The return visits we’ve been to since Abbe’s surgery in July, have all gone really well. His saturation levels have been up on 85% and his heart, the shunt and his vessels all looked fine on the scan (the
ultrasound).
All as it was planned, that is.
20 December 2005
13 December 2005
Lucia
December 13 is Lucia Day in Sweden. A tradition with white gowns, lit candles and children singing.
Abbe’s mother was out of town and we had a Lucia-do to go to at big brother’s kindergarten. There were a few things too many to keep in mind. Sitting on the floor with mulled wine, saffron lucia-buns, gingersnaps … A pointy star-boy’s hat that wouldn’t stay put on big brother’s head and an Abbe-lad who kept falling around the place whenever I tried to put down. On top of which I was meant to be taking photographs.
Necessity is the mother of invention.
15 November 2005
One, two, three – shoot.
When margins are small one does not want the RS-virus or the flu. We’re well aware of it – been there, done that. So all heart-children are vaccinated against the RS and the flu.
The RS vaccine doesn’t fit into one syringe. It’s too big a volume, basically, to give in the one muscle at the one time. Giving two shots in a row wouldn’t be too clever either, the second one will not be welcomed by the little reciever. So they’ve a special trick to get it done.
Two nurses came in and prepared the vaccine in the two sepapate syringes. Wonder why, thought I. Then, all over sudden, “ Allright … one, two, three” and before we knew it they’d put one needle into each leg and the whole thing was over. Just like that.
It caught me by surprise. But it’s clever. One pain. One cry. Done.
It’s to be repeated thrice this winter, though.
The RS vaccine doesn’t fit into one syringe. It’s too big a volume, basically, to give in the one muscle at the one time. Giving two shots in a row wouldn’t be too clever either, the second one will not be welcomed by the little reciever. So they’ve a special trick to get it done.
Two nurses came in and prepared the vaccine in the two sepapate syringes. Wonder why, thought I. Then, all over sudden, “ Allright … one, two, three” and before we knew it they’d put one needle into each leg and the whole thing was over. Just like that.
It caught me by surprise. But it’s clever. One pain. One cry. Done.
It’s to be repeated thrice this winter, though.
30 October 2005
Insurances.
Ever tried to insure a child with a congenital heartdisorder and a chromosome aberration? I have.
It’s common knowledge that one cannot get a life insurance after receiving a death sentence of some sort. That’s understandable. It just wouldn’t work. I mean, it’s a nice enough thought, making sure your loved ones are taken care of after your’e gone, but not for the insurance companies, there’s no business in that. That’s why we were somewhat relieved to have signed up for a Pregnancy-insurance and a Mother and Baby-insurance with Trygg Hansa, before Abbe was born. He was healthy, as far as anyone knew, when we signed up for it. Nice to know we’d be covered.
Or so we believed.
When we claimed the health-insuance part we were told that it’s not valid if the child has “congenital disorders or malfunctions…blah, blah…chromosome aberrations…blah, blah…i.e. Down’s syndrome and congenital heart disorders.” In plain English; all the times when you would really need the insurance.
In other words, completely useless, but a great way of getting customers straight after birth. After a couple of months you receive a letter with an offer of prolonging the insurance and letting it become an ordinary health and accident insurance for your child. And why not for the mother, while you’re at it?
I’ve done some research. An ordinary health-insurance seems to be out of the question. Anything connected to the heart condition or 22q11 is excepted from tha insurance. It doesn’t take much to figure that that about covers everything we might need help with. What we can get is an accident-insurance. Abbe might fall of his bike or hurt himself in some other way so that might come in handy. There’s one exception, though. An insurance company with a different approach towards people with congenital disorders. ACE insurances, it’s called, and it’s not that big in Sweden yet.
Go ACE!
It’s common knowledge that one cannot get a life insurance after receiving a death sentence of some sort. That’s understandable. It just wouldn’t work. I mean, it’s a nice enough thought, making sure your loved ones are taken care of after your’e gone, but not for the insurance companies, there’s no business in that. That’s why we were somewhat relieved to have signed up for a Pregnancy-insurance and a Mother and Baby-insurance with Trygg Hansa, before Abbe was born. He was healthy, as far as anyone knew, when we signed up for it. Nice to know we’d be covered.
Or so we believed.
When we claimed the health-insuance part we were told that it’s not valid if the child has “congenital disorders or malfunctions…blah, blah…chromosome aberrations…blah, blah…i.e. Down’s syndrome and congenital heart disorders.” In plain English; all the times when you would really need the insurance.
In other words, completely useless, but a great way of getting customers straight after birth. After a couple of months you receive a letter with an offer of prolonging the insurance and letting it become an ordinary health and accident insurance for your child. And why not for the mother, while you’re at it?
I’ve done some research. An ordinary health-insurance seems to be out of the question. Anything connected to the heart condition or 22q11 is excepted from tha insurance. It doesn’t take much to figure that that about covers everything we might need help with. What we can get is an accident-insurance. Abbe might fall of his bike or hurt himself in some other way so that might come in handy. There’s one exception, though. An insurance company with a different approach towards people with congenital disorders. ACE insurances, it’s called, and it’s not that big in Sweden yet.
Go ACE!
22 October 2005
The dietist.
We’ve been seeing a dietist. It’s a constant struggle, trying to get Abbe to eat, and they’re helping us us find out the reasons for him not wanting to.
Feeding times are still 07, 10, 13, 16, 19, 23 and 03 and we still give him the milk-free substitute. We still take carefull notes on how many milliliters he actually eats, we dare not do anything else. We’ve also tried giving him puree. It's not going too well.
Why is this such a problem? Is it a technical thing? Does he have anatomical impediments? Mouth-motorics, cleft palate, all that stuff? It’s a huge stress factor, this constant struggle against the weight and length diagrams.
We told the dietist about our DIY-cardex, our lists of Abbe’s milliliters. She smiled and asked:
–How much does he eat in a day?
–Eh…700ml, we answered.
–And does it vary a lot, from day to day?
–No…
–Why don’t you stop taking notes, then, and relax a little? You know pretty well, don’t you? That he’s getting enough?
Sometimes you feel like a complete idiot.
Feeding times are still 07, 10, 13, 16, 19, 23 and 03 and we still give him the milk-free substitute. We still take carefull notes on how many milliliters he actually eats, we dare not do anything else. We’ve also tried giving him puree. It's not going too well.
Why is this such a problem? Is it a technical thing? Does he have anatomical impediments? Mouth-motorics, cleft palate, all that stuff? It’s a huge stress factor, this constant struggle against the weight and length diagrams.
We told the dietist about our DIY-cardex, our lists of Abbe’s milliliters. She smiled and asked:
–How much does he eat in a day?
–Eh…700ml, we answered.
–And does it vary a lot, from day to day?
–No…
–Why don’t you stop taking notes, then, and relax a little? You know pretty well, don’t you? That he’s getting enough?
Sometimes you feel like a complete idiot.
25 September 2005
Parenting classes.
The Centre of Children’s Cardiology in Gothenburg has launched a heart children parenting class project. For two nights, parents of heart kids receive information on all sorts of things related to our children, their conditions and our our situations in general.
A psychologist talked about how relationships are tried on the arrival of a sick child. On the difficulties of having a sick sibling and lots of other interesting things that can be considered and applied in our everyday life.
The dietist talked about how to get heart-children to eat (I wouldn’t mind a follow-up class on that subject) and gave tips on how to maximise the energyvalues of what little they do eat, in order to maintain a good balance. Lots of good tips. Especially if the child is not allergic to cows milk.
The therapist told us about different allowances we can apply for, about LSS (the Act on Support and Service for Persons with Certain Disabilities) and about insurances.
A dental specialist told us to take extra care in looking after our heart-childrens’ teeth. Due to small, frequent, all-hours meals and a poor enamel status due to lack of oxygen, they have a much higher risk of tooth decay and caries.
It was also a great opportunity to meet other parents in the same or a similar situation as ourselves. I hope they’ll keep this up. And develop it. Maybe they already have? Have you heard of classes like these?
A psychologist talked about how relationships are tried on the arrival of a sick child. On the difficulties of having a sick sibling and lots of other interesting things that can be considered and applied in our everyday life.
The dietist talked about how to get heart-children to eat (I wouldn’t mind a follow-up class on that subject) and gave tips on how to maximise the energyvalues of what little they do eat, in order to maintain a good balance. Lots of good tips. Especially if the child is not allergic to cows milk.
The therapist told us about different allowances we can apply for, about LSS (the Act on Support and Service for Persons with Certain Disabilities) and about insurances.
A dental specialist told us to take extra care in looking after our heart-childrens’ teeth. Due to small, frequent, all-hours meals and a poor enamel status due to lack of oxygen, they have a much higher risk of tooth decay and caries.
It was also a great opportunity to meet other parents in the same or a similar situation as ourselves. I hope they’ll keep this up. And develop it. Maybe they already have? Have you heard of classes like these?
2 September 2005
Passing it on?
Approximately 90% of people diagnosed with the 22q11 syndrome have a nymutation, which means that the error in the genetic material appears for the first time with that person and has not been inherited. That’s how it worked with Abbe. My wife and I were tested as soon as it was clear that Abbe had 22q11. Neither of us were carriers.
But if one parent has 22q11 there’s a 50% risk of inheritance for children. So there’s a fifty-fifty risk that Abbe’s children will get the syndrome.
Is that burden too going to rest on his shoulders when he grows up and wants to start a family? I’ve done a good bit of thinking on this matter and felt rather sad the other day when I talked to my big sister (the pediatrician). She said: “Ah, give over, you can’t be worrying about stuff like that? What if he’s gay? There’ll be no problem then, will there?”
How true.
But if one parent has 22q11 there’s a 50% risk of inheritance for children. So there’s a fifty-fifty risk that Abbe’s children will get the syndrome.
Is that burden too going to rest on his shoulders when he grows up and wants to start a family? I’ve done a good bit of thinking on this matter and felt rather sad the other day when I talked to my big sister (the pediatrician). She said: “Ah, give over, you can’t be worrying about stuff like that? What if he’s gay? There’ll be no problem then, will there?”
How true.
28 August 2005
Christening.
Abbe was christened today. A lovely little family ceremony. Big brother thought it all right that Abbe wore a dress, but commented on it being a bit on the large side.
The priest was Icelandic and she happened to be aquainted with Solveig, Abbe’s 22q11 specialist. It’s a small world. Or Iceland is small. In Gothenburg.
20 August 2005
To tell or not to tell.
We talked a bit, my wife and I, on the matter of what to tell people and what not concearning Abbe’s chromosome aberration. I mean, we’re all prejudice. If I say chromosome aberration people hear mongoloid, retarded and so forth. We simply don’t know enough. And to be honest, I didn’t know of many chromosome aberrations but Down’s syndrome, before Abbe was born.
What we don’t want is to give people a set idea of Abbe as a person, risking thet it be self-fulfilling. Like “you become what you’re being treated as”, if you get my point. If we choose to tell, will pre-scool staff, scools, friends and aquaintances see Abbe for who he is or will they be searching for handicaps?
On the other hand, if we don’t tell, they’ll notice anyway. Without a diagnosis, a name for it and an explanation, they might just find him odd. When you know you know. Imagine the amount of explaining one would have to do otherwise.
And yes, you’ve probably guessed what conclusion we came to. So now everybody knows. Including you.
What we don’t want is to give people a set idea of Abbe as a person, risking thet it be self-fulfilling. Like “you become what you’re being treated as”, if you get my point. If we choose to tell, will pre-scool staff, scools, friends and aquaintances see Abbe for who he is or will they be searching for handicaps?
On the other hand, if we don’t tell, they’ll notice anyway. Without a diagnosis, a name for it and an explanation, they might just find him odd. When you know you know. Imagine the amount of explaining one would have to do otherwise.
And yes, you’ve probably guessed what conclusion we came to. So now everybody knows. Including you.
15 August 2005
Food – a battle.
We don’t give Abbe breast-milk anymore. My wife stayed at it for a very long time, but there has to be some sort of a limit. We’ve left the pump back and our basement is full of jars labeled Profylac. It’s a milk free substitute. Or, rather, it’s based on cows milk but the proteins in it have been tamperred with so that sensitive little tummies can deal with them. The consequence being that it tastes nothing like milk. It’s rather disgusting, as it were, undrinkable in my oppinion. Bitter as methylated. But milk free.
No wonder Abbe wont eat. On the other hand, he was just as reluctant when the yummy mother’s milk was on offer. They say feeding problems are common among heart children in general and 22q11 children in particular. So he’s kind of top scoring there, I suppose.
Sometimes he’ll slurp down his 130 ml of Profylac in less than a half an hour. Sometimes.On a perfect day. The right temperature, no colds, no blisters anywhere and preferably just the two of us, at home in our living room. Most of the times it’ll take an hour or more to get him to eat the smallest required amount. And a lot of the times he’ll end up screeching with panic, refusing to eat altogether.
Had he been an avarage baby, we probably would have left it at that. Thinking – Ah well, he’ll eat when he’s hungry. But it’s different with heart babies. He needs to eat every third hour to keep up with his weight and length curves. And he needs to eat a certain amount daily or the curves will (dala) even more.
It’s an ongoing struggle. Tough, tiresome and a constant source of stress and worries. Some days we’ll find ourselves (en hårsmån) away from giving it all up. What keeps us going then is knowing what the option is. Enteral nutrition. He’s not having food through a tube up his nose. Not if we can help it.
No wonder Abbe wont eat. On the other hand, he was just as reluctant when the yummy mother’s milk was on offer. They say feeding problems are common among heart children in general and 22q11 children in particular. So he’s kind of top scoring there, I suppose.
Sometimes he’ll slurp down his 130 ml of Profylac in less than a half an hour. Sometimes.On a perfect day. The right temperature, no colds, no blisters anywhere and preferably just the two of us, at home in our living room. Most of the times it’ll take an hour or more to get him to eat the smallest required amount. And a lot of the times he’ll end up screeching with panic, refusing to eat altogether.
Had he been an avarage baby, we probably would have left it at that. Thinking – Ah well, he’ll eat when he’s hungry. But it’s different with heart babies. He needs to eat every third hour to keep up with his weight and length curves. And he needs to eat a certain amount daily or the curves will (dala) even more.
It’s an ongoing struggle. Tough, tiresome and a constant source of stress and worries. Some days we’ll find ourselves (en hårsmån) away from giving it all up. What keeps us going then is knowing what the option is. Enteral nutrition. He’s not having food through a tube up his nose. Not if we can help it.
9 August 2005
Childcare allowance.
I know. It’s not the first thing that springs to mind when you find out that your child is ill. But after a while, when the chock has settled and life starts trodding along, you realise. It’s not for free.
Medicins, special food, travelexpenses and parkingfees for all the trips to hospital and doctors, lost incomes and so on. And what’ll it be like in future? How much special care will he need? Will he be going to an ordinairy school? What’s all that going to cost? Will we be able to work full time?
At hospital they advised us to apply for childcare allowance. I had never heard of it til then. But still. It’s dealt out by the the Swedish Social Insurance Agency and anyone who’s ever tried to fill in one of their forms for parental benefit will understand how ominous this sounds.
After a few hours of thinking, twisting words and turning them, we’ve finally filled in all the pages of the application form, got the doctor’s testimony to go along with it, stamped it and posted it. I’ve been told that they’ll now call us to some sort of an interview, where we’ll have to tell the whole story once more. Effectiveness the Swedish Social Insurance Agency style.
Medicins, special food, travelexpenses and parkingfees for all the trips to hospital and doctors, lost incomes and so on. And what’ll it be like in future? How much special care will he need? Will he be going to an ordinairy school? What’s all that going to cost? Will we be able to work full time?
At hospital they advised us to apply for childcare allowance. I had never heard of it til then. But still. It’s dealt out by the the Swedish Social Insurance Agency and anyone who’s ever tried to fill in one of their forms for parental benefit will understand how ominous this sounds.
After a few hours of thinking, twisting words and turning them, we’ve finally filled in all the pages of the application form, got the doctor’s testimony to go along with it, stamped it and posted it. I’ve been told that they’ll now call us to some sort of an interview, where we’ll have to tell the whole story once more. Effectiveness the Swedish Social Insurance Agency style.
5 August 2005
Nuchal scan.
I found an interesting paper today, that I had completely forgotten
about. Before Abbe was born, my wife went to Linköping to do a so called
Nuchal scan. It’s an extended ultra sound scan where they take a closer
look at the thickness of soft tissues of the nape of neck of the fetus. They also
take a closer look at the heart. All to find out if there might be any
chromosome aberrations, Down’s syndrome, or the likes of it.
Our journal reads; “The risk of carrying a foetus with Down’s syndrome
was before the scan 1/190 (age risk) and after the scan 1/1573 (age +
NUPP 1.5mm)”
1 out of 1573. That’s a pretty small risk. But of course it doesn’t
mention the 22q11 syndrome.
On the other hand. Had the risk of having a child with Down’s syndrome
been 100%, he or she would have been just as welcome. And had I known
then that Abbe was to have the problems that he has, I still wouldn’t
have given it a second thought. No way.
about. Before Abbe was born, my wife went to Linköping to do a so called
Nuchal scan. It’s an extended ultra sound scan where they take a closer
look at the thickness of soft tissues of the nape of neck of the fetus. They also
take a closer look at the heart. All to find out if there might be any
chromosome aberrations, Down’s syndrome, or the likes of it.
Our journal reads; “The risk of carrying a foetus with Down’s syndrome
was before the scan 1/190 (age risk) and after the scan 1/1573 (age +
NUPP 1.5mm)”
1 out of 1573. That’s a pretty small risk. But of course it doesn’t
mention the 22q11 syndrome.
On the other hand. Had the risk of having a child with Down’s syndrome
been 100%, he or she would have been just as welcome. And had I known
then that Abbe was to have the problems that he has, I still wouldn’t
have given it a second thought. No way.
21 July 2005
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.
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.
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.
Congratulations!
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.
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.
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.
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.
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.
Denmark
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.
30 June 2005
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.
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.
29 June 2005
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.
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.
27 June 2005
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.
24 June 2005
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!
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!
21 June 2005
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.
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.
20 June 2005
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?
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?
6 June 2005
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.
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.
30 May 2005
The older the wiser?
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.
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.
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.
29 April 2005
Good-bye Von Rosen.
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.
26 April 2005
Return visit.
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.
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.
13 April 2005
DIY cardex.
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.
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.
9 April 2005
8 April 2005
Stretching the limits.
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.
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.
7 April 2005
Cutting the cord.
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?
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?
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