Yesterday, 20 years ago, Pádraig went to school for the first time. It was a really big day for all of us. Like everybody else, we took pictures of him in his uniform in front of the house – him putting up a brave face. It was also the day, and that’s another reason why we will never forget the day, that the IRA announced their first seize fire, marking the beginning of peace in the North of Ireland. Nie Wieder Krieg.

75 years ago today, Germany attacked Poland and, with it, the Second World War. It’s ironic that, today, the German parliament discussed sending arms into a war zone for the first time, at least officially, in Germany’s post-war history. “Nie Wieder Krieg” was the conviction I grew up with, too many people had died, there had been too much suffering – for nothing, nothing at all. The house we live in here in Hamburg, all the houses in the street, and all the streets in this part of town were completely destroyed in a fire storm. (Most of) you would probably not believe me if I told you that, in Dortmund, I used to play in bomb craters, their conic shape was perfect for speed cycling around at an angle. It’s one of these stories that made Pádraig turn his eyes to heaven and sigh – come on, tell us again…!

We had a good meeting with his new Oberarzt this afternoon, joined for the last few minutes by the Chefarzt from the ‘old’ ward (we previously really had not talked to, in a sit-down-around-the-table-kind-of-way). It was a really good meeting. We felt we were listened to and were getting some answers to a page full of questions we had prepared. The plan is to try drugs to stimulate Pádraig’s brain. I didn’t say it, and, to be honest, it’s really far to serious to even think about it, but – to me it all sounded very 60s and 70s like. So, they’re going to give him a drug to see what happens over a period of about 2-3 weeks, and then re-assess. It’s all very structured and we already have another formal appointment for our next meeting in three weeks’ time.

I thought I’d never see this again: CONDENSATION! Nie Wieder…

Things are still sorting themselves out in my head, the things that happened over the past year, also things we saw last week, above all the magnitude of what happened with Padraig. Different doctors and different practitioners giving us slightly different views of what should be done, how it should be done, and when it should be done. Aspects of it begin to feel like what happens at work: I ask a lot of questions, listen to a lot of people, and as I do so, I form my own opinion, and then follow my informed instinct, if such a thing exists. Only, that in this case so much depends on it, the whole situation is so hard to take, that my ears never stop ringing, my vision is getting blurred, my hair (the little that is left of it) is turning grey.

Many things have happened, I’ve heard and seen so many incredible things, that I keep thinking ‘Nie Wieder’, don’t look back, look into the future and make the best out of whatever is awaiting me, us, there. Nothing sounds easier, nothing is going to be harder to do.

Question: What led to the devastating state of the Romanian ‘orphan’ babies and young children? (You will remember the world-wide scandal some years ago, when they were found in a very bad metal and physical shape in several orphanages around Romania.)

Answer: Almost complete neglect and lack of meaningful stimuli. There brains were never challenged. They were left in cods on their own, receiving nothing but the most basic care.

Now, remember the discussion about whether it’s worthwhile providing therapy and neuro-rehab to patients with severe brain injuries? The thing about the lack of ‘return-on-investment’, the idea that treatment would be ‘wasted’ on these patients because ‘the brain heals itself‘ and that there was nothing you can do to support this healing process?

Here is an idea. A very lay-person-kind-of-an-idea. An idea that medical consultants, health economists and politicians should therefore find very easy to understand. No scientific study needed, no professors required.

If you leave someone without stimuli; if you leave them on their own; without regular and meaningful physical or mental stimulation; looking at the ceiling above them for hours, days, weeks, months, or years; if you don’t get them onto their feet; if you don’t talk to them; if you leave them on their own – THEIR BRAIN WILL DIE, not heal itself. Whatever potential for healing there is will disappear, go to sleep forever, shut down and stay shut down. In the best of circumstances, I would call that neglect, especially if you knowingly permit those abandoned to get physically and mentally injured (think bed sores, think dropped feet, think dislocated shoulders, think acquired spasticity, think …).

Yesterday, they took out what is standard procedure in an ICU: an IV entry, just in case they needed it. It was always in the way if you wanted to move Pádraig, and it was just another one of these ‘entry point’ we wanted to get rid of. He is stable enough now so it is no longer required.

It is really great to see how the nurses we have met so far on the new ward deal with Pádraig as a person – someone who understands, has opinions (they don’t know half of it), can communicate.

Here’s is another first: Up to just a few days ago, Pádraig was on a constant water and “Sondennahrung” (liquid food) drip. Day and night, water and nutrition was dripping nonstop into his stomach. Can you imagine the feeling? Not only would you forget how to chew and swallow food (even if you, theoretically, could do it), but you would forget how it feels to be thirsty or hungry. So, after more than a year – MORE THAN A YEAR – they stopped the liquid food during the night and they are not giving him water via the drip anymore at all, at all (with few exceptions), but via the PEG in larger amounts directly into the stomach. Another big step towards a bit of normality.

Pádraig also got a new physio who is doing magic stuff with him. One nurse described Pádraig’s reaction to this treatments as ‘bombastisch’! Pat told me ‘you have to see what he is doing to believe it’ – I can’t wait!

Please: keep voting for Hospi-tales on http://www.blogawardsireland.com/best-blog-post-2014/ – it’s still in an amazing 4th place, but you have to keep voting as often as you can (and ask your family, friends, enemies, and colleagues to do so as well) to keep it there or even improve it’s position!

Finally – if you are into sea swimming, don’t forget the brilliant fundraiser, the Sea Swim for Pádraig on 06 September!

Today’s German Music Tip
Adel Tawil, Zuhause (July 2014). – Zuhaus ist da, wo Deine Freunde sind…
What’s hot
Getting rid of entry points
What’s cold
Smoke screens set by the ‘experts’
The German word/phrase/verse of the day
Bombastisch

I don’t know where to start…

When we arrived today to see Pádraig, we asked as we always do, how he was doing. The nurse said all was ok, fine, with one exception: they had given him some Ibuprofen as his knee had been hurting him. His knee. His knee? Yes, Pádraig had told a nurse that his knee was hurting. He had told. A nurse. His knee was hurting.

How had he managed? -> Apparently, and through a process of elimination, the nurse and Pádraig had managed to have some super close ‘conversation’, using a combination of tongue and feet movements, identifying the pain in his knee!

Here are another few ‘firsts’:

Since yesterday, Pádraig is no longer on any monitoring equipment! No ECG, no more oxygen saturation levels taken round the clock! It is so so strange to see Pádraig without cables hanging on to him around the clock!

We went out. Alone. What a feeling.

What a day!

Second day at the airport. This time it’s evening, I am tired, overwhelmed, and exhausted, and I am waiting for the flight back to Hamburg. Pat went back last night and told me that she was told that Pádraig had had a good day, in fact a ‘bombastic’ day, when we were not there (how’s that possible, I ask myself:). But, of course, what a relieve it was for us that all went fine. There have been so many disasters, shocks and frights over the past months, out of nowhere, unannounced, that neither of us being with him, even the idea of neither of us being with him, if something should happen, made me almost physically sick. It’s probably hard to imagine, I know,  I wouldn’t have been able to imagine what it feels like up to last summer. Now this fear is a reality.

Yesterday’s visit with Pat to the Therapy Centre in Burgau was really worthwhile. It is an outstanding example of how a tragedy, the accident of a young woman, and the reaction of her father, changed the life of hundreds of people. 25 years ago, when the Centre opened, neuro-rehab was not something that was on the radar of the German Health System. Sounds familiar, doesn’t it? Burgau made a huge contribution to change the way people, politicians, and insurance companies looked at acquired brain injuries. Burgau proved that people with brain injuries did not belong into the ‘hospital for the incurables’, as they were called in England. Therapies were developed and treatment plans established that even today are seen as exemplary.

Today, I visited another centre, this time in Pforzheim, the Zentrum der Therapie. This is a private therapy centre. It’s run by a couple, both with many years of experience. This place is buzzing with activity and looks like as if it was constantly changing. The energy and enthusiasm of the two owners is visible anywhere. They offer periods of 3-6 weeks of really intensive therapy with daily sessions of up to six hours, supported by two or at times even three therapists per patient. They use the most modern equipment to mobilise patients, including patients with acquired brain injuries. Their centre attracts patients even from outside of Germany. It’s much smaller than Burgau and, in contrast to Burgau, they do not have any doctors and only very few nurses on their staff. All the emphasis here is on therapy and it is the therapists who are in charge.

Seeing, over the past two days, what is possible. Hearing the success stories of so many brain injured people who ‘normal’ hospitals had given up on and who doctors had written off. Knowing that this still needs to penetrate and trickle through the German system. Getting really sad and angry at the same time knowing that Ireland does not offer its brain injured people the necessary care and therapy – made me more determined than ever to work hard to make An Saol a reality. Will you join me?

We are at the airport. Our flight will be leaving in just over half an hour. It’s just after 6am.

Last night, we were wondering how we would ever make it to the airport that early. Drive and pay an expensive airport car park? Get an equally expensive taxi? – Turns out, there is an S-Bahn running every 15 minutes. At 4:55am. And it gets better. The coffee shop opens at 3:30am. In the S-Bahn station. And I had to wait a few minutes to get my coffee, because there were people in the queue ahead of me! Welcome to GermanyAM.

It’s the first day after exactly 9 months since the accident that Pádraig will not have any visitors. It’ll be for just one day and we explained to him that we would not be coming in. But to tell you the truth, we are pretty anxious. Nothing will be happening to him, I’m sure, and the staff in the hospital will be looking after him really well. But what a long day it will be for him. If you know Pádraig, you’ll know that he can get bored, really badly bored, even on a day that us merely mortals would have perceived as absolutely and completely exhausting.

Waiting for the flight to board, I was just checking what was going on on Twitter and saw that two really good friends did not trust me. Instead, they followed their own gut instinct and double-checked whether Hospi-tales had made it into the black list. Miraculously, it does.

Personal: http://www.blogawardsireland.com/best-personal-blog-short-list-2014/
Health: http://www.blogawardsireland.com/best-health-and-wellbeing-blog-short-list-2014/  

… The day is almost gone. What a day it was! We went to a rehab hospital in Burgau,  Bavaria, founded by a father whose daughter suffered a bad brain injury about 25 years ago. It’s one of the two houses senior doctors in the Schön-Klinik said we should look at! The staff of that neuro care and rehabilitation centre were exceptional in many different ways. They were truly inspiring and we will never be able to thank them enough!

I’m too tired to write a bit more about our visit, I’ll do that tomorrow!

We didn’t show Pádraig another ice bucket challenge gone wrong today. Instead, we really got double-lucky today.

Going out today in brand new stylish black trousers!

Today was one of those days when you feel that the summer is coming to an end. It was still warm, the sun was shining, but it was coming in low. There was an open day of some ward, with a jazz band playing, a BBQ, and soft drinks in front of Haus 2, the White House. A really nice therapist who knows Pádraig from the other ward came up and offered to go for a walk. It was so easy. Unbelievably easy. We were back in less than half an hour, plenty of time for Pádraig to listen to the music, smell the German pork sausages on the BBQ, and feel the wind on his face. It was brilliant.

The one with the pink border is what we have been using for months now, the one with the blue border is our proud new and so much more comfortable bigger sheet!

Another really nice person we got to know here on the new ward, a nurse, managed to organise a new lifter sheet for us. We had asked for a bigger one some months ago, but, apparently, the only one that was available at the time was the one he’d got. Today, we realised that it was a size ‘S’. The new one is size ‘XL’. It was so easy to organise this. Unbelievably easy. And it will make Pádraig’s transfer much more comfortable for him.

Tomorrow will be the first day that we will not be able to visit Pádraig, because Pat and I are going to see a rehab centre that a father set up when he couldn’t find a suitable centre for his daughter when she had suffered a very serious brain injury following a car accident, about 25 years ago. The centre now has 100 beds. It’ll be a very early start and Pat will come back in the evening, while I’ll visit another centre in the vicinity on Friday. We’re really looking forward to these visits. Initial contact with the people we are going to see has been very, very friendly and forthcoming.

A note on the Blog Awards – Hospi-tales didn’t make it into the short list in neither of the two categories it was nominated in, but one particular blog is still doing well with the public vote, keeping its fourth place thanks to all of you who regularly vote – please keep it going!

We got a smile from Pádraig today. A smile!

That’s after we showed him: ALS Ice Bucket Challenge Fail Teresina Bell

One of the people in the clip say that it’s not really funny. Mmmmhhh… But whether it is or whether it is not, would you agree that the best quote from that clip is: “Quick, where’s the ice?”

Germans are direct and, although they try at times, not so funny. (Never ask a German to tell a joke.) A German Chefarzt is even more direct (if that was possible). If you are Irish, or have lived long enough in Ireland to adapt (at least a little:), you wonder how them Germans work, inside. There was no beating around the bush during our meeting yesterday. What they proposed was a treatment based on different types of drugs that have the potential to heighten Pádraig’s level of alertness and responsiveness.

After yesterday’s more intense happenings, our first sit-down meeting with the Chefarzt and all, today was more relaxed. And, for the first time, a nurse came to us and asked whether we would like to go for a walk with Pádraig. What a nice thing to do! And when we returned from our short walk in the park, he asked us did we want to go out onto the roof top. Did we what? Of course, we did. And then his music therapist called by and said he was going to meet us tomorrow late afternoon for a walk with Pádraig ‘on the wild side’, i.e. in the park! A few really nice and helpful people all in the space of an hour. Brilliant.

Outside of his door, Pádraig now has a plan for his therapy sessions for the week. It’s great to see this and to get an idea of what is planned and for what time. We have asked for a meeting with his new therapy team and they will meet us early next week. They want to get to know Pádraig a little before they talk to us.

Well – have you been wondering whatever happened to the Dreamboat? Well, it’s steaming ahead with full power, says Maitiú. There have been many nights of recording and mixing, not just the Dreamboat song itself, but a few bonus tracks from Pádraig’s friends! So what’ll be released sometime soon (the release date is still a closely guarded secret) will be – do you believe it? – a full blown CD! Can’t wait!!!

Here is Maitiú’s full Dreamboat update:

Dia dhaoibh a cháirde. Tá Súil agam go bhfuil sibh ar fad go maith. Tá brón orm nach raibh mé i dteagmháil le tamail anuas, bhí mé thar lear ar fea píosa. Maith sibh ar fad leis an cupla lá taifead agus na cleachtaithe ar fad agus an obair ar fad a rinne sibh. Rinne sibhe éacht. Tá sé i gceist againn anois leanúint ar aghaidh agus críoch a chuir leis an tionscanamh. Ar an droch uair beidh orainn an launch a chuir siar go dtí mí Dheireadh Fomhair mar beidh mise as baile do Mhí Mean Fomhair ar fad agus ni bheidh sé reidh roimhe sin. An smaoineamh atá againn anois nó na daoine a chan no a sheinn ar an oíche ceol do Phádraig a thaifead chun tracks breise a chuir leis agus album iomlán a dhéanamh as. Sílim go mbeadh sé nios deise album iomlán a bheith ag Pádraig agus a chlann agus duine arbith a cheannaionn é in ionad amhrán amháin agus an dá dhán – freisin seans go dtabharfaidh daoine nios mó aigead má tá siad ag fáil album iomlán! Beidh mé i dteagmháil leis na ceoltóirí maidir le dátai inniu.

Tá mé ag dul go Electric Picnic Dé hAoine seo chugainn agus ansin beidh mé imithe don mhí so tá cupla rud le déanamh roimhe sin –

1. Tá piosa ealaionn amháin faighte againn go dti anois – tá sé go halainn ar fad. Is leor é seo mar tá rogha againn anois idir an piosa ealaion seo, an stensil a úsáideadh don facepaint gorm i rith an taifead, pictiúr de Phádraig(ceann an-dheas againn dó ag snámh) agus an pictiúr a d’úsáid Reinhard don Blog. Má tá smaointí ná piosai ealaíona ag duine ar bith eile seolaigí ar aghaidh iad roimh an tseachtain seo chugainn – beidh muid ag obair ar an dearadh go luath!

2. Caithfidh mé liosta a bhailiú de gach duine a raibh baint acu leis an t-amhrán. Ie. an féidir libh ar fad a rá liom cén páirt a ghlac sibh san amhrán, má chan tú, má bhí uirlis á sheinm, má bhí tú ag taifead 7srl…má tá tuairimí agaibh do na Thank You’s – inis dom chomh maith

3. Smaoineamh úr agam (díreach anois) – d’fhéadfadh muid t-léinte a dhéanamh chomh maith agus iad a dhíol! cad a cheapann sibh faoi seo?

Hi All you Dream Boaters! I’m very sorry I haven’t been in touch for the last while, I’ve been away and I’m sure most of you have been busy over the summer too. I’m excited to anounce that we will be putting the finishing touches to the project over the next week or so. Unfortunbately we will have to delay the launch of the song until October because I will be away for all of Septembre and we won’t have the song ready before then. The plan is to make an album out of it by adding more tracks including the amazing talent that was to be heard on the night of the Oiche Ceol do Phádraig – I think it woud be nicer for everyone to have a whole album to listen to while driving down the country, or stuck in traffic, or sitting in a dentist waiting room listening to you ipod, and specially for Pádraig and his family in Hamburg, rather than the song itself and the two poems, which would be over FAR too quick!
I’ll be in touch with all the ceoltóirí today!

I will be going to Electric Picnic next Friday and then I’ll be gone for the month so I’d like to have everything ready before then if possible, so here’s a few things to think about –

1. We have recieved one beautiful piece of art of a boat. This should really be enough as we have different options to choose from including the picture from the blog, the stensil we used for the face paint during the recording(Reinhard’s idea!) and a picture of Pádraig himself. (we have a lovely one of Pádraig swimming in the sea) If anyone has any other ideas or art work, send them on asap because we hope to have it all designed by next week!

2. I need to compile a list of everyone who had anything to do with the song – whether you sang, played an instrument, filmed, made tea etc send me an email with your role…this is for the credits. Also, if you have anyone in mind for the Thank Yous, let me know!

3. Just had an idea to make t-shirts and get them printed to sell – does anyone have any thoughts on this?

4. If I’m forgetting anything let me know!

Anyway, Go raibh míle maith agaibh ar fad – táim ag bualadh isteach go dtí an studio inniu chun meascadh a dhéanamh le Mark. Táim ag súil go mór leis!

Maitiú

Spooky.

We were driving out onto the road in Tating, when there was a ‘ding’ on Pat’s phone – a reminder.

That’s about the time it takes to drive from Tating to Hamburg. But where on earth did the message come from? Who knew that we might just be starting to drive to Hamburg and how did they find out? – This is the second time something spooky like this is happening to Pat, following Google’s birthday wishes on google.com.

Is someone following her? Where is Big Deartháir watching us? What is their next message going to be? Something like “Don’t forget to lock the door?”, or “Have you switched off the emersion?” (when she is in Dublin), or “Remember to open the windows for ‘Durchzug'” (when she is in Germany)?

We’ll keep you posted. – In other news…

We discovered that we moved up to the penthouse. There is a Lounge (and yes, they call it ‘Lounge’ in German:) with coffee, teas, and what not in a nice room with arm chairs and all. Just outside of Pádraig’s room is a little open lift for wheelchairs to move you up a meter or so to be able to – wait for it! – get out onto the sun deck. A Sun Deck! We could have gone out to get a bit of a tan!

There wasn’t that much sunshine today, but we went out anyway. We sat out on nice chairs in a sheltered corner to let Pádraig feel the wind in his hair and a few sun rays on his face, to listen to the dogs down in the park and the planes high up in the sky, until we felt a few drops on our face and decided it was time to go back in.

You wouldn’t believe what a difference 20, 25 minutes in the fresh air make!

And all of this literally just outside of his door! – The only thing missing were more people, a BBQ, cold drinks, and music. Brilliant.

Great Jacket!

Brilliant sun deck!

A bit windy – but still fine weather!

Tables, chairs, sun umbrellas…

Hopefully, this was the first of many days out in the fresh air! What a difference that would make! – And then, our for real walks, regularly!

The amazing thing is that afterwards he ate about half of a bowl of custard/semolina and stewed apple (Griespudding und Apfelmus for the Germans:). I think he really enjoyed the outing and the food. This must all be good!

POKER NIGHT – Thank you Brian and Niall for all your great work and enthusiasm organising the night. Thank you Brian for your report on what must have been a really enjoyable and fun evening!

Well what a night it was. Tournament didn’t actually end up going until 8.30pm, as we had a few late comes but it worth the wait! We’d 16 poker players in all…with each been given a starting stack of 10,000 chips. Blinds set at 50/100 meant everyone had 100 big blinds….more then enough to play around with!

1st Place: Advan Moorthy
2nd Place Niall Jackson
3rd Place: Brian Sexton

Worst beat = €20 in Hailo taxi credits
Best hand of the night: Laurentina ( Quad 2’s) €20 in Hailo taxi credits
First person out = Paul- €20 in Hailo taxi credits
Luckiest player = €20 in Hailo taxi credits

Today’s German Music Tip
Haftbefehl, Chabos wissen wer der Babo ist (Blockplatin 25.01.2013). More new German Rappen… as the name of the group suggests, this is not mainstream and surely not everybody’s taste, but they’ve pretty successful recently…
What’s hot
Going outside
What’s cold
Being outside:)
The German word/phrase/verse of the day
Penthouse

It’s late enough to carry the news about a fun night out in the Wishing Well. I know, I know, I know. Poker is not everybody’s cup of tea, but then, Hand auf’s Herz, have you ever seen someone playing poker drinking tea?

Brian and Niall organised an amazing night that would have been right down Pádraig’s lane – no doubt, he would have lost a fortune playing with the ‘pros’:) But – out of the the bottom of their hearts the ‘pros’ decided that it was pay back time. What an amazing idea, what an amazing night!

Thank you, Brian and Niall and all who turned up to loose money!

I hope you will believe me. But when I walked in to Pádraig’s room today, having been away for a couple of days, I really thought that he had improved quite a bit. He looked well, he ate well, and he reacted well. It’s the weekend and not much is happening over the weekend in the hospital, patients and therapist all take a break. I discovered that Pádraig’s room is right beside a roof top garden! With a bit of luck, we’ll be spending those last lazy summer evenings in fresh air, looking out over the roofs of Hamburg.

So – thank you to Brian and Niall and all of Pádraig’s friends who made it tonight to the Wishing Well!!! – Please do not forget the Sea Swim for Pádraig on 06 September!

And- please keep voting for this blog which has made it into 4th position for the best blog award!