Help Deciding if G-Tube is Right

J

jayotto

Guest
Hi Everyone!

I think this is the first time I have posted.

My daughter, Emily (8yo) has not been gaining weight lately. We saw her Pulmonary Doctor yesterday, and she told Emily that it is time that we think about getting a G-Tube.

Does anyone have one? How did you make the decision to get one? Has it helped? How long does it hurt? If anyone can give me advice on this, I would appreciate it. Emily cried when the doctor talked to her about it, but seemed fine when the Child Life Specialist showed her a button on a doll. Once we got home, she was just devastated. She wants to be "normal".

Thank you for listening! I hate CF!

Jana, mom to Ashley (10 yo no CF) and Emily (8 yo w/CF)
 
J

jayotto

Guest
Hi Everyone!

I think this is the first time I have posted.

My daughter, Emily (8yo) has not been gaining weight lately. We saw her Pulmonary Doctor yesterday, and she told Emily that it is time that we think about getting a G-Tube.

Does anyone have one? How did you make the decision to get one? Has it helped? How long does it hurt? If anyone can give me advice on this, I would appreciate it. Emily cried when the doctor talked to her about it, but seemed fine when the Child Life Specialist showed her a button on a doll. Once we got home, she was just devastated. She wants to be "normal".

Thank you for listening! I hate CF!

Jana, mom to Ashley (10 yo no CF) and Emily (8 yo w/CF)
 
J

jayotto

Guest
Hi Everyone!

I think this is the first time I have posted.

My daughter, Emily (8yo) has not been gaining weight lately. We saw her Pulmonary Doctor yesterday, and she told Emily that it is time that we think about getting a G-Tube.

Does anyone have one? How did you make the decision to get one? Has it helped? How long does it hurt? If anyone can give me advice on this, I would appreciate it. Emily cried when the doctor talked to her about it, but seemed fine when the Child Life Specialist showed her a button on a doll. Once we got home, she was just devastated. She wants to be "normal".

Thank you for listening! I hate CF!

Jana, mom to Ashley (10 yo no CF) and Emily (8 yo w/CF)
 
A

anonymous

New member
Hi Jana,
Well I have two children with cf they were both diagnosed in Jan 2002. To answer some of your questions my son who was diagnosed first with cf at 1 has a g-tube and it has been the best thing ever. I really didn't want to get it either but we were at a point that it was a g-tube or no little boy so we got it right away. Trey was 18 months old and was below 0% on weight. He is now in kindergarten and will be 6 in Jan and he still has his g-tube for now. After they put it in he didn't act like it hurt at all. And at first it took some time to get used to but within a couple of weeks it was a breeze. I actually change them out myself when a new one is needed and I keep it clean every day with a drainage pad. Noone even knows he has it unless I tell them or they notice a little bump in his shirt. But usually no one says anything. He has lots of friends at school and does not complain about it at all. Yesterday was our Gi appointment and I am happy to say he is now at 50% on weight so the button is worth it. Since his weight has been up we have been in the hospital less and able to fight infections better. The first year he was diagnosed he was admitted 13 times. As of today a total of 21 times but only 2 were this year so he has improved greatly. The gi doc said yesterday that we can now stop feeds for 8 weeks and see how he does and if he does good then we will try no feeds for 5 more months and if we do not need it at all he will take it out. So it may not be a forever thing. We were admitted at the time they decided to put it in so I asked to see another child with one and that helped alot.
Trey slides down a slide on his tummy and plays rough like a little boy and we have been fine. This is our experience and everyone is different. But just wanted to share our story with ya.
If ya want to email me my address is burkhalter_95@sbcglobal.net
Jeanine mom to Sydney 9 w/cf, Trey 5 w/cf and Abbey 2 w/out cf
 
A

anonymous

New member
Hi Jana,
Well I have two children with cf they were both diagnosed in Jan 2002. To answer some of your questions my son who was diagnosed first with cf at 1 has a g-tube and it has been the best thing ever. I really didn't want to get it either but we were at a point that it was a g-tube or no little boy so we got it right away. Trey was 18 months old and was below 0% on weight. He is now in kindergarten and will be 6 in Jan and he still has his g-tube for now. After they put it in he didn't act like it hurt at all. And at first it took some time to get used to but within a couple of weeks it was a breeze. I actually change them out myself when a new one is needed and I keep it clean every day with a drainage pad. Noone even knows he has it unless I tell them or they notice a little bump in his shirt. But usually no one says anything. He has lots of friends at school and does not complain about it at all. Yesterday was our Gi appointment and I am happy to say he is now at 50% on weight so the button is worth it. Since his weight has been up we have been in the hospital less and able to fight infections better. The first year he was diagnosed he was admitted 13 times. As of today a total of 21 times but only 2 were this year so he has improved greatly. The gi doc said yesterday that we can now stop feeds for 8 weeks and see how he does and if he does good then we will try no feeds for 5 more months and if we do not need it at all he will take it out. So it may not be a forever thing. We were admitted at the time they decided to put it in so I asked to see another child with one and that helped alot.
Trey slides down a slide on his tummy and plays rough like a little boy and we have been fine. This is our experience and everyone is different. But just wanted to share our story with ya.
If ya want to email me my address is burkhalter_95@sbcglobal.net
Jeanine mom to Sydney 9 w/cf, Trey 5 w/cf and Abbey 2 w/out cf
 
A

anonymous

New member
Hi Jana,
Well I have two children with cf they were both diagnosed in Jan 2002. To answer some of your questions my son who was diagnosed first with cf at 1 has a g-tube and it has been the best thing ever. I really didn't want to get it either but we were at a point that it was a g-tube or no little boy so we got it right away. Trey was 18 months old and was below 0% on weight. He is now in kindergarten and will be 6 in Jan and he still has his g-tube for now. After they put it in he didn't act like it hurt at all. And at first it took some time to get used to but within a couple of weeks it was a breeze. I actually change them out myself when a new one is needed and I keep it clean every day with a drainage pad. Noone even knows he has it unless I tell them or they notice a little bump in his shirt. But usually no one says anything. He has lots of friends at school and does not complain about it at all. Yesterday was our Gi appointment and I am happy to say he is now at 50% on weight so the button is worth it. Since his weight has been up we have been in the hospital less and able to fight infections better. The first year he was diagnosed he was admitted 13 times. As of today a total of 21 times but only 2 were this year so he has improved greatly. The gi doc said yesterday that we can now stop feeds for 8 weeks and see how he does and if he does good then we will try no feeds for 5 more months and if we do not need it at all he will take it out. So it may not be a forever thing. We were admitted at the time they decided to put it in so I asked to see another child with one and that helped alot.
Trey slides down a slide on his tummy and plays rough like a little boy and we have been fine. This is our experience and everyone is different. But just wanted to share our story with ya.
If ya want to email me my address is burkhalter_95@sbcglobal.net
Jeanine mom to Sydney 9 w/cf, Trey 5 w/cf and Abbey 2 w/out cf
 
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