Well its now day 4 since they rejoined what was left of his upper and lower intestines. Cody has come through this like a champ!! He has had a couple of painful days, like having to stand and walk after 2 days. Sounds extreme but it was necessary.
I must say that I didn't think I would ever be so happy to post the following news but to all those out there following this or going through similar will all understand.
Cody had his first bowel movement!!! yayayayayayaya this means that the join has held and things are moving through. Unfortunately for Cody it was bile .... which is an acid.... well you can guess the rest. So while we celebrate - Cody braces himself for the next one. But I am told this will ease in time.
Monday, January 14, 2008
Cody gets through unusual op
From Nelson Mail.
Nelson teenager Cody Walsh has successfully come through an uncommon type of surgery and was sitting up Thursday night in a Nelson Hospital bed with his "quirky sense of humour" intact, family friend Nyle Sunderland said.
Cody, 16, has a rare and potentially fatal condition where the bowel sits incorrectly in the body and in September last year had an emergency operation to remove most of his upper and lower intestine.
It meant he was unable to eat and was fed a glucose solution directly into his bloodstream. His only chance of eating normally again is an upper intestine and liver transplant in Toronto, Canada, which has a price tag expected to top $1 million.
But Thursday's operation, which joined the remaining parts of the upper and lower intestine as well as removing the gall bladder, meant, if it was ultimately successful, Cody would be able to eat about the equivalent of a sandwich worth of calories each day, Ms Sunderland said.
It was a very rare operation which meant the large bowel had to learn to absorb nutrients and Cody would still mostly be fed through an artery, she said. Other cases had mixed rates of success, with some patients still unable to eat after two years.
A blog - www.codywalsh.blogspot.com - has been set up to help raise funds and awareness for Cody's plight. Donations can also be made to the Cody Walsh Transplant Fund at any Westpac branch or into various collection tins in bars and cafes in Nelson.
Nelson teenager Cody Walsh has successfully come through an uncommon type of surgery and was sitting up Thursday night in a Nelson Hospital bed with his "quirky sense of humour" intact, family friend Nyle Sunderland said.
Cody, 16, has a rare and potentially fatal condition where the bowel sits incorrectly in the body and in September last year had an emergency operation to remove most of his upper and lower intestine.
It meant he was unable to eat and was fed a glucose solution directly into his bloodstream. His only chance of eating normally again is an upper intestine and liver transplant in Toronto, Canada, which has a price tag expected to top $1 million.
But Thursday's operation, which joined the remaining parts of the upper and lower intestine as well as removing the gall bladder, meant, if it was ultimately successful, Cody would be able to eat about the equivalent of a sandwich worth of calories each day, Ms Sunderland said.
It was a very rare operation which meant the large bowel had to learn to absorb nutrients and Cody would still mostly be fed through an artery, she said. Other cases had mixed rates of success, with some patients still unable to eat after two years.
A blog - www.codywalsh.blogspot.com - has been set up to help raise funds and awareness for Cody's plight. Donations can also be made to the Cody Walsh Transplant Fund at any Westpac branch or into various collection tins in bars and cafes in Nelson.
Cody makes front page news
This is the article from the Nelson Mail.
An Internet blog has been set up to raise funds and awareness for a Nelson teenager who has a potentially fatal bowel condition and may face a transplant bill of more than $1 million.
Cody Walsh, 16, was diagnosed with a severe form of malrotation volvulus - a birth abnormality where the bowel sits incorrectly in the body - in September, necessitating the removal of most of his upper and lower intestines.
He is now fed only a glucose solution through a tube directly into a vein and has little life quality but, until his liver function improves significantly, it is too dangerous to consider the risky transplant operation in Toronto, Canada.
Family friend Nyle Sunderland, who has been spearheading the fundraising effort, said the blog - www.codywalsh.blogspot.com - was started to raise funds and awareness of Cody's plight.
So far about $6000 had been raised through bank account deposits and fundraising tins, with more pledged.
However, that is just a drop in the bucket compared to the expected cost of the operation which could climb to over $1 million.
It had previously been thought that the operation would cost just over $500,000 but Ms Sunderland said after talking to other people overseas who had gone through the operation, it was expected the cost could go as high as $1.5 million.
The amount of government funding Cody will receive will not be decided until a decision on the operation is made.
Meanwhile, Cody is due to have an operation on Thursday at Nelson Hospital to rejoin the remaining parts of his upper and lower intestines which, if successful, would mean he can eat roughly the equivalent of a sandwich worth of calories each day.
The temporary solution would still mean he would have to feed through a tube.
Cody said that in order for the operation to work, the large bowel would have to learn to absorb nutrients, which was usually the job of the small bowel.
He said he was optimistic about the operation's success but it could be months or years before it began to work.
"It's either that or ... there's not much else you can do."
Donations can also be made to the Cody Walsh Transplant Fund at any Westpac branch or into various collection tins in bars and cafes in Nelson.
An Internet blog has been set up to raise funds and awareness for a Nelson teenager who has a potentially fatal bowel condition and may face a transplant bill of more than $1 million.
Cody Walsh, 16, was diagnosed with a severe form of malrotation volvulus - a birth abnormality where the bowel sits incorrectly in the body - in September, necessitating the removal of most of his upper and lower intestines.
He is now fed only a glucose solution through a tube directly into a vein and has little life quality but, until his liver function improves significantly, it is too dangerous to consider the risky transplant operation in Toronto, Canada.
Family friend Nyle Sunderland, who has been spearheading the fundraising effort, said the blog - www.codywalsh.blogspot.com - was started to raise funds and awareness of Cody's plight.
So far about $6000 had been raised through bank account deposits and fundraising tins, with more pledged.
However, that is just a drop in the bucket compared to the expected cost of the operation which could climb to over $1 million.
It had previously been thought that the operation would cost just over $500,000 but Ms Sunderland said after talking to other people overseas who had gone through the operation, it was expected the cost could go as high as $1.5 million.
The amount of government funding Cody will receive will not be decided until a decision on the operation is made.
Meanwhile, Cody is due to have an operation on Thursday at Nelson Hospital to rejoin the remaining parts of his upper and lower intestines which, if successful, would mean he can eat roughly the equivalent of a sandwich worth of calories each day.
The temporary solution would still mean he would have to feed through a tube.
Cody said that in order for the operation to work, the large bowel would have to learn to absorb nutrients, which was usually the job of the small bowel.
He said he was optimistic about the operation's success but it could be months or years before it began to work.
"It's either that or ... there's not much else you can do."
Donations can also be made to the Cody Walsh Transplant Fund at any Westpac branch or into various collection tins in bars and cafes in Nelson.
Thursday, January 10, 2008
Cody's surgery
Cody had a scheduled operation today. They joined the small and large bowel together. They are hoping that the large bowel will eventually function as the small bowel would and absorb nutrients. It now means that once cody has healed he will be able to eat approx 1000 calories a day. Cody really misses subway.......meat ball subways to be exact. I did offer to buy one and blend it for him.......but he feels that a sub must be eaten raw NOT through a straw.
Cody has recovered well after a 4 hour operation. While the surgeon was operating it was decided to remove his gall bladder as well. This is normal and is usually the first organ to go, so better to remove it now rather than wait for it to pack up and then operate again.
Here is a photo taken of cody as he was wheeled from recovery to the ward.
Tuesday, January 8, 2008
MY SON - by Natalie (Cody's Mum)
Born 7 February 1991, conceived in a violent electrical storm - at 28 weeks into my pregnancy with Cody I nearly succumbed to a vile bacterial infection which ended in double pneumonia which was undiagnosed due to incompetent gp who told me I was a reactive pregnant woman (neurotic I think he meant) bahumbug and BAH- eight weeks after becoming ill I ended up severely ill with a collapsed lung and the other not far off collapsing I had weeks of physio to clear the gunk plus very strong iv antibiotics in hospital. Cody may or may not have been affected by these bowel stripping antibiotics(for me the drugs caused a condition called clostridium difficale which caused weeks of agonising bowel spasms and chronic on the toilet every ten minutes bum eruption haha- until miracle acidophilus yoghurt sorted that out) - Cody was born with an extremely rare condition called Malrotation Volvulus which affects one in 350 0000 infants or thereabouts - his condition was not picked up until recently - with Malrotion Volvulus the entire bowel is assembled very randomly - it kind of hangs messily and tangled with no anchorage - in a normal bowel the small intestine which is extremely long is anchored in a central area with the large bowel anchoring it and keeping it all together - Cody's bowel hang around in a loose kind of way allowing things to twist in a not to good for existence kind of way - Cody had throughout his life suffered periodic bouts of what was diagnosed as chronic constipation which made him sick and suffer pain - what was probably occurring was the bowel was twisting and untwisting - five months ago on the 12 September 2007 his bowel did not untwist and three days later he ended up having to have all but six inches of his small intestine removed and all but a metre of his large intestine removed as the whole lot had strangled mid gut and become narcotic (dead) Now we can live without a large bowel (colon) but we cannot live without a small bowel (intestine) the small intestine is where the nutrients from our food is distributed through the body - now Cody is left with no way for the nutrients to be naturally distributed so he needs total parental nutrition (tpn) which is fed through a line which enters his blood system through a large vein via a piece of tubing called a Hickmans line- this requires a pump as well which he hooks up to for twelve hours every night - unfortunately the tpn is hard on the liver and Cody is a target for nasty infections or bugs which can enter his blood stream via the Hickmans - Cody needs to be vigilent with hygiene as the administration of anything into his Hickmans requires sterile technique - Cody is currently recovering from one of these line infections - the infections have a potential to kill him and it is one thing that we fear. Cody has completed his course of antibiotics for this bug which has made him feel pretty crappy as they are strong antibiotics - Out of the nearly five months Cody has spent a great deal of time in and out of hospital and will go in next week for a operation to repair some of the damage and hopefully enable him to reduce the amount of tpn required so keep the liver in better nick - the transplant is not an operation that is easy as it is extremely hard to recover from and has a high risk factor - Cody will probably require several organs to be transplanted including his liver we won't really know until we get to Canada - Probably his liver and the small intestine - i think i was told that its easier to do the liver as well as its all plumbed that way anyway. He blows me away as he's such a tough guy and brave as he has some level of ick everyday to deal with - a lot of the time he deals with awful nausea and vomiting or his duodostemy leaks which burns him or his hickmans clogs up as happened yesterday which unfortunately caused one of the lumens (lines) to split so next week as well as the resection of the bowel he will need a new Hickmans' inserted which is done by a radiologist via camera - he injects himself with a substance called octiotride which keeps his system from building up too much fluid - he has a metabolic disorder as well due to all this body bother. But he is one inspiring sixteen year old - he gets frustrated and hates going into hospital but gets on with the day to day stuff and is as happy as he can be within this - I admire him and thank god or whoever is looking out for him for his life and the precious gift that is him.
Tuesday, January 1, 2008
My New Years ...... The unfolding drama
Saturday 29th December 2007
Cody woke up and mentioned that he didn't feel so good. He had a head ache and he was starting to get a temp. Later that morning his temp started to climb, his head ache got worse and his legs started to ache. He went to the A & E and they took bloods to check if he had an infection. As his mother tried to point out to them.......last time the infection took a while to culture and that she wanted to stay. But due to the bloods coming back clear, the hospital sent Cody home. His mum kept a very close eye on him and was not at all surprised when she received a phone call at 1am Sunday morning saying that his bloods had come back and there was a bug in his hicman line and in his blood. So Cody was bundled up to the A & E were he and his mum had to wait for 2 hours until they were finally admitted to the ward. That night Cody's temp spiked at 40 deg and he was vomiting badly. Lucky for Cody he is a fighter and by 10am Sunday the Antibiotics were starting to work and Cody started feeling much better. Even so Cody settled in expecting to be in hospital for a couple of days at least.
Due to a nasty strain of Nova Virus in the wards it was decided it would be safer for Cody to be at home, so later on Monday Cody was released.
Infection is Cody's worst enemy at present. Next hurdle for Cody is an operation on Jan 10th (if it still goes ahead after this) Will fill you in on the next post.
Cody woke up and mentioned that he didn't feel so good. He had a head ache and he was starting to get a temp. Later that morning his temp started to climb, his head ache got worse and his legs started to ache. He went to the A & E and they took bloods to check if he had an infection. As his mother tried to point out to them.......last time the infection took a while to culture and that she wanted to stay. But due to the bloods coming back clear, the hospital sent Cody home. His mum kept a very close eye on him and was not at all surprised when she received a phone call at 1am Sunday morning saying that his bloods had come back and there was a bug in his hicman line and in his blood. So Cody was bundled up to the A & E were he and his mum had to wait for 2 hours until they were finally admitted to the ward. That night Cody's temp spiked at 40 deg and he was vomiting badly. Lucky for Cody he is a fighter and by 10am Sunday the Antibiotics were starting to work and Cody started feeling much better. Even so Cody settled in expecting to be in hospital for a couple of days at least.
Due to a nasty strain of Nova Virus in the wards it was decided it would be safer for Cody to be at home, so later on Monday Cody was released.
Infection is Cody's worst enemy at present. Next hurdle for Cody is an operation on Jan 10th (if it still goes ahead after this) Will fill you in on the next post.
Bad News Continues...
Bad news continues for seriously-ill Nelson teenager Cody Walsh, who has suffered further medical problems, while a third tin containing money to go towards his life-saving operation has been stolen.
Cody, 16, has a rare bowel condition that will kill him in three to five years if he does not get an operation in Toronto, Canada, that is expected to cost close to $1,000,000. His mother Natalie Cozens said the tube that fed a glucose solution directly into his bloodstream fell out over the weekend, leaving his potassium levels "dangerously low". Cody, who was 60kg before he became ill in September, had lost 15kg, with three of those coming off over the weekend, she said. Cody said he met Nelson Hospital general surgeon Alf Deacon Thursday and it was decided to try to perform an operation in New Zealand that would help keep his liver intact before the eventual transplant.
He wanted to get the Canadian transplant performed as soon as possible. Another meeting was planned for today to get a clearer idea of their options. But Dr Deacon previously told the Nelson Mail that Nelson Marlborough District Health Board funding for the Toronto operation wouldn't be considered until Cody had liver failure - a result of the tube feeding - which wasn't expected for three to five years. He said this week it was "very uncommon" for the feeding line to fall out and the Canada operation had not been decided on yet. Health board general manager of planning and funding Dr Sharon Kletchko said the board had already begun the planning process that meant, if it was decided that Cody could get a transplant, the board would be as prepared as possible to help with funding. First it had to compile technical and clinical information and form an advisory committee to look at various issues associated with the transplant. Experts would then perform a benefit analysis of the operation, including looking at the risks, and the findings would be shown to the health board.
Adding to frustrations, last week a fundraising tin holding about $50 in donations towards his operation was stolen from the Verdict bar in central Nelson and last month other tins, holding an estimated $1500 in total, were stolen from the Turf and the Stables bars. Family friend Nyle Sunderland, who has been spearheading the fundraising effort, said the tins - which were in Shooters, Murfz Lunch Bar, Verdict, the Stables, the Victory Square pub, the Grumpy Mole and Stoke's Turf Hotel - were now being chained down to avoid further thefts.
Donations can also be made to the Cody Walsh Transplant Fund at any Westpac branch.
Cody, 16, has a rare bowel condition that will kill him in three to five years if he does not get an operation in Toronto, Canada, that is expected to cost close to $1,000,000. His mother Natalie Cozens said the tube that fed a glucose solution directly into his bloodstream fell out over the weekend, leaving his potassium levels "dangerously low". Cody, who was 60kg before he became ill in September, had lost 15kg, with three of those coming off over the weekend, she said. Cody said he met Nelson Hospital general surgeon Alf Deacon Thursday and it was decided to try to perform an operation in New Zealand that would help keep his liver intact before the eventual transplant.
He wanted to get the Canadian transplant performed as soon as possible. Another meeting was planned for today to get a clearer idea of their options. But Dr Deacon previously told the Nelson Mail that Nelson Marlborough District Health Board funding for the Toronto operation wouldn't be considered until Cody had liver failure - a result of the tube feeding - which wasn't expected for three to five years. He said this week it was "very uncommon" for the feeding line to fall out and the Canada operation had not been decided on yet. Health board general manager of planning and funding Dr Sharon Kletchko said the board had already begun the planning process that meant, if it was decided that Cody could get a transplant, the board would be as prepared as possible to help with funding. First it had to compile technical and clinical information and form an advisory committee to look at various issues associated with the transplant. Experts would then perform a benefit analysis of the operation, including looking at the risks, and the findings would be shown to the health board.
Adding to frustrations, last week a fundraising tin holding about $50 in donations towards his operation was stolen from the Verdict bar in central Nelson and last month other tins, holding an estimated $1500 in total, were stolen from the Turf and the Stables bars. Family friend Nyle Sunderland, who has been spearheading the fundraising effort, said the tins - which were in Shooters, Murfz Lunch Bar, Verdict, the Stables, the Victory Square pub, the Grumpy Mole and Stoke's Turf Hotel - were now being chained down to avoid further thefts.
Donations can also be made to the Cody Walsh Transplant Fund at any Westpac branch.
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