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.