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.
30 May 2005
28 May 2005
One kidney.
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?
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?
19 May 2005
18 May 2005
Superman.
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.
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.
10 May 2005
Bouncing.
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.
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.
8 May 2005
RS and pneumonia.
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.
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.
5 May 2005
Immune system ok.
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.
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.
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