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
Wednesday, 9 July 2008
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
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