The straw

I received the news of the planned surgery over the phone yesterday at work. My holidays start tomorrow. That was the straw. We’ve longed so for this summer. Getting some well deserved rest and spending some time together after the rough spring that we’ve had.

When I went to tell my colleagues what the doctor had said on the phone I fell apart. Snivelling and sobbing I tried to sum up the conversation. The lump in my throat swelled and my lips were trembling. I couldn’t hold back. The others didn’t quite know how to deal with the situation. Someone asked, “Is there anything we can do?” I could hardly speak but managed to press out. “Be compassionate. That’s all.” And then I locked myself in the bathroom.

To get through the first time in the hospital when Abbe was just born and went through surgery I decided to visualize a goal. I saw my wife, and myself tending to the tomatoes and the basil in the green house. Abbe lying on a blanket under a parasol and big brother running naked through the water sprinkler. “If we can only get to that point, all will be well”, I said to myself looking out on the grey March days.

 It may sound like an image out of one of those shiny and chirpy Jehova’s witness folders. The ones they try to force on you with their foot stuck in your door. But it worked for me, there and then. Something to long for in all the turmoil. And we had almost got there. Then that phone rang.

Trouble.

The CT-scan of Abbe’s heart brought bad news.

The lung artery splits in two outside of the heart. One leads to the right lung and the other one to the left. It was now clear that the left artery was more or less clogged. That is, the tiny amount of blood that got through the shunt to be oxygenated in the lungs could more or less just get to the right one. No wonder his oxygen saturation levels had been so low.

– We can’t leave it like this, said the doctors. Abbe’s left lung won’t develop right if we do. There needs to be a flow for it to grow properly. I guess it’s a little like cutting off the blood supply of a finger or such. Eventually the tissue dies and you end up with gangrene.

— He has to go into surgery. When was it you were going to Denmark? We booked a cottage in Lønstrup on the west coast of Jylland, and had asked Abbe’s doctors if it would be okay, what with his low saturation and not knowing why, and all.

— Were leaving week 27 and get back on the Saturday of that week.

 – Good. You go on your holiday. When you get back you come here on Sunday the 10th and check in to the ward. We’ll take him in for surgery on Monday, the day after.

The kidney.

The CT showed, as we already knew, that Abbe only has one developed kidney. On the other side there’s some sort of rudimenatry kidney. Luckily us humans are so cleverly constructed that we have spare parts for some of our organs. The kidneys, for instance. You can manage well with just one. The tricky part being that there’s no spare one, in case you might need it.

Anyway, the kidney Abbe does have seems to be in working order, and the kidney specialist (I’ve lost count of all the specialists by now) had no concerns.
Good.

CT

And another session holding still a screaming baby. More needles to be put on. Another ham-hat. Another night at home without food in preparation for the CT. But this time they were all there. So it’s done. Thank God.

Welcome to Holland.

I’ve learnt something, since Abbe was born, there’s no idea planning anything. You never know what’ll happen next.

Someone had put a note up on the wall in ward 323 that illustrates pretty well what it’s like to become the parent of a child with special needs. It was written in 1987 by Emily Pearl Kingsley (who also did script writing for the Sesame Street-show) and it reads as follows:

Welcome to Holland by Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very significant loss.

But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things, about Holland.

Respect!

Sick leave.

On arriving at the ward to do the CT this morning we were told that the anaesthetist was on sick leave. -You’ll have to come back in a week, they said.

Hello? Get someone else to do it you twats! After what Abbe went through yesterday it felt like a punch in the face. It really pissed me off.

But having considered it for a while I realised that she’s only human. Like the rest of us. People get sick. Nothing much to do about it. So we removed the needle and prepared to do the whole thing over again in a week. Oh the irony.

The ham-hat.

At home for the night before the CT-scan. The little hat serves to keep the needle in Abbe’s head in place.

Needles and veins.

We were in hospital today to do some tests and to place a peripheral venous catheter for the check-up tomorrow.

Abbe doesn't have the easiest veins to find which means that every time they try to put a needle into him is hell. Frankly. And not just for him. We were beat after they’d been tormenting him for well over an hour, desperately looking for a good enough vein.

Funny though, how you get used to these things. I’ll never forget when Abbe’s brother was a newborn and at the tender age of three days was to go through the routine blood test. They tried his hands and feet a couple of times before they decided to put the needle in his head. I was holding him and nearly fainted on the chair. My wife, who’s pretty cool about syringes and stuff, cried her eyes out. But now, after all that Abbe’s been through, we just tell the staff to go straight for the head, it usually works.

We’ve grown with the task, I suppose, rather than gone numb. I’m pretty sure we’ve grown. It wouldn’t do, would it? Crying and fainting all the time?

More check-ups.

We won’t see an 80-85% oxygen saturation in Abbe’s blood. We’re in for check-ups every other week hoping for the saturation level to have gone up. But it doesn’t. Instead it’s gone down further. And for each visit, the experts look more and more confused. We’re now talking a saturation level of about 65%. The cardiologists aren’t happy about that.

They think Abbe might have grown out of his shunt already. It’s not likely; they put in a larger one to be on the safe side. And that was just three months ago. He was meant to keep it for at least a year as far as I understood.

Anyway, they want to do a CT-scan to try and find out why the levels are so low. The kidney-crowd also want to do one to see what’s to be found where the missing kidney should have been. And he has to be anaesthetized on both occasions.

I might be wrong here, but wouldn’t it be easier to check both things on the one occasion? Then Abbe wouldn’t have to be anaesthetized twice? But then again, it’s two separate wards wanting these scans, so it might be a bit far fetched. Believe it or not, they’ve decided to do both in the one go. Good stuff!

Sometimes you have to be silly enough to ask.