I know that some of Pádraig’s friends were freezing cold in there; for me, walking into the hospital from the subtropical heat of Hyannis in July felt like a big  relief. The building was completely sealed and kept at a constant freezing temperature, compared to the hot humid air outside. Going in and out put you under serious risk of catching pneumonia – or a nasty cold at least. We were thinking of this today, nine months later, in the winter, in Hamburg, when we walked out of the cosy, warm UKE building into the freezing winter of northern Germany. The contrast couldn’t have been bigger, like hot ‘n cold.

In Hyannis, doctors and a social worker talked to us on several occasions about organ donation. Here, we are being told that it is impossible to make a prognosis, that we need a lot of patience, and that in the case of someone as young as Pádraig it will take at least a year before anything even close to a prognosis could be made.This is six months up from what we were told in Dublin. It seems that in the case of ABI at least, the Germans are trying harder. The contrast couldn’t be bigger, like hot ‘n cold.

They removed the last of the two drainages he had today and checked that his lung was alright. They will check again tomorrow morning and then start with the arrangements for a transfer back to the Schön-Klinik in Hamburg Eilbek. Pádraig today had a great nurse, as old as us, with 30 years experience and three kids. She was competent, caring, understanding and highly professional. What a difference that made to yesterday. In the morning, I had reminded myself of our priorities: changing the personalities of certain nurses or trying to reason with control freaks did not even figure.

This morning, Padraig received a packet from Colm Ó Snodaigh with his book Istigh sa Cheol, two other books (I won’t mention the titles:), and loads (probably all) of KILA’s  and Colm’s music on CD. (Seosamh added Ronán’s latest solo album to the mix before he left today.) What a nice present. Hamburg will soon become KILA land!

Going back to work will be hard. One colleague sent me a text today saying she hoped I got a bit of time to relax over the past few weeks. It’s like being stuck between hot ‘n cold to freely quote Katy Perry.

Listened to one of the songs from the early eighties again. What an innocent time this was.

Mit dir in der Südsee stehn in den Abendhimmel sehn
oh guter Mond am Firmament spür wie meine Sehnsucht brennt
oh komm Czigan spiel für uns allein
die Melodie brauch ich zum glücklich sein

Ich seh den Sternenhimmel Sternenhimmel Sternenhimmel oh oh
ich seh den Sternenhimmel Sternenhimmel Sternenhimmel oh oh

Today’s German Music Tip
Hubert Kah, Sternenhimmel (1982). ‘Neue Deutsche Welle’. When we were young. Observe the really cool dancing.
What’s hot
Life – it’s hot ‘n cold
What’s cold
Life – it’s hot ‘n cold
The German word/phrase/verse of the day
Sternenhimmel

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

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.

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
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web: http://www.caringforPadraig.org

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

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

Something 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?

Next 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

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

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

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
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web: http://www.caringforPadraig.org

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.

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.

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.

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…

… 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

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

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!

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.

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