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
Wednesday 30 July 2008
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
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