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.

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...........................................................

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.

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.

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.

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.

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.

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.

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.