Infection lands Cody back in hospital
Nelson Wednesday, 12 March 2008
A rare complication-free period has come to an end for seriously ill Nelson teenager Cody Walsh, who has been hospitalised for another week.
Cody, 16, has a rare and potentially fatal condition where the bowel sits incorrectly in the body and in September last year he had an emergency operation to remove most of his upper and lower intestine.
Now he is largely fed a glucose solution directly into his bloodstream via a device known as a Hickman line.
His only chance of eating normally again is an upper intestine and liver transplant in Toronto, Canada, at a cost exceeding $1 million.
Infections have meant he has come close to death a number of times.
He was the subject of a feature article in Saturday's Nelson Mail.
He had not had any major complications for more than three weeks - the longest period since he was diagnosed in September.
However, family friend Nyle Sunderland said Cody was rushed to Nelson Hospital on Saturday with a high temperature.
Tests showed he had a blood infection which had got into his feeding line.
There were fears the infection would mean moving the feeding tube to another artery, which would jeopardise an eventual transplant, but the infection was not bad enough to warrant that. Cody was expected to be in hospital for the rest of the week .
A blog - www.codywalsh.blogspot.com - has been set up to help raise funds and awareness of Cody's plight.
Donations can also be made to the Cody Walsh Transplant Fund at any Westpac branch or in collection tins at bars and cafes in Nelson.
Wednesday, March 12, 2008
Monday, March 10, 2008
Nelson Mail Feature
Courageous Cody and the pain of life
By TOM HUNT - Nelson Saturday, 08 March 2008
FACING DOWN DEATH: Cody Walsh has survived seemingly insurmountable odds.
Irony doesn't come much crueller - a young Nelson man aspires to become a chef, only to have roughly 90 percent of his lower and upper intestines removed.
The chances of 16-year-old Cody Walsh eating normally again are slim.
His chances of becoming a chef are less, and the chances of reaching his 21st birthday aren't that much better.
Cody and his family have pinned their hopes on a dangerous bowel and liver transplant, after which he has a greater than 50 percent chance of surviving fewer than five years.
It is also an expensive operation that would require Cody and his mother to spend up to a year in Toronto, Canada, at a cost close to $1 million.
It is money they don't have.
In the meantime, he relies for most of his sustenance on a feeding system known as TPN, or total parenteral nutrition, where a glucose solution is fed directly into a major artery, bypassing the need for the lower and upper intestine. If it doesn't sound like much of a life, it looks even worse when the risks it carries are considered.
Sitting in his family's small house near the Centre of New Zealand, Cody is pragmatic, almost buoyant, about the situation he has found himself in. He is an affable young man who enjoys playing guitar and computer games and regularly gets up to eight friends visiting at home each day.
He says he goes through "ups and downs" in itself a euphemism from a teenager who has faced death numerous times in the past six months.
"There's no point moaning about it, you know. That isn't going to help."
A lifetime of agonising, recurring stomach pains led to the day in September last year when Cody was rushed into an emergency operation after suffering what is known as mid-gut strangulation.
The complications came from a birth abnormality called malrotation volvulus, where the bowel sits incorrectly in the body. In September, the two parts of the bowel started twisting around each other, causing the perilous "strangulation".
This pain was far worse than any he had felt before, prompting him to describe it shortly afterwards as "like a thousand knife stabs".
The frightening fact is that if he had not had the operation to remove most of both intestines, he would have died within the hour.
Multiple operations and complications since have seen him spend at least 1400 hours, or the equivalent of two solid months, in hospitals since then.
One of those stints involved an operation that was very new with uncertain success rates, where the tiny remaining parts of his upper and lower intestines were joined.
It meant the upper intestine had to teach itself to work with the lower intestine and absorb food.
So far, it appears to be working to an extent.
Since January, Cody has been able to eat a handful of food each day, as well as drink small amounts of liquids.
Admittedly, most of it is later vomited up. Even so, just being able to eat after four months of being fed only by tube is a big step forward especially given that the glucose solution puts additional stress on his liver.
The first solid food after all those months was toast.
"It was good," says Cody, who now eats a wide variety, steering away from chocolate and high-fat foods which can put further stress on the liver.
But in many ways, he is faced with a lose-lose situation.
Cody still has to get the lion's share of his nutrients directly from the glucose solution, which means being stuck at home and plugged into a machine, while his liver suffers damage.
The transplant would seem like the logical solution but it is not clear-cut, either.
The huge cost is one thing, but then there is the greater than 50 percent chance that the operation will lead to his death within five years.
The only option is to remain on the glucose solution until bowel transplant survival rates increase.
This involves a steadily rising risk of liver failure, blood clots and metabolic problems, not to mention potentially deadly line infections caused by the glucose feeding system. Cody has already had three line infections.
At one point in January, an infection pushed his temperature so high that brain damage was a threat.
Cody points out he is down to the last three of five usable major arteries for the TPN treatment, after line infections took out the viability of two.
He needs two of those in use for when he has the operation, meaning one more line infection that takes out an artery could bring the need for the transplant drastically forward.
His surgeon at Nelson Hospital, Alf Deacon, who diagnosed his condition and has been in charge of Cody's case, is the first to admit that he is treading new ground with this case - the first malrotation volvulus case he has seen in a fully grown person.
"Cody's condition has been a steep learning curve for myself, the dietitian, the nurses, emergency department staff and the social worker involved in his care.
"It is an absolute team effort to keep him alive and well," Deacon says.
The condition is more common in babies and, at that stage, also relatively easily fixed.
But in adults, which for most medical reasons Cody is considered, the case is rare.
Current statistics for the liver and small bowel transplant show that, if Cody raised the money and got the Toronto operation now, there would be a 70 percent chance of him surviving two years, and a 40 percent chance of surviving five.
It is still a new operation, full of difficulties, and for a doctor looking at the numbers, keeping Cody on his present treatment is far preferable - even if the quality of life is far less than a 16-year-old should have to endure. Deacon says that is the pay-off Cody has to make for simply going on living.
In contrast, the chances of him surviving on the TPN regime are significantly better within two years, there is a 90 percent chance he will be alive, in five years 75 percent.
But there will still likely to be a day when Cody will have to sit down with doctors and decide whether the risks of complications with TPN outweigh the risks of transplantation.
Deacon, and Cody, hope that day comes later rather than sooner.
In the meantime, Deacon is in regular contact with the Toronto transplant team, giving them regular updates on Cody's progress and liver function.
"According to their transplant surgeon, we have done everything right so far."
Because no one in New Zealand is a specialist on the condition, a major source of information for doctors and Cody's family comes from a website dedicated to bowel transplantation.
It is here the frightening facts are lined up.
The operation was first tried in the 1960s, but all who had it died until the first successful procedures in the mid-1980s.
In the more than 20 years since the first successful bowel transplants, only about 100 patients have been able to fully stop TPN feeding, resume a normal diet and enjoy a healthy lifestyle.
Almost from day one, Cody and his family have had a staunch advocate in family friend Nyle Sunderland.
It was Sunderland who, while Cody was recovering from the initial operation in Christchurch Hospital, kicked the fundraising drive into action, contacting media outlets about Cody's dilemma.
At the time, it was thought that money, not danger, was the only thing that was standing in the way of the operation and following articles in the Nelson Mail, New Idea and a blog about the cause, donations flowed in.
They also flowed back out, as donation tins for the transplant were stolen from cafes at bars around Nelson. The culprit, Jason Peter Rochford, 22, was later caught, sentenced to nine months in jail and labelled as "pond scum" by the sentencing judge. He was also ordered to pay $650 reparation to the Cody Walsh Treatment Fund, but Sunderland says she has not seen a cent of the money and doubts it will ever arrive.
So far, about $11,000 has been raised and Sunderland says that recently hearing that the transplant will be delayed by years has been a good thing.
It, of course, gives them more time to raise funds, but also means that finances are not standing in the way of an immediate cure.
But like Cody, his family and doctors, Sunderland is realistic about the situation and the many perils line infections, liver failure, a dwindling number of viable arteries, as well as the eventual risk of a transplant. As she puts it, Cody Walsh and his many supporters are effectively "playing Russian roulette with everything".
By TOM HUNT - Nelson Saturday, 08 March 2008
FACING DOWN DEATH: Cody Walsh has survived seemingly insurmountable odds.
Irony doesn't come much crueller - a young Nelson man aspires to become a chef, only to have roughly 90 percent of his lower and upper intestines removed.
The chances of 16-year-old Cody Walsh eating normally again are slim.
His chances of becoming a chef are less, and the chances of reaching his 21st birthday aren't that much better.
Cody and his family have pinned their hopes on a dangerous bowel and liver transplant, after which he has a greater than 50 percent chance of surviving fewer than five years.
It is also an expensive operation that would require Cody and his mother to spend up to a year in Toronto, Canada, at a cost close to $1 million.
It is money they don't have.
In the meantime, he relies for most of his sustenance on a feeding system known as TPN, or total parenteral nutrition, where a glucose solution is fed directly into a major artery, bypassing the need for the lower and upper intestine. If it doesn't sound like much of a life, it looks even worse when the risks it carries are considered.
Sitting in his family's small house near the Centre of New Zealand, Cody is pragmatic, almost buoyant, about the situation he has found himself in. He is an affable young man who enjoys playing guitar and computer games and regularly gets up to eight friends visiting at home each day.
He says he goes through "ups and downs" in itself a euphemism from a teenager who has faced death numerous times in the past six months.
"There's no point moaning about it, you know. That isn't going to help."
A lifetime of agonising, recurring stomach pains led to the day in September last year when Cody was rushed into an emergency operation after suffering what is known as mid-gut strangulation.
The complications came from a birth abnormality called malrotation volvulus, where the bowel sits incorrectly in the body. In September, the two parts of the bowel started twisting around each other, causing the perilous "strangulation".
This pain was far worse than any he had felt before, prompting him to describe it shortly afterwards as "like a thousand knife stabs".
The frightening fact is that if he had not had the operation to remove most of both intestines, he would have died within the hour.
Multiple operations and complications since have seen him spend at least 1400 hours, or the equivalent of two solid months, in hospitals since then.
One of those stints involved an operation that was very new with uncertain success rates, where the tiny remaining parts of his upper and lower intestines were joined.
It meant the upper intestine had to teach itself to work with the lower intestine and absorb food.
So far, it appears to be working to an extent.
Since January, Cody has been able to eat a handful of food each day, as well as drink small amounts of liquids.
Admittedly, most of it is later vomited up. Even so, just being able to eat after four months of being fed only by tube is a big step forward especially given that the glucose solution puts additional stress on his liver.
The first solid food after all those months was toast.
"It was good," says Cody, who now eats a wide variety, steering away from chocolate and high-fat foods which can put further stress on the liver.
But in many ways, he is faced with a lose-lose situation.
Cody still has to get the lion's share of his nutrients directly from the glucose solution, which means being stuck at home and plugged into a machine, while his liver suffers damage.
The transplant would seem like the logical solution but it is not clear-cut, either.
The huge cost is one thing, but then there is the greater than 50 percent chance that the operation will lead to his death within five years.
The only option is to remain on the glucose solution until bowel transplant survival rates increase.
This involves a steadily rising risk of liver failure, blood clots and metabolic problems, not to mention potentially deadly line infections caused by the glucose feeding system. Cody has already had three line infections.
At one point in January, an infection pushed his temperature so high that brain damage was a threat.
Cody points out he is down to the last three of five usable major arteries for the TPN treatment, after line infections took out the viability of two.
He needs two of those in use for when he has the operation, meaning one more line infection that takes out an artery could bring the need for the transplant drastically forward.
His surgeon at Nelson Hospital, Alf Deacon, who diagnosed his condition and has been in charge of Cody's case, is the first to admit that he is treading new ground with this case - the first malrotation volvulus case he has seen in a fully grown person.
"Cody's condition has been a steep learning curve for myself, the dietitian, the nurses, emergency department staff and the social worker involved in his care.
"It is an absolute team effort to keep him alive and well," Deacon says.
The condition is more common in babies and, at that stage, also relatively easily fixed.
But in adults, which for most medical reasons Cody is considered, the case is rare.
Current statistics for the liver and small bowel transplant show that, if Cody raised the money and got the Toronto operation now, there would be a 70 percent chance of him surviving two years, and a 40 percent chance of surviving five.
It is still a new operation, full of difficulties, and for a doctor looking at the numbers, keeping Cody on his present treatment is far preferable - even if the quality of life is far less than a 16-year-old should have to endure. Deacon says that is the pay-off Cody has to make for simply going on living.
In contrast, the chances of him surviving on the TPN regime are significantly better within two years, there is a 90 percent chance he will be alive, in five years 75 percent.
But there will still likely to be a day when Cody will have to sit down with doctors and decide whether the risks of complications with TPN outweigh the risks of transplantation.
Deacon, and Cody, hope that day comes later rather than sooner.
In the meantime, Deacon is in regular contact with the Toronto transplant team, giving them regular updates on Cody's progress and liver function.
"According to their transplant surgeon, we have done everything right so far."
Because no one in New Zealand is a specialist on the condition, a major source of information for doctors and Cody's family comes from a website dedicated to bowel transplantation.
It is here the frightening facts are lined up.
The operation was first tried in the 1960s, but all who had it died until the first successful procedures in the mid-1980s.
In the more than 20 years since the first successful bowel transplants, only about 100 patients have been able to fully stop TPN feeding, resume a normal diet and enjoy a healthy lifestyle.
Almost from day one, Cody and his family have had a staunch advocate in family friend Nyle Sunderland.
It was Sunderland who, while Cody was recovering from the initial operation in Christchurch Hospital, kicked the fundraising drive into action, contacting media outlets about Cody's dilemma.
At the time, it was thought that money, not danger, was the only thing that was standing in the way of the operation and following articles in the Nelson Mail, New Idea and a blog about the cause, donations flowed in.
They also flowed back out, as donation tins for the transplant were stolen from cafes at bars around Nelson. The culprit, Jason Peter Rochford, 22, was later caught, sentenced to nine months in jail and labelled as "pond scum" by the sentencing judge. He was also ordered to pay $650 reparation to the Cody Walsh Treatment Fund, but Sunderland says she has not seen a cent of the money and doubts it will ever arrive.
So far, about $11,000 has been raised and Sunderland says that recently hearing that the transplant will be delayed by years has been a good thing.
It, of course, gives them more time to raise funds, but also means that finances are not standing in the way of an immediate cure.
But like Cody, his family and doctors, Sunderland is realistic about the situation and the many perils line infections, liver failure, a dwindling number of viable arteries, as well as the eventual risk of a transplant. As she puts it, Cody Walsh and his many supporters are effectively "playing Russian roulette with everything".
Saturday, March 8, 2008
Cody admitted to Ward 10
Today a feature article was printed in the Nelson Mail. Cody was really pleased how it was presented and that it was factual and hard to read at times. Cody has had two great weeks of well health and we are so very thankful for that.
Sadly...............Cody's temp spiked this afternoon and after having a great run of well health has been admitted to hospital. Please keep your fingers crossed and pray its NOT a line infection.
Cody can not afford to loose another vein. It is something we are all not ready to face yet. Please send prayers of support and hope or just keep your fingers and toes crossed that he will recover quickly and he will be back home before we know it.
this is the photo that goes with the article.....(I will paste it on here as soon as The Nelson Mail will email it to me)
Wednesday, February 27, 2008
New Idea
A big thanks to the New Idea for publishing Cody's Story. It has brought about a large interest in this blog and has increased the donations at the Westpac Bank.
Cody has had a very quiet week...............which is actually GREAT news!!!! No flying trips to the hospital, no dramas.......... just Cody being his normal self. Right back to his wacky sense of humour even :0)
A fundraising idea has been born from the Nelson Half Marathon held here in May. I have given out sponsorship forms to approx 40 people competing in it and have also got the Athletics club behind it too. They have the forms on their website for anyone to down load. The idea is that each competitor asks at least 10 people to sponsor them at $1 per km. Meaning the most anyone person would pay out is $21 or more if they wish to just donate. If I can get 100 people to do this and get at least $210 from each form....................well you get the picture. So to all in Nelson..................get behind anyone you know competing in this event and listen out for the advertising on the radio and in the paper.
Cody has had a very quiet week...............which is actually GREAT news!!!! No flying trips to the hospital, no dramas.......... just Cody being his normal self. Right back to his wacky sense of humour even :0)
A fundraising idea has been born from the Nelson Half Marathon held here in May. I have given out sponsorship forms to approx 40 people competing in it and have also got the Athletics club behind it too. They have the forms on their website for anyone to down load. The idea is that each competitor asks at least 10 people to sponsor them at $1 per km. Meaning the most anyone person would pay out is $21 or more if they wish to just donate. If I can get 100 people to do this and get at least $210 from each form....................well you get the picture. So to all in Nelson..................get behind anyone you know competing in this event and listen out for the advertising on the radio and in the paper.
Tuesday, February 12, 2008
Cody's Hickman Line
On Thursday, Cody goes back into hospital. This time for general surgery to remove his old split hickman line. This is normally done under local but when they inserted the new line they discovered that Codys old hickman line has grown into his body and now needs to be surgically removed.
This is not the best news for us as we really dont want Cody to have any surgery he really doesnt need to have.
With the last hickman being inserted into a new vein it was a little distressing for us to be told that he has used 3 of his 6 available veins. He must have 2 good veins left for transplant.
We have a meeting in two weeks with the surgical team and will be asking them to clarify what this means for us and Cody.
Cody's story has been published in New Idea. The feed back has been wonderful and very supportive. I just hope that NZ gets behind us and helps us to raise the funds and awearness.
This is not the best news for us as we really dont want Cody to have any surgery he really doesnt need to have.
With the last hickman being inserted into a new vein it was a little distressing for us to be told that he has used 3 of his 6 available veins. He must have 2 good veins left for transplant.
We have a meeting in two weeks with the surgical team and will be asking them to clarify what this means for us and Cody.
Cody's story has been published in New Idea. The feed back has been wonderful and very supportive. I just hope that NZ gets behind us and helps us to raise the funds and awearness.
Thursday, February 7, 2008
Happy 17th Birthday!!!
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Happy Birthday to you, Happy birthday to you, Happy Birthday to Cody.........Happy birthday to you....................
We are thrilled to wish Cody a very happy birthday and the fact that he is now at home again is the best present for Cody.
His hickman line has been reinserted but unfortunatley we have lost our first vein. They say there are 6 veins in the body that can be used for a hickman line (this line feeds him his TPN and also fluids each day) but for cody, our surgeon informed us that he only has the use of 3?? We know that they need 2 good veins for transplant and with loosing one vein we are down to our last two already. This is something that needs to be clarified with the surgeon next week.
Saturday, February 2, 2008
How to keep a teenage mind active???
Cody is now well enough to be able to go home for a few hours during the day. They are doing this to try and spark his mind and lift the dark cloud he has hovering over his head. He dislikes hospitals (even more now than ever) and so if he is in the ward for more than a few days he starts to sink into a depression. He has been in over a week now and with possibly another week to come. He has been the sickest he has ever been this time round and so with all of that, Cody has gone down hill - mentally. We are all concerned for his state of mind.
So I ask you.....What can you do to lift the spirits of a 17 year old boy???? I have some ideas and will try to make them happen.
1 - a helicopter ride around Nelson
2 - some time out on a boat going fishing
3 - shooting clay targets or even a row of cans off a fence
4 - a ride in a flash sports car (like a ferrari)
5 - 4wd motor bikes or the skywire
Its hard to think of things that he can actually do. Some of the things that he loves, he cant do. He loves playing Paintball with his mates and playing soccer. But for obvious reasons he cant do those.
It will be Cody's birthday FEB 7th, Please leave birthday wishes for him. We cant let his 17th go past with out making a big deal out of it.
So I ask you.....What can you do to lift the spirits of a 17 year old boy???? I have some ideas and will try to make them happen.
1 - a helicopter ride around Nelson
2 - some time out on a boat going fishing
3 - shooting clay targets or even a row of cans off a fence
4 - a ride in a flash sports car (like a ferrari)
5 - 4wd motor bikes or the skywire
Its hard to think of things that he can actually do. Some of the things that he loves, he cant do. He loves playing Paintball with his mates and playing soccer. But for obvious reasons he cant do those.
It will be Cody's birthday FEB 7th, Please leave birthday wishes for him. We cant let his 17th go past with out making a big deal out of it.
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