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.

I’d never thought about it. At least not much. Have you? About water?

Well – if you’re living in Ireland, you just about might, but, largely: you open the tap and out it flows. You put a glass under the tap, wait until it’s full. You take it up to your mouth. You drink it. No big deal.

Today it day 4 post-tracheostomy time.

Pádraig gave it a go. Just a few days ago he was trying small sips of water, first with a spoon, then in very small quantities from a glass. He’d managed, but with difficulty.

Today, he finished a glass of water. (There were a few drops left a the bottom, but we won’t worry about them…) What a first!

It is really amazing to see the difference that the removal of the cannula has made to his ability to swallow. He’s getting breakfast (some creamy things like thick yoghurts), lunch (a hot meal), and dinner (another hot meal). He’s not finishing any of them – but neither would I: the quantities are humongeous. But he’s is really digging in and eats maybe up to half on what is on offer – it also depends a bit on what is on offer:)

We are still staying with him all the time. Especially when we turn him from one side to another, he always needs some time to adjust to the change, and before he find his breathing pattern again. We are learning how to help him with that. It can take a few minutes, but so far he’s always found it. Once he’s settled down and we found the best position for his head, all is well. It’ll take time for him to really get back to ‘normal’ breathing but with his head control (very very slowly but) improving, his full trachea being used again for breathing in, and breathing out, after a year and a half, with his swallowing not being interfered with by this plastic tube next ‘door’ in his trachea, with improved tasting and smelling, with all of this, Pádraig is taking a huge step towards connecting with the world and all its wonders (that we take for granted far too often) again. The past few days have been so amazing: to see the progress he is making, but also to be in a completely strange place, getting meals delivered to the door, leaving the trays outside in the “Schleuse”, the small room between Pádraig’s room and the outside world, where you put on your masks and stuff, looking out the window into other windows, seeing the rain and the storm passing over and, sometimes, into this small square that separates his room, his window, from all the other rooms, the other windows, the other patient, of whom we see shadows behind orange-coloured curtains, only sometimes a face, a bit of the furniture, the same as in Pádraig’s room.

Today, we made a list of what we need to get to the new apartment over the next week to be able to get him going. It’s a lot, it’ll be an incredibly busy week, it’ll be exciting and busy and I feel tired already, even if I don’t think about it. But it’ll be brilliant and amazing. And there will be the operation on Monday, stitching up what is left of the hole in his neck.

And then -if all goes well, and there is no reason why it shouldn’t, Pádraig will be living with us again in just nine days… after more than a year and a half.

And just a year ago, he was here in the UKE too. But how different that is from where he is today!

My head is spinning and tired as it hasn’t been for some time.

Pat and I slept in Pádraig’s room, with big echoes in my head of Cape Cod Hospital where staff were really accommodating and allowed us to be with Pádraig all day and all night. Just that this time we’re not half as worried, but full of hope and excitement, in a good way.

60 hours after decannulation, he is doing really well. He’s not yet safety over the hill, but he’s getting to the top.

Here is the plan: on Monday, he will have surgery to close the hole in his neck on the outside – it already closed by itself on the inside. On Thursday, most if not all of his ‘stuff’ will arrive at his and our new apartment, including lifter, bed, etc. We will get everything fixed up over the weekend. On Monday, he will move in with us – whether he wants to or not:)

There are a few questions about the days in between, but they’ll all be answered in good time, I’m sure.

In the meantime, several offices are helping us to organise 24 hour care for Pádraig at home. 24 hour care. Around the clock.

These past days have been the most un-nerving, the most stressful, but the most wonderful days in my life. Things are happening at lightning speed.

And Pádraig’s cannula is out of his trachea for 60 hours now. 60 hours.

You couldn’t believe how incredibly wonderful it is to hear him breathing in and out, in and out, in and out, during the night, calmly. And how incredibly wonderful it is *not* to hear the monitors, alarms, *not* to check the ‘vital parameters’ non-stop, worried. Worried? What about!

60 hours. The first 60 hours of many more to come!

Out.

Can’t believe it.

Back in UKE since 7am.

Will stay here with him for the next few days and nights.

It’ll take some time (and maybe some stitches on Monday) until we’ll know for sure but so far he can breathe ok with the hole in his neck closed of and the cannula removed. We didn’t expect that to happen at all. But we’re over the moon – and sooo tired.

So keep your fingers crossed, the candles burning, the prayers going, and your enthusiasm and energy floating up the stream. In the Dreamboat!

What happened today and how it all happened took my breath away. This has been one of the most amazing days of my life. If this all works out the way it looks, I’ll do something big. Any ideas?