There’s a tale of two journeys.

The first journey was to and out of Cape Cod. We did not know whether Pádraig was going to survive the journey. But we had decided that whatever was going to happen, we needed to be at home with the people he loved, with his family and friends. That journey was almost bizarre: the failed attempts of fitting Pádraig into a Learjet that was obviously never meant to take a person as tall as him on a stretcher, the head in a helmet, taped to the stretcher, with Pat squeezed into the back with the polystyrene box filled with dried ice and a bone on her knees. Via Goose Bay and Keflavik to Dublin.

The second journey was on Monday, leaving the hospital. Pádraig was breathing on his own, without a tracheostomy. He can hear us, react to the world around him, tell us (with his tongue) whether he agrees or not. He can eat and drink. He is having a go at finding back his voice. He can stand vertically on a tilt table. Sit in his wheelchair. He smiles a funny stuff and gets annoyed when you wake him up in the morning.

He’s come a long way between these two journeys.

Today he had his first physiotherapy session at home. Tomorrow I hope to hear from a speech therapy clinic that I hope will be able to start working with Pádraig on his speech, his swallowing, and on the development of his muscles in and around his mouth. The days here are incredibly hectic and the place is still so disorganised. But it’s brilliant.

Pádraig is enjoying it. I’m still over the moon. Still so tired. But full of energy and hope. Still traveling! Still believing. Because Pádraig does, and this is leading the way!

Never thought about it that way: Pádraig is the essential traveller, isn’t he? A truly sensational traveller!

And yesterday was his big home coming.

Today, we went out onto *his* roof terrace, to see, feel, smell the snow that was falling in Hamburg.

There will be two new dates in his calendar, forever. The day his tracheostomy came out on Wednesday, 07 January. And the day, above all, the day he left the hospital on Monday, 19 January. After – well, many many days.

He’ll move on. In the good company of his friends and his family.

Today, a doctor told me that taking out his tracheostomy had been taking a risk and that it worked. Sure, what else is life?

Still out of breath. Still trying to understand what happened over the past days. It is, really, sensational. Wouldn’t you agree?

The most depressing day of the year, Blue Monday. Today.

Yet, it’s not for us. Most definitely not

We had an ambulance man telling Pádraig: “just a few more minutes and you’ll be home”. We had a nurse giving us hugs and wiping her tears away. We had an hospital assistant giving us an extra large portion of lunch.

Above all, we had Pádraig leaving the hospital and joining us in a new apartment that hasn’t even got bulbs connected in every room.

We had three nurses/helpers here today, together with a lady from a supplier who had organised all the stuff Pádraig needs every day.

Had I believed this was ever going to happen? – Pádraig did. He keeps going, believing that this will float like the Dreamboat did.

The most amazing thing is that he is right. Oxygen level: 100%. There is not a hint of a breathing difficulties to be seen. Heartbeat: 67. Couldn’t be more relaxed.

Glückwünsche Pádraig! You made it out of hospital. On the dreamboat!

The number of days Pádraig will have spent in hospital when he will be leaving the UKE tomorrow, if all goes according to plan.

This afternoon, I had this thought: did anyone order an ambulance to take him home? Probably quite a stupid thought, but it did occur to me…

I spent the afternoon trying to get the apartment set up for tomorrow. It’ll be fine, not perfect, but fine.

Pádraig is managing really well and, I think, better than I had thought without the tracheostomy. Hi oxygen is back up and his heart rate back down, very close to were it was before on good days. The thing is: if you’re not using a muscle it’ll disappear. I know that from running. It has to be the same with your trachea. With your tongue, and many more muscles we don’t even think about when we’re using them every day of our life.

That’s what Pádraig will have to do for the coming months:

It’ll be a really busy day. With loads of people calling in once he’ll have arrived, getting things going. It’ll be a real happy day. Unbelievable, really. It’s what we hoped for over such a long time.

I’m so tired. My back aches. Can’t wait to go to sleep. It’s hard to think or to write or to do anything meaningful.

Two nights to go. Noch zweimal schlafen.

After that, almost 19 months of a hospital stay will become a thing of the past.

With a lot of help and support, with nursing care, helpers, and therapists, we will learn how to live outside a hospital. Pádraig will be able to go out when the weather is fine. Out on a roof terrace and out onto the street. There will be no more mouth covers, no more protective gowns, and gloves just when they are really needed.

He will have a “standing bed” (though it’ll take a while to get that built and delivered), an exercise bike, a physio table. For the next months we’ll pretend that we’re in a training camp. I will go back running (well, jogging), Pádraig will go back exercising.

From time to time we measure Pádraig’s oxygen level and could observe how it was getting better every day after the operation, especially at times when we were doing exercises with him. So exercise is not only good to keep his arms, legs, and the rest of his body in shape but also good for breathing (as all of us who ‘run’ regularly know:).

It’ll be kind of like getting back your freedom.

Leo Varadkar is on Prime Time trying to explain the waiting lists in the Irish health system. In my mind, he has the most impossible job anyone could have: Irish Minister of Health – in a Government that is planning the next tax reduction in preparation for the next election. What a relieve when the battery of the laptop died and with it the connection with Prime Time.

Today, a lot of Pádraig’s stuff arrived in the new apartment. Tomorrow one of Padraigs friends, currently on a visit to see him, will keep him company and look after him, while the other friend will help me and Pat to mover our stuff from Dulsberg to Tonndorf.

The big news today is that he told a visiting chaplain that he is more of a Bell X1 fan than a U2 fan, by moving his tongue!

Pádraig’s therapy and treatment will continue when he’ll be with us. For us, it will be a great learning experience while receiving maximum support from carers, nurses, therapists, and doctors!

Going to sleep now to be ready for the big move tomorrow!

We got up at 6:15 this morning and at 6:30 our first lesson started with a specially trained nurse who trains family members who are planning to look after their family members. An hour and a half later, she gave as a 2+, which was a bit disappointing – I had aimed at a 1. But she was adamant that we could still learn and still do better.

Imagine that, a double one-to-one special nursing care training session at 6:30 in the morning. To be continued tomorrow at noon.

Today, we learned that Pádraig will not have to go back to the Schön-Klinik but that he will be discharged from here, the UKE, this coming Monday. Great news. It’ll save him and us another transfer, one for just a few days.

He is slowly recovering from the operation, starting to eat a bit again, a bit tired, but getting used to life without tracheostomy!

Above all, he is enjoying the visitor, two really nice friends from Dublin who are updating him on the latest news from Dublin. It was obvious from his face that he liked to hear all the news and all the gossip of was not just having fun

I’ll be in the new apartment tomorrow at 8 to take in the delivery of Pádraig’s ‘stuff’. It’ll be the beginning of our move into the new place where we will learn how to look after Pádraig with a lot of help, we hope, and where Pádraig will recover and get stronger, so that, eventually, he will not have to be close to these very specialised hospitals.

We still need to take this trip on the Dreamboat. We still need to go to Alaska.

 

No liquids. No food. All day.

Finally, it was his turn. His driver arrived and picked him up. Off they went at 15:20.

Just a few stitches.

And then nothing happened.

Even a few stitches take some time, especially when you get them under a general anaesthetics.

We should all be together celebrating our daughter’s birthday tonight.

The nurses’ desk hadn’t heard anything.

One hour, two hours, three hours, we got a bit nervous.

They told us, the operation had gone well and that he was in the wake-up room.

The wake-up room. Yes.

After four hours, they told us he was on his way back up to the ward.

The driver probably didn’t know the way and got lost. We got worried. Very.

At 20:03 both eventually arrived.

Back on the Sondenkost, with a bit of oxygen for the night, and a 30 degree elevated back for the night, to keep the head up, as the doctor ordered. Stitches will be removed in 10 days.

And a small, flat, white, innocent looking plaster on his neck.