31 October 2007

Trick or treat?

It’s a strange life I’m living at the moment. I come home a few hours every other day, replace the dirty clothes in my rucksack with clean ones, sleep, drive big brother to the kindergarten and then return to the hospital. I hardly know what’s in our fridge back home.

Tonight, Abbe’s brother and myself were watching a children’s programme on the telly when suddenly, there was a knock on the door. Outside were three witches. "Trick or treat?" they shouted.

Oh my God, is it Halloween today

Short update.

His temperature has been kept below 38.4º C today. Admittedly with the help of paracetamol, but still. CRP slightly up again, bot nothing dramatic. The day started pretty much as it ended yesterday, i.e. with a couple of helpings of proper nose bleeding.

The doctors think Abbe’s temperature is a totally natural reaction to the newly transplated homograft (a human vessel from a donator) so yesterday they started a course of ASA (aspirin) in order to deal with it. The problem is, aspirin also thins the blood which makes the nosebleeding even worse. So, today they stopped the ASA again. Catch 22 or what.

By the way, I have been meaning for days to try and explain what they have done to Abbe this time. The actual operation, I mean. It’ll come, I promise. Maybe tomorrow.

Go, play therapy!

I’ve become a real softie. I might as well admit it. I don’t know if it’s because of Abbe’s journey or if it’s just part of being a father, generally. But it only takes something nice, loving and deserving for that bloody lump in my throat to start swelling.

Today, it was the play therapy. At the ground level here at the hospital, there is a facility for children of all ages. And it’s not about tests, X-ray, operations or examinations. It’s not even a waiting room. No, it’s a whole department, actually very big, even – with the sole purpose of making the children feel good. To give children whose days are filled with examinations, medicines and jabs something else to think about for a while. And that includes their brothers and sisters.

There are lots of toys in all shapes or forms, really nice rally- and Formula 1 style pedal cars, hockey- and football games, ping pong table, play houses and doll corners. En fantastic play unit with material that most daycare nurses would give anything to get their hands on. You can play with water if you want and there is a great playground in the inner garden. In one room were drums, bass, guitar, synthesizers and a computer for those who feel like recording their own record. In another room, you can lie down and listen to music in white bean bags surrounded by light shows on the walls, lava lamps and other mood enhancers. And there is a library filled with children- and teen books, films an CDs. And staff, of course.

I’ll bring the camera there next time, so you can see for yourself.

I’m sold.

Fresh air.

Yesterday, we were allowed out for a while. Lovely. Abbe and myself went for an hour’s walk around the hospital area. The mother had to pick up big brother from kindergarten.

30 October 2007

A minor blood bath.

Abbe was having great fun with one of the nurses. They were standing on either side of the aquarium, making kisses on the glass. I took the opportunity to grab a cup of tea and a sandwich. Cosy.

Suddenly, with no warning, Abbe started to bleed from his nose. And now weäre talking nose bleed big time. In just a minute or so, there was blood everywhere. ON the floor, serviettes, compresses, me and the nurses who had come to help out. Bloody weird.

Another wave came in bed, as he was putting on his pyjamas top and the little compress which had been stuck up his nose – under protest – fell out. The same heavy flow again and this time, the doctor on duty was called upon. I was on my knees in the bed, with Abbe’s head on my lap, my hand on his nose and the bloody tissues. After quite some time, the bleeding stopped.

By then both my legs and Abbe were asleep.

How's it going?

At the moment, I’m not quite sure how things are. Admittedly, the CRP is on its way down. That’s good. But the temperature is still there. 39,2° just now. At the same time, his discharge from hospital seems within reach. The pacemaker threads were removed this morning. They normally leave them there until the very last moment, just in case. Get rid of them, and you go home tomorrow, is the general view.

We’ll see if it’s correct this time. It depends on the temperature. Why is it there?

Ice cream - excellent medicine.

One of the very first sign language signs that Abbe learnt was ‘ice cream’. He loves ice cream. And since the staff here wants him to get plenty of fluids, he is allowed to eat his beloved ice cream as much and as often as he wants.

Plus, that’s one of the few moments when a nurse can show up in the doorway without Abbe going "Ay-oo" (goodbye) as soon as he sees her or him. They’re not that popular, the nurses.

Unless you are given ice cream, that is.

29 October 2007


It was looking so good. Abbe came through amazingly quickly after the operation. Incredible in so many ways. He cycles and runs around in the corridors, climbs chairs and even has a go on the slide, with a bit of encouragement. We’ll be out of here in a few days’ time, I thought.

I’m not so sure anymore.

Abbe has had a slightly raised temperature all the time, since his operation. That’s not unusual. Your immunisation system gets triggered as soon as someone messes around with your body. You take a daily C-reactive protein test, to detect any infections or inflammations in your body. The temperature has been a steady 38°C, but yesterday the CRP was on the rise, so a scan was carried out, to check for any fluid accumulation around the operation scar.

There was some fluid. But nothing to worry about according to the cardiologist who did the scan. Today, we did a new scan which still showed some fluid but – slightly less. So far, so good.

But now, this evening, the temperature rose quickly. Suddenly, the thermometer showed 39.7°C. Strange. The last thing I did tonight before returning home to take over from big brother’s babysitter, was to, together with my wife, hold on to a panicking, heavily perspirating Abbe, so that three nurses could find a vein for a blood sample. For the second time, just today.

How hard can it be?

You have to excuse me but now I have to moan a bit. Sound a bit like the angry old biddy who keeps putting up notes in the communal laundry room – all beginning with "for everyone’s comfort" and ending with "friend of good order". Well, you’ve seen them before. Maybe you’ve even put a note up yourself. In the laundry room, the communal kitchen in the student digs or the coffee corner at work. As for me, I don’t put up any notes. I sulk via the internet instead

Look at the three photos here above. They are all from the little kitchenette where us family members can make ourselves a coffee or a bite to eat, in order to lighten up hospital life a bit. The first note was probably placed there by hospital staff. A few, very simple rules, presented in a pleasant way.

I assume the second note has been put up by a parent. Someone who is fed up with things not working. A laundry room biddy.

The third photo, well you can see for yourself.

I have now been doing other people’s dishes, cleaned up the play corner after other people’s children and collected the ward’s own coffe mugs, with the Children’s Heart Foundation’s logo on them, from the ground floor cafeteria. I guess someone has brought coffee downstairs, when the cafeteria was closed for the weekend and then hasn’t bothered to bring it back again. A litre of milk which we bought for our coffees have miraculously disappeared after us having coffee, just twice. This, in spite of ‘Abbe’ written with a felt pen all over the milk package. And in spite of us having closed it with cellotape, just in case.

I completely understand if someone is chocked and feel exhausted and find it hard to cope. That’s how you feel when you stay here. But the point is, we all feel like that. It’s the fact that people help each other that makes this place so very good.

There, that’s my shouting done for today.

A rainy day.

28 October 2007

How do you treat fear of hospitals?

We have a new problem to tackle. A new ailment. Let’s call it fear of hospitals. It might be because Abbe is of that age where his own will is being developed. The integrity, the self and all those other fancy words which can be sorted under the heading “I can do it myself”. The total integrity is born. It’s bound to play a role anyway.

But, on top of that, Abbe has spent innumerable hours in a hospital. Many tough examinations, tests and restraints. I guess it’s just getting to him.

This has now led to Abbe hardly allowing staff to enter our room. His lower lip shivers and he goes "aj aj aj oj oj aj" as soon as they turn up. Certain examinations are being scrapped, whereas when it comes to others, which must be done, Abbe has to be coaxed into doing them. However, you can’t fool Abbe any longer. He knows the tricks. The crucial medications will have to be taken using gentle force. We’re in a bad spiral.

We’ll have to arrange some kind of therapy, I think. There’s so much more hospital to come for Abbe, he can’t have it this way, poor sod. I was talking a bit to the mother of the girl in the room next to Abbe’s. She had similar experiences, but tried to comfort me by saying “They grow out of it, don’t worry.” Her daughter was eight or nine today, I think.

To make everything less dramatic, we sometimes do the examinations on ourselves, Abbe’s mum and myself. Or on his cuddly toys. Sometimes, Abbe can have a go himself at applying the finger clip oximeter on dad’s finger. Today, he was given a lovely doctor’s bag, courtesy of one of the nurses. You have to try.

Now, Abbe is lying here next to me, snoozing, but it’s a restless sleep, full of dreams. Probably about nurses.

Nurses – a little genus check 2.

It’s funny, isn’t it. After my post about never having come across any male nurses, part from at the intensive care unit, I have met four of them, here at 323. Two nurses and two child minders. Still, just four blokes out of the hundreds of meetings I’ve had with hospital staff, but anyway. It’s very good to see.

Coincidence, or trend break?

This social network thing.

I’ve touched on this subject before, I know. But I can’t help bringing it up again. I’m so glad we live close to Gothenburg!

I really feel for those who come from other places in Sweden, forced to bring their whole family here during the hospital time. Siblings who have to be away from school for weeks, maybe pets who need to be looked after. And on top of that, having to stay in a small hotel room with the entire family, unless you’re lucky enough to end up at Ronald McDonald’s, of course. Or just imagine being single, with several children?

But whether you come from far afield or live down the road, I realise now how important the social network is. What on earth would we have done, had it not been for our grandparents, aunties, friends, neighbours and supportive daycare school staff? I honestly don’t know.

Big brother gets picked up and driven to his daycare school and the hospital, gets taken care of and spoilt. And yesterday, as I returned home to take over from the babysitter of the day, there was a bag hanging on our door handle. It was from our neighbours and contained presents and drawings for Abbe and the best cardamom cake in the world, for the rest of us. In a heart-shaped baking tin.

Sometimes, I feel so fortunate.

27 October 2007

Pee and poo.

Things which are on the check list before we can even begin to talk about going home. Our body is an advanced, complete system and everything must balance. Note, I’m not talking about complicated stuff like blod cells and electrolytes. No, I’m talking bog standard debit and credit at the loo.

Everything you take in is noted. And everything you get out. How many millilitres of baby formula, juice or water is Abbe drinking? How much wee does he produce? By means of a catheter, everything runs into a measuring cylinder-looking plastic box, before being emptied into the bag. But what do you do when the catheter has been pulled out?

Well, you weigh the nappies. An unused Libero Maxi nappy weighs 44 grams, so it’s just a case of subtracting that sum from the total weight and then you know how much wee is in the nappy. Clever. And if you have both number ones and twos in the nappy, you have to roughly gauge the weight of number two.

Fluids tend to build up in children’s bodies after the operation so it’s important to make sure they “wee it off” properly. You help them on the way by giving them a diuretic medicine, after the operation. It looked a bit worrying for a while as they usually expects the weeing to start about 3-5 hours after removing the catheter. Abbe hadn’t produced anything for eight hours. But he’s caught up now. Wee wee.

And now for the next battle. The morphine which is given to children to reduce the pain has a tendency to slow down the digestive system, which in its turn can cause indigestion. Hey ho, the good with the bad and all that. It can be very tough and painful in that little Abbe stomach, and you have to rely on various tricks like heating pads, massage and – if it gets really bad – enemas, to manage it.

So. Excitement in room five at the 323 ward right now: Will the poo come soon?

New words.

Abbe has developed his vocabulary this week. Unfortunately, these kind of words:
– Ouch ouch ouch.
– Oh oh oh.

Sun showers, bugger off!

It’s a strange sight. Strange, but lovely. Abbe has really got a completely new skin tone. Looks a bit as if he’s just come back home after a sunny holiday. Sure, he has been a bit rosy before, too. But then, it was caused by high fever and part from the rosy cheeks, the rest of the face was greyish.

This is different. His grey-blue skin has become golden brown, and the cheeks rosy. His blue lips are now pink. And for the nailbeds... they have always had a bluish tinge to them, but no more. Pink and nice looking, too.

A beauty, in other words.

26 October 2007

My idol.

Yesterday, Abbe was allowed to sit on our laps for the first time. Mum had the great honour of being first out, and when I saw the little hero in his mum’s safe arms I couldn’t keep the tears back. It was all just... too good.

Today, after "cleaning up" and chest X-ray, we could move into a room of our own. That means phase three is completed. It’s so good to have your own place. Come and go as you please, close the door. The little newly operated children need that calm now and then.

As Abbe is wireless now, I took the opportunity to put him in the buggy and walk around the ward a bit. It does him good to get out of the bed for a while. In the corridor, we came up to one of those activity boards, placed at a 2-year-old’s level, featuring various turning wheels. I stopped the wheelchair and Abbe played with the cogwheels and peg tops that he could reach. "Neee", he says suddenly.

It suddenly struck me that it might not be a wise move, as it was only three days ago since he had his heart operation. Only just 24 hours since he came to. But then I remembered the nurse saying he could come up when he felt he was able to. So I help him down from the wheelchair and onto the floor. Still a bit unsteady from the Dormicum dose he received during the clean-up an hour ago, he stands there for a while and plays with the board. Then he walks away.

I can hardly keep up. I simply wasn’t prepared for him standing up, even. As some kind of human safety net, I walk behind Abbe with my hands just a centimeter from his upper arms. He goes out to the play corner, makes coffee for mum, makes a sandwich and does the dishes in a little play kitchen. Suddenly, he knows what he wants to do. "Inna”, he says and only mum and myself understand, but that doesn’t matter. I know it means he wants to play with Play Doh.

I help him into a high chair, bring out the dough, he starts playing and makes peas, sausages and cookies. It’s about here that I start to realise. With new tears of joy in my eyes. Abbe is the toughest person I have ever met.

Cleaned up

Now, all the tubes and wires are gone. At least the ones who made him bedridden. The CVC (central venous catheter) was taken off this morning around eleven. The wee catheter too. And all the ECG-electrodes. Plus, the big plaster on the chest has been removed.

Hospital slang for the above makes me think of a Quentin Tarantino film. "Have you cleaned up Abbe?", I heard a nurse saying to another. "We’d better clean him up before taking him down for X-ray". Wonderful.

Still remaining on Abbe right now: A PVC (peripheral venous catheter, or a needle, as we usually call it) in the left hand and one in the left foot. They are used for taking samples, giving medicines and drips. If he doesn’t get enough liquids through his food during the day, they add what’s needed via a drip feed in the night. He has four (or is it six?) pacemaker wires left, which will come out through the skin on Abbe’s chest. An unpleasant thought, I think, that they are actually stuck to his heart. They always put them in, in case the heart starts jumping a beat, beat twice or something else unexpected. They stay until you go home, basically.

It’s only very occasionally that he has to be wired up to the pulse oximetry or blood pressure machine. Otherwise, he’s now wireless.

25 October 2007

A little film from the Intensive Care Unit.

Abbe 3.0

You get to recognize a lot. The same preparations, samples and tests. The same unbearable pain in the whole of your body when you hand him over for an operation. The lumps in your throat, the tears and the worry always remain the same. The procedures before and after the operation. The same.

And as ever, the pulse oximetry sends out an alarm. That’s the instrument which mesures the oxygen saturation in the blood. The same alarm. But something is significantly different. When Abbe’s oxygen saturation goes from the usual 94-97% which is where it usually fluctuates, it sends out an alarm. When it goes below the trigger limit of 90%.

So far in his life, Abbe has never passed that limit. Never ever.

Phase two, check!

"You have to eat the elephant in small portions" as my colleague usually says, when something big and challenging is about to happen. Now, we have just chewed the trunk and one of the ears. Phase one and two are completed.

The first and the biggest step – the operation – has been completed. And at 11 am we checked out from the P-ICU hotel and took the lift down to ward 323. Great! Not that I dislike the Intensive Care Unit, far from it. They are totally fantastic. But this means that everything is stable for Abbe and that another little child now requires their special knowledge more urgently.

At 09.38 – the removal of more tubes.

Now the last drain tube from his chest has been removed. That’s good news, as it means the bleeding around the operation area will be reduced.

Also, they took away the artery needle. That’s what I guess you could call the outlet. From it, you can get blood and take tests. Its counterpart on the input side is called a CVC – central vein catheter. That’s what sits at Abbe’s neck and goes right into a vana cava, which is a larger and more central vein, close to the heart. It’s used to give him various medicines and given its location, it has an immediate effect. But the CVC remains where it is. It’s the artery needle that’s been removed.

Good morning, Queen Silvia.

The Children’s hospital, in the morning sunshine. Inside the window furthest to the left in the upper (but one) row, Abbe is asleep. The sunbeams have not quite yet reached his bed. But they will. Soon.

24 October 2007

A tired little lad.

Abbe is still asleep. He has been asleep for more than 37 hours now, if you don’t count the short awakenings during the day. He has opened one, sometimes two eyes, whimpered with a little sorry, hoarse voice, tried to remove a tube or wire, and then gone back to sleep.

Occasionally, he has tried to turn around, change position or even sit up. Mum, dad and the intensive care nurses have been busy calming Abbe down, so he goes back to sleep and also sorting out what can only be described as a makramé of catheters, drains, pacemaker wires and other things which Abbe is connected to.

Hopefully, he will sleep until early tomorrow morning. He might just as well stay asleep now, in the beginning of all this – it would only be tough for him to be awake.

At 15.37 – Abbe wakes up

Abbe has opened his eyes a few times during the day. But only to close them soon thereafter. A little while ago, he actually woke up – and sat up! That must have hurt a lot, with that big scar on his chest. Good thing he gets his fair share of morphine.

Anyway. He sat up, grabbed the tube which went in through his nose and down to his stomach, and he pulled all of it out. He whimpered with a litttle hoarse voice and lay down again. It all happened so fast that nobody had a chance to stop him. I guess the tube irritated him. Just think when he wakes up even more and discovers the rest of the tubes and wires. That’ll be exiting.

ICU – an intensive care unit.

There’s a lot going on at the Pediatric ICU. Always someone dealing with a machine, making notes in an observation form, milking a drain or adding a substance in one of the many tubes in the system.

I mean, they’re so bloody good! The thing is, it’s rare you find yourself so much in the hands of somebody’s professional knowledge as when you are in intensive care. They have Abbe’s life in their hands. What a job, eh? ”What did you do at work today? Oh, an advert for this and that? As for me, I kept a 7-day-old baby alive”. But I don’t think they go around thinking like that. They are just doing their job. And for that, I am extremely grateful.

At 13.20 – respirator taken off!

Abbe is breathing on his own! The respirator is completely gone – including the annoying tube.

That calls for a celebration, with another coffee.

Nurses – a little genus check.

Nurse. Sister. You can tell from the name it’s about a woman. But quite a few men are also being trained at the College of Nursing. Where do they go? The ambulance service probably get a few, but the rest? Looking at the hundreds of encounters we have had with healthcare staff, I have only come across male nurses in one single place. The intensive care.

Could it be the combination of a technique intense workplace and a bit of ”action”?

At 11.30 – A drain removed.

Abbe has two drain tubes. Or, to be correct, he had. Now they have removed one of them. Great. More Abbe, less tubes.

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.

23 October 2007

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.

22 October 2007

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.

21 October 2007

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?

20 October 2007

Abbe’s story.

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

– 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.

19 October 2007

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 …

17 October 2007

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?

16 October 2007

In a week’s time …

… it’s time.

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.

15 October 2007

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.

8 October 2007

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.

7 October 2007

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."

6 October 2007

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!

5 October 2007

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.

4 October 2007

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.

3 October 2007

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.

2 October 2007

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.

1 October 2007

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.