Today’s Paper.

I’m rewinding, trying to remember yesterday.

There was us leaving Rosslare, driving to Dublin, arriving in the NRH, attending a long meeting with the team that is going to look after Pádraig in the NRH, going home to a building site, falling asleep as I was trying to write yesterday’s blog.

I couldn’t believe the amount of sausages I ate yesterday morning myself. And the rashers. And the black and white pudding. – There’s me preparing for the marathon, I thought. Pádraig had a great breakfast too. Than we packed our bags and went to check out and pay.

Which is when we were met by another incredibly generous gesture: Laura, Bill Kelly’s daughter told us that Bill had looked after the bill. Would you believe it?

The drive up to Dublin was relaxing, we were trying to imagine how it would be in the NRH.

There was a lovely welcome and people were incredibly nice. One of the therapists turned out to be an ‘old’ pal of Pádraig’s from swimming. You should have seen the huge smile on his face when they met!

When Maria arrived, there was even more joy – he didn’t stop smiling, he was so happy to see her. Having been away for such a long time, meeting her just on visits, was hard. All that is going to be over now.

Hospi-tales continue.

This morning I rang the ward and the nurses told me that he had had some difficulties breathing. They also had not yet given him breakfast. But a nurse put the phone to his ear and I could talk to him briefly which was great. As soon as the meeting with the builders was over, I made my way to the NRH.

I arrived at around noon and it turned out to be a long day. Actually, I am still sitting here beside his bed. Pat arrived half an hour ago, after work and after talking to Cromac on Raidio na Gaeltachta. It took here ages to drive across the city together with thousands of commuters, all at the same, wrong time.

On his bedside, there was an oxygen mask connected. I did not ask whether they had used it. He was on an oximetre measuring his oxygen saturation and his heart beat. He apparently had a slight temperature. Nothing to worry about (yet) but to be watched. They were talking about doing another endoscopic swallowing test (FEES) of which he had three over several months, starting a year ago. Just to be on the safe side. Apparently, he did not swallow well enough. Was a bit chesty. I gave him a high calorie drink which went down very well. Another eating assessment was  made which did not work out well enough to give him more food. I stopped the plan to give him peg food.

I’ll be here tomorrow morning at 8.30 to meet the therapist and give Pádraig the breakfast he has been eating for months.

Everybody here is really nice, caring and kind. Everybody has Pádraig’s best interest in their mind. But this is a hospital where there are procedures, ways of doing things, ways to assess things, ways to avoid any risks. He is not quite ‘home’ yet. The hops-tales continue…

But, at home and in the NRH, letters for Pádraig are arriving, welcoming him in Ireland and even sending him the most German of sweets, from Ireland. – And yes, they taste the same here as they do on the ‘continent’:)

And then, also in the post, also today, the tickets arrived. Concert tickets. For Pádraig’s first concert in years. I wonder will Kodaline remember?

I felt every bump in the road.

But the car was empty.

Pádraig is, for the first time in eight months, not with us. Early this afternoon, he experienced another very warm welcome in the National Rehabilitation Hospital (NRH) where he will stay until the Irish Health Service Authority will have assessed him for a home care package.

Meeting the builders tomorrow morning – that is if I’ll wake up in the morning!

Soooo tired tonight. Can’t write anymore tonight.

PS: Pádraig’s return to Ireland was shared by 1,530 views of the blog and pictures!

Loads of pictures today.

Yesterday, when the ferry was leaving Cherbourg, we went out for a walk on the deck of boat that would take us back to Ireland. It was a lovely, sunny afternoon. I could hardly believe that we had made it onto the boat and were now heading for Rosslare.

The three of us had dinner and went for an early night. I suppose we were trying to recover a bit from the long drive and the lack of sleep in the (in)famous Formula 1 Hotel. In comparison, the cabin on the ferry was pure luxury. Clean sheets. Good mattresses. No smell of cold cigarette smoke.

We caught a bit of the magic full moon over the dark, calm waters of the Channel and got up early to be ready to look out for the coast.

There is no better place to arrive in Ireland than Rosslare. It’s small, welcoming, and feels very homely.

When we finally left the ferry (we were the last car off) I heart some beeping and honking in the distance, but didn’t pay any attention. As we were driving through passport control and then customs, I thought I saw some balloons up in the air.

And then, when we got to the roundabout, just after all the police and customs checkpoints, there they were. In the middle of the roundabout.

It was truly unbelievable. About a dozen of his friends had taken a day off work, had not slept the previous night or had got up at 4am, and driven down to Rosslare to be there when their friend was coming back home.

Pádraig did not stop smiling! It must have been the best day for a long time for him!

We drove up to Kelly’s Hotel where Pat had just about managed to book a room for the three of us. All his friends came along and had the best ever breakfast. While we were still getting ready to get into the hotel and I was parking the car, a lady who just passed by handed over an envelope to one of Pádraig’s friends. It had a lovely card in it with some really nice wishes for Pádraig – and money with a note to say that it would hopefully buy us a nice ‘welcome Pádraig’ breakfast.

The card was just signed “S.” and I have no idea who this lovely lady was. I know she reads the block though – so: thank you very very much for your extremely kind words, your good wishes and your very welcome support for this morning’s breakfast!

In the hotel itself, there was an extremely helpful gentleman who arranged tables and breakfast for our group. He then said that he wanted to show me the room we were going to stay in – he though it might be a little small for Pádraig’s wheelchair. We went upstairs where he showed me a different room, indeed a fabulous room with a little balcony and a wonderful sea view! When I realised that this was Mr Kelly, I thanked him – and he said, “Bill” and not to worry about it. That it was a pleasure for him to be able to help

And then Joe Duffy rang and, schwupdiwup, I was talking live on Ireland’s most listened to radio show, Liveline. You can listen back to the interview here. Thank you, Joe, for your support and continuous follow-up.

There are so many more things I could continue to write about. But I am so tired. And so happy. What a day! What a journey!

Thank you to everyone who helped us to make this happen! There ain’t nothing like a Dreamboat. And there ain’t nothing but the Dreamboaters! Whatever you want. You can make it happen if you really want it. With the love and the energy of your friends!

No pictures tonight.

It’s really cool that this ferry has got internet while on sea, but while internet@sea is good for text-based stuff, it ain’t for pictures or anything that moves.

Almost to the day, 30 years ago, my extended German family boarded the St. Patrick ferry from Le Havre to Rosslare to visit Ireland for the first time, and to be at our wedding. Most of the people on that journey are no longer with us. My father, mother, sister, brother-in-law, grant aunt, aunt, uncle, my best friend – all gone. There are no ferries any longer from Le Havre to Ireland, you have to go to Cherbourg, are out in Normandie. The St. Patrick, of course, has long been decommissioned.

Just under two years ago, on 11 November 2013, a physio got up in the middle of the night in Dublin to go to work in Beaumont Hospital at 5am, to get Pádraig (and his lungs;) ready for the flight to Germany. Staff on the ward had really made a huge effort to prepare everything they could for that big journey. We were going to go for a few months to Germany to get him the early neuro rehab he would have had to wait for in Dublin for a year.

Yesterday, we just packed a few bags. Put everything into the car. Drove. Stayed overnight in the most basic sub-hostel level Formula ! hotel  (should be re-named ‘Formula 0’ – it’s so basic). Drove another few hours. Onto the ferry. Tomorrow morning when we’ll wake up we’ll be in Rosslare.

Pádraig is coming home.

We were away longer than we had ever imagined. Pádraig is physically ok. His level of awareness has increased. Most of the day, he is with us. He can move, intentionally, parts of his body, slow and not always. He has started to communicate using his tongue, his hands, his feet to ‘say’ “yes” or “no”.

A bit more than two years ago, doctors suggested organ donation. A bit less than two years ago, doctors were going to leave him in hospital for the foreseeable future. A bit more than half a year ago, doctors believed they could not help him anymore. They had destroyed his urinary tract, they were going to make his tracheostomy permanent, they foresaw processed PEG food to be his staple food.

Pádraig defied them all. Everyone single one of them. Pppphhhh! What do they know? In what do they believe? I bet you, they never tried to build a Dreamboat!?

We’ll have breakfast tomorrow morning in Rosslare. There’ll be a few friends who said they’ll be there to welcome him.

It’s been a long way from the ICU to him being walked across a room. To him pressing the button in his right hand for ‘yes’, in his left hand for ‘no’.

We’ll sort out a home care package with the HSE, show them, demonstrate to them how he is so much better off living at home than staying in a nursing home, how he has and will continue to improve with the right support, care and therapy.

Pádraig will get to their hearts and minds, he will change the way they look at severe acquired brain injury patients, and he will make it possible for other young people to live at home if they so wish.

An Saol. An Saol Nua.

(If Internet@Sea is possible, anything is! Right? 🙂

Of course, we did not make it on time. And when we did eventually make it, we had to return, because one of us had forgotten their passport.

But we did make it. We made it to to the most forgotten, middle of nowhere place with the most lost and forgotten Formula 1 hotel. Yes, you guessed it: we are in Plaisir, passed past Versailles.

We had dinner.

Pat wants me to make it clear, that this was my – not her – “dinner”.

I always thought that German TV would be hard to beat,  until now. I think we have France catching up…

We are definitely travelling budget.

No more Learjets 😦

More “normal” than this ain’t possible.

A bit less driving tomorrow.

Really looking forward to a great crossing to Ireland!

I’ve been walking by this sign every morning for the past days.

Im Lot

And I’ve been asking myself each time: who on earth is Lot?

This is our last night in Pforzheim for the time being. Earlier today, we said ‘good-bye’ to carers and therapists and friends we made over the weeks. We hope to stay in touch with them.

I also found out wha the German “Im Lot” means: all ok!

In the former East Germany, we were told the other day, many young people with brain damages were left in institutions, being looked after by the State. After reunification, these institutions were reorganised and the authorities tried to find the relatives and parents of these (formerly) young adults. In some cases, parents had not visited their children for many years. In some cases, parents could not be located.

There are friends and families who cannot cope with this new life.

It’s time to thank my family, our wider families, ours and Pádraig’s friends, who have given me, us, the strength and provided us with the support, who shared their love with us. None of this is “selbstverständlich”, a given.

Not only have they helped Pádraig and us now for more than two years to survive a terrible roller-coaster of previously un-imaginable events, they are helping us now to build a new life for Pádraig and for us.

More, they have offered their help to build An Saol to get to the hearts and minds of people, to affect change, to make sure nobody will ever be forgotten, just because one day they suffered a sudden, terrible injury.

Forgetting is not an option. Living is.

Pádraig welcomed Pat back with a big smile today. Really wide awake. When she told him she had booked a nice hotel room in Rosslare where we could rest for a day upon arrival in Ireland, he looked really happy. It’ll all be so nice!

We’ve started to take stock.

What is it that the six weeks here have achieved? What is the view of the professionals? How should Pádraig’s treatment continue?

During that review and our conversations, the co-owner of the Rehab Centre here said something that sums it all up very nicely in one sentence, stating the obvious but, as often, the obvious that is often completely overlooked

A brain injury is an injury, not an illness.

From that follows that what is needed, in essence, is not medication, but treatment of the injury – with the adequate care and therapy.

Treatment does not mean bringing patients into a state that they can be managed easily: leaving in tracheostomies, catheters, PEGs – they require less work and can be easily managed, but have huge side-effects such as infections, sense-deprevation, degeneration of organs, bodily functions; calming them down with medication – that deals with behavioural issues and reduces some risks (such as seizures), but makes it almost impossible to perceive correctly what is going on with their bodies and around them.

Treatment does mean helping patients to live their lives, perceive their bodies and their surroundings, use their senses, organs, and other bodily functions, recover and not dull down their brain functions. It means taking calculated risks. Risks we are taking every day. It means ‘living’. It means ‘life’. An Saol.

Based on Pádraig’s development since leaving the Schön-Klinik and the UKE, based on how he responded to the therapy, the picture is pretty clear. What needs to be done has become clear based on experience, not on speculation.

No medication, no PEG food, no tubes into the body.

Normal activities such as going out for walks, into museums, participating in events, going to concerts. Standing up, exploring all senses through experience, participating in life.

The therapies need to be continued on a regular and high frequency basis. No doubt. And being transferred into day-to-day living.

He will need to return at least twice a year to the intensive therapy sessions in Pforzheim for periods of six weeks.

He will need to be with his friends. He will need to go out. He will need to live his life to the full.

We will need the support of the Irish Health Service, for once, to make this happen. And we can demonstrate to them now that this is not a waste of resources.

Plans are developing.

We booked not just the ferry, but also a place to stay in Rosslare on Monday night. On Tuesday morning, we’ll be traveling to the NRH in Dun Laoghaire.

In the meantime, work here is continuing with Pádraig.

For the first time, he walked more than a kilometre in the Lokomat. And he tried out a new gadget. It shakes your two feet and legs and stimulates muscles and nerves.

As much as I wished for: tonight I cannot go on writing. I am too exhausted, but in a good way!

More tomorrow.

Ref No:77393725, Out:Cherbourg – Rosslare Sun 27/09/2015 15:45, Check
in at leat 45 minutes before departure. .  Tel UK 08447707070 or ROI
012047777