cause we missed the day shift nurse, so by the time we saw him this evening, he was in his 'just let me sleep' mode again ! Mind you he did respond pretty positively to DavyPs' "V" sign with a huge grin ............ really must find out what all that is about!!!
He's still in the full ventilator (24 hours) and, although is breathing seems much better, it still gallops away on occasion.
The Docs are saying that we should keep him quiet for a few more days yet to build up his reserves ready for the next round of physio and BiPap activity. It also seems likely that he'll get what is called a PEG 'installed' in the next week or so to enable the nose feeding tube to be dispensed with. The PEG is a direct tap into the stomach below the valve that prevents regurgitation and is a far better way to administer external feeding especially since Doug has been on a nose tube for over a month now. Jees ........ its hard to believe.
We really do appreciate all your help in this 'cause I know many of you would really like to visit. However think of it this way ..... the better his rest, the better his recovery rate.
We'd really like to see him move beyond ICU although I for one would really miss the marvelous care and attention he's getting and the re-assurance that it gives Sheena and I.
Iain
Monday 19 May 2008
One forward .........
We've just been in to see Dougie and because of turning and settling for the night etc. only managed around 15 mins with him.
He is still battling the chest infection but was definitely looking better than earlier to-day. He spent the day on a B-Pak ventilator (I'm sure I've got the name wrong?) and was doing reasonably well although he was pretty tired by around tea time so he's back on full ventilator for the night.
His responses continue to strenghten and when we were there early afternoon he was really trying to stretch his back ... I guess lying still that long must give some aches and pains. His leg movements are getting bigger although predominantly on the right side and he gets a fair shove, enough to move his hips on the bed.
Keep it going Doug - we're so proud of you.
Iain (the Auld Yin)
He is still battling the chest infection but was definitely looking better than earlier to-day. He spent the day on a B-Pak ventilator (I'm sure I've got the name wrong?) and was doing reasonably well although he was pretty tired by around tea time so he's back on full ventilator for the night.
His responses continue to strenghten and when we were there early afternoon he was really trying to stretch his back ... I guess lying still that long must give some aches and pains. His leg movements are getting bigger although predominantly on the right side and he gets a fair shove, enough to move his hips on the bed.
Keep it going Doug - we're so proud of you.
Iain (the Auld Yin)
Saturday 17 May 2008
Three forward ..... two back
Dougie has been making good progress over the last couple of days that culminated in a positive right arm raise of the fore arm on two occasions, one with the pointy finger!! Needless to say everyone was overjoyed and when it was followed by a positive leg raise off the bed ........ well you can imagine the joy !!!!!!!!
Unfortunately his chest infection has made a re-appearance and so he's been put back on anti-biotics (the previous course stopped 4 days ago). The Docs say it is a hospital acquired infection and is sensitive to drug treatment. I do so hope they are right ..... Douglas just does not need this extra complication right now.
As a result of this his breathing has become less satisfactory again, but, despite this he was quite bright this afternoon when Kirsty and Anna were with him.
To-night he is on full ventilator and has been given a sleeping potion to try and ensure a good nights rest.
On balance he is still progressing, albeit slowly.
All of us can't thank you guys enough for your good wishes and positive thoughts. You have no idea how much it buoys us up on this roller coaster ride of emotions.
Iain
Unfortunately his chest infection has made a re-appearance and so he's been put back on anti-biotics (the previous course stopped 4 days ago). The Docs say it is a hospital acquired infection and is sensitive to drug treatment. I do so hope they are right ..... Douglas just does not need this extra complication right now.
As a result of this his breathing has become less satisfactory again, but, despite this he was quite bright this afternoon when Kirsty and Anna were with him.
To-night he is on full ventilator and has been given a sleeping potion to try and ensure a good nights rest.
On balance he is still progressing, albeit slowly.
All of us can't thank you guys enough for your good wishes and positive thoughts. You have no idea how much it buoys us up on this roller coaster ride of emotions.
Iain
Thursday 15 May 2008
Three forward ... one back ......... ever upward
Dougie was worked pretty hard over the last 48 hours having been free breathing the whole time. As a result he really was exhausted and the Docs decided to put him back on the full ventilator early this afternoon. The problem is that when he is tired his breathing rate goes up dramatically and each breath becomes very shallow. When we saw him earlier to-day he was still free breathing and looking alert but tired. This evening he certainly looked a bit more rested. I think there will be a slight change of tack with shorter free breathing periods and shorter full support periods.
He is progressing satisfactorily towards minimum drugs intervention, all of which is good.
In addition the range of his responses appears to be extending with nods and head shakes more evident.
Any downgrading of status (Intensive to High Dependency) really depends on this breathing issue so I do hope that together Doug and the team can get it sorted.
Sheena and I are going in late morning and staying till mid afternoon (off and on for rounds etc.) and then going back around 9.15ish to see him settled. It's so hard to come away .........
Iain
He is progressing satisfactorily towards minimum drugs intervention, all of which is good.
In addition the range of his responses appears to be extending with nods and head shakes more evident.
Any downgrading of status (Intensive to High Dependency) really depends on this breathing issue so I do hope that together Doug and the team can get it sorted.
Sheena and I are going in late morning and staying till mid afternoon (off and on for rounds etc.) and then going back around 9.15ish to see him settled. It's so hard to come away .........
Iain
Tuesday 13 May 2008
Progress continues .....
We have just been in to see Douglas and the slow improvement continues.
He has been changed to a C-Pak ventilator that essentially means he is free breathing and he appears to be tolerating it well but is having to work quite hard.
His responses continue to improve but I suspect he's getting a bit bolshie at the repeated requests to perform!!!
His lung infection continues to improve.
He'll be back on the full ventilator overnight to rest and then C-Pak again tomorrow.
He had a very nice nurse giving him a shampoo yesterday that involved a microwaveable shower cap affair and he looked as though he was really reveling in the head massage that went with it!!
Each little improvement is so very heart lightening that it's difficult to accept just how far we have all to go.
Keep the good vibes coming!
Iain
He has been changed to a C-Pak ventilator that essentially means he is free breathing and he appears to be tolerating it well but is having to work quite hard.
His responses continue to improve but I suspect he's getting a bit bolshie at the repeated requests to perform!!!
His lung infection continues to improve.
He'll be back on the full ventilator overnight to rest and then C-Pak again tomorrow.
He had a very nice nurse giving him a shampoo yesterday that involved a microwaveable shower cap affair and he looked as though he was really reveling in the head massage that went with it!!
Each little improvement is so very heart lightening that it's difficult to accept just how far we have all to go.
Keep the good vibes coming!
Iain
Sunday 11 May 2008
It's a slow process .........
Sheena and I have just been in to see Dougie.
The improvement in his lung condition continues although much more slowly than a couple of days ago. He continues to be weened off the ventilator but still has a way to go yet.
He had been worked pretty hard yesterday afternoon and evening and as a result he slept nearly all the time we were there. The lack of response was a bit disheartening but I guess its not surprising.
His gripping responses appear to be getting stronger.
All in all, a bit like the curates egg ..... good in parts.
Keep on fighting Doug.
The improvement in his lung condition continues although much more slowly than a couple of days ago. He continues to be weened off the ventilator but still has a way to go yet.
He had been worked pretty hard yesterday afternoon and evening and as a result he slept nearly all the time we were there. The lack of response was a bit disheartening but I guess its not surprising.
His gripping responses appear to be getting stronger.
All in all, a bit like the curates egg ..... good in parts.
Keep on fighting Doug.
Saturday 10 May 2008
Remarkable improvement!
Reposting Iain's entry from Facebook...
There has been some further improvement in Dougs condition in that he seems to be starting to get over his chest infection. This has always been a worry but there seems to have been a 'remarkable' improvement in the last 24 hours so at last the anti-biotic seems to be having an effect.He is also being weened off the ventilator and, so far, is tolerating it well. His physical responses appear undiminished ... very encouraging!It looks like the 'quiet' approach is beginning to pay off, but we'd like to continue with it for another 4 to 5 days yet to give as much chance for him to beat the chest infection as possible.I really do appreciate all your participation in this .... ; we'll be much happier, as will he, when he's fully off the ventilator and feeling comfortable.Many thanks for all your good wishes.
There has been some further improvement in Dougs condition in that he seems to be starting to get over his chest infection. This has always been a worry but there seems to have been a 'remarkable' improvement in the last 24 hours so at last the anti-biotic seems to be having an effect.He is also being weened off the ventilator and, so far, is tolerating it well. His physical responses appear undiminished ... very encouraging!It looks like the 'quiet' approach is beginning to pay off, but we'd like to continue with it for another 4 to 5 days yet to give as much chance for him to beat the chest infection as possible.I really do appreciate all your participation in this .... ; we'll be much happier, as will he, when he's fully off the ventilator and feeling comfortable.Many thanks for all your good wishes.
Friday 9 May 2008
Doug's update
I know that things have been quiet on the blog for a couple of days so here is a quick update.....
Doug has had an uncomfortable couple of days, but the basics seem pretty stable. He is still trying to shed the chest infection, and an eye infection too, but is still able to give squeeze responses and has wiggled a toe or two, on both sides of his body which is fantastic.
Last night we were told he had shown his tongue on request, so his Uncle Graham got excited and told him to poke his tongue out at his mum, which yielded a distinct grin. Its so great to know his sense of humour is there.
Onwards and upwards!
Doug has had an uncomfortable couple of days, but the basics seem pretty stable. He is still trying to shed the chest infection, and an eye infection too, but is still able to give squeeze responses and has wiggled a toe or two, on both sides of his body which is fantastic.
Last night we were told he had shown his tongue on request, so his Uncle Graham got excited and told him to poke his tongue out at his mum, which yielded a distinct grin. Its so great to know his sense of humour is there.
Onwards and upwards!
Wednesday 7 May 2008
Hi folks, this is the latest update on Dougie posted by his dad on the Facebook group ....
He appears to be holding his own and even progressing a bit in the last couple of days. His ability to grip with both hands, move feet and legs and respond to commands seems to be getting stronger which is absolutely great. He is still suffering from a persistent chest infection that is proving difficult to clear but the clinical signs were good enough that the Docs did not believe it necessary to do further inter-cranial pressure checks.
He remains on the critical list but progress does appear to be slowly upwards. We find it so difficult to accept the slow rate of progress despite having been well warned of this. His medical team are absolutely wonderful and what with that and the good wishes of all you folks ... he's a lucky lad really.
Visiting ... a further quite period whilst they assess their plan of campaign so I'm afraid it'll have to be good vibes in the meantime.
He appears to be holding his own and even progressing a bit in the last couple of days. His ability to grip with both hands, move feet and legs and respond to commands seems to be getting stronger which is absolutely great. He is still suffering from a persistent chest infection that is proving difficult to clear but the clinical signs were good enough that the Docs did not believe it necessary to do further inter-cranial pressure checks.
He remains on the critical list but progress does appear to be slowly upwards. We find it so difficult to accept the slow rate of progress despite having been well warned of this. His medical team are absolutely wonderful and what with that and the good wishes of all you folks ... he's a lucky lad really.
Visiting ... a further quite period whilst they assess their plan of campaign so I'm afraid it'll have to be good vibes in the meantime.
Sunday 4 May 2008
And to add to the joy ..........
Hi folks,
This morning (4th May) Dougie squeezed Sheenas' hand and repeated the trick for nurses and doctors!!
This was the first sign that he was coming out of the 'locked in' state that so worried us all and that was in contradiction to the lack of damage to the brain stem.
Tell you what, if the WRVS Cafe had sold champagne at breakfast time they'd have sold out this morning :-)
He has also started moving legs and feet on command and on his own.
However all this good news means that he has been descended upon by neurologists, physios and a multitude of specialists and, in consequence, is really tired out.
In oder to avoid interfering with the medical programe we have been asked to back off on visiting for at least a week to 10 days 'cause all the essential stuff is likely to exhaust him.
Regardless, it is all great news ...... well done Doug and keep up the good work.
Thanks to you all for your support and good wishes
Iain
This morning (4th May) Dougie squeezed Sheenas' hand and repeated the trick for nurses and doctors!!
This was the first sign that he was coming out of the 'locked in' state that so worried us all and that was in contradiction to the lack of damage to the brain stem.
Tell you what, if the WRVS Cafe had sold champagne at breakfast time they'd have sold out this morning :-)
He has also started moving legs and feet on command and on his own.
However all this good news means that he has been descended upon by neurologists, physios and a multitude of specialists and, in consequence, is really tired out.
In oder to avoid interfering with the medical programe we have been asked to back off on visiting for at least a week to 10 days 'cause all the essential stuff is likely to exhaust him.
Regardless, it is all great news ...... well done Doug and keep up the good work.
Thanks to you all for your support and good wishes
Iain
Saturday 3 May 2008
MRI results
Late last night we got some preliminary results back from the MRI scan. The scan confirmed there is damage to Doug's cerebellum and also showed some damage to the temporal lobe. However the brain stem is "largely unaffected". This is good news, as we had feared that there was brain-stem damage given last week's diagnosis of locked-in syndrome. It has left the doctors puzzled as to why Doug is still locked-in however. We will have to wait until Tuesday for a review by the specialist neuro team.
Friday 2 May 2008
MRI
Doug has been moved to a new room - still in the ICU but now with a window. He had an MRI scan done this afternoon - an involved process as it requires switching him over to portable versions of his life support equipment and wheeling him, his bed and all of the paraphernalia to the scanner. He was put back on sedation for the scan and was still sleeping when we left. We are not likely to hear the results of the scan until tomorrow. They are unlikely to lead to a change to his treatment but they might shed some light on the reason for the initial stroke (which we still don't know) and give an indication of the extent of the brain damage.
Thursday 1 May 2008
The story to date ...
Hi folks ....
I'm Iain, the proud father of Douglas.
Many people have been inquiring as to the well being of Douglas so here is a brief (but somewhat rambling) summary of the way things stand to-day (30th April).
Ward 20 (ICU) Western General Hospital, Edinburgh.
After a very traumatic few days late last week when things did not look at all good, Douglas appears to have started on an upward trend.
He was breathing only with the aid of a ventilator on Sunday but, in the space of around 30 hours he was breathing on his own, supported by the ventilator which was tremendous news. To make him more comfortable he had a tracheostomy on Monday (28th) which allowed the tubes to be removed from his mouth and throat and also allowed the sedation level to be reduced to zero. Since then his breathing has greatly improved although, when he is tired, it still appears a bit laboured. His oxygen intake now approaches normal but he still has a slight temperature.
It's so good to seeing him look more like the old Douglas we all know and love.
He is able to respond to both voice and presence and is learning to communicate with eye signals and has very recently started to move his mouth as well.
Since Monday he has been bombarded with specialists (neuro, speach, physio etc) all looking for positive responses and, by to-day, he was looking very tired and somewhat pissed off at the world which is hardly surprising!
We have decided, on medical advice, to declare a halt to visitors other than immediate family and very close friends to give him time to rest although both we and he do most sincerely appreciate all the support that he has from his wide and varied circle of friends. Hummmm that doesn't look quite right somehow but I'm sure you understand what I mean.
As for the future ........ neither we nor the excellent medical staff really know the answer. We simply have to wait and see. This is the hardest thing for family and friends to bear - we'd all like to think that somehow there was a quick fix, but sadly that can not be. This is really very early in what will be a lengthy recovery period of recovery extending over at the very least 18 months so Douglas really needs all the love and support he can get. He has both youth, strength and very good physical fitness on his side which is more than many in his position have.
We shall try to keep posting as things progress but please do realise that it may not always be as positive as we would wish - it is a real roller coaster believe me.
With regard to visiting, whilst I'm sure he'd much rather listen to chat from his own generation I would ask that until at least the 4th May we all give him a period of rest. He'll be bombarded by specialists anyhow.
After that we'd really appreciate if visitors could be kept at around 4 folk per day 'cause not only must we avoid tiring Douglas out but we must also appreciate that he is in an Intensive Care Unit with some much less fortunate patients in the same facility.
When he is moved to HDU (and hopefully the Neuro Ward) things will change but that has yet to come.
Sorry for rambling on, but I did warn you!!
Both Douglas, his mother, Sheena, and I value most greatly the caring friendship of you all. Sheena and I would have found it almost impossible to keep postive without all your support and I feel certain Douglas both knows and understands all your best wishes.
Thank you.
Iain Moffatt
I'm Iain, the proud father of Douglas.
Many people have been inquiring as to the well being of Douglas so here is a brief (but somewhat rambling) summary of the way things stand to-day (30th April).
Ward 20 (ICU) Western General Hospital, Edinburgh.
After a very traumatic few days late last week when things did not look at all good, Douglas appears to have started on an upward trend.
He was breathing only with the aid of a ventilator on Sunday but, in the space of around 30 hours he was breathing on his own, supported by the ventilator which was tremendous news. To make him more comfortable he had a tracheostomy on Monday (28th) which allowed the tubes to be removed from his mouth and throat and also allowed the sedation level to be reduced to zero. Since then his breathing has greatly improved although, when he is tired, it still appears a bit laboured. His oxygen intake now approaches normal but he still has a slight temperature.
It's so good to seeing him look more like the old Douglas we all know and love.
He is able to respond to both voice and presence and is learning to communicate with eye signals and has very recently started to move his mouth as well.
Since Monday he has been bombarded with specialists (neuro, speach, physio etc) all looking for positive responses and, by to-day, he was looking very tired and somewhat pissed off at the world which is hardly surprising!
We have decided, on medical advice, to declare a halt to visitors other than immediate family and very close friends to give him time to rest although both we and he do most sincerely appreciate all the support that he has from his wide and varied circle of friends. Hummmm that doesn't look quite right somehow but I'm sure you understand what I mean.
As for the future ........ neither we nor the excellent medical staff really know the answer. We simply have to wait and see. This is the hardest thing for family and friends to bear - we'd all like to think that somehow there was a quick fix, but sadly that can not be. This is really very early in what will be a lengthy recovery period of recovery extending over at the very least 18 months so Douglas really needs all the love and support he can get. He has both youth, strength and very good physical fitness on his side which is more than many in his position have.
We shall try to keep posting as things progress but please do realise that it may not always be as positive as we would wish - it is a real roller coaster believe me.
With regard to visiting, whilst I'm sure he'd much rather listen to chat from his own generation I would ask that until at least the 4th May we all give him a period of rest. He'll be bombarded by specialists anyhow.
After that we'd really appreciate if visitors could be kept at around 4 folk per day 'cause not only must we avoid tiring Douglas out but we must also appreciate that he is in an Intensive Care Unit with some much less fortunate patients in the same facility.
When he is moved to HDU (and hopefully the Neuro Ward) things will change but that has yet to come.
Sorry for rambling on, but I did warn you!!
Both Douglas, his mother, Sheena, and I value most greatly the caring friendship of you all. Sheena and I would have found it almost impossible to keep postive without all your support and I feel certain Douglas both knows and understands all your best wishes.
Thank you.
Iain Moffatt
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