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The day had to come. When the nurse asked me to put on gloves because otherwise I would potentially infect other visitors and patients, I just left the room. He had just returned from his holidays, it was his first day back at work, and while he was getting ready to come into Pádraig’s isolation unit room with one of our favourite nurses he was telling her about the really red hot chilly peppered food he had tasted in Asia.

He was going to help her to wash Pádraig. She had very kindly allowed me to stay in the room. He lifted Pádraig’s leg and told “Sie” Herr Schäler to let him know in whatever way if he should feel uncomfortable. I listened in amazement. When he couldn’t find a place to leave the pillow, I offered to hold it. He then asked the other nurse what kind of bacteria Pádraig had, and when she said what it was, he turned to me and asked me, to my absolute amazement, to put on gloves – which is when I left. I tried to explain to him later that I had been in hospitals for the past six months and that this was our fourth ICU. He said there were rules. He called a doctor who confirmed, to be honest, not to my surprise, that there were, indeed, rules. He also said that if nobody over the past months, including the past week in the UKE, had asked us to put on gloves they had probably not noticed we were not wearing them. I got ready to call the German equivalent of the SUN Newspaper to report the discovery of a serious hygiene problem in the UKE. Then I remembered and pointed out that the bacteria were in a closed system (stomach) as they very well knew because of their tests, he said he couldn’t tell. When the nurse then said that while he had taken endless and repeated courses in how to disinfect his hands, I as a lay-person was not in the same position and, therefore, at risk. – I stopped right there and then, and looked for the hidden camera. The nurse told me he had printed out the hospital’s complaints procedure as well as the rules regarding hygiene for me. When I turned around he asked me should he also call the consultant. I waved ‘hello’ to the audience back home laughing their heads off at this really funny hospital episode, and went to do what I was there for: to see Pádraig.

AufseherI was not quick enough to tell him what I am going to give as feedback tomorrow: someone who’s mission in life is to watch that rules are always and uncompromisingly adhered to should get a job as a warden and work in a prison; if that didn’t suit he could always join the army and become a drill sergeant. Otherwise, and especially in complex and volatile hospital situations, rules need to  be applied to circumstances and in a courteous, respectful, informed, and caring manner.

handeWhat got me most was that this really sad person pushed me right to the edge. On the positive side, it was a useful experience and reminder that there are “solche und solche”, good ones and bad ones, like in every other profession. Thankfully, he did not push me over the edge, just very close to it. Next time, I’ll know better.

Pádraig was, again, better than the previous day. Less bloated, better markers, more alert. He reacted to the ‘good’ nurse when she told him she had now finished fixing him up – and she noticed the reaction and acknowledged it. (Although the ‘other’ nurse had asked for it, unfortunately he had no way to tell him to get lost.) They had clamped the other tube and will take an x-ray tomorrow to see whether his lung is ok without the vacuum. The plan is to get him back to Eilbek during the week. (Pat talked to the half-Irish consultant looking after Pádraig today and he confirmed to her that Eilbek is the best place in the north of Germany for early neuro rehab.)

Ich ruf es nach oben, der Himmel soll warten
Denn ich hab noch was vor, der Himmel muss warten
Wenn alles vorbei ist, nimm mir den Atem
Doch noch bleib ich hier, der Himmel soll warten 

 

Today’s German Music Tip
Sido (featuring Adel Tawil), Der Himmel soll warten. – I just like the title and the rhythm of the song.
What’s hot
Patients
What’s cold
Rules
The German word/phrase/verse of the day
Aufseher

Twitter: @forPadraig
#caringforPadraig
web: http://www.caringforPadraig.org

Not Taste

140104 40703

Hi, what´s up, easy, shopping, hamburger, cheeseburger, bye, fine, hot, hottest,  colour your life (SAT1), It´s fun (RTLII), funny, fun, business, account, happy, happy hour, anti-aging, center, office, butterfly, brainstorming, call-center, career, catering, coming out, out of order, event, insider, just for fun, lifestyle, marketing, meeting — Germans are surrounded by the English language.

140104 Not Taste

A button on the first floor of the UKE.

‘Not Taste’ was just another one of these anglicism, at first sight today. On a second sigh, or thought, however, I realized that this phrase actually referred to the button you press in case of emergency, when you are in “Not”. And ‘taste’ (food) did not have anything at all to to with ‘Taste’ I had passed by this button, went back to it to double check it, and almost gave in to the temptation to press it. Never in my life have I felt more like pressing the Not Taste.

Pádraig today continued to get better. Less drugs, less oxygenation, less mechanical interference. They took out one of the drains in his lung altogether. They will block off the other drainage tomorrow to see how well he’ll tolerates it. The physios were back in action and sat him up on the edge of his bed in the morning. They are talking about possible dates for a move back to Eilbek and the Schön-Klinik. All good.

The German Duo Rosenstolz have a song similar to the one from Kodaline, Brand New Day, that was mentioned on a comment earlier today:

Zieh mich tief zu Dir ins Wasser, hauch mir Leben ins Gesicht
keine Lust nur Luft zu atmen und ohne Dich da geht es nicht
Und jetzt stehn wir vor dem Abgrund woll’n den Boden nicht mehr spür’n
nur ein Schritt nach vorn zum Leben,egal wie es passiert

Perlentaucher – nimm mich mit auf Deine Reise
Perlentaucher – ganz egal wie tief
und wenn wir keine Luft mehr kriegen,
wenn die Wellen uns besiegen,
weiß ich doch wir hab’n die Perlen uns verdient

Whatever happens, er hat die Perlen sich verdient.

Today’s German Music Tip
Rosenstolz, Perlentaucher (1998). – AnNa R. and Peter Plate, alias Rosenstolz, were one of Pádraig’s favourite German bands in the late 90s and early 00’s. ‘Perlentaucher’ is one of their best known songs.
What’s hot
Defying physics and real life
What’s cold
Routine
The German word/phrase/verse of the day
Perlentaucher
Not Taste
Not am Mann

Twitter: @forPadraig
#caringforPadraig
web: http://www.caringforPadraig.org

Dream

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sailboatThe idea was to tie loads of big plastic bottles together so that the structure would eventually become large and strong enough to float, and carry a frame together with some passengers. During a few months that spring time our back garden became a makeshift shipyard. He wanted to sail away. In his own, home-made raft. There was an incredible determination to build this flboat, and a very strong believe that he just had to keep at this to make it all happen. Reasoning, planning, ‘real life’ issues, even physics – none of these really boring, ordinary life constraints stood in the way of his dream that was so much bigger than mere ‘real life’.

sailing dreamDo you also have your best dreams towards dawn? I can, when I’m really lucky, turn around and continue these early morning dreams should I get disturbed for a second, I feel I can manipulate them and they almost become reality. Last night, or rather this morning, I had one of these dreams. Pádraig and I had entered a boat race and we had built the boat ourselves. Of course, we had built it so well, there was no need to even float it before the day of the big race, never mind test-sail it. The day of the race I woke up early and thought I should get the boat down to the water to see whether it would float. It didn’t and I got it back to the house quickly before anyone else had noticed. A couple of hours later, Pádraig and I pulled the boat on a trailer down to the water, with family and friends joining us and wishing us the best of luck for the race. Pádraig was so excited (and I was so worried) when we pushed the boat into the water. Of course, the boat floated and we took off towards the starting line. – Although I tried really hard, at this point I could not ignore Pat anymore who was pulling me back into the ‘real world’, telling me it was time to get up. So I don’t know whether we won the race or not. But, after all, that wasn’t important at all. What was important is that Pádraig managed to make our ‘boat’ float – when I had almost sank it and drowned myself during my early-morning secret trial driven by last minute doubts.

Today, Pádraig was off the respirator and breathing by himself (assisted by a humidifier and oxygen) for several hours. He is still bloated from all the liquid his body absorbed during the SIRS, but getting back more and more to look like himself. They are considering the removal of one of the two drains. He is on the mend. For a few hours, during New Year’s Eve, I had a doubt – when Pádraig was just pushing out the boat far far away right to the starting line.

Today’s German Music Tip
Revolverheld, Das kann uns keiner nehmen (2013). – Watch the really cool dancing at 2m26s and the ‘Klingelmännchen’ at 3m55s. Also like the ‘Stop’ sign walk at 1m45s.
What’s hot
Dreams and Sailing
What’s cold
‘Real Life’
The German word/phrase/verse of the day
Klingelmännchen
“Die Stadt wird hell und wir trinken auf’s Leben”

Twitter: @forPadraig
#caringforPadraig
web: http://www.caringforPadraig.org

Don’t Look Back

No Direction Home, Don’t look back, I’m not There.

What life can do to you. Over New Year’s Eve.

Look outSomething that happens to loads of young, tall, slim males: a pneumothorax. Nothing to worry about. Small incision. Routine. Create a vacuum. Inflate the lung. Let it heal. Success. Only that when you try to disconnect the vacuum, the lung collapses again. Very rare. So you are more careful, do a few tricks. Then try to disconnect the vacuum again. When the lung collapses again, you know you have to operate. Very rare, but nothing to worry about. Small keyhole operation. Routine. Success. Only that the heart beat goes up, blood pressure down and a rage of other signs tell you that something is going wrong. There is a leak and 1.5l of blood in the lung cavity, with the drainage clogged. Very rare, but nothing to worry about. Routine. Just after midnight: operation. Close the leaks. Flush out the lung. Nothing to worry about. Routine. Early morning. Success. Only that there is this SIRS. Very rare. Probability .051%. Only that when you get it, you get it 100%. On the edge. 10l of liquids. Tons of transfusions. Drugs with no end. A night with no sleep. Getting better. Someone older. Someone less fit. Someone like you and I would not have made it. Routine?

Dont look back ppNext time, when I hear someone saying that there is nothing to worry about. That this is routine. Next time, when the nurse doesn’t mind that you stay the night. Next time when they bring in the fifth chair. Into an isolation unit. Where getting anything out again is next to impossible. Next time … I’ll expect the worst. Because next time, I won’t believe anything they’ll be telling me. Because if life decides that this 0.51% is you, a small percentage turns 100. In a split second.

I felt like No Direction Home. 2013: Don’t look back.

Today’s German Music Tip
Extrabreit, Hurra, hurra, die Schule brennt (1982). – The title is probably the best part of the song:)
What’s hot
2014
What’s cold
SIRS
The German word/phrase/verse of the day
Er ist über den Berg.

Twitter: @forPadraig
#caringforPadraig
web: http://www.caringforPadraig.org

2014

I’m so tired, I haven’t slept a wink. I’m so tired, my mind is on the blink. I wonder should I get up and fix myself a drink – No, no, no.

UKE - Corporate Charme

UKE – Corporate Charme

Last night, there was not time to write. Tonight, I am almost too tired. Monday night we spent in the hospital because we wanted to be with Pádraig when he came out of the operating theatre, following his second operation within 12 hours; last night, we spent in the hospital because he was in a very dangerous condition; tonight, we hope we’ll be able to sleep a bit better. Just rang the hospital and was told that Pádraig is in a stable condition and continues to fight the SIRS.

We are still trying to put together and understand what happened since Monday afternoon’s successful keyhole surgery. We were told the op was successful. That he continued to bleed internally was the indication for the second operation – no more keyhole this time, but an op on the open lung. That was also successful, we were told, early on Tuesday morning. That same

Vorsprung durch Technik

Vorsprung durch Technik

afternoon, we were told that he had developed a very serious, life-threatening condition called Systemic Inflammatory Response Syndrome (SIRS) that he was treated for. Later it turned out that they had diagnosed SIRS late on Monday night, before the second op. It also turned out that the drainage that was supposed to allow any blood from the lungs to evacuate was blocked and had lead to about 1.5l of blood filling up his left lung.

It took us a few minutes to realize that Pádraig’s condition was so serious that he could die. Today, he is not out of this condition yet but he has stabilized and is responding well to the medication they are using to help him fight the SIRS. It will most likely take another 2 or 3 days, before we can safely say that he is out of the immediate danger zone.

I’m so tired, I’m feeling so upset. Although I’m so tired I’ll have another cigarette and curse Sir Walter Raleigh: he was such a stupid git. (I really do feel like having a cigarette…)

Today’s German Music Tip
Trio, DaDaDa (1982).
What’s hot
Getting up after you were hit
What’s cold
New challenges with no time in between
The German word/phrase/verse of the day
Sylvester

Twitter: @forPadraig
#caringforPadraig
web: http://www.caringforPadraig.org

2013

Phone call at 2am. Off to the UKE. Pádraig needed another operation to stop bleeding in his lung. ‘Successful’. Came back at around lunch time to sleep for a couple of hours. Off to the UKE. Pádraig developed a serious SIRS (sepsis) which is being treated. Pat and I will stay the night with him, got a room, and will take turns. Just in to pick up a few things and off again to the UKE. I want to leave 2013 behind and see a new beginning tomorrow morning. – Over and out.

Credo

I believe

in laughter – the kind of infectious laughter that tsunamies through the crowd; the kind that brings tears to your eyes, makes you gasp for air, lets you loose all control, and allows you for seconds to forget about the misery of the world.

in good company – of friends that will go with you through thick and thin; of companions that will drink, dance, and sing with you until dawn; of apparent strangers that appear out of nowhere to pull you up when you’re down; company that makes you appreciate the beauty of the world and of life when you wonder what all this ‘being’ is for.

in justice – for the good and the bad; for the sinners and the saints; for the outcasts and the judges; for the rich and the poor; for the voiceless and the all mighty; for the shy and the extrovert; for those who hurt others and those who get hurt; for the “I” and the “We”; in justice that strikes when you least expect it.

in hope – for the hopeless, cases and people; the desperados, this side and the other side of the Rio Grande; for the sinners who want to become saints; for the hungry who want to eat; for the sick who want to get well; hope that gets stronger the more desperate the situation gets.

in time – that we spend with our friends, families, and fellow earthlings, with a lot of patience and tolerance; that we spend carefully as our most valuable asset – with the wind in our hair riding a motorbike, sailing on the ocean, running long-distance races, sitting on top of a mountain or the sea-side; that we invest in making ourselves and other people happy.

in life – with meaning that you cannot measure in dollars, euro, or any other currency; with compassion that will carry the most vulnerable and weak on its shoulders; with love that will make the world a better place; life that will never die, but continue in the hearts of the children of our generation’s children’s children…

We got a phone call from one of the surgeons when we were 10 minutes away from the UKE. She explained to me that, all in all, Pádraig’s operations had gone according to plan, and that he was on his way up to the ICU. When we arrived, we still had to wait for nearly 45 minutes before we were allowed in to see him. He had even more tubes attached to his body than before. It was one of those evenings where I asked myself how much more of this truly extraordinary life it was possible to take. The Stationsarzt came and explained to us how the operation had gone and how Pádraig had taken it: well enough, in a nutshell. When I said that this had probably been a very routing operation for them, he said yes, maybe the operation, but that Pádraig’s overall condition was anything but routine.

Even though I am tired, exhausted, doubtful, desperate, hurt – I believe and love.

Steadfastness

When I asked the shop assistant in the Apple shop what would happen when the battery got so old it could not be recharged anymore she saw right through my cover and instantly knew that I was from another galaxy. She did, however, pretend all was ok and faked a surprise laugh: “By that time, sir (!), you’ll probably want the brand new

UKE - Atrium has the feeling of a modern airport.

UKE – Atrium has the feeling of a modern airport.

iPod implant and this one won’t be any good to you anymore.” Seriously, who but aliens are daft enough to r-e-p-l-a-c-e a battery when everybody else is replacing the gadget? – IKEA is Apple for furniture. What used to be for life (and not just for one) has become a buy-use-and-throw-away-article in a flat pack. Printers have a build-in chip that tells them to stop functioning after a certain number of pages have been printed; nylon stockings were made to ‘run’; the piece of metal inside the light bulb that glows, a tungsten filament, could be made to last much longer than it does – but who would buy new bulbs then? Many people cannot concentrate for long enough to be able to read a book, most content on the internet is categorized as ‘perishable’: the moment it is published, it’s gone. The world comes in an endless stream of 140 characters. They say everything can be replaced…

A bit like Cape Cod Hospital - only that the UKE-Germans discreetly do not mention the amounts...

A bit like Cape Cod Hospital – only that the UKE-Germans discreetly do not mention the amounts…

… yet, every distance is not near. There are things that remain, cannot be replaced, and are steadfast. One of the most successful songs last year captured it very beautifully what happens in our ‘real life’ Wegwerfgesellschaft, very much along Joni Mitchell’s Big Yellow Taxi: “Well you only need the light when it’s burning low, only miss the sun when it starts to snow, only know you love her when you let her go, only know you’ve been high when you’re feeling low, only hate the road when you’re missing home.”

This afternoon, Pádraig was transferred to the Universitätsklinik Eppendorf (UKE), about 15 minutes’ drive from Eilbek. It’s one of Germany’s and undoubtedly Hamburg’s best hospital covering all disciplines (the Schön-Klinik is very good at rehab, for example, but it only offers cover for selected disciplines). The doctors in the Schön-Klinik in Eilbek wanted Pádraig to be treated by lung and thorax specialists. So he arrived at ICU number 4 (not counting the Beaumont high-dependency ward) at around 4pm. Again, it’s an isolation unit because he has not got rid of this multi-resistant bug he picked up somewhere along the way. And again, we had to get into gowns with OP mouth covers before we could see him. The gowns are quite upmarket, with different varieties for staff and visitors, as are some of the patients – we were told that it’s sometimes difficult to get information over the phone because staff is afraid of journalists posing as family members.

Vorsprung durch Technik

Vorsprung durch Technik

A doctor took some considerable time to talk as through a recent chest CT showing large bullae, thin walled balloon-like extensions or air sacs. They suspect that these bullae have ruptured and are responsible for Pádraig’s reoccurring pneumothorax. The plan is to remove the bullae by video-assisted thoracoscopic surgery (VATS), or key-hole surgery. They will then remove a very thin layer of his thorax lining that will, when it heals, form a permanent connection with the lung lining pressed against it by an artificial under pressure over a number of days. Apparently, it won’t have any impact on the functioning of his lungs but will, most likely, remove the possibility of a recurring pneumothorax.

They couldn’t give us a time for tomorrow as Pádraig will be the last person in the operation theatre (again, because of this multi-resistant bacteria he has in his stomach).

It’s a routine procedure that should be over and done with in about 30 minutes, if all goes according to plan. We very very much hope it will go according to plan and without complications, and that it will be successful. It would be great if he could leave this behind in 2013, and firmly, steadfastly continue on his road to rehab and recovery.

Today’s German Music Tip
Ideal, Monotonie (1982). – “Monotonie in der Südsee, bei 30 Grad” – what I’m dreaming of sometimes during these really dark, dull days between the years. One day. Our day will come.
What’s hot
Getting rid of bullae
What’s cold
Bullae
The German word/phrase/verse of the day
Wegwerfgesellschaft

Twitter: @forPadraig
#caringforPadraig
web: http://www.caringforPadraig.org

Schmetterling

Wer Schmetterlinge lachen hört… There is this joke – and I have been told by my family on several occasions not to try and tell a joke, at least not in English – about which language is the most elegant, romantic, and nicest-sounding. The Frenchman, of course, believes it is French and gives as an example the beautiful word ‘Papillon’ – papillon, how romantic is that! The Spaniard thinks that ‘mariposa’ – mariposa! is at least as beautiful. Butterfly, Butterfly! says the Englishman. Let your imagination loose! Then, the German stands up and schmetters out the most beautiful, elegant and forceful version of this word in any language: ‘Schmetterling’!!! Schmettttterrrling!!!!

Kanonenschläge with extra loud explosions - the Germans are getting ready to welcome the New Year with not just one, but millions of bangs!

Kanonenschläge with extra loud explosions – the Germans are getting ready to welcome the New Year with not just one, but millions of bangs!

Wer Schmetterlinge lachen hört, der weiß wie Wolken schmecken. Both of these things require quite a bit of imagination. Laughing Schmetterlings and Wolken, clouds, with a taste! As strange as it might sound, as many things in the 70s in fact did, this is what life is all about. The unexpected, the stuff that on the surface doesn’t make any sense, interpretations and approaches that don’t conform, that don’t take the ‘real world’ for real.

Thinking back six months ago, when I went into the ICU in Cape Cod Hospital and realized that this bad dream I had had, was real. The ‘real life’ then appeared over the next few days in the person of consultants and hospital social workers suggesting we should consider the worst. After Pádraig had taken the first available and suitable flight out of Cape Cod – a learjet paid for ‘ex gratia’ by his insurance company -, consultants in Beaumont talked about the uncertainty, about the first six months giving us an indication of how Pádraig would be doing long term. Now, his doctors are saying that young people like Pádraig have amazing potential and that we all have loads of time; at least until May. Today, I am thinking that I am not sure anymore about what the ‘real life’ is telling us. Whether what we see is the reality. Whether there isn’t a chance that Schmetterlinge really can laugh, or clouds really do have a taste.

Wer Schmetterlinge lachen hört… der weiß, dass er nichts weiß, wie alle anderen auch nichts wissen. Nur weiß er, was die andern und auch er selbst noch lernen müssen.

I’ve talked about the small, subtle differences that can make a huge difference. Today, I

Small things can make a huge difference and are an indication of the underlying value system.

Small things can make a huge difference and are an indication of the underlying value system.

discovered another one of these small differences in Pádraig’s room: several bottles containing liquids to clean out his mouth. They don’t cost much, but weren’t available in Beaumont; one example of care that was not available to long-term patients with ABI. In Beaumont, we were told several times by consultants that there was nothing that could be done for Pádraig – except to wait for his brain functions to improve. But, do patients loose their right to their physical integrity and dignity just because their brain functions are not as they should be? Is it ok to neglect patients and their bodies, until their brain functions recover? Is it really a waste of resources to do all that is required to care for patients, no matter whether their brain functions? Is it ok to accept physical damage like dropped feet, dislocated shoulders, and bed sores, never mind potentially broken or damaged teeth, an infected mouth, and other damage as not-so-important secondary, collateral damage – until the patients recover meaningful brain functions? What kind of value system does a society have that allows this to happen? Care (or rather: lack of care) for brain-damaged patients has a long and ‘difficult’ history, not least in Germany. That this difficult history is still throwing shadows into the presence in relation to the kind and level of care provided, at least the care that we experienced in Ireland (personally and provided to others), needs to be addressed and changed.

We visited my 90-year old mother today, and an 88-year old relative of my wider German family. They light candles, pray, and are full of hope for Pádraig. They have lived for too long to believe in the ‘real world’, they do believe in a reality beyond that of percentages, figures, or metrics. They escaped death more than once in their lives. And they are a tremendous example of how to be brave and remain full of hope in the face of some of the most difficult and horrible things that life can throw at you. This morning, I decided to learn from them.

Today’s German Music Tip
Novalis, Wer Schmetterlinge lachen hört (1973). Check out the lyrics here. The group took the name from the German romantic poet Novalis (1772-1801) and became famous in the mid 1970s in Germany – and very little beyond. They were a little like the German Pink Floyd. “Wer Schmetterlinge lachen hört” and “Sommerabend” were their most famous songs. I was one of their most devoted fans for two or three years, leading up to my Abitur (leaving cert).
What’s hot
Days getting longer
What’s cold
Being a victim
The German word/phrase/verse of the day
Der weiß, dass er nichts weiß, wie alle anderen auch nichts wissen. Nur weiß er, was die andern und auch er selbst noch lernen müssen. (Novalis)

Twitter: @forPadraig
#caringforPadraig
web: http://www.caringforPadraig.org

Six Months

Today at around 10am six months ago Pádraig was hit by a van when cycling on Route 6A on Cape Cod he has been in a coma since I was in Sanya on Hainan Island in the south of China when I received a call from Pat about three hours after the accident just before 1am local time someone had put it up on Facebook and we had thought it might have been one of those scams only that this time it was not I booked a flight packed my bags checked out of the hotel went to the airport had a phone call with a very good friend who was attending the same event I was leaving and travelled for the next 20 hours to Cape Cod Hospital it was the loneliest saddest trip of my life switching between a sense of reality and fiction what kept me going was the knowledge that we would all be together.

Today six months later we still are and always will be.