Drugs are crap. Dormicum is gold.

I’m a drug conservative. Ok, I gladly enjoy a glass of wine or a good beer at times. So conservative is maybe not the right word. But I am very sceptical towards other drugs, especially narcotics.

But how would you cope in the health care without drugs? Drugs, which on the street would be classified as narcotics? Maybe it would work, but I’m not inclined to test it. In medicine, they are a necessity. The drugs. The narcotics.

My – or rather Abbe’s – favourite drug right now is called Dormicum. Also called Midazolam. Or ‘fairground medicine’, as the staff tell the children. ‘Fairground’ – because you get dizzy and giggly. Without it, things would be a lot tougher.

On Monday, when Abbe didn’t want to know about all the examinations and restraints, one procedure after the other was being postponed. Under the influence of exactly that – Dormicum. When Abbe was completely hysterical by the end of the day he got a dose which would take him through the last, postponed procedures. Scans, ECG and needle insertions were to be dealt within the ten minutes the dose lasted.

He screamed, kicked and went crazy. Dormicum was injected on his bum, and everything calmed down. Suddenly, the tiny blue electrodes – which he had hated a moment ago – were quite nice. Or rather quite funny. He giggled hysterically at each electrode they stuck to his little body. So incredibly lovely.

Moreover, according to medical staff, children forget what they have experienced during the time they are under influence. And that, to me, is the main gain. I don’t want to add to Abbe’s stock of painful hospital experiences. He has so many yet to come.

At 09.00 – PA-catheter taken off.

One less tube this morning.

The PA-catheter measures the blood pressure. But not the ordinary pressure, the one you measure with a cuff around your upper arm. That one measures the pressure with which the heart pumps out the blood in the body.

The PA-catheter on the other hand, measures the pressure of the blood that the heart is pumping to the lungs. You can’t place a cuff there – hence the PA-catheter.

ICU – intensive rest.

Everything has gone to plan! The surgeons are pleased. The anaesthetist is pleased. That means we are pleased, too.

Abbe is asleep at the intensive care unit. The anaesthetist said everything looked to be so stable, they could probably wake him up already tonight. But instead, they are going to let him sleep on, until tomorrow morning. He might need that, after what he’s been through today. After that, he will be woken up gradually, under supervision.

I’ll try to tell you more about what they have done and how everything works. But I’ll do that another day.

A (rather) long day.

We were to count on the operation taking most of the day, the surgeon told us yesterday. This morning, at 07.15, we we came to the hospital, gave Abbe a last shower with an antiseptic sponge before leaving him, asleep, in the hands of the anaesthetist at 08.00.

"It often takes a little longer when you have been operated on before – like in Abbe’s case”, said the surgeon. “There’s a lot of scar tissue to get through before you can start operating. For the first operation it takes roughly 30 minutes to open up the chest and then everything is there, but now we are counting on 2-3 hours."

"The actual procedure takes a couple of hours", he continued. "It’s a more involved intervention than the ones we have done on Abbe before. More complicated. On top of that, the anesthesiologists need some time before and after, in order to do their job. So count on being able to visit ICU late afternoon or evening."

How it was: Abbe was put to sleep at 08.00.
They started to operate at 10.00.
The surgeon called just before 15.00 to say he had finished his job.
At 16.30 they called from ICU to say we could come up.

So, quicker than we had expected. That was lovely.

On our way to the operation.

Tiny little boy in a big, big bed..

Test driven this time: Toyota Prius.

We continued the old tradition from the last operation. To pass the time and to take our minds off the situation, we went to look at cars. A hybrid electric car, to be exact.

Having seen "An inconvenient truth", you do want the world to still be there for Abbe’s and his brother’s grandchildren, too. (pretentious)

The heart function – according to a four-year-old.

Small talk, when putting big brother to bed last night:

– I think it’s a bit scary that they are going to operate on Abbe tomorrow, said mum to big brother. – I also think it’s scary. I don’t want them to operate on me, said big brother.. – But there’s no need, your heart is fine. Abbe’s is not. – Yes, said big brother, now there’s just one man pumping in there. But later, there’ll be two men pumping their socks off.

Amazing what children understand, isn’t it.

You never get used to it.

You can’t. After all these operations and anesthetics Abbe has been through, you would think we would have got used to this by now. That we know how to deal with it. How it feels when he falls asleep on your arm.

Forget that. You feel just as bloody sick every time.

Short recap of the day.

Today, it was registration. It sounds simple. Hello, my name is so and so and this is my registration number, ok, room 4, thank you. But no – that’s not quite how it works.

There’s measuring and weighing. Saturation (oxygen level in the blood) to be read, ECG to be taken, and a number of other different tests. Lungs to be x-rayed. On top of that, the ears and the throat have to be looked into, the heart listened to and questions asked about everything concerning general medicine. After that, a scan needs to be done on the heart, a needle has to be inserted for the tests and for tomorrow’s anaesthetics. You have to talk to a physiotherapist about the time after the operation, to an anaesthetist about what they are about to do and finally the surgeon wants to discuss the forthcoming operation.

Most of the above has worked fine before. For the two earlier operations, Abbe was admittedly very young but he has been through the procedure several times since then, at examinations which required anaesthetics, for example.

Today, nothing worked. He almost refused weighing himself. The staff tried to calm him down and comfort him – they were joking around, to distract him. The hospital clowns came in to blow soap bubbles, they sang songs, played the ukulele and cut out Pippi Longstocking figures in yellow cardboard. But don’t for a moment think that Abbe was taken in by that. He was kicking and shouting and he was crying his little eyes out.

At one stage, there were eight of us in the room, holding on to him. But he was wriggling so much, a poor nurse dropped a little test tube with Abbe blood in it. It went straight onto the floor and made it looked like a minor blood bath. I felt almost as sorry for the nurse who was trying to insert a needle, as I did for Abbe.

In the end, my head was spinning. I was close to fainting and very close to crying.

Now we have washed the little Abbie here, at home, with Hibiscrub (antiseptic skin cleanser) first once, followed by an enema and then another Hibiscrub. At the moment, he is lying in his newly washed pyjamas, in fresh sheets, sleeping. Time to give him a last dose of baby formula. No more food before the operation tomorrow.

Then I’m off to sleep. I’m tired.

Bloody hell!

Pardon my French, but that’s how it feels now. Abbe has been scared to death, angry and inconsolable. You can tell he’s a few years older than when he went through this last time. He has a will of his own. A very strong one.

Now I’m completely worn out. Sitting, knackered, in a sofa, waiting for someone from the anaesthetic staff to come and talk to us. And the surgeon. The one who is about to fix Abbe’s heart.

If I have enough energy, I’ll write a bit more tonight. If not, I’ll be back tomorrow.

Waiting with Emla.

Abbe has been given an anesthetic cream – Emla – applied in strategic places where it’s likely they will insert a needle. While waiting for it to start working, we go for a ride in the slide, play and draw a bit, in the ward’s play corner.

Guess the medicine.

Ok. I’m possibly somewhat influenced by my profession. But I like it when graphic design has a function or a meaning, when it’s not just created out of thin air. That’s why it made me especially happy when Abbe was prescribed these tablets. They are called Trombyl and Abbe takes half a tablet a day (each tablet is roughly 5mm wide).

Which part of his body are they for, I wonder?

Abbe’s story.

This is what Abbe says himself about what will happen next week.

[translation]
– Can you tell daddy. What are we doing on tuesday? 
– Theeere. 
– Yes there. What's inside there? Is it the heart? 
– Mm. 
– Is the doctor going to repair that heart? 
– Mm.

Pre talk.

I’ve tried to tell Abbe what will happen next week. Prepare him.

– On Tuesday you’ll have an operation, Abbe.
– Mm.
– The doctor will then fix your heart.
– Ammi ah-ah.
– Abbe’s heart, yes.
– Mamma ah-ah.
– Mummy’s heart?
– Mmm. Ah-aphf ah-ah.
– Daddy’s heart? No, we are only going to fix Abbe’s heart.
– Mm.

I guess I’ll have to try again.

Nighty-night dilemma.

One is two and a half. The other soon five. They share a bedroom. With both parents there, it works fine. One parent puts Abbe to bed and the other reads a good book to his big brother. When Abbe has fallen asleep, you can sneak in to big brother’s bed. He has become a bit spoilt and expects to always fall asleep with one of us parents next to him.

But when you’re alone, when mum is not at home at bedtime, for some reason … that’s when it gets complicated.

To put them to bed at the same time doesn’t work. It’s far too exciting. Abbe plays up a bit, which big brother thinks is great fun. He giggles and Abbe gets even more wound up. So – one at the time is what works best.

I’m sitting with Abbe. He has always been very easy to put to bed, just a matter of putting him to bed, giving him a cuddle and then – goodnight. You could then leave and he would fall asleep himself. It’s not like that anymore. So I’m sitting there, hoping Abbe will fall asleep before the children’s TV programme is finished, as it’s keeping big brother occupied. Nope, of course Abbe doesn’t fall sleep. I’m now hoping the following youth programme will keep big brother captured for a while and that it won’t be too spoky or unsuitable for a four-year-old.

But, no. Just as Abbe is about to fall asleep, just when he has closed his eyes and is just a few seconds from crossing the border to the land of dreams... Just then, big brother gets fed up with being alone in front of the telly. He bursts into the room, says something, Abbe wakes up and it’s back to square one.

I’ve tried to explain. "If you just wait a little bit longer, dad will be with you. The more you keep coming in, the longer it will take”. But how is he supposed to understand? He is longing for his dad and doesn’t want to sit alone in front of the telly. And I don’t want him to, either. I want to read him a book. But for every time he comes into their bedroom, well …

A little book.

It makes me so happy. Really warm-in-my-tummy-happy. Actually even a bit tear-in-my-eye-happy.

My wife was at a parents’ meeting at pre-school last night. It was general info about what they do during the days, what to think about when the children are ill and so on. But after the meeting, one of the teachers asked if she could have a word with my wife.

Since Abbe started pre-school quite recently and has just started to get used to it, there is a risk we will have to do it all over again, after the operation. I mean, he will be away for a while now and might forget.

That’s why they are going to make a little book, with photos of the school, staff and all the children in Abbe’s group. A little book to read at the hospital, to remember. Isn’t that lovely?

In a week’s time …

… it’s time.
Huh.

Towards higher ground.

Abbe is building a very high ‘o-orn’ (tower). Not to be confused with ‘o-orn’ (pop corn) which he wants to munch on, on a cosy Friday night in. The tower actually got so high in the end that he couldn’t reach the top any longer, in spite of standing on a stool. Then it fell to pieces, but that’s sort of the whole point with high towers. He rebuilt it. And it crumbled. A new one again. And each time he was about to start a new tower, it was so hard to reach the bottom pieces.

Because you obviously have to stand on the stool.

Willpower enough to move mountains.

My god, he ain’t half puffing and panting as soon as he’s doing something, poor sod. He even gets out of breath when he’s lying still in his bed and I’m about to say goodnight. The situation has worsened lately and you can tell it’s time for the operation now.

Or, actually – ‘worse’ is maybe the wrong word. I don’t really think Abbe is feeling that bad. He doesn’t feel ill, if you see what I mean. But he can’t quite cope. He struggles to make the little oxygene that his blood can provide for his body last for a two-year-old’s activities. A bit like jumping, climbing, running and messing around at an altitude of 4000m, in case you know what that feels like.

But Abbe doesn’t seem to have grasped that himself. He doesn’t seem to care he can’t play around as much as he wants. He is like a Duracell rabbit, energetic, intense, stubborn and very restless, compared to other children. During one afternoon, he can build Lego, play with the Brio railway and the marble-run (incredibly fun toy), play with all his cars, build a hut using all the cushions and duvets in the house. He has the time to make figures with his Play-Doh, play pirate, sing and jump around and he will also make time for climbing up and down all the chairs and tables dozens of times.

On top of that, he will also cough, pant and lie down on the floor and rest inbetween playing. As for me, I can hardly take in what’s happening.

Autumn colours.

Oh my god, so many colds everywhere. Everyone is coughing and snivelling. As mentioned, Abbe has an eye inflammation. Him and his brother have been coughing for weeks now and both have snot hanging down from under their noses, constantly. Mum and myself aren’t much better. (Well, we’re not going around with snot in our faces, of course.) And pre school is like one huge viral war zone.

Is October really so fresh and clear, with vibrant yellow, red and brown colours? It feels more like yellow-greenish and sticky, I think.

New morning routine this week.

Abbe wakes up, crying. I go out to the bathroom, grab a few compresses and make them wet. I go into Abbe’s room. By now Abbe is really devastated, because he can’t open his eyes.

I hold the crying child while I try to keep the wet compress as still as I possible, on this eye. He’s now kicking, screaming and panicking. When the rock hard glue has dissolved into a tough goo he manages to open up the little eye and then it’s time for a new compress, on the other eye.

Finally, when Abbe can see with both eyes again, when the cough resulting from his great effort has eased off and when dad’s pulse has slowed down – I lift him up. I give him a hug and say “sorry, and good morning”. Reconciliation feels important.

Is everything really relative?

"...and she had pockmarks all over and very high fever. But that’s of course nothing compared to what you’ve been through".

Sometimes, I feel as if people are ashamed of telling me about something tough they’ve been through with their children. As if it didn’t really count. As if a tummy bug wasn’t good enough when speaking with someone like me, who practically has a discount card at the Children’s hospital. They almost excuse themselves because they think a night at A&E has been a hard one .

But why? We all have our own archive of experiences. Of course we have the right to feel sad because our child has hurt his or her knee or got tonsillitis. It’s perfectly natural, inevitable and also enriching, I think. My register of tough moments with the children might be larger, but that doesn’t mean other people’s are less painful.

A mate of mine and his wife went through a dreadful thing some years ago, while expecting their first child. They now have a wonderful little princess and my friend told me they had got a completely new perspective on life after having read about Abbe here. A bit like “our-life-is-not-that-bad-after-all” kind of thing.

I don’t think there’s any point in comparing all the time. But, if it means you look on life on the brighter side, well – why not.

Today’s song.

Grandmother and “grandfather” were here to help us this weekend, for the millionth time. I don’t know what we would do without them.

After having been with grandmother in the forest to pick mushrooms, Abbe came home with a new song on his repertoire. Or at least the ending of one. Grandmother sings: "… Jack in the box, pop out” and Abbe fills in with a resounding "Oo-hey."

Information meeting at the kindergarten.

Since a few years back, at the pediatric clinic at Queen Silvia’s, there is a person they call contact nurse. Her job is to liaise between the healthcare side and, say, school and pre-school. Conveniently enough, she’s also Abbe’s nurse when we do our check ups.

Some weeks ago, she visited Abbe’s kindergarten to inform the staff about things which can be useful to know when it comes to heart children. She had also taken the opportunity to invite along an information consultant from The Swedish Information Center for Rare Diseases – “SmågruppsCentrum” – to talk a bit about the 22q11-syndrome. I must say that was brilliant.

Abbe’s teachers were there, one of the teachers from big brother’s class, too. But there was also a woman there, whom I’d never seen. She introduced herself as the new headmistress. She is fairly new on her post and has taken the place of the acting headmaster who gave Abbe a place at Montessori after the previous one had to leave. Are you following?

Anyway. I was very surprised and extremely happy. We’re talking a commitment which, to be honest, I could never have imagined coming from the former headmaster. I have rarely felt I disturbed anyone, bothered anyone and taken up their precious time as much as that time when I tried to make her explain why Abbe was unable to get a place at pre school. But now – bloody hell. Here, a completely new person spends a whole evening listening, making notes and asking questions. It turns out the new headmistress previously had a pupil with 22q11, at her former school. And when it’s time to go home, she concludes by saying “Don’t you worry about how it’s going to be later in school. We’ll just have to put in the resources needed when that time comes.”

A cheer for the new headmistress!

Up into heaven.

I can’t remember how it all started. But I think it was once when I was pushing Abbe’s big brother on the swing, I said “How much of a push do you want exactly? All the way to heaven?”

Since then, Abbe always shouts the same thing when we head for the swing.
– Ump! Him-im! Ump! Him-im!
– Up into heaven?
– Yaaaaaa!

The world’s worst dad.

Some days you’re bloody useless. Tired, worn out, with a cold and no patience. You know you’re doing the wrong things but you can’t take a stand against your own shortcomings. Today is one of those days.

I would go so far as to claim I’m equipped with a rather robust patience. At least my wife tells me so. You smile, take a deep breath and let the shit flow over you. And move on. When dealing with children it’s a practical approach. Instead of going crazy over all the mad things the little buggers get up to, you brace yourself, clean up the mess and say “Oops, shall we do like this instead”.

But when my own energy runs dry, when I haven’t got enough running power to keep the good temper up – that’s it. Things I usually sort with a joyous ‘oh but of course’, become insurmountable. Small, child generated shenanigans feel like malicious devilry and the fuse gets shorter than the situation merits. You yell and raise your voice. Shout and push too hard. Go out to punish. Do you recognise yourself?

The boys are of course wondering why the borders have suddenly been pushed back. Or at least why the consequences of a violation have suddenly become worse. They are doing what they’ve always done. It’s me, who is tired and worn out. My poor little piglets. Sometimes, I’m not worthy.

Köping-Micke’s acceptance speech.

I’ve finally found it. The acceptance speech which Micke from "In another part of Köping" gave, at the Kristallen gala.

Don't worry about the language, I don't understand it either. I think Micke speaks about love. He’s cheering. He says congratulations. You can’t sum up what he wants to say in a better way.

Watch and enjoy.

Is there anything better?

Tough day at work. I drive home, tired, feeling like shit. On top of that, I have an irritating sore throat and my ears are popping, because of a cold. I get out of the car and take the last step towards the front door and that hour of feeding, brushing their teeth and putting the boys to bed. I don’t feel remotely inspired, to be honest.

But it’s all change once I’ve opened the door. From the bedroom I can hear the faint sound of Bolibompa (a Swedish children’s programme) coming from the telly. In that instant, a happy little voice cuts through the rest. "A-aphf om!!" (Daddy come!) Abbe shouts and I can hear the sound of his small feet against the floor as he slides down the bedside. "A-aphf om", "a-aphf om", he calls out, as he runs towards me and gives me a big hug.

Better than any energy drink in the world.

Countdown – three weeks.

Today it’s three weeks until 23 October. That’s the day when Abbe is going to have the third heart operation in his two-and-a-half-year-old life. After that, we will get a new little boy back, they have promised. One with rosy cheeks. An Abbe whose body can play and mess about as much as his soul wants him to. But it will be a major operation, as far as I understand.

That’s why I am longing for that moment in time. And that’s why I’m not.

Ammi ey-oy!

I was at my sis’ place yesterday. Not the pediatric doctor, I have another sister. I told her that Abbe’s big brother has become all Gameboy-addict and that Abbe tries to grab hold of big brothers game as soon as he tries to play.

"Wait a bit" said my sister, and ran away to get something. It turned out that Abbe’s cousins who are a few years older than my boys had recently updated their game consoles to the latest version and therefore weren’t using the old ones any longer. I say old, but compared to my 90s kit which has become so popular with Abbe and his brother, these are that not old. No, these are from the 2000s.

–Here you go. You can keep them, my sister said.

The Art of making a four-year-old happy. And a two-year-old. Abbe switches on the game, pushes all the buttons and laughs happily at the little tune you hear. He hasn’t got a clue what he’s doing, that you’re supposed to do something with the game. But that doesn’t matter.

It’s Abbe’s own ey-oy.

International Children’s Day.

I read in my calendar that it’s the International Children’s Day today.

Wikipedia: "The international children’s day forms part of the United Nation’s convention of children’s rights as of 20 November 1989. On this day, it is intended that all parts of society are to focus on the child’s needs and rights."

This is going to be exciting.

Abbe the Pirate.

Yesterday, the big brother was running around the house, with a pirate hat on his head and a plastic sword in his hand, shouting. He was a fearsome pirate.

Abbe wanted to be equally fearsome. Half a meter behind, panting and coughing, Abbe fought on with a smile on his face. Shouting and screaming, with a black eye patch. And, in his hand, a yellow flyswatter.

Thank you!

Both yesterday and today, lots of new people have popped in here to read our blog. This is largely because this man found us and wrote such nice things about my story. But also thanks to others.

This makes me very happy. I’m glad so many people have read. And cried. And laughed. But above all, I’m glad there is room for things like this.

Thanks for all the encouraging comments. Damn it, I so want to continue writing now. And I hope you will continue to comment, ask questions, cheer me on and boo.

/Abbe’s dad

Kristallen – a bit late, but still.

How many of you watched the Kristallen gala a week ago? I only caught bits of it myself – this, the big office party of the TV world. I was flicking through the channels during the Idol breaks and by pure chance, I got to see Kristallen exactly when the Prize for the best documentary was being awarded.

At this stage, everybody knows it was "Another part of Köping" that took home that category (and later, also "Programme of the Year"). If you have followed the series, you know why. A fantastic series about four mates living in a group accommodation. Not a comedy making fun of disabled people, not a tearjerker either. Just a hell of a lot of love and joy, mixed with reality.

And if you have followed the series, you also know Micke loves doing his speeches. At every party and every do, he grabs the opportunity to say a few well chosen words. Micke has Down’s Syndrome and you can hardly understand what he says but it doesn’t matter. He wants to speak.

And all this ends up being so bloody good and very moving. The Köping gang wins a prize and it’s time for the acceptance speech. In front of the entire Swedish population (at least the ones who watch TV3) and the whole TV elite, an acceptance speech is about to be held. At prime time. This has to be the ultimate wet dream for Micke and naturally – he jumps at the opportunity. And it is the finest, most incomprehensible acceptance speech I have ever heard, finishing with a resounding "Öua, öua, öua, öua". I snivel again. And laugh.

I’ve looked everywhere for a clip of Micke’s speech, but can’t find any. If you have one, or know where to find one, please let me know. You will have to settle for Tobbe’s acceptance speech as they got the Second Prize. That’s also fantastic. Short, but good

At the speech therapist

Today we saw the speech therapist again. That’s the woman who is part of the 22q11-team. We have another speech therapist, at the habilitation unit. It might sound a bit weird, but they have two different roles. Or, rather, they will have, with time. The one at the habilitation unit is sort of following the daily development and the one we saw today is responsible for the anatomical side of things. Doctor’s examinations, potential operations, reports to our own Solveig. I appreciate it’s not easy to keep up with this, I hardly manage to keep up myself.

Anyway. The speech therapist (eg the one who...well, you get the point) brought out a box with lots of things in it. There were little chairs, tables, cars, trains, dolls, cows, horses and so on. Lots of nice little stuff, I must admit. She starts a tape recorder and lets Abbe rummage the box.

– Oool, said Abbe (chair). – Mamma ool (mum’s chair). – Nenning (baby formula, about a little feeding bottle). – Ääshhht (horse). – A-afhh iiil (dad’s car).

And on it went. He did so well. And was so sweet. I melted like ice cream in the blazing sunshine, and grasped most of what he said. The speech therapist understood a bit. But I doubt you would have. You simply need to train a bit on the Abbe-language first. The speech therapist said he seemed to have a good perception of the language. He constructs short sentences, imitates etc. She differentiates between speech and language, we learnt. We talked a bit about what to think about, what to try to avoid and how come he doesn’t have consonants. You know, those M, N and NG-sounds.

I asked optimistically if this is something you can train for. After a slightly too long, pregnant paus, she did that clenched ‘well-how-shall-I-say-this’-look and tilted her head sideways. I’m sure you’ve seen it. And know what it means. No.

It’s about anatomy. Abbe’s palate just doesn’t go all the way back in order to obstruct properly. So the air is streaming where it shouldn’t. And consonants like b, d, g, k and t become impossible. You can’t train for that.

Deep down, I actually knew this all along. I mean, I’ve read up on all this. I consider myself a reasonably intellectual person, who sees things with a clear sight. Even so, I had been hoping there would be a way out. Maybe you can train. But no, instead it makes me so bloody sad.

Pathetic.

Gameboy.

Abbes older brother has inherited an old Gameboy I had myself, in the 90s. Old, tired graphics compared to today’s gadgets, but he doesn’t care. He loves it, has already found functions I didn’t even knew existed in these games and has been thrashing me since way back. Four and a half year’s old! Of course, Abbe wants everything that his brother has. Yesterday he was tearing and pulling the Gameboy and shouted out loud: "Iiin ey-oy, iiin eyj-oyj!" (my gameboy). Sweet.

Prepared to cancel.

With hindsight, it was good that Abbe’s operation tomorrow was cancelled already last Tuesday. Considering how ill he has been this weekend it would probably have been cancelled anyway. And then we would have been set on him getting the operation and therefore been very disappointed. Are you following?

It’s better now.

Ok. I think it’s time to declare "all clear" for now. Abbe is feeling better now.

Two nights in a row, we have been sleeping tight together, with all the windows wide open in the bedroom, just to get that well needed cold air into Abbe’s throat. The temperature went down a bit during the night, with the help of paracetamol and he was breathing better thanks to Betapred and fresh air.

Abbe’s mum is back from Käringön. She had had a good time and she deserves it. But I need to sleep. Goodnight.

Pediatric Accident and Emergency.

After taking advice from the Pediatric A&E, we agreed on the following. As long as the temperature is going down with the help of paracetamol and the respiratory rate stays the same, we might as well stay at home. But as soon as the breathing becomes difficult we go to the hospital to get Ventolin or similar. She gave me various tips on what to look out for on Abbe – the neck, tummy etc – to see if he needed help.

I gladly avoid A&E. Having spent all those hours there – usually nighttime – I’d rather check Abbes breathing once every half hour, to avoid having to go there.

Health Care Advice Line.

"You are placed in a queue, and you are currently number 3."

Abbe’s temperature is a bit over 40°C and his breathing is very rough and heavy. He is asleep now, in an almost upright position, with all the bedroom windows open. Cold air and upright, as it should be. What’s worrying is the poor oxygen saturation he has from the outset, even without the croup cough. The margins. They’re so tiny. This is why, since 30 minutes back, I’m in a telephone queue to the Health Care Advice Line.

But what will they say? My experience is that as soon as you mention the word ‘heart child’ nobody dares to make their own decisions, without involving a cardiologist. Oh … now it’s my turn, hang on …

Ok. As I thought. Go to the Pediatric Hospital, or call them. I’ll try to call them first.

Murphy’s law.

My wife is away, at Käringön. That’s a wonderful little island outside of Orust, on the west coast of Sweden. She is there with some girlfriends – eating, drinking and enjoying life. Well deserved.

I’m at home with the boys. After the obligatory "yhhs yhhs" with "oh-oohn" and "inn-inn" (Friday cozy night with pop corn and pretzels – in Abbe language), I put the two boys to bed, poured myself a glass of wine and watched the future stars of Idol 2007.

Just as I sat down in front of the computer with the second glass of Friday wine, to write a bit on the blog, I hear what sounded like a dog barking, coming from upstairs. Abbe has got croup.

First time he had it we had to stay at the hospital for a couple of days, him and I. The second time we spent half the night in a waiting room at the Pediatric A&E, with the front door wide open (cold air is good for croup, in case you didn’t know).

And now?

Sudden changes.

One emergency appointment per week. That’s about as much as the pediatric heart surgeons can cope with at Queen Silvia Children’s Hospital. And today they received no less than three little babies with life supporting Prostivas-drip at the 323 unit. It was a case of fitting them into the scheme as soon as possible and then Abbe fell out of the planning as soon as he’d been falling into it. Instead, he got a new appointment, on 23 October.

We bent over backwards to make this operation happen, given the short notice we had. Notify work, cancel various appointments with speech therapists etc, cancel a dinner we had invited people to and sort out baby-sitters for the big brother. Everything was ready to go.

The nurse who called from the 323 unit this morning felt ashamed. She apologized like mad for having messed things up so much for us and tried in every way to explain the situation. But, what the heck, of course I understand. Just two and a half years ago Abbe came in with Prostivas attached to a needle in his scalp, to keep him alive. I know exactly what the parents of those babies are going through right now. Abbe can wait.

Short notice.

Abbe is two and a half years old now. Well, he was yesterday, to be exact.

This morning I had a call on my mobile. I was super stressed because we only had a few hours left before an important presentation for a presumptive client. We had been working hard with this during days, evenings and nights for over a week. I replied and in the other end was the Pediatric Heart unit at the hospital. It’s happening again.

I have known that Abbe is to have a second heart operation, since last time it happened, back in July 2005. And lately, I’ve even been aware it’s to happen fairly soon. There has been talk of October.

But now he has got an appointment for Monday. In a week’s time! They asked us to think about whether it would work with such short notice and get back during the day. It was not easy to focus on our presentation, I must admit, but – I managed.

Dance on my grave.

I do have my low moments, with grim and unthinkable thoughts. How difficult will Abbe’s life be? Will he feel left out, will people understand? Will he be there when I grow old? It doesn’t happen that often, I basically have a positive approach to life. But sometimes, they pop up, these dark clouds.

That’s when I want to listen to a special song, by Bo Kaspers Orkester. It makes me happy and sad at the same time. Gives me hope, in a silly way. I know that Bo Sundström wrote it when he had had his daughter and it probably means something completely different to him, compared to the meaning I read into the lyrics. But what the heck, it does it for me.

Some time ago I was at a BKO concert in Gothenburg’s concert hall. I remember thinking it started a bit lousy, but the song I am talking about came up as third or fourth. That’s when it all changed. My hair was standing on end and tears were running down my cheeks. And the rest of the concert was magic.

"They want to teach you how to crawl, how to walk in step. 
They want to teach you how to march, how to stand to attention. 
Stand in line and clap your hands, agree for the sake of it. 
Learn how the wind turns, walk in a straight line for the sake of it.

They want to teach you how to lie when things are against you.
Learn how to bow and scrape to some idiot. 
I want to teach you how to dance, if it will ever happen. 
If I get to decide about things, then you’ll dance on my grave.

They want to teach you how to doubt on what you believe is true. 
Go around being afraid of your sister and your brother. 
I want to teach you how to dance, if it will ever happen. 
If I get to decide about things, then you’ll dance on my grave."

On Spotify

There will be many doctors.

My wife was looking at the number of doctors we (and Abbe) have to deal with. And this is just counting the regular, recurring visits. On top of these, you have to add the doctors we have met after numerous nights at the Pediatric A&E. But it would be too complicated to include these as well.

So this will be a bit ‘tabloid-y’. "Abbe’s doctors – we have the whole list" Ok. You with me?

Cardiologist – Queen Silvia Children´s Hospital
Eye specialist – Queen Silvia Children´s Hospital
Ear Specialist – Sahlgrenska Hospital
Speech Therapist (speech) – Salhgrenska Hospital
Speech Therapist 2 (speech) – Rehabilitation in Alingsås
Doctors – Rehabilitation in Alingsås
Kidney doctor – Queen Silvia Children´s Hospital
Physiotherapist – Rehabilitation in Alingsås
22q11-specialist – Queen Silvia Children´s Hospital
Pediatric surgery – Our local council
Special Dentist – Dental Care - Salhgrenska Hospital
Dietist – Queen Silvia’s Children’s Hospital
Nutrition team (Speech Therapist/nutritionist/doctor) – Queen Silvia …
Psychologist/Doctor – BNK (Pediatric Neuropsychiatry)
Orthopaedic (guess we’re done now) – Queen Silvia …

Total: fifteen.

Eeeeemiiiim, ömme onge.

You know, I don’t know what it is with Astrid Lindgren. Everytime I read one of her classics to the boys, or watch one of the films, I can’t help but crying a bit, on the quiet. They are so special. So much love and understanding.

And then they go and turn it all into a "theme park". I was sceptical. It must be crap. Pippi Longstocking masks made of plastic and Ronja burgers with Birk fries. Rubbish. However, after having heard enough friends saying how good it all was, we decided to give it a go. Abbe’s older brother is going through a true Emil-and-Pippi-period.

And here I have to concede. "Astrid Lindgren's World" is brilliant! We had a 2-day stay over, in a little cabin. An hour after our arrival the first day we were wondering how on earth we would manage to kill time here? But when we came back at the end of that day, we couldn’t see how we would be able to do all the things we wanted to do the following day.

The place is full of little plays and lots of music and songs (and we know all the songs). All the well-known places in Astrid’s books have been created to function both as stages for the play acting and as playgrounds. The food is ok-ish, but the children seem happy with that, too.

Now, the boys play Emil i Lönnerberga and Abbe is running around shouting "Eeeeemiiiim, ömme onge", the whole day. (From Emils dad who shouted "Emil, förgrrömmade onge", meaning "Emil outrageous kid")




Abbe crawls across on the plank between the shed and the larder at Katthult.
The Big brother became very small, at Nils Karlsson Pyssling’s place.
Abbe as Emil and his brother as Ida.

New headmaster.

I’ve been to Cannes. In my field of work, there is a yearly event where we compete in advertising (Cannes Lions, it's like the World Championship). At the same time, there are lots of interesting talks and seminars. And quite a lot of rosé wine.

Anyway. I came back home this afternoon and was met by a jubilant big brother who gave me a big hug and said: "Abbe is starting at my nursery school after the summer". Nah, I thought. Now he’s misunderstood everything. Abbe has got a place at a nursery school. But at an ordinary, municipal nursery school. We’ve even been there to visit. It seemed good, in every way, and I have started to get used to the thought of driving our children to two different places. Poor big brother, how will I explain to him? I thought he was ok with this.

But then I notice his mum and himself are looking at each other, knowingly … "What?" I say. "What’s up?" The Big Brother can barely keep from laughing and my wife has a big smile on her face. "Yes, the headmaster has had to go" she says. "A temporary headmaster rang us yesterday."

After having been tipped by a few other parents in the association, he started his post as a headmaster by checking out the intake on a gender basis. That’s when he called us.
– I think it’s very strange that Abbe has not been offered a place.
– So do we, said Abbe’s mum.
– Have you got any idea why?

My wife told him the story. She described all the details, all the talks, the support and surprise from the nursery school teachers when they learnt about the lost place and our frustration over the fact that the old headmaster didn’t seem to bother.
– This doesn’t seem right, said the new, and – as a godsend – acting headmaster.
– No.
– We can’t have it like this.
– No.
– Well, then I’d like to offer Abbe a place for this Autumn.
– Thank you.

Inflexible Health Care? Not always.

Today, Abbe has been through a whole range of kidney examinations. Mag3-scintigraphy, Crome-clearance and esophagogram test. Sigh.

He has done a Mag 3-scint before and you can read more about those here. However, Crom-clearance was new to us. It works like this: A substance is injected in your blood, you wait half an hour and then provide a blood sample. Then you wait another half hour and give another blood sample. And repeat. And again. I think we did it seven or eight times in total. Poor Abbe. But he did have a needle fixed all the time, so it wasn’t a case of keeping inserting the needle. The purpose of this examination is to measure the kidney’s capability to clean the blood.

As you might know by now, it’s not easy to put a needle into Abbe. Although today, it was relatively easy. Abbe was given a sedative (Dormicum) in his bum before they started, so he didn’t move that much when they inserted the needle. I was incredibly impressed. We were meant to come back the following week for an esophagography, but what if he could have done it today. I mean, the needle was already there.

The nurses suggested we ask at the X-Ray unit. Hardly likely to get approval for this, we though … but we went along, just in case.

– Hi. Abbe is to have an X-ray in a week’s time, but we’re here now – and he has a needle inserted already. Any chance you could do it today instead? Then you wouldn’t have to do it next week. It’s not easy with him.

The nurse at the X-Ray reception looked at us as if we were completely bonkers. Then she said “Just a moment” and disappeared for a while.
– You’re in luck, she said.
– Our staff is on a course today, so we have no booked appointments. We only take emergencies. So they could take Abbe after all. Come back after lunch.

Incredible.

Espresso, please.

Abbe is a right little Italian at heart. Prefers espresso, preferably with a piece of Valrhona chocolate.

Discrimination?

I’m angry, bloody angry! And sad. Abbe is not getting his place at the big brother’s Montessori nursery school. There’s such a long queue and it wasn’t Abbe’s turn yet. So what, you might think. But, this is starting to become a bit fishy. And it makes me pissed off and scared.

It should be Abbe’s turn. Going by age, sex and everything else taken into consideration for the admission. There was nobody else ahead of him in the queue. But nope. No place. By pure coincidence, we heard from friends that another little boy had been accepted. "Right from the street". And no sibling priority.

I have tried loads of times to talk to the headmaster. Tried to make her explain what the current queue looks like. But she doesn’t want to know. Instead, we start talking about things like extra resources, the need for support and "we already have a child with Down Syndrome who needs extra resources". And now this is making my blood boil. At the same time, a part of my world is falling to pieces.

Is this the way things are going to be? Is this a first example of the life Abbe is facing? Mistrusted, had people making excuses for him, marginalized and difficult. Is that the way he will be treated? I couldn’t take that.

And we moved Abbe’s older brother from a nursery which he liked, to give Abbe priority to a pedagogy he might come to need. It’s not easy to do the right thing.