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.
2 comments:
I love the photo of you guys. (Good to see Cod and Natalie smiling again). Love your hair Nyle. Good luck for Sunday - you are motivated and determined and I am sure you will win. Nelson Hospital needs to get their act together - training - training - training and lots of compassion!!!!! I want to see Cod fulfilling his Chef dream - good on you two for demanding the Auckland trip. I may not be in Nelson but I am here if needed (I'll leave the running for you,Nyle :-) )
Last Thursday I launched a new organ donor register in New Zealand that gives an incentive to join. visit www.lifesharers.org.nz for more details
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