21 July 2005

How are you, Abbe?

Great. Let's go home then!

18 July 2005

Mag3 scintigraphy.

Today, Abbe went through another examination of his kidneys. Or maybe that should be his kidney. They inserted a radioactive substance in his blood which went through his kidneys. He was given a sedative, to make him lie still in a gamma camera, which registered the radiation. The camera shot a frame a second or so, during around 20 minutes and the end result was a little blurred film which reminded me of the ones you see taken by thermal imaging cameras.

The aim of the examination is to show how kidneys take up the drug, and that it runs off as it should. And you could see quite clearly from Abbe’s little film that there was only one kidney, on one side. Apart from that, all was fine, as far as I understood. I guess we’ll see once the doctors give us their verdict.

I must admit it felt a bit weird when they brought along a syringe with one of those radioactive symbols which reminded me of my old Kraftwerk records, and injected it into Abbe’s bloodstream. But apparently, the dose was weaker than what you normally get during an ordinary X-ray or CT scan.

17 July 2005

Hospitals are fun.

Abbe’s big brother gladly visits the hospital. It’s particularly fun to care for all the sick dolls and teddies in the Children’s corner. There are stethoscopes, ECGs, oxygen face masks, probes, syringes, dressings and lots of other things the dolls need to feel good.

16 July 2005

Cow’s milk, no thanks.

I just remembered I forgot to mention one thing: Abbe is allergic to milk. We actually started to suspect this the first time he was admitted to hospital and now we know.

It all started with the lack of breast milk, at one occasion. Abbe’s mum was at home and had of course pumped out milk there, (using the pump we had borrowed from the maternity unit and kept at home), but our little stock in the hospital fridge was empty. So we mixed some infant formula milk, based on ordinary milk – and gave it to Abbe. After a while, he was vomiting like a calf.

Now, it’s not entirely unusual that babies vomit but our Abbe didn’t usually do that. And now, he was not that well. Since it’s not that easy to get enough nourishment into him the normal way, this was not particularly fun.

We tried a few times again later, with the same result. That’s when it was decided that in the future, he was to get a milk-free substitute when the breast milk wasn’t enough.


Today, Abbe is four months old and was given a little teddy by the staff. They know Abbe almost as well as I do. I did a bit of counting, and came to the conclusion he had spent more than half his life at Queen Silvia’s Children’s Hospital. Well, I think it's time to grow out of these statistics now.

15 July 2005

Coffee and sticky chocolate cake

Abbe has come back from Intensive Care and it’s very quiet on the ward. I think there are two families here, part from ourselves. Ida from Sundsvall and Adam from Värmland (think it’s Karlstad). As we are in the midst of the holiday season, only emergency ops are allowed now. All planned operations will have to wait until after July, when Sweden has woken up again.

Actually, it’s quite nice. You get to talk more to the other parents and the staff. Not that I feel particularly stressed here, normally. Absolutely not. But still, there is a big difference. The staff are fighting about who gets to ‘borrow’ Abbe. "Maybe you want to go for a walk? I can look after him while you’re away".

Today, one of the nurses was making a cake in the parents’ kitchen. A lovely smell spread across the ward. Then she came along with a trolley, filled with coffee and newly made sticky chocolate cake and whipped cream. We all squeezed together in the play corner sofas and had a really good time, Ida’s and Adam’s parents, the staff and myself.

12 July 2005

Images from the intensive care unit.

They anesthesized Abbe with a mask, placed a peripheral venous catheter in his thumb...

...and the saturation meter in his cheek.

All values ​​are noted carefully on an observation sheet.

11 July 2005

The incident with the heart-lung machine.

The operation went well. Not only did they widen the narrow pulmonary vessel, they also took the opportunity to swap the shunt for a larger dimension. In this way, they bought Abbe some more time, until his next operation. And that’s brilliant. It means he will have the time to grow, become stronger and that he will get some peace and quiet for a while. It’s hard to say how long it will take but – about a year is rather a realistic guess, as far as I understand.

But the surgeon also told us something which was not as fun. During the operation, you use a heart-lung machine. It oxygenates the blood and pumps it around the body. In other words, it functions as the patient’s own heart and lungs, but outside the body, thus enabling you to turn the heart off while operating on it.

Just as they were ready to turn the heart lung machine off and transfer the blood in it back into Abbes body, something unexpected happened. In some way or another, a little bit of air entered the system and with that, out in Abbe’s veins. This is not good. The surgeon did say he was pretty convinced it was such a small amount that it wouldn’t affect Abbe, but he couldn’t guarantee it. And he seemed a bit upset with the actual incident. "I have operated on children’s hearts for 20 years and never seen this happen before. Now we need to review our procedures, so it can’t happen again".

I tried to focus as much as I could on the positive. That the actual procedure had been successful. My wife didn’t quite manage this, and I pulled her closer to me, to comfort her as best I could.

An eternal wait.

When Abbe had his first operation, we were told not to wait on the ward. After a short walk, we just couldn’t keep away. So, we did exactly what they had told us not to do. The wait became unbearable, of course.

This time, we decided to follow the advice from the medical staff, in pure self-preservation. We just wanted to reduce the pain. Straight after that dreadful moment outside the operating theatre, we went to a café and had a proper breakfast. – Now, what do we do? The minutes dragged past and we just couldn’t take any more breakfast. A walk would not have been enough to dispel the thoughts. So, we went to check out some cars.

I know. It sounds weird and somewhat insensitive. But we needed something to concentrate on, so we didn’t have to think about Abbe, lying there on the operating table. After having visited several different car show rooms and even tested a Skoda, it was soon time for lunch. "They should be finished by now, shouldn’t they", we told each other. And yes, we were in total agreement that this was the case. After having stocked up on food and biscuits at a local super market we returned to the hospital. By the time we had unpacked, made lunch and eaten, it was around 1pm.

– It was good that we spent the whole morning away this time, we told ourselves. – We might even have time for another coffee before they call us to say they are ready. Proud of the fact that we had managed to keep away from the hospital for this long, we sat down and waited to be allowed up, to see our little boy. At 6pm, one of the surgeons came down to the ward. – They are stiching him up upstairs right now, he said. He told us what they had done and how it all went. Just before 7pm, we had a call from the intensive care unit, to tell us we could now come up.

Eleven hours after having left Abbe by the door of the operation theatre, we were now finally allowed to see him. With hindsight, we could have testdriven all the car models in the city, had we wanted to.

Surgery number two.

Just washed before surgery.

At seven o'clock this the morning arrived at the hospital.We washed Abbe with Hibiscrub (antiseptic soap that is used before surgery) and knocked back a couple of cups of coffee. The surgery was scheduled first thing in the morning, and just after eight we left him again at the doors of the operating room.

And at this point, I have to revise some of what I wrote earlier. The part about one becoming hardened. It does not apply here. Not the moment your baby is rolled in to the surgery center. At the risk of repeating myself and being a bit dramatic - it's among the worst things you can experience. I dare to say that if there is a "terrible-experiences-as-parent-list" this easily gets a top ranking. It doesn't matter how prepared you are.

You're not so tough in the elevator down from the sixth floor.

10 July 2005

Soon time again.

The vacation in Denmark is over and the puzzling with babysitters for big brother starts. Since kindergarten is closed for the summer it all becomes a little bit extra complicated. The first days after the surgery we want to be at the hospital both of us, my wife and I. Later on we will have to take turns.

We checked in to ward 323 this morning. After a bunch of controls and the worst attemt to insert a needle on Abbe, we where finaly leaving the hospital for the night and come back for the surgery next morning. As a matter of facts Abbe never got any needle. They gave up after trying at least fifteen different places om his body. In the head, on his hands, arms and feet.

– We will have to anesthetize him with a mask instead tomorrow, they said. Samples before the operation they had to take capillary. In other words a little pricking in his finger and then squeeze out some drops. I am not looking forward to tomorrow.


Our week in Denmark was fantastic. We had decided too relax, enjoy and have a nice time together. All four of us. We knew we had a tough time ahead of us, and that it might be quite a while until we would get another chance.

I promised myself to spoil Abbes brother as much as I could. He was going to get whatever he pointed at. He is really worth it after all he has had to cope with since he got his little brother. It was cheap. Some pails and shovels and an ice cream every now and then. I expect pledges like that to become more expensive in the future.

My wife and I agreed on not thinking about the coming surgery during this week. That, of course wasn't an easy task, but in some magic way we did it quite well. At one point we even managed to time both the boys to sleep in the buggy at the same time, so we could have a beer and a danish smørrebrød at a restaurant in the sun.