<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sdelorenzo</b></i>
My son was on tpn for his first two weeks of life. He had high liver enzymes for a year after that. Although his liver enzymes have been good for 3 years since and his liver is the right size he still is the "cf liver disease" diagnosis. His GI dr said the tpn after his birth was really hard on his liver. I would definitely go for the g-tube. I would think it is much safer and overall easier. My daughter got a g-tube 8 months ago. She was 36 pounds when she got the g-tube and she is now 48. That is 12 pounds! Yea! I don't really understand how you are not ready for g-tube but you said your weight is dangerously low. That is what the g-tube if for. The g-tube is not permanent. It can be easily removed if you don't need it.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf</end quote></div>
My weight has been dangerously low before & I was able to get back up after 2 years. That was without the CFRD tho. I did discuss a g tube with my doctor a few years back during that time & she was against it for a few reasons tho I dont know if those reasons still apply until I speak with her.
She said that the g tube would complicated my wanting to eat on my own more because my stomach would be full from the nightime feedings. I dont need that for sure. She said the risk & difficulties placing a g tube in an adult CFer are greater because the muscles of the stomach wall have become stronger & overall more difficult to get thru.
I also am not ready for ANY type of surgery for my CF which is one reason I havent persued a port. There will be a time when I cant avoid these worries, but until then I am looking for alternatives.
Also my understanding is that TPN is easier to control for the CFRD because they can mix the insulin right in. This, of course, is according to my home health nurse.
As I have said there are things I need to discuss with my doctor herself.
Thank you for your input!
My son was on tpn for his first two weeks of life. He had high liver enzymes for a year after that. Although his liver enzymes have been good for 3 years since and his liver is the right size he still is the "cf liver disease" diagnosis. His GI dr said the tpn after his birth was really hard on his liver. I would definitely go for the g-tube. I would think it is much safer and overall easier. My daughter got a g-tube 8 months ago. She was 36 pounds when she got the g-tube and she is now 48. That is 12 pounds! Yea! I don't really understand how you are not ready for g-tube but you said your weight is dangerously low. That is what the g-tube if for. The g-tube is not permanent. It can be easily removed if you don't need it.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf</end quote></div>
My weight has been dangerously low before & I was able to get back up after 2 years. That was without the CFRD tho. I did discuss a g tube with my doctor a few years back during that time & she was against it for a few reasons tho I dont know if those reasons still apply until I speak with her.
She said that the g tube would complicated my wanting to eat on my own more because my stomach would be full from the nightime feedings. I dont need that for sure. She said the risk & difficulties placing a g tube in an adult CFer are greater because the muscles of the stomach wall have become stronger & overall more difficult to get thru.
I also am not ready for ANY type of surgery for my CF which is one reason I havent persued a port. There will be a time when I cant avoid these worries, but until then I am looking for alternatives.
Also my understanding is that TPN is easier to control for the CFRD because they can mix the insulin right in. This, of course, is according to my home health nurse.
As I have said there are things I need to discuss with my doctor herself.
Thank you for your input!