Regular followers of Paul’s blog will remember Charles’ description of how Dr Diem had the thankless task of explaining the extent of Paul’s very serious injuries after he had admitted him to the ICU back in February. Towards the end of March Paul was transferred to the neurological ward at Rankweil, where his progress has been accelerating, particularly during the last month - so Dr Diem has been completely out of the picture. Paul has been back in Feldkirch in the neurosurgical ward for the last fortnight so they can investigate his cerebral spinal fluid (CSF) leakage, so it was a dramatic moment when Penny spotted Dr Diem in the corridor and he popped in to see how Paul had progressed.
Like Dr Diem, I had not seen Paul since March (10th in my case), and I was full of trepidation that the reports of the changes could really be so profound. Last time I saw Paul he was lying, face expressionless, connected up to all the ICU monitoring paraphernalia and fed through a tube into his stomach. He could open one eye and it was very difficult to know what was going on in his mind, or whether he would ever walk again.
On Monday, when I entered the room he has shared with Steven (a lovely man of 35 who speaks good schoolboy English, recovering from an operation to remove a benign brain tumour) I saw immediately what dramatic improvements Paul has made …there he was sitting up in bed watching the French Open tennis, and greeting me with a smile. Wow!
Of course first impressions are important, but they can be simplistic, and I soon found that he is by no means his old self yet. Much more time will be needed, but the omens are very encouraging.
The exciting physical signs are that he can now get himself out of bed unaided, he can walk the few feet to the bathroom, do what he needs to do there, and return to bed. He is swallowing better, and he eats what looks to be well-prepared normal hospital food at the table in the window (although he isn’t always complimentary about more traditional Austrian dishes!). If you examine his head, you can see the left side has had a most severe biff: it is well dented and the left cheekbone, eye and socket pushed back – drops need to be inserted in the eye every hour and at night he has an elastoplast eye glass covering to keep it moist. The scar running from his left temple to the top of his head has healed really well, and when the hair grows back will be almost invisible, although probably uncomfortable if brushed.
As you can imagine, 15 weeks in a bed has left him very weak and he’s lost a lot of weight – he says that his 6 pack has been removed! Muscles have atrophied, and he tires quickly; two hours of one-to-one contact is enough. At the moment he is quite quiet and subdued, but will normally respond to direct questions and is able to makes his views known, but does not always engage with you, particularly in the morning. At the moment he doesn’t ask about people outside his hospital world, although he can tell you what is happening to the price of gold and copper!
His memory is also returning, particularly of the long term. I showed him a slide show on my laptop of our joint trip from Poole to Mull last year, which he said brought it all back – particularly video of dolphins swimming by the boat. Together we went through his diary and he wrote (fairly dodgy handwriting still!) in the dates of his visitors which I figured out from the blog: he has no recollection of anything between skiing in Lech the day before the accident until ‘waking up’ in Rankweil at the end of April, so was pleased to discover that so many people had come out here. His short term memory is less reliable and occasionally he confuses things, and comes out with some slightly ‘random’ statements – all apparently par for the course in brain injury.
He spends his time reading the paper (the FT is available daily in the town), watching CNN and Eurosport. He loves the many letters and cards from his friends – ‘post delivery’ is a bit like at prep school, the high point of the day. Penny brought out a DVD player and he loved Jamie’s video of Mull – the White House at bluebell time, featuring Jamie, Pen & Rory, Rualeyn and Carl.
The great concern for the neuro-surgical team at the moment is to try to get to grips with the continuing minor leakage of CSF. This has been the subject of investigation during the last fortnight and there is still ambiguity about the source and hence the best solution. This has led to a number of changes of plan, which has been very frustrating for them, for Paul, and particularly for Penny who has been put through a mincing machine of emotions. CSF leakage is worrying because it increases the danger of infection of the fluid the brain floats in, leading to meningitis.
Feldkirch life continues and people are preparing for the Festival later in June. The market place bubbles with life and Penny is becoming known – she was hailed in the street on two separate occasions by people she had come into contact with. The Alpenrose provides her with a safe haven and the staff treat her with affection. During this visit to the hospital I noticed that it is not only the NHS that is stretched: long queues in the outpatients in the morning, patients in beds parked in the corridors overnight due to overcrowding, nursing staff and doctors busy and feeling under stress. Paul’s room is spotlessly clean, and the food looks appetizing. And it makes a huge difference if someone else is there to stimulate communication as to what is going on and lift spirits.
So what was Dr Diem’s reaction to seeing Paul for the first time for two and a half months? He smiled with delight to shake hands with him as Paul sat in a wheel chair, but when Paul stood up and walked a few paces across the room he was visibly moved at Paul’s achievement. He turned to Penny and said “I can hardly believe it – you certainly made the right decision to keep him here”. For Paul this was the first time he had met the man who led the care with the medical team which has saved his life.
Moments of elation like this counteract the bleak days when things conspire to go wrong. Paul, with Penny’s support, is achieving great things, but patience will be needed in plenty to see it through.
Mike Palmer 4th June 2009
Saturday, June 6, 2009
Saturday, May 30, 2009
Half Term Has Nearly Finished
Paul has had a steady and stable week on the neurosurgical ward of Feldkirch Hospital. He has had various visitors, his brother Mark, Keith Falconer and Julian Taylor. This has been a huge boost for Paul.
The lumbar drainage was removed yesterday, Friday. The medical team plan to observe Paul over this coming week, and assess whether or not he has cerebal spinal fluid leakage. It is very much a wait and see situation. It is very important that they assess and conclude on all this before he can return to Rankweil Hospital.
I am returning to Austria on Tuesday. Will returns to Harrow to complete his GCSE's and Charlotte heads off to Bangkok on Sunday to meet up with friends for several weeks.
I continue to be deeply touched by the letters, cards, phone calls, text messages and e-mails that continue to arrive fourteen weeks on since Paul’s accident. I am able to read these and tell him about all of your messages, all of which are helping Paul come to terms with his situation. You have no idea how instrumental these all are in enabling us to move forward. Thank you xxx
xxx Penny xxx
The lumbar drainage was removed yesterday, Friday. The medical team plan to observe Paul over this coming week, and assess whether or not he has cerebal spinal fluid leakage. It is very much a wait and see situation. It is very important that they assess and conclude on all this before he can return to Rankweil Hospital.
I am returning to Austria on Tuesday. Will returns to Harrow to complete his GCSE's and Charlotte heads off to Bangkok on Sunday to meet up with friends for several weeks.
I continue to be deeply touched by the letters, cards, phone calls, text messages and e-mails that continue to arrive fourteen weeks on since Paul’s accident. I am able to read these and tell him about all of your messages, all of which are helping Paul come to terms with his situation. You have no idea how instrumental these all are in enabling us to move forward. Thank you xxx
xxx Penny xxx
Wednesday, May 27, 2009
My Trip to Feldkirch
It was with some trepidation that I set off for Feldkirch on 20th May 2009. A 6:00am flight from Heathrow and then a two hour train ride made it a very simple journey – but how would Paul be? Would he recognise me and would he want to see me? How bad would his facial damage be? Was I interfering? I had been following the blog and keeping in touch with Penny – but what was the reality?
Paul’s current position is as follows:
• He can get out of bed with help. He can walk like an old man – stooped and shuffling his feet in tiny steps. His balance is still precarious.
• He talks in a soft voice – sometimes in a very slow, measured way with very short sentences – sometimes with more fluency.
• His long term memory appears strong and normal. He asked after Lucy and said that he had recently seen my brother Christopher at Glasgow Airport. He said Christopher had been coming back from Islay, which was exactly right. However, his short term memory can be confused.
• He is interested in current affairs and spends a lot of time watching CNN business news. He can read slowly. Penny buys him the FT every day and I read him articles about M&S cutting its dividend and the US housing market.
• He has lost 20kg of weight and looks drawn. There is a huge scar that goes from one ear to the middle of his head. One eye is often covered with a patch.
However, one forgets the impact this terrible accident has had very quickly, and one just concentrates on the fact that this is the same Paul we have always known.
Medically the current problem is a cerebral leakage. If the current fix does not work, this may or may not involve another operation over the next two weeks. This leak needs to be sorted before he can be moved away from Feldkirch to a specialised rehabilitation clinic where the emphasis is on intensive physiotherapy.
Being around for 24 hours was an insight into hospital life – and how vital it is to have a helper to organise affairs. Wonderful as the nurses are, an extra person is needed to adjust the pillows, to get more food, to fill up the water glass and most importantly, to be involved in the decision making processes that arise every day.
Penny of course has been doing this role for 100 days now. It is relentless and full on. We have had descriptions of Penny in Napoleon mode and in Mrs Thatcher mode, but I saw her more in Florence Nightingale mode. Her care and devotion was deeply moving. The bond that exists between the two is mesmerising to watch.
Penny was so welcoming and Paul so pleased to see a familiar face – it was that of course, that made the whole visit wonderfully rewarding and uplifting. The accident was over three months ago and Paul has made astonishing progress from those early days that seemed so dark and held only slithers of hope. The current medical complication is typical of the many hurdles that line the way. He is still very vulnerable and infections remain a severe danger. There is a very long way to go for the whole Hilton Family – and Paul is recovering in his own time.
David Pease 23rd May 2009
Paul’s current position is as follows:
• He can get out of bed with help. He can walk like an old man – stooped and shuffling his feet in tiny steps. His balance is still precarious.
• He talks in a soft voice – sometimes in a very slow, measured way with very short sentences – sometimes with more fluency.
• His long term memory appears strong and normal. He asked after Lucy and said that he had recently seen my brother Christopher at Glasgow Airport. He said Christopher had been coming back from Islay, which was exactly right. However, his short term memory can be confused.
• He is interested in current affairs and spends a lot of time watching CNN business news. He can read slowly. Penny buys him the FT every day and I read him articles about M&S cutting its dividend and the US housing market.
• He has lost 20kg of weight and looks drawn. There is a huge scar that goes from one ear to the middle of his head. One eye is often covered with a patch.
However, one forgets the impact this terrible accident has had very quickly, and one just concentrates on the fact that this is the same Paul we have always known.
Medically the current problem is a cerebral leakage. If the current fix does not work, this may or may not involve another operation over the next two weeks. This leak needs to be sorted before he can be moved away from Feldkirch to a specialised rehabilitation clinic where the emphasis is on intensive physiotherapy.
Being around for 24 hours was an insight into hospital life – and how vital it is to have a helper to organise affairs. Wonderful as the nurses are, an extra person is needed to adjust the pillows, to get more food, to fill up the water glass and most importantly, to be involved in the decision making processes that arise every day.
Penny of course has been doing this role for 100 days now. It is relentless and full on. We have had descriptions of Penny in Napoleon mode and in Mrs Thatcher mode, but I saw her more in Florence Nightingale mode. Her care and devotion was deeply moving. The bond that exists between the two is mesmerising to watch.
Penny was so welcoming and Paul so pleased to see a familiar face – it was that of course, that made the whole visit wonderfully rewarding and uplifting. The accident was over three months ago and Paul has made astonishing progress from those early days that seemed so dark and held only slithers of hope. The current medical complication is typical of the many hurdles that line the way. He is still very vulnerable and infections remain a severe danger. There is a very long way to go for the whole Hilton Family – and Paul is recovering in his own time.
David Pease 23rd May 2009
Sunday, May 24, 2009
Penny Back in London 23 May
It is Half Term, and I am back in the UK. As you will see from Charles's update (below), the tough medical path Paul treads continues. He remains stable. He is back at Feldkirch Hospital in the Neurosurgical ward. His mail is delivered to him from Rankweil Hospital. The two hospitals are interlinked.
It was very hard having to return to London on Thursday. I felt comforted as he has a nice fellow roommate, Stephen, 37, who was kind, and speaks good English. He too has a medical challenge to face.
I am heading up to Mull tomorrow with Will. Charlotte goes off on her travels at the end of May. I return to Austria on Tuesday 2nd June.
This comes with much love and best wishes from us all, Penny, Paul, Charlotte & Will
23 May, 2009
It was very hard having to return to London on Thursday. I felt comforted as he has a nice fellow roommate, Stephen, 37, who was kind, and speaks good English. He too has a medical challenge to face.
I am heading up to Mull tomorrow with Will. Charlotte goes off on her travels at the end of May. I return to Austria on Tuesday 2nd June.
This comes with much love and best wishes from us all, Penny, Paul, Charlotte & Will
23 May, 2009
A Change of Plan
The medical team has spent the last few days trying to assess their next steps in Paul’s treatment. Earlier in the week, after careful consideration, they elected not to proceed with Paul’s planned surgery to stem a leak which leads to the loss of cerebral fluid. They decided to conduct a series of additional tests to make sure the appropriate decisions could be made.
They undertook a lumbar puncture yesterday (Wednesday 20/05) with fluorescent dye and two nasal endoscopies in an attempt to narrow down the location of the fluid loss. There is now a clear view that this is not an ENT problem. After further consultation amongst the team of neurologists, ENT specialists and others responsible for his care following this battery of tests, they have now elected to proceed with another lumbar puncture and a drain for a week. This drain should reduce cerebral pressures and hopefully permit the leak to heal on its own. One’s sense is that the doctors are reluctant to see Paul undergo further surgery if other options are still to hand. Medicine is an iterative process. This is just one example.
All of this is very hard for Paul. He has been slightly unsettled by the events of the week and the cancellation of the intended surgery has not been easy for him, and of course this has been equally difficult for Penny who bears a large part of the burden with the medical team in helping Paul to understand next steps. This has been a tough few days for her.
Paul, of course, was transferred to the Feldkirch hospital on Monday and they plan to keep him under observation in their neurological ward for the next two weeks. This is best place for him at this time, given where we are. They really need to resolve this problem. Only then will they be able to start to consider and reflect on the next and appropriate rehabilitation steps and of course, the location for this next phase in his recovery.
William has his Harrow Speech Day this Saturday and Penny has flown out of Zurich to return to London today. I will be joining her for part of the proceedings before she heads home with William for the half term break. They plan to head to Mull which will be a welcome diversion. Charlotte has been in London and is busy planning a trip to the Far East which will be a welcome distraction as her gap year starts to draw to a close. University beckons in September/October.
As ever, Charles 21 May, 2009
They undertook a lumbar puncture yesterday (Wednesday 20/05) with fluorescent dye and two nasal endoscopies in an attempt to narrow down the location of the fluid loss. There is now a clear view that this is not an ENT problem. After further consultation amongst the team of neurologists, ENT specialists and others responsible for his care following this battery of tests, they have now elected to proceed with another lumbar puncture and a drain for a week. This drain should reduce cerebral pressures and hopefully permit the leak to heal on its own. One’s sense is that the doctors are reluctant to see Paul undergo further surgery if other options are still to hand. Medicine is an iterative process. This is just one example.
All of this is very hard for Paul. He has been slightly unsettled by the events of the week and the cancellation of the intended surgery has not been easy for him, and of course this has been equally difficult for Penny who bears a large part of the burden with the medical team in helping Paul to understand next steps. This has been a tough few days for her.
Paul, of course, was transferred to the Feldkirch hospital on Monday and they plan to keep him under observation in their neurological ward for the next two weeks. This is best place for him at this time, given where we are. They really need to resolve this problem. Only then will they be able to start to consider and reflect on the next and appropriate rehabilitation steps and of course, the location for this next phase in his recovery.
William has his Harrow Speech Day this Saturday and Penny has flown out of Zurich to return to London today. I will be joining her for part of the proceedings before she heads home with William for the half term break. They plan to head to Mull which will be a welcome diversion. Charlotte has been in London and is busy planning a trip to the Far East which will be a welcome distraction as her gap year starts to draw to a close. University beckons in September/October.
As ever, Charles 21 May, 2009
Friday, May 15, 2009
Penny Back in Austria
I wanted to bring everyone up to date with where we are with Paul. Another operation is scheduled for next week (~Tuesday). Paul has cerebral spinal fluid leakage. The medical team have been able to locate this. Along with the Neurosurgeon and the ENT surgeon, both of whom have operated on Paul before, and they have a plan to fix it. This will be his fourth operation since the accident, now 3 months ago.
This has been naturally an extremely anxious past 10 days.
Paul is making steady and stable progress. I am returning to London for Will's Harrow Speech Day and Half Term, most of which we will spend on Mull. It is very hard for me leaving Paul, but I know he is in excellent hands. It is important that I keep Will's and Charlotte's lives running as normally as is possible. Charlotte is getting on with her Gap Year and is going off on her travels at the end of May. This will be very good for her. Will continues to keep his head down with his GCSE's looming.
Paul loves getting his mail and, true to his personality, he is itching to get on and get out. I am trying to teach him two new concepts, 'Patience' and 'Time'. Not easy.
This comes with much love and best wishes and many thanks for all your continued love and support.
PENNY XX
This has been naturally an extremely anxious past 10 days.
Paul is making steady and stable progress. I am returning to London for Will's Harrow Speech Day and Half Term, most of which we will spend on Mull. It is very hard for me leaving Paul, but I know he is in excellent hands. It is important that I keep Will's and Charlotte's lives running as normally as is possible. Charlotte is getting on with her Gap Year and is going off on her travels at the end of May. This will be very good for her. Will continues to keep his head down with his GCSE's looming.
Paul loves getting his mail and, true to his personality, he is itching to get on and get out. I am trying to teach him two new concepts, 'Patience' and 'Time'. Not easy.
This comes with much love and best wishes and many thanks for all your continued love and support.
PENNY XX
Saturday, May 9, 2009
Update From Penny
The end of another week. Paul remains in the High Dependency Unit at Rankweil. He is steady and stable. Dr Elier is pleased with his progress to date. The post operative recovery from the skull reimplantion continues. He remains under very close observation as this recovery continues. This is still a critical period for him. It is one day at a time.
I am back in London for a couple of days and will be back in Austria on 13th May.
XX PENNY XX 08 May 2009
I am back in London for a couple of days and will be back in Austria on 13th May.
XX PENNY XX 08 May 2009
Howard's Reef !
I visited Paul 3 times over 2 days (1st and 2nd May) with Penny, on my way home from ski-touring Italy.
Paul was delighted to see Penny. She is really marvellous with Paul and she seems to have an endless supply of energy, such that I commented to her that I felt a bit like Margaret Thatcher's PA at times during my 2 day stay!
I shook Paul's hand and he had a firm grasp. I was surprised and delighted when he said, 'You've been in the Pyrenees?'. Penny had told him this the previous day. I told him a bit about what I had been doing. Among other quite brief exchanges, I talked about our impending trip to St Kilda at the end of May. Afterwards I did feel that perhaps I shouldn't have mentioned it due to his obvious inability to participate, but Penny assured me that any subject, that sparked interest, was worth discussing.
We visited twice the following day. It was too cold out side to do anything more than give Paul a change of scene from his ward and wheel him around inside the hospital, and we did manage a look at the beautiful cherry blossom in the gardens.
My overall impression was of Paul slowly 'waking up' from a very dark place. His improvement in awareness over the 2 days was really quite marked. There will be minefields to cross, and there will also be highs and lows. However, Paul's essential and unique character appears to be more or less intact.
I wanted to put together a DVD of life back home for Paul and perhaps repeat this every so often, (say monthly). Thus I hope to film activity at The Whitehouse, puffins on the Treshnish Isles, fishing, and include clips from friends for example. I have the editing software and the camera, but I'd be grateful if people could e-mail me any video clips or photographs which might interest Paul. I can convert most formats so don't worry about the file type nor size (say up to 70mb). Paul adores watching The Salmon fishing DVD and I think would really appreciate visual news from home and friends. An idea would be for friends to record a brief greeting to Paul with some news! I can put it all together so please send in video clips and photographs to ulvahoward@aol.com
I said goodbye to Paul and suggested that we organise a fishing trip to 'Howard's Reef' (a good fishing spot near Iona) when he got home. He said 'Ok, next April!'
JAMIE HOWARD 03 May 2009
Paul was delighted to see Penny. She is really marvellous with Paul and she seems to have an endless supply of energy, such that I commented to her that I felt a bit like Margaret Thatcher's PA at times during my 2 day stay!
I shook Paul's hand and he had a firm grasp. I was surprised and delighted when he said, 'You've been in the Pyrenees?'. Penny had told him this the previous day. I told him a bit about what I had been doing. Among other quite brief exchanges, I talked about our impending trip to St Kilda at the end of May. Afterwards I did feel that perhaps I shouldn't have mentioned it due to his obvious inability to participate, but Penny assured me that any subject, that sparked interest, was worth discussing.
We visited twice the following day. It was too cold out side to do anything more than give Paul a change of scene from his ward and wheel him around inside the hospital, and we did manage a look at the beautiful cherry blossom in the gardens.
My overall impression was of Paul slowly 'waking up' from a very dark place. His improvement in awareness over the 2 days was really quite marked. There will be minefields to cross, and there will also be highs and lows. However, Paul's essential and unique character appears to be more or less intact.
I wanted to put together a DVD of life back home for Paul and perhaps repeat this every so often, (say monthly). Thus I hope to film activity at The Whitehouse, puffins on the Treshnish Isles, fishing, and include clips from friends for example. I have the editing software and the camera, but I'd be grateful if people could e-mail me any video clips or photographs which might interest Paul. I can convert most formats so don't worry about the file type nor size (say up to 70mb). Paul adores watching The Salmon fishing DVD and I think would really appreciate visual news from home and friends. An idea would be for friends to record a brief greeting to Paul with some news! I can put it all together so please send in video clips and photographs to ulvahoward@aol.com
I said goodbye to Paul and suggested that we organise a fishing trip to 'Howard's Reef' (a good fishing spot near Iona) when he got home. He said 'Ok, next April!'
JAMIE HOWARD 03 May 2009
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