571

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:

imagesIt’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.

Freedom

Two nights to go. Noch zweimal schlafen.

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

UnknownWith 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.

Days

Tags

, , ,

UnknownDays are different. Some are good, some are bad. Some are sunny, some are rainy. Some are busy, some are relaxed. Some are exciting, some are boring. (All are dangerous.)

Today I had a good, sunny, busy, and exciting day.

One of Pádraig’s friends who is here to visit was happy to give us a hand to move our stuff from the old apartment to the new apartment, while the other friend also on visit stayed with Pádraig and read out stories for him. At the end, we were running through Terminal 1 in Hamburg Airport to find the Aer Lingus check-in desk, just 5 minutes before closing time. We had not planned it that way, but we are so grateful they were here and were so kind to offer their help!

imagesWhen we arrived in Hamburg 14 months ago we had a bag each. Today, our stuff just about fitted into this van we had rented for the move. It brought back memories of IKEA flat packs (Lebst Du schon oder schraubst Du noch?) in the tiny Picanto and hours of trying to make millions of screws, dowels, and pieces of wood fit together.

“Noch dreimal Schlafen” my mother would have told me when I was small (the older you get the better your memory of the time you were young becomes).

Noch dreimal Schlafen and live will take another big turn. For Pádraig.

It will be a good, sunny, busy, and exciting day. For Pádraig and for all of us.

(I’m sitting beside Pádraig, with Pat on the other side of the bed, the window is wide open, and we’re relaxing and listening to the beautiful CD his friends brought for Pádraig, “Paper Clips”.)

Moving

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!

Sharing

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

UnknownI’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.

 

Learning

Tags

imagesHave you ever had a fear of leaving the space you’re in, step out of it, and face the world? If you haven’t, you’ve probably heard about it. It’s what people fear who lived in an institution and are about to leave it, because from now on, they will have to take charge of their own life, they will have to decide all those big and small every day things that had been decided for them in the institution. Feel, smell, see, wide open spaces. Instead of the roof terrace or the yard. Instead of long corridors with loads of doors to the left and the right. Instead of their 4mx3m room.

There are programmes that help people make the transition from the institution back to a self-determined life.

I feel as if we were on one of these programmes.

You probably wouldn’t believe my insecurity here when, all of a sudden, we could just walk onto the ward. No more ringing at the door. No more waiting for someone to say: “You’re allowed to come in”. No more gasping for air when someone asks “Who allowed you to come in outside of visiting hours?” No more cables attached to bodies. No more alarms ringing inside and outside the room when someone’s ‘vital signs’ drop below a value set by a doctor or a nurse. And the list goes on…

I just cannot imagine what this must feel for Pádraig. – He is recovering really well. Breathing without oxygen all afternoon and evening. I know that there were a few coincidences, but I also know that there were a few very courageous people out there who took the chance, believed in Pádraig, and who boarded the Dreamboat.

Today, a nurse working on a ‘family support project’ at the UKE came in and offered her help to get ready for the big day. We’ll get a hands-on course over the coming days to get ready for the big day. And we were given a 2015 UKE calendar with several 3-day periods marked when family members can assist free carers’ courses in the UKE. We keep learning.

Plaster

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.

Weg

Tags

, , ,

images“Weg” is a really interesting German word.

It’s a bit like Chinese – depending on how you pronounce it or make it sound, it means different things.

If you pronounce it ‘vague’ it means ‘way’ or ‘path’, whereas if you pronounce it ‘veck’ it means ‘gone’. You can see the connection between the two words –

Well, today we went ‘veck’. It almost felt like abandoning Pádraig. Not one of us, the two of us left the hospital. Two nurses had come in and told us, in their really nice but firm way, to ‘get lost’ for a bit, catch a breath of fresh air, and go ‘die Füße vertreten’ (‘stretch our legs’ – funny how it’s ‘feet’ in German and ‘legs’ in English).

Pádraig had been really good during the night. Even when we turned him in the middle of the night, when he usually takes a bit of time to settle back down, he had no problems whatsoever. By now, we knew the nurses a bit, and the nurses know Pádraig.

So we left the ward and looked for the way down to the ground floor.

Big signs to the elevator. No visible signs to the stairs. Just the emergency exit signs. No encouraging here to ‘stretch your legs’ or ‘Füße’ vertreten. – When we had walked downstairs and I turned around to see how I would find the stairs back up again, it was even more difficult: you had to go into the Blood Transfusion section and from there take a side door… incredible.

So I walked Pat to the car. She wanted to do some washing and then start to pack our stuff for the big move. We agreed. I should go straight back to the Pádraig.

When I got back to the room, Pádraig had been washed, the nurses had changed the bed linen, and they had positioned him very very comfortably on his side, breathing great, no bother. It was really good and re-assuring to see that he had been good enough to get trough  all this, which is hard work for him, with the help of the nurses.

Then my phone rang and Pat told me that her key would not open the door to our apartment anymore. – Three hours later, I had been at the apartment, called an emergency locksmith, and had waited in the cold hall of our apartment building for him to open the door. I had expected what you can see every night on the telly: a few sophisticated tools, a try or two to find the right implements, and then ‘click’ when the door opened. Instead, it tool a full hour with drill, ‘pulls’ and what not. Really, really noisy – and no sign from any of the neighbours. The couple that passed our door and went up the stairs never even blinked… When got back to the hospital, it was dinner time.

Tomorrow is another big day for Pádraig: he’ll have an operation to close the hole in his neck. It has almost closed already by itself and got smaller and smaller over the past few days but it’ll need a couple of stitches to be on the safe side.

After this, his tracheostoma will be history!

After that, it’ll be a really really busy week. In the meantime, the three of us continue to hang out in this small room with the friendly staff and pretty good catering – but no beds for us, instead declining chairs and uncomfortable mattresses on the floor. But we are grateful. Really, really grateful.

Because Pádraig is on his ‘vague’, ‘veck’ from institutional care.

Glass

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!

60 hours

UnknownMy 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!