Go Abbe

Welcome!

noreply@blogger.com (Abbes pappa) — Thu, 08 Sep 2011 22:21:00 +0000

This is how it is. This post will be at the top for a while. That does not mean that nothing happens in here. You see, the blog was originally written in Swedish and it is currently being translated post by post, from March 2005 until the present date. It'll take time, since I'm also updating the swedish version of this blog on a on a daily basis.

Eventually I will catch up with the present, then this particular post will be gone.

Enjoy.

The kidney.

noreply@blogger.com (Abbes pappa) — Wed, 29 Jun 2005 19:35:00 +0000

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

noreply@blogger.com (Abbes pappa) — Mon, 27 Jun 2005 18:21:00 +0000

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.

noreply@blogger.com (Abbes pappa) — Fri, 24 Jun 2005 16:43:00 +0000

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.

noreply@blogger.com (Abbes pappa) — Tue, 21 Jun 2005 18:32:00 +0000

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.

noreply@blogger.com (Abbes pappa) — Mon, 20 Jun 2005 21:03:00 +0000

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.

noreply@blogger.com (Abbes pappa) — Mon, 20 Jun 2005 20:46:00 +0000

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.

noreply@blogger.com (Abbes pappa) — Mon, 06 Jun 2005 17:14:00 +0000

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.

The older the wiser?

noreply@blogger.com (Abbes pappa) — Mon, 30 May 2005 20:38:00 +0000

Three cardiologists stood around Abbe and the ultrasound machine when we entered room 3, that weird day in March. The day we learnt that Abbe had a heart-condition.

There was this young guy doing the scan and telling the others what he saw. Another was a senior lecturer, and the last one the head of the ward. When the young guy left, the senior lecturer did another scan and kept talking to his colleague. I didn’t get all the terminology but I did gather that the young guy was new and that the other two were impressed by his diagnosis. “Not bad, how he could see this and that.” We later found out that the guy who left had just become a pediatrician and that he was now specialising in cardiology.

During our return visit we found out that the new guy was to be Abbe’s doctor. Of course. So bloody typical. Of all the merited and experienced doctors on the children’s cardiology ward, it had to be the rookie. The beginner. The inexperienced. It’s my child’s life you’re messing with, god damn it.

Today I regret ever having reasoned like that. Abbe’s doctor is great. He’s ever so kind, deeply committed and he handles Abbe brilliantly. He helps out dealing with all the other specialists, even when it’s got nothing to do with Abbe’s heart. Whenever he feels the need to, he consults the other cardiologists. We’re lucky to have him.

I was wrong. I'm sorry.

One kidney.

noreply@blogger.com (Abbes pappa) — Sat, 28 May 2005 20:09:00 +0000

One of the not so common symptoms of DiGeorge is some urinary tract problem or other. Since Abbe was in Solveig’s care, we were sent for a scan a couple of days ago, to try and rule out any such problems.

It was a routine scan, just like the ones they’ve done on his heart so many times by now, only slightly lower on his body, of course. The doctor was sliding the ultrasound tool around on Abbes belly for a long, long time, and then said, “Look at the screen and I’ll tell you what we’re looking at.” We looked. And I felt it coming. “This is one of Abbe’s kidneys, and this is where the other one should have been. There’s something there that I can’t say much about with just a scan, we’ll have to look into that, but he only has one kidney, anyway”.

Of course, I thought. why wouldn’t he be lacking a kidney?

noreply@blogger.com (Abbes pappa) — Thu, 19 May 2005 19:57:00 +0000

Superman.

noreply@blogger.com (Abbes pappa) — Wed, 18 May 2005 18:43:00 +0000

After nine more days in hospital we’re back at home. The pneumonia is gone, so is the RS-virus, and Abbe is, all things considered, well.

My wife finds the nights in hospital hard to cope with. She doesn’t get much sleep, she worries and then there are the check-ups every three hours throughout the night. So we arranged it for her to sleep at home with our two-year-old, but spent the days in hospital while he's in child-care. Which means I spend the nights in hospital. I leave there for work in the morning, and come back at night.

When we were going home, the doctor sorted out a few prescriptions, and also some insurance forms for me. I told him that those forms wouldn’t be needed, since I’d been working all along. He gave me a surprised look and said; “And who are you? Superman?”

In hindsight I’ll admit it wasn’t the cleverest of things to do.

Bouncing.

noreply@blogger.com (Abbes pappa) — Tue, 10 May 2005 18:22:00 +0000

I’m happy to be back in ward 323. Waiting in the emergency ward, watching Abbe get worse by the minute was no fun. When they wanted to check us in I felt the lump in my throat again, growing. This must be serious. Or they’d have sent us home, right?

But when the visiting room door opened, I saw two red coats from the heart ward and two familiar faces to go with them. “What are you doing back so soon? Thought I’d told you to stay away?” said one of them, smiling. And I felt at home, calm and secure in an instant.

Abbe and I are isolated now, in a room with an airlock leading out into the corridor, because of the contamination risk. Everything leaving the room must be carefully disinfected and if I have to get food or coffee, a nurse has to come and take over since Abbe’s not allowed out of the room. He’s not feeling so well, but with oxygen, antibiotics, expectorant inhalations, nose spray and bouncing I think he’ll struggle his way out of this one too.

Bouncing? Well, it looks rather funny. The nurses put Abbe on top of a gigantic ball. At least a meter in diameter, and then they bounce him up and down on it. On his back and on his side. It helps dissolve the phlegm in his lungs and airways and makes him breathe deeply rather than the shallow gasps for air he can manage on his own. Strange things are happening. One can’t help but wonder how anyone ever came up with that idea.

Yes, yes, I said red coats, I know. Most of them are.

noreply@blogger.com (Abbes pappa) — Sun, 08 May 2005 19:16:00 +0000

Expectorant inhalation.

RS and pneumonia.

noreply@blogger.com (Abbes pappa) — Sun, 08 May 2005 19:02:00 +0000

The day after we found out that Abbe’s immune system was all right he caught a cold. I love the irony of that, don’t you?

He developed a cough, his nose got stuffy and he had a hard time breathing. His temperature rose quickly. We were on and off the phone with the pediatric heart ward and when his temperature got as high as 40° C, they told us to go to the children’s emergency ward. The nurse said “We’ll call and let them know that there’s a heart-child coming in, so you won’t have to sit in the waiting room with all the others”.

One of our friends who happened to be visiting was left with Abbe’s brother, waiting for Granny and Grandad to arrive. There she was, stuck with a two-year-old watching teletubbies while we rushed to the hospital. We arrived, were sent on to the heart ward, and here I am, again, writing.

RS is a common cold virus that turns up every winter/spring. For an adult it brings on a heavy cold with a lot of phlegm and a temperature. For babies it’s serious, sometimes even lethal. For heart-children the risks are obvious. And if your blood already has low oxygen saturation, breathing difficulties aren’t going to help. In other words, Abbe’s a lot worse off than the rest of us would be with the RS-virus. He also developed double-sided pneumonia, along with the virus. We’ve seen better days.

Immune system ok.

noreply@blogger.com (Abbes pappa) — Thu, 05 May 2005 20:13:00 +0000

Now that the first heart surgery is over and it'll be a year or so till the next one, things are sneaking up on me. What will the consequences of the 22q11 deletion syndrome be?

Does he have a cleft palate? How can you tell? Does it show? I mean, I can see for myself that he’s not harelipped, but are there other types of cleft palates, ones that don’t show? And what if he has a lowered immune system? What then? Will we have to isolate ourselves in the future, for fear of risking Abbe’s health? What kind of life would that be? For us? For him?

And yesterday we met Solveig again. We talked about the syndrome in general and Abbe in particular. At the time of the surgery, they ran loads of tests to analyze his immune system and Solveig told us the results. “It looks really well. Better than you’d expect in a DiGeorge-child, and normal ones compared to a healthy child.” she said. Such joy and relief.

Good-bye Von Rosen.

noreply@blogger.com (Abbes pappa) — Fri, 29 Apr 2005 18:52:00 +0000

Today Abbe was let out of the splint. Instead he’s been given a frejka pillow splint. Just like the Von Rosen it keeps his legs at an outward angle, like a little frog. The great advantage is that it can be taken off at home and that means that every time we change Abbe’s nappie he gets to wiggle his legs about freely for a few seconds.

Best of all though – he can bathe at home.

Return visit.

noreply@blogger.com (Abbes pappa) — Tue, 26 Apr 2005 19:36:00 +0000

It’s now been almost two weeks since we left the safe haven of the hospital with help at the press of a button, for a life at home. With a half hour drive to hospital, at best. To my own huge surprise, the fear only lasted for a couple of days. It didn’t get any worse. We’re all right at home; we manage without all the great people at the 323-ward, even though I miss them at times.

Once a week we take Abbe to the orthopaedists to give him his bath. A nurse takes the splint off and leaves us in a room with a tiny bathtub and a few cloths. A quiet moment to ourselves with our baby, happily splashing around in the warm water. Naked. No splint, no nothing. Just Abbe. My favourite time of the week.

We’ve been for a few return visits at the heart clinic as well. Abbe’s not following the desired weight-curve. Big sigh. The oxygen saturation level is not improving either. Another big sigh.

DIY cardex.

noreply@blogger.com (Abbes pappa) — Wed, 13 Apr 2005 20:10:00 +0000

In hospital great care was put into keeping book of everything Abbe ate. On something called a cardex, notes were taken on (in addition to pulse, pox, temperature and other important things) every millilitre of food, whether taken by bottle or probe. And every nappie was weighed to see how much came out the other end. Like some sort of a nutritional balance account. I suppose it’s to know when extra resources are needed, drips and such.

When Abbe was released out last week he weighed 3875 grams. That is, 25 grams less than when he was born. Instead of having gained the half kilogram or so that would be normal during your first three weeks, he’s lost a little weight.

We’ve kept taking notes. Not the nappies, we don’t give a shit about them (haha). But we do keep record of how much he eats. Feeding times are still complicated and time consuming. One time runs into the other in a marathon-like blur and it’s hard to keep track of how much he actually eats. So I sat down at the computer and put together a cardex of our own. It might seem a on the edge, but I figure it's better to be safe than sorry.

noreply@blogger.com (Abbes pappa) — Sat, 09 Apr 2005 21:55:00 +0000

My brother. My very own little brother.

At home.

noreply@blogger.com (Abbes pappa) — Sat, 09 Apr 2005 21:24:00 +0000

What can I say? Wonderful and scary at the same time.

Stretching the limits.

noreply@blogger.com (Abbes pappa) — Fri, 08 Apr 2005 08:49:00 +0000

It’s been three weeks since we got here. Three long weeks since we came stumbling in to room 3. What a roller coaster ride it’s been. News, chock, waiting, surgery, fear, calm, more news, chock, waiting, waiting and yet more waiting.

The surgeons had planned for Abbe to have a saturation-level of 80-85% after surgery. There have been several theories on why he’s not getting more than 70-75%. One is that his blood vessels might have “cramped” a bit after surgery. That they’ve not been used to the larger flow of blood that the correction brought on and responded by contracting somewhat. That sounds plausible to my layman ears. So they’ve been waiting for it to change.

Two weeks have passed and it still hasn’t. The saturation-meter (the pox) has been on constant alert. “Ah well, 70% will have to do”, said the doctors and lowered the alert-level on the meter.

– Well now it doesn’t beep, they said, you’re free to go home.

Cutting the cord.

noreply@blogger.com (Abbes pappa) — Thu, 07 Apr 2005 17:38:00 +0000

I don’t know if you have children. If you’ve experienced that peculiar feeling when you’re leaving the maternity ward and suddenly realise that it’s for real.

In hospital it’s all so well laid out. Food is served at set times, midwives help out, telling mommies how best to feed their babies. How do you wash the sore from the umbilical cord, how do you change nappies and what about the vitamins? They know such things. It’s like checking in to a theme-hotel. “Welcome to the Mum-dad’n-baby-inn – the hotel with full family focus”.

Then you get home. You walk through the door of your own home, your furniture, your bathroom and your CD’s. That’s when it dawns on you. “Shit, he’s staying here now!”. You can’t leave him (or her, for that matter) back, he’s for real. We’ll have to manage on our own now. Without the theme-hotel midwives.

If you’ve been there, I’m sure you’ve also been through the phase where you spend most of your waken hours watching your baby. When you peep into the cot over and over again, just to make sure they’re breathing. At least eighteen times a day.

I’ve been there. I already have a son. One without a heart condition. Here’s what I’d like to know: how the hell do I find the courage to bring Abbe home?

With a little help from my friends.

noreply@blogger.com (Abbes pappa) — Thu, 07 Apr 2005 10:46:00 +0000

Bunny Rabbit holds the funnel.

Percentages.

noreply@blogger.com (Abbes pappa) — Wed, 06 Apr 2005 21:14:00 +0000

The oxygen-muzzle is gone. As is the probe. If you ignore (a contradiction in terms) the Von Rosen splint, Abbe almost looks like a normal baby now. Except for the huge scar across his chest, that is.

It’s nice to be rid of the probe. He can now be bottle-fed. It’s a hell of a struggle, though. Requires a lot of patience. 70-80 ml of mother’s milk will take between half an hour and an hour. By that time he’ll soon need to be fed again. But so be it. I desperately want him to learn. They’ve told us that heart-children often have feeding problems. So do DiGeorge-kids. Jackpot.

And. Like I said, no more muzzle. The small amount of oxygen he still needs is given to him through a funnel. As far as I understand, that’s what we’re waiting for now. For the oxygen-saturation level in his blood to rise. When it does, we’re going home.