Thursday, November 27, 2008
Back to Auckland
Cody has fallen through the cracks of our health system.......again. The support network here is just not happening. So Auckland have stepped in and will bring him back up there for some training and revision. His fiscula is just not working out and so he is back to using his hicman line. Not a good solution really. He has also caught this horrid cough that is going round. It is simular to Hooping cough. He is frail enough with out getting this. Watching him cough is as painfull as the sound he makes. We all have our fingers crossed that he will come back positive and with some new energy. Will let everyone know more as I do.
Sunday, November 23, 2008
One year on and counting
Well life for Cody is still ticking along. Nothing startling has happened since his trip to the hospital...which is a good thing.
Cody now only feeds via TPN 4 nights a week and has 2 nights off. This gives him the chance to go out with mates and hang like any other normal 17 year old.
The fistula has ended up being a fizzer and is just too hard to use. It causes Cody so much pain to use. He ends up with huge bruises and then cant access the vein either. So its back to the hicman line. Not the best solution but it works.
This will be Cody's second Christmas. A huge milestone really as all the surgeons said he wouldn't live to see last Christmas.....but here he is. A credit to his determination really.
Cody now only feeds via TPN 4 nights a week and has 2 nights off. This gives him the chance to go out with mates and hang like any other normal 17 year old.
The fistula has ended up being a fizzer and is just too hard to use. It causes Cody so much pain to use. He ends up with huge bruises and then cant access the vein either. So its back to the hicman line. Not the best solution but it works.
This will be Cody's second Christmas. A huge milestone really as all the surgeons said he wouldn't live to see last Christmas.....but here he is. A credit to his determination really.
Thursday, October 30, 2008
Cody rushed to hospital
On Saturday night, just gone, Cody called himself an ambulance as he was having a racing heart and could tell his heart was not beating as it should do. Natalie was out babysitting for a friend and unable to get home to him, so the ambulance was the safest option. They admitted him at once and took bloods as his temp was also up. Turns out he was dangerously low in potassium again causing his heart to beat erratically plus he was also in the very early stages of an infection....his first since FEB!! so a few nights in hospital and getting the right meds and he is home again....but a very somber Cody is home. This one gave him a real scare and now he is more determined to work with everyone and live.
Wednesday, October 1, 2008
From the man himself....
Hey thanks for posting that.
I Couldn't have written that better myself. I would like to thank everybody who has donated or supported me over the past year.
It's Amazing I'm still here healthier than ever when I was told I didn't have long to live.
Cheers
I Couldn't have written that better myself. I would like to thank everybody who has donated or supported me over the past year.
It's Amazing I'm still here healthier than ever when I was told I didn't have long to live.
Cheers
Tuesday, September 30, 2008
Its been a year
I am sorry that there has been no updates since July. I guess in a way that is a good thing as it means that there have been no dramas for Cody.
Amazingly a year has passed. I look back and can only say that I am still bewildered that we are here at this point with Cody healthy (as healthy as he can be) and that he is now positive and looking a head towards a future. Not the picture we were all told a year ago. He was not meant to survive Xmas let alone a year.
It truly is a testament to Cody that he is where he is today. He has never given up and has fought harder than anyone I know and survived. Yes there have been times when I am sure he has wanted to give up ...... but he didn't and more importantly..............none of us gave up fighting for him either.
The latest news is of his fiscular. This was an operation performed in Auckland back in July. Where they joined a small vein in his arm to an artery (at the base of his bicep just above the crease of the elbow) This is normally used for Dialysis patients and is still only new for the use of TPN use. Cody's only viable arm was his right arm so accessing this is going to be tricky for him as he is right handed and it is fiddly. But the use of this method is less infection risk and will save his two good veins for transplant and that could now be 10 years away....all going well.
The annoying thing for Cody is that accessing the fiscula is not easy. He has had two training attempts at the hospital....with the last one ending up spraying blood all over the assisting nurse. Only to repeat it later that night at home when trying himself. He has to inject an long and larger than normal needle into this artery and of course if it goes wrong .... you get an arterial bleed. As Natalie and Cody discovered that night.....this means the roof, walls and floor get covered in blood. It looks more alarming than it actually is and it certainly knocked Cody's confidence with using this fiscula. Plus it is very painful so he has to use a numbing cream called Emula Gel.................and you guessed it..........this is not a funded item and at $18 for a 5ml tube ... is very very expensive. At the moment he will use 1 tube per day, so lucky we have the fund going as that will now be used to cover this cost.
So please....next time you pass by the Westpac Bank.....pop your lose change into his fund account or pop it into one of the many tins around collecting for him and pass this blog link on to as many people as you can.
Thanks to everyone who stop by and leave messages....Cody does see them and appriciates them alot.
Amazingly a year has passed. I look back and can only say that I am still bewildered that we are here at this point with Cody healthy (as healthy as he can be) and that he is now positive and looking a head towards a future. Not the picture we were all told a year ago. He was not meant to survive Xmas let alone a year.
It truly is a testament to Cody that he is where he is today. He has never given up and has fought harder than anyone I know and survived. Yes there have been times when I am sure he has wanted to give up ...... but he didn't and more importantly..............none of us gave up fighting for him either.
The latest news is of his fiscular. This was an operation performed in Auckland back in July. Where they joined a small vein in his arm to an artery (at the base of his bicep just above the crease of the elbow) This is normally used for Dialysis patients and is still only new for the use of TPN use. Cody's only viable arm was his right arm so accessing this is going to be tricky for him as he is right handed and it is fiddly. But the use of this method is less infection risk and will save his two good veins for transplant and that could now be 10 years away....all going well.
The annoying thing for Cody is that accessing the fiscula is not easy. He has had two training attempts at the hospital....with the last one ending up spraying blood all over the assisting nurse. Only to repeat it later that night at home when trying himself. He has to inject an long and larger than normal needle into this artery and of course if it goes wrong .... you get an arterial bleed. As Natalie and Cody discovered that night.....this means the roof, walls and floor get covered in blood. It looks more alarming than it actually is and it certainly knocked Cody's confidence with using this fiscula. Plus it is very painful so he has to use a numbing cream called Emula Gel.................and you guessed it..........this is not a funded item and at $18 for a 5ml tube ... is very very expensive. At the moment he will use 1 tube per day, so lucky we have the fund going as that will now be used to cover this cost.
So please....next time you pass by the Westpac Bank.....pop your lose change into his fund account or pop it into one of the many tins around collecting for him and pass this blog link on to as many people as you can.
Thanks to everyone who stop by and leave messages....Cody does see them and appriciates them alot.
Saturday, July 19, 2008
Life-threathing surgery deferred...
Life-threatening surgery deferred
as per article in Nelson Mail Saturday, 19 July 2008
A Nelson teenager has had a life-threatening operation deferred thanks to a rare procedure performed by Auckland specialists.
Cody Walsh, 17, has been diagnosed with a rare birth abnormality where his bowel sits incorrectly in his body.
The problem led to the removal of most of his lower and upper intestines last year. His only chance of living normally again is a dangerous bowel transplant in Toronto, Canada, with a price tag of around $1 million.
Cody has been fed a glucose solution directly into major arteries, but repeated life-threatening infections mean he is running out of useable arteries, which have to remain intact for the Toronto operation.
He returned yesterday from Auckland, where doctors inserted an implement called a fistula into a minor arm vein.
Cody's mother Natalie Cozens said it was believed that only two other New Zealanders had had the operation, which was performed for feeding, although it was common for kidney patients on dialysis.
When the fistula is operational in about two months, it will mean Cody can be fed via minor veins, and the chance of infection is drastically reduced.
She said the hope was that it would mean that the need for the Toronto operation, which currently had less than a 50-50 five-year survival rate, could be deferred by up to a decade.
Cody, who had wanted to be a chef before he became ill, was hoping to soon start looking for a job, although it would have to be something that required little exertion.
A blog has been set up, www.codywalsh.blogspot.com, 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.
as per article in Nelson Mail Saturday, 19 July 2008
A Nelson teenager has had a life-threatening operation deferred thanks to a rare procedure performed by Auckland specialists.
Cody Walsh, 17, has been diagnosed with a rare birth abnormality where his bowel sits incorrectly in his body.
The problem led to the removal of most of his lower and upper intestines last year. His only chance of living normally again is a dangerous bowel transplant in Toronto, Canada, with a price tag of around $1 million.
Cody has been fed a glucose solution directly into major arteries, but repeated life-threatening infections mean he is running out of useable arteries, which have to remain intact for the Toronto operation.
He returned yesterday from Auckland, where doctors inserted an implement called a fistula into a minor arm vein.
Cody's mother Natalie Cozens said it was believed that only two other New Zealanders had had the operation, which was performed for feeding, although it was common for kidney patients on dialysis.
When the fistula is operational in about two months, it will mean Cody can be fed via minor veins, and the chance of infection is drastically reduced.
She said the hope was that it would mean that the need for the Toronto operation, which currently had less than a 50-50 five-year survival rate, could be deferred by up to a decade.
Cody, who had wanted to be a chef before he became ill, was hoping to soon start looking for a job, although it would have to be something that required little exertion.
A blog has been set up, www.codywalsh.blogspot.com, 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.
Photo above is of Cody and Natalie when they first went to auckland. Taken in the sky tower.
Thursday, July 17, 2008
Codys Operation was a success.
Cody was prep and ready for surgery on Monday. They wheeled him off to theatre and sedated him....only to postpone op as there was a huge crash and three helicopters were bringing in the injured. So poor cody was put back in the ward and woken to be told he had not had the operation.
Two days later they wheeled him off and this time he stayed down and they completed the operation. He has been in a lot of pain since this operation and needing morphine for some time for his arm pain. The fiscula facinates cody....I am told it vibrates so he keeps playing with it. lol
The decision was made to leave Cody's hicman line in place as it is working and they dont want to risk damaging the vein. So with Cody doing so well, they boarded a plane and flew for home today. Not with out drama's, due to sickness on board the flight was diverted to CHCH and they had to do a mad dash to catch the plane to Nelson.
Two days later they wheeled him off and this time he stayed down and they completed the operation. He has been in a lot of pain since this operation and needing morphine for some time for his arm pain. The fiscula facinates cody....I am told it vibrates so he keeps playing with it. lol
The decision was made to leave Cody's hicman line in place as it is working and they dont want to risk damaging the vein. So with Cody doing so well, they boarded a plane and flew for home today. Not with out drama's, due to sickness on board the flight was diverted to CHCH and they had to do a mad dash to catch the plane to Nelson.
Sunday, July 6, 2008
Back to Auckland
The Auckland team have called and finally both Cody and Natalie head back to Auckland this week.
Both are excited and apprehensive about this trip. It brings about the time for a decision to be made about what is the best option for Cody.
Do we take the risk and remove the blocked hicman line and replace it with a new one or do we go a head with the Fiscula operation on his arm.
Both have positives and negatives.
1) Codys blood is reacting to all the meds he must take and so clots faster than it should. This is why his hicman has been getting blocked. Its his own body fighting the line in his vein and there is not much to be done about this.
2) The fiscula does have less chance for infection....but its a new operation for TPN feeding and its in his right arm.....Cody is right handed so he wont be able to connect to it on his own.
This time while they are away there will be a full time house - sitter......so there will be NO chance of a re-occurrence of the last trip.
Please stop in and wish them both the best as it is stressful being so far away from family and friends in a strange city and with little support.
Both are excited and apprehensive about this trip. It brings about the time for a decision to be made about what is the best option for Cody.
Do we take the risk and remove the blocked hicman line and replace it with a new one or do we go a head with the Fiscula operation on his arm.
Both have positives and negatives.
1) Codys blood is reacting to all the meds he must take and so clots faster than it should. This is why his hicman has been getting blocked. Its his own body fighting the line in his vein and there is not much to be done about this.
2) The fiscula does have less chance for infection....but its a new operation for TPN feeding and its in his right arm.....Cody is right handed so he wont be able to connect to it on his own.
This time while they are away there will be a full time house - sitter......so there will be NO chance of a re-occurrence of the last trip.
Please stop in and wish them both the best as it is stressful being so far away from family and friends in a strange city and with little support.
Monday, June 9, 2008
Another Blocked Line...
Well its been a week of it!!!
Weds 4th - Cody's hickman line is blocked. An emergency phone call is put through to Auckland and a trip to Nelson Hospital to await Auckland's instructions. We all know how much Cody dislikes hospital...........let alone Nelson hospital. So he was not a bundle of laughs to anyone. The decision is that Auckland medical team will meet on Monday and decide when to bring him back up to Auckland. He now has no choice but to go ahead with the fistula operation on his arm. Its no ones fault that the line got blocked. It appears that Codys blood clots too fast. Even with all the anti clot meds he takes. So it is no long viable to use his hicmans. At the moment he is feeding TPN via the fluids link into the hickmans but this is not suitable.
Then to top it all off - Codys best mate Kayne ( my son ) ended up in hospital that night with a burst appendix and had to have an emergency operation late that night to remove it. So Cody came up and sat with Kayne and reassured him all would be fine. It was a real eye opener for Cody to be on the other side and feeling how we all feel when its him on the hospital bed. Cody was able to explain to Kayne why he was feeling so ill and what it will be like when they put you to sleep. Kayne was so thankful as it was his first operation and it was very reassuring for him.
Weds 4th - Cody's hickman line is blocked. An emergency phone call is put through to Auckland and a trip to Nelson Hospital to await Auckland's instructions. We all know how much Cody dislikes hospital...........let alone Nelson hospital. So he was not a bundle of laughs to anyone. The decision is that Auckland medical team will meet on Monday and decide when to bring him back up to Auckland. He now has no choice but to go ahead with the fistula operation on his arm. Its no ones fault that the line got blocked. It appears that Codys blood clots too fast. Even with all the anti clot meds he takes. So it is no long viable to use his hicmans. At the moment he is feeding TPN via the fluids link into the hickmans but this is not suitable.
Then to top it all off - Codys best mate Kayne ( my son ) ended up in hospital that night with a burst appendix and had to have an emergency operation late that night to remove it. So Cody came up and sat with Kayne and reassured him all would be fine. It was a real eye opener for Cody to be on the other side and feeling how we all feel when its him on the hospital bed. Cody was able to explain to Kayne why he was feeling so ill and what it will be like when they put you to sleep. Kayne was so thankful as it was his first operation and it was very reassuring for him.
Tuesday, May 27, 2008
Charity Ball for Cody Walsh and Nelson Hospice
Charity Ball for Cody Walsh and The Nelson Hospice
21st June 7:30 pm at the Playhouse, Westdale road.
Tickets $95/person
3 course dinner with wine
Live music
Charity Auction
Spot prizes
Raffle
Dress: Black tie or Suit, Ball or cocktail dress
Tickets available from Clare 03 540 2868
Please contact Clare if anyone is interested in going. There are 16 seats left.
Monday, May 12, 2008
Time for some good news....
Over the weekend everyone helped Cody and Natalie move into a new house - in a much nicer area, one that is warm and quiet and not too far from the hospital. This house already feels like a home. Since they have moved Cody has slept better and has much more energy. He is warmer and feels great.
The new mix of TPN is giving him a much higher calorie intake and already he is gaining some weight.
With the horrid event of the burglary behind them, they now look forward to a brighter and happier future. One of hope and dreams. Cody aspires to be a chef and I truly believe that he will get there as he has proven beyond doubt that he has great courage and stamina.
With mention of the burglary I would like to take this moment to quietly thank a member of the nelson public for their generosity and kindness and how that they turned a horrid event into something so very heart warming. We all cant thank you enough.
There are still hurdles to cross and some obsticles that will be put in their path but I know that they now have the strength to face anything - how can they not with so much support from you all.
The new mix of TPN is giving him a much higher calorie intake and already he is gaining some weight.
With the horrid event of the burglary behind them, they now look forward to a brighter and happier future. One of hope and dreams. Cody aspires to be a chef and I truly believe that he will get there as he has proven beyond doubt that he has great courage and stamina.
With mention of the burglary I would like to take this moment to quietly thank a member of the nelson public for their generosity and kindness and how that they turned a horrid event into something so very heart warming. We all cant thank you enough.
There are still hurdles to cross and some obsticles that will be put in their path but I know that they now have the strength to face anything - how can they not with so much support from you all.
Cody went out to a birthday party over the weekend .... and was the centre of attention - as per photo
Saturday, May 10, 2008
Burglars Inflict Cruel Blow.....
By TOM HUNT - Nelson Saturday, 10 May 2008
Having been given a glimmer of hope, seriously ill Nelson teenager Cody Walsh has had another "hideous" blow dealt to him, after burglars broke into his house and stole the few forms of entertainment available to him.
"It's the most hideous, cruellest thing they could have done to my son," were just some of the distraught words of Cody's mother, Natalie Cozens, who returned from a medical trip to Auckland to discover the break-in.
Last September, Cody, 17, almost died when a previously undetected birth abnormality, where the bowel sits incorrectly in the body, caused his gut to strangle and necessitated the immediate removal of most of his upper and lower intestines.
Since then, Cody has been fed a glucose solution directly into his bloodstream via a major vein but frequent line infections, some bringing him to near-death, mean he is down to the final useable vein.
His only hope of ever eating normally again is receiving a bowel and liver transplant in Toronto, Canada, which has a price tag expected to near $1 million, and a one-in-ninety survival rate.
In December, Jason Peter Rochford, 22, was convicted of stealing donation tins from around Nelson, including some for Cody's operation.
Despite it all, Cody has remained upbeat, at one point telling the Nelson Mail: "There's no point moaning about it, you know. That isn't going to help."
Family friend Nyle Sunderland said Cody's mood skyrocketed during a trip to see medical specialists in Auckland over a week ago.
Doctors not only managed to correct the mixture of the glucose solution, to reduce a weight loss problem, but started planning ground-breaking surgery where a major artery was joined to a minor vein, through which the glucose solution would be fed.
It reduced chances of infection and left the one remaining major artery intact and free for surgery, which they say is eventually unavoidable.
The procedure, a New Zealand first, could buy him up to a decade before the transplant was needed, by which time the transplant procedure's survival rates would hopefully have increased, Mrs Sunderland said.
"He came back from Auckland with great hope a great lease of life."
Cody had planned to start studying to become a chef, even if he would only be able to taste food and not eat it, she said.
But when Cody and his mother got home, they found their house had been burgled.
The only items stolen belonged to Cody and included PlayStations, games and a brand new external hard-drive that he had saved for.
"Of all the things to steal from Cody that was his life. That was all he could do.
"The money was bad enough but that's what he lived for."
A blog has been set up, www.codywalsh.blogspot.com, 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.
Having been given a glimmer of hope, seriously ill Nelson teenager Cody Walsh has had another "hideous" blow dealt to him, after burglars broke into his house and stole the few forms of entertainment available to him.
"It's the most hideous, cruellest thing they could have done to my son," were just some of the distraught words of Cody's mother, Natalie Cozens, who returned from a medical trip to Auckland to discover the break-in.
Last September, Cody, 17, almost died when a previously undetected birth abnormality, where the bowel sits incorrectly in the body, caused his gut to strangle and necessitated the immediate removal of most of his upper and lower intestines.
Since then, Cody has been fed a glucose solution directly into his bloodstream via a major vein but frequent line infections, some bringing him to near-death, mean he is down to the final useable vein.
His only hope of ever eating normally again is receiving a bowel and liver transplant in Toronto, Canada, which has a price tag expected to near $1 million, and a one-in-ninety survival rate.
In December, Jason Peter Rochford, 22, was convicted of stealing donation tins from around Nelson, including some for Cody's operation.
Despite it all, Cody has remained upbeat, at one point telling the Nelson Mail: "There's no point moaning about it, you know. That isn't going to help."
Family friend Nyle Sunderland said Cody's mood skyrocketed during a trip to see medical specialists in Auckland over a week ago.
Doctors not only managed to correct the mixture of the glucose solution, to reduce a weight loss problem, but started planning ground-breaking surgery where a major artery was joined to a minor vein, through which the glucose solution would be fed.
It reduced chances of infection and left the one remaining major artery intact and free for surgery, which they say is eventually unavoidable.
The procedure, a New Zealand first, could buy him up to a decade before the transplant was needed, by which time the transplant procedure's survival rates would hopefully have increased, Mrs Sunderland said.
"He came back from Auckland with great hope a great lease of life."
Cody had planned to start studying to become a chef, even if he would only be able to taste food and not eat it, she said.
But when Cody and his mother got home, they found their house had been burgled.
The only items stolen belonged to Cody and included PlayStations, games and a brand new external hard-drive that he had saved for.
"Of all the things to steal from Cody that was his life. That was all he could do.
"The money was bad enough but that's what he lived for."
A blog has been set up, www.codywalsh.blogspot.com, 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.
Thursday, May 1, 2008
Codys Trip to Auckland for a second opinion
First they stopped all the fluids going into him (he was getting 6.5 liters each day including his tpn) his out put of fluids was through the roof...hence why he was not gaining any weight. He was 70 kg and is now only 45 kg.
Second, they changed his TPN mix and put iron, folic acid and zinc in (as the dietian had not added that from nelson) with in one night he was a different kid. Just truly amazing....getting a text from him at 7.30am asking for us to hurry up and get up there and to bring hair gel......he has not bothered about his appearance in months nor been awake before 11am
Third, Jill the TPN specialist came and talked to him ..... in minutes he was suddenly given his whole life back and was planning his chef course again. He was told that NO ONE but him must ever do his line care...even when in hospital. NO nurses or district nurse. One thing no one had told them.....where to do his tpn and line care. He had been doing it in the lounge sitting on an old couch with people in the room, a fire burning.....he was using hygnic methods etc but just not in the right area. So with the new house we are setting up a room for him to use.
Fourth, the top man...Mr Mcall.............we met with him on Tuesday...he said he didn't feel that Cody would ever need a transplant. That they have a lady currently on tpn and has used one vein for 10 years...no reason Cody cant do that too with the RIGHT CARE....but he also said that if things didn't track along right then we would face that one as it came...that Cody liver was perfect.....and so long as that remained that way things would be ok............BUT....he said that he wanted to see what the Vein Scan showed before he would give Cody the ...you don't need a transplant speech.
Fifth, he is not able to eat any more. He never should have been eating in the first place...Cody is now a TASTER....he can eat a couple of mouthfulls of food and thats it. So he is to look at food as a treat.
So we took Cody up the sky tower on day 3 and managed to walk all of queen street (1km)... a first in months......
We met up with Anita, Hamish, ash and aria..............gorgeous family...................and will be a life line for Natalie and Cody as they face many many visits to Auckland now.
So with everything going perfect it was decided that I should return home and back to my life (my huge race for Cody is on this Sunday.........I really hope to win it for him......sigh.....)
Now the bad news.....Today they got the results of the vein scan...................not good news. All of Cody's veins are unusable. He is using his last vein now. Even other access points have been ravaged by infection. So the vein specialist Prof Hill has suggested a rather radical surgery called Dialysis fistula. This is used by Dialysis patients but it is rare to use for TPN access. This is done via his arm and my basic understanding is they join a large artery to a small vein and then take access via the small vein. There is less risk of infection but................when it fails then transplant is his only option. He wont be able to access it himself so Natalie will be trained in how to hook it up. They want to remove his Hickman now so that the last vein could regenerate before it is too badly damaged. So they are doing another scan of his arm tomorrow to see if the veins can be used. So they are to make a decision while they are up there and then will be called back in about 5 weeks to start the surgery.
Plus he is also vomiting way too much so they are going to have a wee look with a camera to see what could be causing that.
The last thing I arranged for them was a trip to the Zoo and they both went for the afternoon. Natalie said that cody was like a little kid in a candy shop......they had got him a wheel chair so he didnt have to walk and he was zipping from one animal to the next. They both had a blast.
So thats about it.....................So yes the trip has been hugely positive and there is still a chance that his life will start again when he returns to nelson. He will now gain weight and that will make him feel much better and have more energy.
Second, they changed his TPN mix and put iron, folic acid and zinc in (as the dietian had not added that from nelson) with in one night he was a different kid. Just truly amazing....getting a text from him at 7.30am asking for us to hurry up and get up there and to bring hair gel......he has not bothered about his appearance in months nor been awake before 11am
Third, Jill the TPN specialist came and talked to him ..... in minutes he was suddenly given his whole life back and was planning his chef course again. He was told that NO ONE but him must ever do his line care...even when in hospital. NO nurses or district nurse. One thing no one had told them.....where to do his tpn and line care. He had been doing it in the lounge sitting on an old couch with people in the room, a fire burning.....he was using hygnic methods etc but just not in the right area. So with the new house we are setting up a room for him to use.
Fourth, the top man...Mr Mcall.............we met with him on Tuesday...he said he didn't feel that Cody would ever need a transplant. That they have a lady currently on tpn and has used one vein for 10 years...no reason Cody cant do that too with the RIGHT CARE....but he also said that if things didn't track along right then we would face that one as it came...that Cody liver was perfect.....and so long as that remained that way things would be ok............BUT....he said that he wanted to see what the Vein Scan showed before he would give Cody the ...you don't need a transplant speech.
Fifth, he is not able to eat any more. He never should have been eating in the first place...Cody is now a TASTER....he can eat a couple of mouthfulls of food and thats it. So he is to look at food as a treat.
So we took Cody up the sky tower on day 3 and managed to walk all of queen street (1km)... a first in months......
We met up with Anita, Hamish, ash and aria..............gorgeous family...................and will be a life line for Natalie and Cody as they face many many visits to Auckland now.
So with everything going perfect it was decided that I should return home and back to my life (my huge race for Cody is on this Sunday.........I really hope to win it for him......sigh.....)
Now the bad news.....Today they got the results of the vein scan...................not good news. All of Cody's veins are unusable. He is using his last vein now. Even other access points have been ravaged by infection. So the vein specialist Prof Hill has suggested a rather radical surgery called Dialysis fistula. This is used by Dialysis patients but it is rare to use for TPN access. This is done via his arm and my basic understanding is they join a large artery to a small vein and then take access via the small vein. There is less risk of infection but................when it fails then transplant is his only option. He wont be able to access it himself so Natalie will be trained in how to hook it up. They want to remove his Hickman now so that the last vein could regenerate before it is too badly damaged. So they are doing another scan of his arm tomorrow to see if the veins can be used. So they are to make a decision while they are up there and then will be called back in about 5 weeks to start the surgery.
Plus he is also vomiting way too much so they are going to have a wee look with a camera to see what could be causing that.
The last thing I arranged for them was a trip to the Zoo and they both went for the afternoon. Natalie said that cody was like a little kid in a candy shop......they had got him a wheel chair so he didnt have to walk and he was zipping from one animal to the next. They both had a blast.
So thats about it.....................So yes the trip has been hugely positive and there is still a chance that his life will start again when he returns to nelson. He will now gain weight and that will make him feel much better and have more energy.
Here is a photo of Me, Natalie (codys mum) and Cody at the sky tower.
Sunday, April 20, 2008
Nayland College Rocks it out....
Fundraising rocks at Nayland College Tom Hunt
Philanthrophy rocks. Nayland College students raised a record sum for a school mufti day yesterday as they collected $1082.80 for a good cause, dressed as rock stars.
The theme and cause came from former student Cody Walsh, 17, who has an extremely rare stomach condition that is likely to kill him if he does not receive a bowel and liver transplant with a $1 million pricetag.
Cody, who spent a couple of days in Nelson Hospital this week with further complications, chose the "rock star" theme for the mufti day and the students responded.
Glitter, ripped jeans, hairspray and lots of makeup strode the school's hallways and classrooms as teachers and students opened their wallets en-masse. One student, dressed as Elvis Presley, donated $20 and notes filled the donation tins, the total beating a mufti day earlier in the year that raised $600 for the school's World Vision-sponsored child.
Nayland College social and fundraising committee chairman Andrew Linde said the cause was chosen because many of the students not only knew Cody and had heard of his plight, but were also aware of an incident late last year when donation tins for his transplant were stolen and never recovered.
It is just one of the fundraising drives from a community that has gotten behind Cody's cause.
Family friend Nyle Sunderland, who has been spearheading the fundraising effort, said donations had so far reached about $14,000 and there were still ways people could lend support.
One artist shabbychik was auctioning a string of art pieces for Cody on TradeMe, while another woman maryme was auctioning off a collectable Jesus Christ-themed plate.
But the fundraiser that Ms Sunderland hoped would push the appeal total further was a plan to get entrants in the Nelson Shoe Clinic Half Marathon to download a form from www.athletics.nelson.co.nz and get sponsored for the run, with money raised going towards Cody's operation.
Philanthrophy rocks. Nayland College students raised a record sum for a school mufti day yesterday as they collected $1082.80 for a good cause, dressed as rock stars.
The theme and cause came from former student Cody Walsh, 17, who has an extremely rare stomach condition that is likely to kill him if he does not receive a bowel and liver transplant with a $1 million pricetag.
Cody, who spent a couple of days in Nelson Hospital this week with further complications, chose the "rock star" theme for the mufti day and the students responded.
Glitter, ripped jeans, hairspray and lots of makeup strode the school's hallways and classrooms as teachers and students opened their wallets en-masse. One student, dressed as Elvis Presley, donated $20 and notes filled the donation tins, the total beating a mufti day earlier in the year that raised $600 for the school's World Vision-sponsored child.
Nayland College social and fundraising committee chairman Andrew Linde said the cause was chosen because many of the students not only knew Cody and had heard of his plight, but were also aware of an incident late last year when donation tins for his transplant were stolen and never recovered.
It is just one of the fundraising drives from a community that has gotten behind Cody's cause.
Family friend Nyle Sunderland, who has been spearheading the fundraising effort, said donations had so far reached about $14,000 and there were still ways people could lend support.
One artist shabbychik was auctioning a string of art pieces for Cody on TradeMe, while another woman maryme was auctioning off a collectable Jesus Christ-themed plate.
But the fundraiser that Ms Sunderland hoped would push the appeal total further was a plan to get entrants in the Nelson Shoe Clinic Half Marathon to download a form from www.athletics.nelson.co.nz and get sponsored for the run, with money raised going towards Cody's operation.
Friday, April 18, 2008
Auction for Cody Walsh & Update
There are now two auctions running for Cody on Trade me.
Please stop by and place a bid.
http://www.trademe.co.nz/Art/Paintings/Abstract/Other/auction-150987609.htm
http://www.trademe.co.nz/Home-living/Home-décor/Ornaments/Religious/auction-150048682.htm
Update on Cody
We have now found what is causing Cody so much pain. His bowel has become immobile. Meaning it is no longer working as a bowel should. Waste is not being moved through and is just compacting which is causing him huge pain. They are unable to operate at present and are not keen to do so. The surgical team here are a little stumped at to what to do next for him. So we are holding out for our visit to Auckland. The Auckland team are the top guns and we hope they will know what to do or to offer. For now it is pain relief at home or if pain too much for that, stay in over night for intravenous pain relief. Neither are great options but its all we have.
Cody is optimistic about it all and is still a fighter. With all he has to face daily it amazes me that he can still crack a smile and joke.
Please stop by and place a bid.
http://www.trademe.co.nz/Art/Paintings/Abstract/Other/auction-150987609.htm
http://www.trademe.co.nz/Home-living/Home-décor/Ornaments/Religious/auction-150048682.htm
Update on Cody
We have now found what is causing Cody so much pain. His bowel has become immobile. Meaning it is no longer working as a bowel should. Waste is not being moved through and is just compacting which is causing him huge pain. They are unable to operate at present and are not keen to do so. The surgical team here are a little stumped at to what to do next for him. So we are holding out for our visit to Auckland. The Auckland team are the top guns and we hope they will know what to do or to offer. For now it is pain relief at home or if pain too much for that, stay in over night for intravenous pain relief. Neither are great options but its all we have.
Cody is optimistic about it all and is still a fighter. With all he has to face daily it amazes me that he can still crack a smile and joke.
Tuesday, April 15, 2008
A date has been set.....
April 27th @ 2pm is our official time to be at the Auckland hospital.
The reason it has taken so long to get us up there is due to the top TPN specialist being on leave and they want 3 surgical teams to check in on Cody and over view his care and health.
We are hoping for more positive news and some extra care tips etc....
Cody had a CT scan on Monday-his pain has intensified in the last few weeks and no one can answer why. The hospital was so clever in helping with Cody's pain relief that they gave him oral panadine................he has no bowel and cant digest it?????? why would they bother? We get really tired with this sort of nonsense that just keeps happening.
Finally he is taken to his own GP who prescribes a low dose morphine...............and at long last Cody is PAIN free!!!!! but wait there's more......................................Cody's surgeon hears about this and bans all doctors and ward staff from giving it to him. There is no other pain relief for him so its back to crippling pain and vomiting each morning and night.
Cant wait to get him to Auckland and get this resolved. There must be a way to help him be pain free with out the risk of addiction and liver damage??????
The reason it has taken so long to get us up there is due to the top TPN specialist being on leave and they want 3 surgical teams to check in on Cody and over view his care and health.
We are hoping for more positive news and some extra care tips etc....
Cody had a CT scan on Monday-his pain has intensified in the last few weeks and no one can answer why. The hospital was so clever in helping with Cody's pain relief that they gave him oral panadine................he has no bowel and cant digest it?????? why would they bother? We get really tired with this sort of nonsense that just keeps happening.
Finally he is taken to his own GP who prescribes a low dose morphine...............and at long last Cody is PAIN free!!!!! but wait there's more......................................Cody's surgeon hears about this and bans all doctors and ward staff from giving it to him. There is no other pain relief for him so its back to crippling pain and vomiting each morning and night.
Cant wait to get him to Auckland and get this resolved. There must be a way to help him be pain free with out the risk of addiction and liver damage??????
Wednesday, April 2, 2008
Cody going to Auckland
I have had a odd feeling at the pit of my stomach for a couple of months now re: Cody's care at Nelson Hospital but not knowing my rights, I didn't know what to do about it. I felt that by going to another surgeon in the same hospital would be stepping on toes and off side the surgeon we had. I am not a medical person at all, I get all mine for good old mother nature and natural instincts that most mothers develop. But most of all I owe two mothers who are fighting the same fight we are. Jodee in the states and Anita in Auckland. With out their knowledge and fight, I almost would have just gone with the flow.
Thanks to them I learnt that Cody had rights. He had the RIGHT to a second opinion. So on Monday Natalie emailed everyone on the surgical team and told them to arrange a second opinion and we wanted Auckland. By Tuesday we had not had any responses, so I rang the social worker and worked on my shout and roar tactic. It worked, she tracked down our surgeon (who was on his day off) and passed on my roar. He promptly came back to work and completed all the paper work for a referral to Auckland hospital were they are fully specialised in the kind of care Cody needs.
We have been told that we could be flying off to Auckland by end of this week or beginning of next. I am going up with Natalie and Cody as Trevor is unable to get time off work and no one wants them going up there on their own. We are just waiting on Auckland Hospital to clear a single room for Cody and we could be up there for a few days. I am hoping it is the sooner option as I must be back in Nelson by Friday morning at the latest as I have a judged event that I must race in CHCH that weekend.
I will keep you all posted.
~~~~~~~~~~*****~~~~~~~~*******~~~~~~~~~~
The auction being run for Cody has finished with the whole proceeds being donated to Cody's' Transplant Fund. Thanks with all my heart to those who were bidding.........for those whose bid didn't win.............there could be another auction some time soon. Will keep you posted on that one too.
Thanks to them I learnt that Cody had rights. He had the RIGHT to a second opinion. So on Monday Natalie emailed everyone on the surgical team and told them to arrange a second opinion and we wanted Auckland. By Tuesday we had not had any responses, so I rang the social worker and worked on my shout and roar tactic. It worked, she tracked down our surgeon (who was on his day off) and passed on my roar. He promptly came back to work and completed all the paper work for a referral to Auckland hospital were they are fully specialised in the kind of care Cody needs.
We have been told that we could be flying off to Auckland by end of this week or beginning of next. I am going up with Natalie and Cody as Trevor is unable to get time off work and no one wants them going up there on their own. We are just waiting on Auckland Hospital to clear a single room for Cody and we could be up there for a few days. I am hoping it is the sooner option as I must be back in Nelson by Friday morning at the latest as I have a judged event that I must race in CHCH that weekend.
I will keep you all posted.
~~~~~~~~~~*****~~~~~~~~*******~~~~~~~~~~
The auction being run for Cody has finished with the whole proceeds being donated to Cody's' Transplant Fund. Thanks with all my heart to those who were bidding.........for those whose bid didn't win.............there could be another auction some time soon. Will keep you posted on that one too.
Tuesday, March 25, 2008
Auction on Trade me for Cody
Please take a moment to stop by at this link. A wonderful lady has contacted us and wanted to help. She was moved by Cody's story. She is a wonderful artist and is running an auction for a set of her art. It is just beautiful. Please stop by and bid to help.
http://www.trademe.co.nz/Art/Paintings/Abstract/Other/auction-146888892.htm
Love Tiles (set of 3)Size: x3 each: 20cm x 15cm x 3.8cm (deep) / 6" x 8" x 1.5" (deep)Medium: High quality acrylics in reds, black, creme/beige and gold. All three backgrounds are lightly textured & black french script has been used on the two outter blocks.All three have been varnished for protection and a nice finish. Pictures really dont do this set justice! Ready to hang any way you like. Signed on the back by myself. I am a student with a huge passion for painting, I have been painting since early 2007 and I really enjoy it in my spare time.
http://www.trademe.co.nz/Art/Paintings/Abstract/Other/auction-146888892.htm
Love Tiles (set of 3)Size: x3 each: 20cm x 15cm x 3.8cm (deep) / 6" x 8" x 1.5" (deep)Medium: High quality acrylics in reds, black, creme/beige and gold. All three backgrounds are lightly textured & black french script has been used on the two outter blocks.All three have been varnished for protection and a nice finish. Pictures really dont do this set justice! Ready to hang any way you like. Signed on the back by myself. I am a student with a huge passion for painting, I have been painting since early 2007 and I really enjoy it in my spare time.
Sunday, March 23, 2008
Not a good week for Cody
Cody was readmitted to hospital last week with another temp spike. They discovered that he has a blood infection. After much debate it was decided to remove Cody's gastro button and his blocked hicman line under a general operation and a new line was inserted into a large vein in his arm for his TPN feeding. This was done on Friday. But Cody has not recovered well this time. With in two days the vein in his arm has collapsed and cant be used for TPN. He has been coughing up a small amount of bloody mucus (which we hope is just from the infection and from being under a general) His surgeon is reconsidering his options in the morning. But for now Cody cant receive his TPN. I am told you can go two days before this is a major concern. One of the options is to reinsert the Hicman line - they don't really want to do this while Cody still has an infection in his body and the infection can latch onto the vein.
We will know more after a meeting with Cody's surgeon.
We will know more after a meeting with Cody's surgeon.
Wednesday, March 12, 2008
up date on Cody
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.
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.
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.
Tuesday, January 29, 2008
Hi Ho Hi, its back to surgery we go....
Today they gave Cody a CT scan and they found an abscess in his bowel. So back down to surgery where they have inserted two drains and given him another CT scan just to be safe. Plus they checked his blood and found that his hemoglobin levels were very low......no wonder the poor guy didn't want to move or do anything. So they started a blood trans at lunch time and by the time the first bag was finished we were looking at a different guy. Once he gets back up from surgery they will give him a further bag or two of blood and Cody should be feeling like a box of fluffy ducks.
But wow, he scared us. I guess the first big infection is scary as hell and then the next time you know the drill and after the 10th one you hardly blink. I cant ever see my self getting used to this roller coaster ride. But the best news is that he will be ok and no damage has been done by the high temps etc.
But wow, he scared us. I guess the first big infection is scary as hell and then the next time you know the drill and after the 10th one you hardly blink. I cant ever see my self getting used to this roller coaster ride. But the best news is that he will be ok and no damage has been done by the high temps etc.
Monday, January 28, 2008
Cody still serious....
Weds last week (the day of the New Idea photo shoot) Cody had been released from hospital and was so thrilled to be home. BUT.......and theres always that bloody BUT..........he was feeling weird. He had a funny pain in his kidney. His mother and I both felt this was not right and rang to check up about it. We were told to take a urine sample and his temp and just watch him over night. 11pm saw his temp shoot up and off to ED they went. They were admitted immediately and put into the ICU room on Ward 10 and was classed as serious but unstable. His temp spiked at 41 degs the next day. I don't think I have held my breath for as long as I did that day......waiting for his body to respond to the meds and his temp to drop. Friday afternoon he was settled and was down graded to Serious but stable. Just when we thought he was responding and getting better his temp spiked again. Not as bad as earlier but scary enough. This carried on over the weekend. One minute thinking he was responding the next praying he can still fight. Now his temp has finally leveled out BUT........his oxygen levels are dropping....which I am told is not good. So he has been graded Serious but unstable. Sadly he has little energy and so even playing his fav games on play station tires him out so he lays and steers out his window and now says very little. I think I am most worried about his mind at present. There is not much else for him to do but lay there and think...........................................................
Update...
The reason why cody has not had the energy to do anything is because his hemoglobin levels had dropped so cody needs a blood transplant. They say within 12 hours or so we should see a brighter happier cody. Yay...I could kiss that doc!! Also big Kudoos to Powerstore. they have donated a Phillips Ipod for cody. So now he can listen to his fav music and concentrate on getting well again.
Update...
The reason why cody has not had the energy to do anything is because his hemoglobin levels had dropped so cody needs a blood transplant. They say within 12 hours or so we should see a brighter happier cody. Yay...I could kiss that doc!! Also big Kudoos to Powerstore. they have donated a Phillips Ipod for cody. So now he can listen to his fav music and concentrate on getting well again.
Wednesday, January 23, 2008
Thank You
I would like to take a moment and thank all those who have donated to Cody's Fund. To those who have taken a moment to stop by this blog and leave comments of support.
I wish to thank the Quilters Group who so kindly made a quilt for Cody. A special thank you to the Grandmother in Takaka who donated after the tins had been stolen and to the Collingwood Community and church who have been donating regularly. A huge thank you to Healing Hands for their very generous donation. A thank you to those who gave presents at Xmas time to Cody and that helped make Xmas an enjoyable time to him and his family. Thank you to the Trade Me community, you kept me going with your support. A heart felt thank you to the family's that have come forward offering advise and support as they too are on the journey we have just started. I wish I could name each and every one of you .... So please accept this as our personal thanks. You are all angels.
I wish to thank the Quilters Group who so kindly made a quilt for Cody. A special thank you to the Grandmother in Takaka who donated after the tins had been stolen and to the Collingwood Community and church who have been donating regularly. A huge thank you to Healing Hands for their very generous donation. A thank you to those who gave presents at Xmas time to Cody and that helped make Xmas an enjoyable time to him and his family. Thank you to the Trade Me community, you kept me going with your support. A heart felt thank you to the family's that have come forward offering advise and support as they too are on the journey we have just started. I wish I could name each and every one of you .... So please accept this as our personal thanks. You are all angels.
Saturday, January 19, 2008
The Meeting Of The Medical Team
The meeting went really well. We cleared up some confusion caused by the good ol’ miscommunication bug that seems to hit more regularly than needed.
Cody will be given a low fat diet and will be able to eat small amounts in about a week. The amazing part about this is that we had thought it would have blended or mashed. But no, Cody can munch away on anything that is on the list from his dietitian. Already his bowel has started to function as it is processing the small amount that he has eaten in experimentation. It was thought that it would pass with in 20 mins of eating but Cody held it for 4 hours, which is just fantastic.
The surgeon explained to us that the operation just done has given Cody approx 5 years. By being able to eat it means that best case scenario, Cody only has to hook up to TPN 4 nights a week not 7 which will slow down the damage to his liver. So instead of looking at the need for a bowel and liver transplant within a year, we now have some time….approx 5 but it is still guess work. I think we had all hoped for that small miracle. The one where his bowel does miraculous things and works normally and that he wont need the transplant ever. But, now we know transplant is inevitable.
Cody still has to inject himself many times each day and so under the advise of another mum whose child is currently awaiting transplant. I suggested they insert a butterfly so it would spare his poor legs from looking like pincushions. The team thought that was a great idea and were going to fit him with one after the meeting. (So a big thanks for that one Jodee)
The best news of all (for us) is that Toronto are now also checking in on Cody too, so he in effect has two heath teams watching over him.
For Cody though, the best news was that he could go home for 48 hours. He has to return Monday for another check up and will be fully discharged on Tuesday. Cody hates being in hospital; it really gets him down so we try to get him home as soon as possible. He gets immediate care at home and remains much happier. Which is a win/win really.
Cody will be given a low fat diet and will be able to eat small amounts in about a week. The amazing part about this is that we had thought it would have blended or mashed. But no, Cody can munch away on anything that is on the list from his dietitian. Already his bowel has started to function as it is processing the small amount that he has eaten in experimentation. It was thought that it would pass with in 20 mins of eating but Cody held it for 4 hours, which is just fantastic.
The surgeon explained to us that the operation just done has given Cody approx 5 years. By being able to eat it means that best case scenario, Cody only has to hook up to TPN 4 nights a week not 7 which will slow down the damage to his liver. So instead of looking at the need for a bowel and liver transplant within a year, we now have some time….approx 5 but it is still guess work. I think we had all hoped for that small miracle. The one where his bowel does miraculous things and works normally and that he wont need the transplant ever. But, now we know transplant is inevitable.
Cody still has to inject himself many times each day and so under the advise of another mum whose child is currently awaiting transplant. I suggested they insert a butterfly so it would spare his poor legs from looking like pincushions. The team thought that was a great idea and were going to fit him with one after the meeting. (So a big thanks for that one Jodee)
The best news of all (for us) is that Toronto are now also checking in on Cody too, so he in effect has two heath teams watching over him.
For Cody though, the best news was that he could go home for 48 hours. He has to return Monday for another check up and will be fully discharged on Tuesday. Cody hates being in hospital; it really gets him down so we try to get him home as soon as possible. He gets immediate care at home and remains much happier. Which is a win/win really.
Tuesday, January 15, 2008
From Cody's Mum
Cody's mum here - Cody had his gallbladder removed as well as having the remainder of his small and large bowel joined - he is doing well and will feel very uncomfortable for a few weeks - today was hot and Cody felt it poor lad stuck in a hospital - he will be able to start eating small amounts in a week or two so is lucky as initially we were told that he would not be able to eat anything orally until his transplant - now we wait for a miracle - it is hoped that the large bowel will take over some of the nutritional absorptive abilities that the small bowel has - there is a small chance that this will happen so prayers and healing being sent from all you wonderful people would be much appreciated hugs from us in Nelson NZ - and much thanks for your support and good wishes .
Monday, January 14, 2008
Cody's First........
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.
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.
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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