Verve

Loads of preparations for tomorrow’s operation. It’ll be all fine – though there was a bit of a brief scare today, more below (I have to make you keep reading) Watch out for step two to germanise yourself: it’s got to do with normcore). Also loads of preparations on getting a deposition from Pádraig’s doctors in the Schön-Klinik; preparing a mediation meeting for Wednesday (ahead of the trial); and the trial itself – with us going over on 12 April and the trial against the driver of the van starting on 13 April. It’s a civil case we have taken, the police didn’t see a reason to even cite the driver. But it’ll be a jury case and we have been told it will last at least a week. (Today I found out that the Boston Marathon will take place around that time…)

I thought a bit more about what I wrote yesterday. And tried to bring it all a bit more to the point. So here is my second attempt.

√ They are telling us our children are lost causes.

√ They are telling us, our children offer a bad return on investment so they won’t invest in them.

√ They are telling us we should take the money raised by the friends of our children to help us pay for the care the State denies them – and go on a holiday to relax a bit.

√ They are telling us, injuries acquired by our children under their care don’t matter as long as their brains haven’t recovered (which they might not).

“They” are people in charge of neurological rehabilitation in Ireland.

Are they serious? Are they just disillusioned or burnt out? Are they ignorant of advances in their field?

√ They should take note of the highly prestigious Cochrane Report on: Multi-disciplinary rehabilitation for acquired brain injury in adults of working age (Review) which concludes that:

Patients presenting acutely to hospital with moderate to severe brain injury should be routinely followed up to assess their needs for rehabilitation. Intensive intervention appears to lead to earlier gains.

Patients with moderate to severe brain injury who received more intensive rehabilitation had earlier improvements.

√ They should take note of the CONVENTION on the RIGHTS of PERSONS with DISABILITIES of which Article 10 states that:

States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

√ They should recover their enthusiasm, energy, and empathy that made them choose their profession. And then they should add a pinch of outrage to the mix, outrage at the State that runs our health system; and that took away their verve to do good, to really care.

And then – then, we, together, can start doing what needs to be done and give to our children what they need to get and what is their right to get.

Today, Pádraig had two very short seizures. The first one occurred when the physio was about to start her stuff, so I blamed her. An hour later, a doctor came in and asked me to describe what had happened. So Pádraig showed him. – As his operation is going to happen tomorrow morning, a neurologist came and prescribed some anti-seizure medication, and then sent a message that they want to continue administer anti-seizure medication “peri-operative”. – And then I checked the side effects and caution notes of the antibiotic he was getting against some bacteria in his bladder, and all became crystal clear: tell your doctor if you had brain issues/injuries; seizures can be a side effect. – There were a few really difficult hours until Google lifted the terrible uncertainty. You might ask: why did none of the doctors mention this before, or even after? Sounds like a very sensible question to me ….

Well, if you made it here, you deserve a break. So, here is Step 2 to germanise yourself:

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Tomorrow will be one of those big days. Fingers crossed. Candles lit. Mother lining all the angels up for support and to inspire the doctors to do the best job they can possibly do.

Worthwhile

The following post turned out longer than expected, and might not be everybody’s cup of tea nor glass of wine…

If you don’t feel like reading tonight, go straight down to the end of this post and learn how to become a good German in ten easy steps. It’s great fun (and so useful these days that I was tempted to mail it to Varoufakis, just in case:)


There are evenings when I think there is nothing worthwhile to write about. (I hope you haven’t noticed:) There are other evenings when I am so tired that I find it difficult to put coherent sentences together. (I’m sure you’ve noticed that.)

Today, for whatever reason, I really want to share with you what I think about two really important questions. I want to avoid the incoherent sentences produced by a tired mind and late night writing, so I am starting to write a bit earlier. It’s just after noon, Pat has left to meet up with other mothers in a big rehab centre, Pádraig is having his nap….

What are these questions? –

How can I change the attitude of the neuro rehab health establishment in Ireland?

What is more important – to be pragmatic and take what we can get thus gaining in a material way, or to insist in what we believe is right, running the risk of loosing out in a material way, but affecting sustainable long-term change.


The first question is on my mind because of remarks made by people responsible for the system over the past one and three quarters of a year – again and again.

To give you an idea, here is a selection of what has been said by health officials and leading doctors (quoting from memory): our care and rehab for persons with severe acquired head injuries here is as good as anywhere else in the world – no need to access services in other countries; instead of wasting your money on expensive treatment why don’t you use it to look after yourself, spend your money and go on a relaxing holiday; don’t worry about dropped feet, bed sores and other injuries – those can all be looked after and fixed if their brain recovers; there is no requirement for immediate rehab, better wait until they’ll have recovered a bit better to take full advantage of it; three months of rehab is sufficient; given the limited resources we have, we cannot waste them on persons with very severe acquired brain injuries; we understand your concerns but we have to be realistic.

Reality, our experience and that of other families we know, does not support these outrageous and ridiculous views of the “experts” – neither does best practice nor does the UN Convention on the Rights of Persons with Disabilities. Can we change these views, and how?

We go public with everything we’ve got.

This includes telling the public what health officials tell us parents at meetings when they are supposed to support us and help our children: that they think it’s ok for young people with very clear therapeutic needs to stay for months and years in acute hospitals, collecting one injury after the other. And to put them into nursing homes thereafter. With an hour or two of therapy. A week. That we should use the money our friends and family fundraised to go on a well-deserved holiday, instead of wasting it on care (abroad) that won’t make a difference anyway.

We can show how our children improve when they receive the right care and therapy. We need to do this with confidence and without fear of loss of “privacy”. (I know, this is a difficult one as we are taking decisions on behalf of our children’s privacy.) And – even if our children’s condition did not improve, they still need the care and attention any human being (with several decades of life ahead of them) deserves.

And play Mr President by Pink to them again. And again. And again. “What to you feel when you look in the mirror? Are you proud?”

Change will not happen quickly. But it will. Because nobody in their right mind can allow the situation as it is allow to continue.

If I think back, I had not the slightest idea of what ABI even meant, never mind what effect it has on persons, or how it should be treated. People need to know. Because it could happen to you tomorrow.


The second question is on my mind because it’s one we are faced with on a regular basis: Do I accept an “arrangement”, do I “make a deal” because that’s the way it works? For example, do I allow my politician to push my child ahead in the queue (at the cost of another person)? Do I accept a completely inadequate service or financial compensation because it’s better than nothing? – Or: Do I know what is right and what is wrong, and do I insist in what is right? For example: Do I risk to annoy a consultant because I insist in what is right, to a point where I make a complaint or take a legal case? Do I accept one hour of therapy, or some financial compensation although I know this will never be enough?

What is more important for us and our cause? To be pragmatic or to insist in what is right? To get a quick fix and look after ourselves  – or: take responsibility, follow the “categorial imperative”, and invest in change – even if that will not come tomorrow. There are many examples I could think of where people have been told: “it’s not worth it”, “be realistic”, “don’t you know how this works”, “play the game”. It has always taken the courage of people who were not afraid to stand up to be counted, people who were not afraid to loose if human rights were at stake, people not afraid of being looked down upon as “innocent idealists” – it took these people to make ours a better world. I would feel infinitely more comfortable in their company than in the company of the rich, successful dealmakers without principles.

We are proud, we are not helpless victims deserving charity, we know what is right, and we will insist in our rights.

It’s the time of the year when we are reminded of what happened to a young man with long hair and a beard who did not “make deals” – even when his life was at stake – a man who told the powers to be that there was another way. He insisted in doing what is right and rejected what was wrong. He had a short, difficult live and, eventually, ended up dead on a cross.

I’m thinking of the lyrics of Apparatchiks by Paul Noonan and Lisa Hannigan:

These are the punches that we roll with
This is the shit
When it’s so much easier to stomach it
I’m downwind of you

Laugh now but one day we’ll be in charge

“House always wins”? – No, it doesn’t.


Finally, if you made it to here, you deserve something lighter.

I cam across –

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I am sure you can’t wait for step 2!

 

 

 

 

 

One step at a time!

Unbekannt

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Unknown. Unbekannt.

No one here in Hamburg knows Pádraig from before the accident. People here are meeting him for the very first time and in the state he is in. They have no idea who they are dealing with. Therefor, each time we come across a new person, I make an effort explaining to them who Pádraig is, what happened to him, and why he will recover from his catastrophic injuries.

There’s no place like hospital, where we meet so many new people every day that telling Pádraig’s story has almost become a reflex.

Imagine that there are people who wonder whether Pádraig has always been ‘like this’.

On the other hand, there are the visitors from Ireland hoping to find the Pádraig they know from before the accident.

I think that neither of the two manages to fully enjoy the company of the ‘real’ Pádraig yet, the person that has suffered and is now recovering from the consequences of this enormous hit against his head. – 

This morning, Pádraig and I woke up to the terrific music shared by Cathal Murray on his weekly Irish Radio programme, The Weekend on One. And guess what?

Just after 6am Irish time, Cathal dedicated a terrific new song by Sufjan Stevens “Should Have Known Better” to Pádraig – and made his day!

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Signs

I am beginning to feel at home here. Isn’t that sick? It’s very likely a new kind of syndrome I’m developing. HHS (Hamburg Hospital Syndrome) or HIQA (Hamburg in Quality Accommodation) or HSE (Hamburg Service Engagement) – if you’re familiar with the Irish health system (the WHAT? I hear you asking) you know what I’m talking imagesabout. I’ve learned to read the signs. Like: the caterers take pity on you and give you an extra slice of Wurst. Or they bring in his meal first and then mine half an hour later, so that mine doesn’t get cold while I’m helping Pádraig with his.

The honest truth is that I can’t wait to get out of here. And although Pádraig has not made his opinion clear yet – luckily, I’d say (and, if you know him, I see you nodding, knowingly) – I am sure he is just tolerating this because it’s temporary. Most likely Monday, Tuesday at the latest, followed by a few days of recovery. The average is 5 days we were told.

They haven’t figured out yet, that Pádraig is anything but average.

Today, we made sure that, finally, the request for logo therapy went through, along with a request to see an orthodontist. Who did come was the gastroenterologist (don’t worry, I had to look that up too). Like so often, when we talked to him we wondered why on earth we had never talked to a gastroenterologist before??????

He immediately canceled the smaller of the two procedures planned for next week, i.e. to replace Pádraig’s PEG. Apparently you don’t have to change a PEG for 5 or even 10 years – or until it gets porous. Yes, his words. To me it sounded a bit like a motor vehicle sales person talking about the warranty for the car he is selling: 30,000km or 3 years – whatever comes first.

More importantly almost, he told us that stomach’s, if you don’t use them, shrink. Stomach’s also don’t tolerate too much ‘normal’ food if they have been conditioned over many months to just take in easy to digest tube feed, or Sondenkost. Therefore, even though Pádraig wants to get lots of tasteful, nice smelling, full-of-texture food, he will have to hold back a little and only slowly increase the amounts he is eating. How will that have to be done, we asked — and were told that they will send a nutrionist to advice us.

Yes, you’re absolutely right. We will make sure that, while we are here, we will get the absolute maximum out of every day. We are getting expert advice from a gastroenterology, a urology, a neurology (he checked Pádraig’s bone flap replacement), and an orthodontic consultant, from a dietician, and from therapists while we are waiting for Pádraig’s procedure. Considering what we’re getting out of it, the wait has been worthwhile so far. No doubt.

(Seos – I was trying to keep writing as long as I can to be able to listen a bit longer to Daniel Barenboim, but I won’t make the full 02:19:33 tonight. Should have started earlier:)

Today, it’s one year and nine months since the accident. And there are so many convincing signs that Pádraig is hanging in there, that he never has stopped trying, and that he has achieved so many things that others said would never happen.

Tonight, I tell them: this is just the beginning. Watch out!!!

Everyday

There are so many ordinary, everyday things I never write about.

Phone calls. Someone rings Pádraig. I put the phone to his ear. He just keeps a straight face. Or he smiles. Or looks surprised. Makes an attempt to say something. But can’t (yet!). What is it like for the people talking to him?

Body hygiene. Getting washed. From your teeth to your toes. What kind of sensation is that?

Getting turned. Every 3-4 hours. The term itself is so strange.

People talking in the room. Doctors proposing treatment, discussing operations, thinking loud about how to handle the anaesthetic. Hello! Are you talking to moi?

IMG_0409Food. As I write it I feel so strongly that we must get rid of those plastic bags with this really unattractive brown liquid that drips through a plastic tube into his stomach. Let’s go for really sweet, really savoury, really hot, really mild, really sour, let’s go for appearance,  taste, texture, and smells.

Communication. We ask whether he likes or dislikes stuff, whether he is comfortable, whether something hurts (I never ask him though whether he likes my music or my jokes). He can tell us with his tongue. But what if he wants to say something and we are not asking they right questions? If he wants to initiate the ‘conversation’?

The list could go on.

Before my head hits the keyboard, some news: you know we’re planning to go to Lourdes in May. Today, I was wondering whether our Lady knows that we’re on the way and send us a miracle as encouragement. Here is what happened: I stretched out his left arm, asked him to keep it there for a moment, then asked him to lift it up, and he moved the lower part of his left arm up to his chest. Not once, but twice, and he would have done it more often had we continued with the exercise.

IMG_0411I am convinced that soon Pádraig will be able to eat and drink enough to keep him going. Even if he didn’t eat the semolina, soups, pureed potatoes, meats, veggies, yoghurts – he would just need to eat/drink five 200ml really tasty Fresubinis to get his calories.

Time to go to bed.

PS1:Today was the last day to get a regular registration for the Hamburg marathon. Last year I had to apply for late registration which was a bit nerve-racking. This year I (just about) made the deadline. Can’t believe I’m doing this.

PS2: Two nights ago, Maria was elected chair of the Irish society in TCD. When she told Pádraig over the phone last night, he looked so so happy and, no doubt, was so proud of her. I wonder what he said in his head to her…

PS3: They’re playing Stairways to Heaven on the radio. There’s a lady who’s sure all the glitter is gold… I was so proud when I learned to play the song on the guitar, that I played it at every party (remember ‘parties’?) I went to – I never got tired playing it, though I know I lost a few friends in the process… It was the music that counted. Who cares about people, especially when they don’t appreciate really cool, great music???!!!

WhatIf

What if

the extraordinary becomes ordinary

the notion of ‘second life’ becomes a reality

despair turns into a daily experience

rays of hope, fun, love, and solidarity provide are your survival kit

instead of money, greed, or power

What if you took time for what matters

I was thinking about this today. Never, in my life, would I have expected to be able to survive anything even close to this. Not just that but I believe I became a stronger and, likely, better person because of Pádraig. He, reduced everything to the essential. It gave me focus, single vision, clear priorities.

IMG_0402Today, I showed his two physios how to put him on his feet. It worked. Was I proud? Was I proud, or what?

He also managed to hold his arm up on one of those triangle hanging down from an ‘arm’ over his bed, not for 1, not for 2 or 3, but for nearly 4 minutes.

I was proud of Pádraig, so proud, because with his own single-minded never-let-go so-immensely-annoying attitude he is now able to do IMG_0405things that are close to miracles. Just think about proposed organ donations – on second thoughts, don’t. That would have finished the job started by the van that hit Pádraig.

Today, he ate two bowles of semolina and broccoli soup, as well as some of his carrots and meet, all minced (he didn’t touch the mashed potatoes), and then washed it down with orange and plum juice.

So I went for a short run (remember the marathon?) and got so lost on the UKE grounds that I had to ask someone for the “Notaufnahme” (A&E) – explaining that despite my exhausted look, purple red face and fast breathing I did *not* require urgent medical help…

We’ll both sleep well tonight.

Worry

images2Whatever it is, it seems that the older I get, the more I worry. So, is worrying a sign of getting old?

Day 3 in the UKE, the day the operation should have taken place. It is not clear yet when it will happen now, but the earliest will be Thursday, possibly Monday.

Last night, Pat and I bought tickets to Unknownattend the civil case against the driver of the truck that hit Pádraig. It is scheduled to start on 13 April in Boston and will most likely take at least a week, probably longer.

In the evenings, I never know where the days went. They seem long in the morning but then accelerate a lot: before I know, it’s evening and I am so tired I can hardly keep my eyes open. imagesEach change, each new location we end up in, is like starting all over. It takes days before we have all the ‘stuff’ together: blankets, pillows, suctioning gadgets (to clean his mouth), food, drips, and the list goes on and on, not to talk about physios and logos, and new nurses, new rules, new helpers, new new new.

For Pádraig, these changes must be really tough – or, maybe, and thinking about it again, they aren’t? He wasn’t one that worried too much about things. Even when flying with Ryanair, he never queued and always walked in last, in a very relaxed way, to find his seat – and who, who is ever relaxed on a Ryanair flight I ask you?

Worrying is a sign of getting old. So I’ll stop right here and now. (Though I’m not really sure whether that’ll make me feel younger, at least I’ll stop wasting time worrying, and get onto the Dreamboat instead:)

Correction

Another day at the hospital, another tale.

UnknownAll of this morning, there were meetings and forms and tests. As a result, the doctors decided that Pádraig needed to be treated with an antibiotic before the operation. Nothing too bad about this, only that it means that tomorrow won’t be the ‘big day’ and that the operation will be postponed until Thursday at the earliest.

This feeling of timeless drifting in space I had forgotten about is creeping back in. There is no ‘Pflegedienst’ here and I have been appointed Pádraig’s personal nurse. The ‘real’ nurses stick in their head from time to time, maybe 3-4 times a day, to check if we need anything and if we do they get it. Food is served equally often: breakfast, lunch, Kaffetrinken, and dinner.

But when the door is closed, this room could be anywhere. There is no connection to the outside world, except the internet and a big window. It’s so weird and strange that last night felt as if I had woken up every half an hour, checking where I was.

This evening, we organised a few journeys: Pat is going to see a therapy centre in Pforzheim, which I visited last year with a friend and to where a number of Irish parents are now bringing their children who can’t get adequate treatment in Ireland.

We also bought tickets to Boston where the civil case against the driver of the van that knocked Pádraig off his bicycle will take place in mid-April. When I think about this… I won’t tonight. Tomorrow is another day.

This day last week, Pádraig’s grandmother died when I was on the way to see her.

For today, the German word is “Entwarnung”.
One of the most famous German groups these days is Deichkind, and their last album “Niveau, Weshalb, Warum?” has become a huge success.

Move

They had an IT problem and were half an hour late (where will it all end???) but they did arrive eventually. Unfortunately, not with the collapsable stretcher and not with the bigger car – which meant that the stretcher could not be brought into Pádraig’s room (we had to carry him out of the room in the lifter instead) and that Pádraig’s legs had to be slightly doubled because otherwise the door of the ambulance supposed to carry him to the UKE would not have closed. All of this stuff is really predictable, we’ve been there and done it. Why it happens again and again, although this time I had highlighted his height when ordering the ambulance, will remain the secret of the ambulance companies:)

Each time we arrive in a hospital, it’s the same procedure: attempting to gather all the ‘stuff’ Pádraig needs. Usually it starts with the extension to the bed. Then it’s ordering a special mattress (as he will not move much in the bed). And it goes on …

IMG_0393This time, we have a double room. I have been admitted as a carer, with a bed and an ‘all inclusive’ food deal. It makes so much sense for the hospital. They don’t have the staff and the capacity to look after patients like Pádraig, so they get the insurance to pay my all-in stay.

Pádraig was a bit apprehensive but then it seems that he like where he was. For the first time – yes, another first!!! – he finished a full bowl of broccoli soup for dinner. Something seems to IMG_0392be happening these days: he is really into strawberries (well, who isn’t?), he manages to finish a cup of tea, and had no problem finishing the freshly squeezed orange juice his friends had bought for him. OK, I hear you say, this is just premium food that smells nice, has a great texture, and tastes like heaven – who would not eat or drink this?

Well, Pádraig would not have just a few weeks ago, at least not with this relative ease and natural-being-himself ‘gusto’!

Tomorrow, there will be a few conversations with doctors, planning the operation, as well as a few routine tests. Nothing too stressful, I hope, but probably time consuming.

Finally, another first: This is the first time that Pádraig is in an ‘open’ room – no isolation, no “Kittel” or aprons, face masks, and gloves. Can’t believe it.

Today’s move was good. Here is to hoping that the next few days will work out well!

PS 1: I almost didn’t manage to get back home, but this morning I managed my 25k run in preparation for the Hamburg Marathon. – Just checked out Andrew’s fundraising page and got a bit of a shock: just 35 days to go!

PS 2: Hopefully, I will be able to reply to your very kind comments you posted over the past few days, following the death of my mother. I really appreciate each and every one of them. They gave me the strength I badly needed to get through the past week and the coming weeks and years. Thank you!

After

UnknownThe Day After and it is still not real.

There was the day itself, organised and arranged. There was the event.

There are those who have gone before her: her brother, her husband, one of her daughters.

There’s us, left behind to do the best we can in the time we’ve got left.

Pádraig got a new wheelchair, a “Netti”, the day before yesterday. It took the technician around 2 hours to set the chair up for Pádraig – and we already wonder how we managed with the old on. It’s a brilliant chair!!!

Tomorrow afternoon, Pádraig and myself will check back in to the UKE, this time on a urology ward, pre-op on Monday, and the operation on Tuesday. Hopefully, we’ll be back out in a week. I hope and pray that all will go well.

I did not have the energy yet, to answer all who sent us their best wishes but will do so soon. In the meantime please let me thank you for all your kind words and messages.

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