Friday 10 February 2012

An Eye Update

As hoped Doug was discharged from Livingston St Johns last Sunday (5th Feb) and is safely resettled at home.

Douglas has now had all the staples removed from his head wound (if that's the correct term) - all 47 of them!! He asked the nurse if he could have them to take home. Why she said .... want to use them to staple my documents he said!!!! Now that is Douglas for you ........

He assures us all that removal was not at all painfull, thanks to the skill of nurse and her wonderful line of chat :-) I suspect both Sheena and I 'felt' it more !!

The healing process is now well under way although, unfortunately, a small part is weeping rather badly which means repeated dressing replacement and two weeks of a powerful anti-biotic. All a bit of a pain really.
We have daily visits by the District Nurse who does the dressing change. This is a great relief since, to us, any supturation looks dramatic and worrying and she can assess and evaluate much better.
Things are getting better day by day.


The important part, the eye, is fine and looking good and the specialist is very pleased. Doug goes back to see her in a couple of weeks.


To look at Doug now, aside from the head dressing, it is hard to believe that he has had such intrusive surgery to the head and face. I think we had all expected much more bruising and swelling - a tribute to the skill of the plastic surgeon I feel.


He has coped really well with the whole procedure and can still have a good crack about things like 'there are not many that have a tap in the heid' !
He also jokes about how difficult it is to bandage the head, especially from ear to ear! The nurses have come up with an ingenious solution to holding dressings in place! A pair of elasticated mesh pants over the head, with the leg openings knotted!!!! Keep this quiet ....... Doug will do me an injury if he hears it is public knowledge :-(
(Superman wore his underwear over his trousers ..... SuperDuper man wears them over his head - ho, ho, ho - yeah right!!!!)


In a couple of weeks I think he'll be able to get back to his gym exercises and his bike training but we'll just have to be a bit careful not to overdo it initially.


In the meantime he is looking forward to being able to wear his reading specs comfortably ..... a bit sore behind the ears right now ...... and being able to read using his Kobo ebook reader again. As he says, if it takes much longer, he'll have to start at the beginning of the book again!! Exageration I'm sure, but I can understand his frustration.
By the bye, the Kobo Reader is a wonderful thing for anyone who has problems reading conventional books because the font type and size can be tailored to that most suitable for the reader. We were able to find the right size and font using his laptop computer and then download them to the Reader.
Whether or not this was the intention of the Kobo software folk ... VERY WELL DONE. You have just made reading once again an enjoyable passtime for one young man.

Iain (the auld yin)

Thursday 26 January 2012

EYE to the front

As you will know if you've read the last post, Douglas has left eye problems and the long term prognosis was very poor. The Opthalmology doctor looking after him had, in mid 2011, identified a technique which, from trials in the USA, appeared to have a good possibility of significantly reducing the long term deterioration of the eye by restoring sensation to the eye ball.

After much discussion and debate, Doug decided that he wanted the procedure to be carried out and, in due course, a date was set for the 24th January 2012 in the Plastic Surgery department of St Johns Hospital, Livingston.

So, having had the Op., how are things going .................
The operation itself has been declared a success in that the surgical (plastic surgery) elements went smoothly and the nerve implant into his left eye ball was achieved with no evident problems. Unfortunately the whole operation lasted a lot longer than had been anticipated (9 and a half hours rather than 6).
As a consequence of this, Doug developed pressure sores on both buttocs and a really sore back.
As he says you go in to have your head opened up, and what hurts when its all done ....... your bum!!!
Seriously though this has been (and still is) a really painful aspect of his recovery, particularly since, in order to reduce post op swelling of his face and eye, he has had to lie in bed in a semi reclined position which puts increased pressure on lower back and bottom.
Regrettably he also developed quite serious congestion of his upper respiratory tract and to ease his breathing a more upright position is necessary.

So when we saw him on the evening of the op (Tuesday at about 10pm) he was still a bit woosy and not at all comfortable and as a result got no sleep that night.
The following night (Wednesday) was equally bad, despite frequent nebuliser applications to ease his breathing and a number of a pain killer meds. It was really quite upsetting to see him in such a distressed and painful condition - we felt so damned helpless.
Fortunately the Doctor managed to find a much more effective pain killer during the night and Doug did, at last, manage to get some rest.

When we visited to-day (Thursday) he seemed in much better spirits and, although the pressure sores were still painful, they appeared to be tolerable. During the day his catheter was removed, as was the venflon in his left arm. He appeared much more comfortable and despite being, as he put it, a bit antisocial, things seemed to be improving. It all went a bit downhill come late evening when, on going to bed, his breathing difficulties suddenly started and he became very distressed. However, after a nebuliser, a pain killer and a fair bit of position changing, he had settled more by the time we left at 9:30pm.

We have no clear indication of when he will be discharged although there was talk of Friday (to-morrow!) because surgically he has done really well. However there remain the breathing issues (we have no nebuliser facilities at home!) and the pressure sores (we don't have access to the appropriate strength of pain killer). Added to this, he would be sleeping on a conventional bed with no real adjustment for reclining.
So I think this is where we have to start thinking of our own health and well being..
Personally I think he will not be discharged before Saturday but ..........

As to the future -
He has wound running over the top of his head from left ear to right ear which has about 4 staples per inch of length! (and a rather peculiar hair do into the bargain!) These will have to come out in about 10 days and this will require a further hospital visit I guess.
He has an appointment Wednesday next week at the Eye Hospital with Jan Kerr, the opthalmology surgeon who was part of the operating team.

I guess, at some point we will have an appointment with his hair dresser (!!!!) to see what can be done to restore his good looks!

But seriously though, since this was the first ever operation of this type done in the UK, I guess he will be monitored frequently and his condition will be of great interest to the surgeons involved.

As regards the possibility of visiting ..........
I honestly think we must wait until he becomes much more comfortable in himself.
I have no idea just how long this may take although I hope it will not be long.
I shall use this Blog to keep you all advised. Of course, when Doug gets home he will be back on FaceBook and Hotmail just as soon as he can so keep the msgs coming but excuse answer delays please!

In the meantime Doug has asked me to thank everyone for their good wishes, their get well cards (all of which I am definitly going to keep safe :-) ) and their texts.
Personally I'd also like to add my sincere thanks. Dougs friendships are so important to his psycological well being ... enough said.

Watch this space for more ............................................

Iain (the auld yin!)

PS If anyone is interested I think I still have the web link to the medical journal papers describing the procedure. Just let me know if .......

Monday 11 April 2011

Rehabilitation is not just for Christmas ...........

It has been a LONG time since I posted anything on the Blog, so I'll try to update you all ..........
Douglas is now into year three of his post stroke rehabilitation and, despite how slowly improvements happen, improvements there have been!

A very significant improvement has been brought about by the incredible generosity of a multitude of friends who raised money (at the instigation of Annette and Steve Irvine of Alien Rock fame!!) to buy a 'proper' recumbent trike for him!!!!!!!!!! (pikkies on Facebook)
This quite amazing effort has had a quite amazing outcome! Douglas is now able, with a support rider, to get out and about on his own recumbent trike (an ICE 3 Sprint made by Inspired Cycle Engineering) This gives him so much pleasure ........ it's hard to describe. At long last he has the ability to be in control of his own environment! If he crashes (and he has done so on a couple of occasions, quite spectcularily) he has only himself to blame!
The important thing is that HE is in control ... he is NOT reliant on others (at least in the riding phase) to do things for him. Bike riding was such a great part of his pre-stroke life and this (to a degree) has been returned to him.
We (Douglas, Sheena and I) can never express adequate gratitude to all his friends for their generosity.

There have been a couple of backward steps in the rehab process mainly related to his left eye sight problems.
I do so wish that the medical team involved in his Intensive Care had appreciated the significance of the left side paralysis in relation to his eye condition. The inability to close the left eye in the early stages of the stroke led to ulceration of the cornea with the resulting adverse effect on his eye sight that remains a problem. Had this been truly recognised in the early stages of the stroke, perhaps all the subsequent eye operations and poor prognosis may have been avoided. (Eye lid closure for example)
Douglas has now had three operation in an attempt to correct his inability to fully close his left eye with only partial success. He still suffers from 'dry eye' where the effectiveness of the tear duct is hampered by the laxity of the facial muscles around the left eye. This has resulted in the need for 4 times per day application of eye lubrication to prevent ulceration of the cornea. The long term prognosis is however not good.
Thanks to the diligence of the eye surgeons a further procedure has been identified as being appropriate and, come the 11th May, we'll find whether or or not this is the best course of action.

Balance remains a problem unfortunately. Doug describes it as being drunk and standing with all your weight on your heels! Not the best of feelings .... This coupled with the slowness of response to muscle movements means that any corrective action is usually too late and exagerated (like a spasm). Walking unaided is impossible and, even with the support from a zimmer frame, is difficult and slow - a great source of distress and anger to Doug.

Throughout all this the most significant positive element has been the support of his pre-stroke friends.
It is impossible to properly thank all those who, by personal visits, by social invitations to evenings out or by email contacts, have maintained the close relationships that mean so much to Douglas. Such contacts maintain the link between what was and what is now possible and re-enforce the belief that past ambitions are perhaps not impossible.
Headways in Edinburgh have also made a very considerable contribution to this through their Befriending Scheme that matched Douglas up with a young chap (a volunteer) with very similar interests; a better match could not have been hoped for - ThomasH and Doug very quickly became close friends and meet socially on a regular basis outside the home environment.
My wife and I can never truly appreciate the importance of such issues to Douglas but we can see the beneficial effects on his well being on a daily basis.

Douglas has, contrary to earlier fears, developed a great interest in his physical well being and spends many hours devoted to physiotherapy both at home, at Headways (a Charity devoted to acquired brain injury patients) and in the local Gym (Drumbrae Leisure Centre - courtesy of Edinburgh City Council). This is so important in maintaining his physical strength especially given the neurological stroke damage he has suffered. I am not sure what he would do without such support and encouragement. The benefits on his mental well being are of course equally important.
It is however sad that such support services appear to be in such short supply in the NHS. Since so much effort is devoted to sustaining life, it is a shame that the quality of life saved is given so little attention once the crisis has passed.

Throughout all this a key area of concern remains ........ neither my wife nor I are getting any younger and what happens to Douglas when neither she nor I are able to support him is a continual worry to us. At 39 years of age he has many more years of life left than either my wife or I have. The way in which the state care provision is moving gives us no great hope for the future.
It is unfortunate that politicians seem unable to comprehend a time scale greater that the next election!! If they could they might appreciate what us commoners are faced with!
This raises an important question however, especially for parents of a disabled person. What happens to this person when we have gone?????
Aaaah now there is a question that we'd rather not contemplate.
None the less it a serious concern and one which is not honestly addressed by any of the many support agencies. This is especially true of the state agencies where help and assistance is so diversified - Disability Living Allowance (nothing to do with the ability to work) - Unemployment Benefit (or whatever is is now called) without which National Insurance credits (payments?) seem to be impossible ................................ etc etc.

Fortunately Douglas seems to have retained his sense of humour and his resilience for which I and Sheena are forever grateful.
I just hope that we can follow suit!!

Iain

Thursday 16 July 2009

PFO is now closed .....

Sorry for the delay in posting an update but things have been rather hectic recently.

Douglas went into the Royal Infirmary on the 8th July for closure of the PFO. As requested he was really zonked out for the whole procedure so remembers little of the whole affair!! Closure was done using the femoral vein to place a couple of wee umbrella like devices, one on each side of the hole.
According to the cardiologist, it was a straight forward op and all went very well with no complications.
Doug was back home by around 9pm the same day.
He will have a follow-up examination at the Western in around 3 weeks just to check that all is still OK.
Needless to say he is a very relieved young man! I think the PFO business was really weighing heavily on his mind and he is mightily relieved that it is all over. As he says ... no more excuses!!

He had an appointment with the eye man on the Friday and it was decided that since his left eye was not really self sustaining, it would be necessary to do a small op to insert a gold weight above the muscle in the upper eye lid. We all expected a lengthy delay but, on the following Monday he got an appointment for the procedure to be done on the Wednesday (15th).
Doug was a bit taken aback at the speed of the whole thing and was somewhat reluctant. However, on the day, it turned out that he knew the eye surgeon from his climbing days at Alien Rock!! Talk about a small world. She explained it all to him and, to our delight Douglas agreed.
He has now been renamed 'Man with the Golden Eye'! As he says it is wonderful to be able to close his left eye for the first time on 15 months.
Hopefully this will stabilise his eye condition and even lead to improvements.

Iain

Wednesday 24 June 2009

..... Back on a bike again !!!!!!!

Tuesday 23rd was a momentous day .............
Douglas went for his first bike ride since April 2008!!!!!
OK, so it was on a recumbent tricycle and definitely not up to his high standards but, hey, what a step forward :-)
Sheena and I took him out to Dalkeith where he and one of the Physios (Margot) borrowed a recumbent for a couple of hours to try it out and, much to our delight, off he went complete with brand new crash helmet, a birthday present from the guys and gals in the Coop.
They covered a couple of kliks including some short sections on the public highway, the rest being on a beautiful cycle path (part of the original Borders railway).


Needless to say Doug was all fired up about it and is planning for another outing next Tuesday if it can be arranged. The chap who lent the bike is quite willing to let us have short loans provided we can arrange transport from Dalkeith (and safe storage obviously).
Watch this space!!!

Iain

Monday 22 June 2009

... and as for the PFO ...

Douglas now has a date for closure of his PFO (hole in the heart) of the 8th July.
He will be in the New Royal Infirmary pretty much all day and, hopefully, will not have to stay in overnight.
Seems incredible really that such a procedure is now classed as 'minor' in the great scheme of things.
He appears to be fairly relaxed about it all and I think is secretly relieved that he will have one less thing to worry him.
We are not certain precisely which closure method is to be used although it will be done in the same way as fitting a Stent i.e. going into an artery in the groin and working up to the affected part of the heart.
Hopefully we'll find out more when we eventually get the actual letter from the surgeon (postal strikes etc. permitting).

So things they are a movin'

Iain

Friday 19 June 2009

Home Sweet Home ....

Well Doug has survived the first full week at home under the tender care of Mom and Pop!!!
It is great to have him home in familiar surroundings and to be able to resume a more normal life style.
Doug was rather concerned that it would be a case of 'out of sight - out of mind' where the rehab programme was concerned but in reality it has been quite the reverse!
We now have a well established schedule for each day that starts at around 7:30 am with breakfast closely followed by a wash and brush up session that can take us through to about 9:45.
He has a short rest period up to 11:00 am when he is taken in hand by the physios and OT's for around an hour of pretty intensive activity.
This is followed by another rest period then lunch.
We are trying to ensure that Doug gets a post prandial nap up to around 3pm and its then all hands on deck for the afternoon and evening of more domestic stuff.

Douglas is really doing very well indeed having acquired a new lease of energy and commitment with his discharge from the Astley. Of course it is still all too slow for him, but none the less he is progressing. Most notable is the improvement in his standing and mobility. He is now able to stand unaided (albeit a bit shaky for now) for periods in excess of a minute - and getting longer by the day too! This really helps his confidence in using the zimmer and and in particular in washing, dressing and using the toilet. As he said to me the other day, try doing all that with one hand, standing on one leg and you'll get an idea of how it feels! Needless to say I haven't taken him up on that - I've got trouble enough already :-)
Physio is also addressing co-ordination (hand and eye) issues and in improving Dougs use of his left hand which still tends to be 'forgotten' much of the time.
Doug is hoping that the OT's may be able to offer solutions to the vision issue when he is trying to read PC size screens and text. There appear to be some solutions available but whether or not they'll suit remains to be seen. In the meantime I'm acting as a somewhat inefficient secretary in this respect.
There does seem to be a very slow improvement in his ability to blink with the left eye although we still need to apply liquid tears as a lubricant four times per day and tape the eyelid shut over night. Not the best of situations but needs must when the devil drives.

Visiting friends have also added a new dimension and he has had several outings without M&P fussing around :-) I cannot express my thanks enough to his circle of friends who are such an important part of the support team and do so much to bolster Dougs spirits and help him back into the great outside world.

Needless to say we are all having to learn new ways of doing things around the house which is not helped by the fact that some of the 'essential' modifications have not yet happened (like a door on the downstairs toilet!!!!) Having said that, the City Council have been great in providing the mechanical bits and bobs like handrails at the front door and bannisters on the staircase. We are so fortunate in this respect.

As regards visiting ........ afternoons and early evenings are the ideal since it gives Doug a rest period after his rehab exercises in the late morning and time to have lunch. So I'd suggest 3pm onwards but if that's not suitable, just give me a ring and we'll see what we can do. We usually have tea at around 6pm.
For those who have tried finding us in Cammo ........ I've just painted up a new house number so you don't have to worry about trying to recognise car number plates or anything else!

Iain