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

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

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

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

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

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

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