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.

Cody went out to a birthday party over the weekend .... and was the centre of attention - as per photo

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.

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.

Here is a photo of Me, Natalie (codys mum) and Cody at the sky tower.

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.

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.

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??????

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.

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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.