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

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

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

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

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

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

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

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

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

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

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

... 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