Happy 21st Birthday!!

I have great delight in wishing Cody a very happy 21st birthday.

When Cody first got sick, we were told he would be lucky to live for a very few short years. We didnt believe that and got a second opinion by taking Cody to Auckland.

His life changed from this move, but even so the top Dr did say to Natalie and I....if he makes it to 21...go buy him a lotto ticket.

Well I wanted to give him a big surprise for his birthday...it wasnt quite the big lotto win, but the reacon I got .... it may has well been.

Cody has gained 8kg in the last year and is now looking fantastic....and dare I say it. Very healthy and well.

I cant wait to see what Cody will achieve in the next 9 years so I can be a part of his 30th!!

Cody has just opened his present and I think the look on his face is priceless. I am sure he said "Wahooo"

Xmas 2011

I think the above photo says it all!!!

This is Cody with his older brother Jefford. They went out a couple of months ago for a few quiet drinks and this photo was snapped. It shows a much happier and healthier Cody. Something we were all told would NEVER happen.

Next month Cody will turn 21!!!

From here on in this blog will be updated yearly on his birthday - all due to Cody doing so well.

Happy Birthday!!!!!

Today Cody turns 20!!!!

This is something that we were told probably would not happen. In fact there were days that were we sure this would not happen.

But Cody showed every one how wrong they were and what a fighter he was.

Cody has showed so much courage and determination over the last few years and it has been the making of a remarkable man!!

I wish you all the best for today and for the many more birthdays I know we will all share with you.

Another year down the track

Its hard to believe yet another year has gone past. Nothing dramatic has happened for Cody and in this we say "thank god"!

The fistular operation has been a huge success and has given Cody more freedom. Cody has not been able to return to his course as he has just not regained the weight lost from the stress of it all.

The only negative for Cody is pain.....sadly this is a common side effect and nothing really can be done, you just live with it and managing it.

On a positive note - Cody got his restricted!!!!



here is Cody jammin on the door step.

Tech for Cody

A quick update.....

Cody applied to be excepted to the NMIT for a Chef Course. He found out last week that he has been excepted and starts this Monday. It goes for the year and will gain him qualifications to help with his dream of being a Chef. Who knows....one day he may yet own his own restaurant.

He has also been having driving lessons and hopes to be mobile by June when he can sit his restricted.

It is a pleasure and a joy to see this young man develop and grow and achieve what we were all told would be impossible.

2 years on and he is alive, eating and getting back to his normal way of life. All of which we were told would never happen.

I will up date here as he progress's through his course.

Another Year has passed.....

So as told .. Cody had his hicman line removed....the reason for his is to keep his last veins clear and capable to be used when transplant becomes necessary. Which now means that he has to use his fistula as that is the only way he can feed with his TPN now. This also means that if he can master his fistula it will put off the need for transplant for at least 5 possibly 10 years. That is great news as the transplant is not an option we want to head for until we have too.

The specialists in Auckland are amazed at Cody with the fact he can eat so much. He was told that he should only be able to taste food...meaning small mouth fulls, but Cody has been able to eat full meals. So far he is not gaining any nourishment, but with Cody so far deifying everything that the Doctors have said he cant do...............who knows what the future can hold for him.

The best news is that Cody sat his learners licence and passed it.......so now he can start driving and getting a little more independent.

Christmas came and went, and we all reflected on the fact that it is nothing short of a miracle that he is still here and do so well. Cody was told he would most likely not make a year...............and here he is ... TWO years on.

Now to see that he is still here in TEN years time.

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.

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 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.

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

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.

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.

Photo above is of Cody and Natalie when they first went to auckland. Taken in the sky tower.

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.

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.

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.

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.

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.