G tubes

[Jane]

My boys got theirs three years ago and have had tremendous success! They were 9 and 13 at the time.

From a health point of view it was totally worth the surgery which they recovered from in a week or so. If they hadn't had their G-tubes last year when they were fighting the mycobacteria, I am convinced they wouldn't have survived. Josh still gets most of his calories overnight. Jesse who is a much better eater, only supplements on weekends.

From an emotional point of view, it took them much longer to recover. Being young teens, their sense of self esteem was shaky anyway. AFter the surgery, they really needed support via counseling and medication to get through the depression that resulted from being different.

Its not an easy decision, but for us it was the right one.

 

[Jane]

My boys got theirs three years ago and have had tremendous success! They were 9 and 13 at the time.

From a health point of view it was totally worth the surgery which they recovered from in a week or so. If they hadn't had their G-tubes last year when they were fighting the mycobacteria, I am convinced they wouldn't have survived. Josh still gets most of his calories overnight. Jesse who is a much better eater, only supplements on weekends.

From an emotional point of view, it took them much longer to recover. Being young teens, their sense of self esteem was shaky anyway. AFter the surgery, they really needed support via counseling and medication to get through the depression that resulted from being different.

Its not an easy decision, but for us it was the right one.

 

[Jane]

My boys got theirs three years ago and have had tremendous success! They were 9 and 13 at the time.

From a health point of view it was totally worth the surgery which they recovered from in a week or so. If they hadn't had their G-tubes last year when they were fighting the mycobacteria, I am convinced they wouldn't have survived. Josh still gets most of his calories overnight. Jesse who is a much better eater, only supplements on weekends.

From an emotional point of view, it took them much longer to recover. Being young teens, their sense of self esteem was shaky anyway. AFter the surgery, they really needed support via counseling and medication to get through the depression that resulted from being different.

Its not an easy decision, but for us it was the right one.

 

[Jane]

My boys got theirs three years ago and have had tremendous success! They were 9 and 13 at the time.

From a health point of view it was totally worth the surgery which they recovered from in a week or so. If they hadn't had their G-tubes last year when they were fighting the mycobacteria, I am convinced they wouldn't have survived. Josh still gets most of his calories overnight. Jesse who is a much better eater, only supplements on weekends.

From an emotional point of view, it took them much longer to recover. Being young teens, their sense of self esteem was shaky anyway. AFter the surgery, they really needed support via counseling and medication to get through the depression that resulted from being different.

Its not an easy decision, but for us it was the right one.

 

[AllansGirl]

I've never heard of this happening to anyone else, so take this with as many grains of salt as you'd like. But, my fiance died after having his g-tube placed.

The day before the surgery, Allan was in better health than I'd seen in a long time. We went to the State Fair, and wandered around for hours. He usually didn't have that kind of energy.

He was in so much pain for two days after the surgery, that he could not cough. He was expecting some pain, but he said it was the worst he'd experienced. Because he couldn't cough, it quickly led to a lung infection, which turned into respiratory failure. He had b. cepacia, and it crossed into his blood stream, and he became septic.

The doctors downplayed the risks of this operation. They touted it as a simple procedure--a one-night stay. They didn't start him on IV antibiotics beforehand, and that may have been a fatal mistake. I found a book later called something like, " The Care of CF Patients" and in it, they recommended 48 hours of IV antibiotics before the placing of a g-tube. By the time they started Allan on IVs, well after the procedure, it was too late.

I know others here have had positive experiences with g-tubes, so I'm not exactly advocating against them--but I do recommend doing your own research because it can be much more traumatic than your doctor may lead you to believe. So, I'm with fr3ak on this one. Try everything else first. I know Allan tried Scandishakes, and and did his best to eat all the high-calorie foods I constantly tried to force on him. He never tried an NG tube, though. I came so close to asking him not to get the g-tube the night before the surgery--it was on the tip of my tongue--I just couldn't shake the feeling of dread. Now it's my biggest regret.

If you go for it, go with your eyes wide open. Research it as much as you can, know the risks, and know how to minimize them.

 

[AllansGirl]

I've never heard of this happening to anyone else, so take this with as many grains of salt as you'd like. But, my fiance died after having his g-tube placed.

The day before the surgery, Allan was in better health than I'd seen in a long time. We went to the State Fair, and wandered around for hours. He usually didn't have that kind of energy.

He was in so much pain for two days after the surgery, that he could not cough. He was expecting some pain, but he said it was the worst he'd experienced. Because he couldn't cough, it quickly led to a lung infection, which turned into respiratory failure. He had b. cepacia, and it crossed into his blood stream, and he became septic.

The doctors downplayed the risks of this operation. They touted it as a simple procedure--a one-night stay. They didn't start him on IV antibiotics beforehand, and that may have been a fatal mistake. I found a book later called something like, " The Care of CF Patients" and in it, they recommended 48 hours of IV antibiotics before the placing of a g-tube. By the time they started Allan on IVs, well after the procedure, it was too late.

I know others here have had positive experiences with g-tubes, so I'm not exactly advocating against them--but I do recommend doing your own research because it can be much more traumatic than your doctor may lead you to believe. So, I'm with fr3ak on this one. Try everything else first. I know Allan tried Scandishakes, and and did his best to eat all the high-calorie foods I constantly tried to force on him. He never tried an NG tube, though. I came so close to asking him not to get the g-tube the night before the surgery--it was on the tip of my tongue--I just couldn't shake the feeling of dread. Now it's my biggest regret.

If you go for it, go with your eyes wide open. Research it as much as you can, know the risks, and know how to minimize them.

 

[AllansGirl]

I've never heard of this happening to anyone else, so take this with as many grains of salt as you'd like. But, my fiance died after having his g-tube placed.

The day before the surgery, Allan was in better health than I'd seen in a long time. We went to the State Fair, and wandered around for hours. He usually didn't have that kind of energy.

He was in so much pain for two days after the surgery, that he could not cough. He was expecting some pain, but he said it was the worst he'd experienced. Because he couldn't cough, it quickly led to a lung infection, which turned into respiratory failure. He had b. cepacia, and it crossed into his blood stream, and he became septic.

The doctors downplayed the risks of this operation. They touted it as a simple procedure--a one-night stay. They didn't start him on IV antibiotics beforehand, and that may have been a fatal mistake. I found a book later called something like, " The Care of CF Patients" and in it, they recommended 48 hours of IV antibiotics before the placing of a g-tube. By the time they started Allan on IVs, well after the procedure, it was too late.

I know others here have had positive experiences with g-tubes, so I'm not exactly advocating against them--but I do recommend doing your own research because it can be much more traumatic than your doctor may lead you to believe. So, I'm with fr3ak on this one. Try everything else first. I know Allan tried Scandishakes, and and did his best to eat all the high-calorie foods I constantly tried to force on him. He never tried an NG tube, though. I came so close to asking him not to get the g-tube the night before the surgery--it was on the tip of my tongue--I just couldn't shake the feeling of dread. Now it's my biggest regret.

If you go for it, go with your eyes wide open. Research it as much as you can, know the risks, and know how to minimize them.

 

[AllansGirl]

I've never heard of this happening to anyone else, so take this with as many grains of salt as you'd like. But, my fiance died after having his g-tube placed.

The day before the surgery, Allan was in better health than I'd seen in a long time. We went to the State Fair, and wandered around for hours. He usually didn't have that kind of energy.

He was in so much pain for two days after the surgery, that he could not cough. He was expecting some pain, but he said it was the worst he'd experienced. Because he couldn't cough, it quickly led to a lung infection, which turned into respiratory failure. He had b. cepacia, and it crossed into his blood stream, and he became septic.

The doctors downplayed the risks of this operation. They touted it as a simple procedure--a one-night stay. They didn't start him on IV antibiotics beforehand, and that may have been a fatal mistake. I found a book later called something like, " The Care of CF Patients" and in it, they recommended 48 hours of IV antibiotics before the placing of a g-tube. By the time they started Allan on IVs, well after the procedure, it was too late.

I know others here have had positive experiences with g-tubes, so I'm not exactly advocating against them--but I do recommend doing your own research because it can be much more traumatic than your doctor may lead you to believe. So, I'm with fr3ak on this one. Try everything else first. I know Allan tried Scandishakes, and and did his best to eat all the high-calorie foods I constantly tried to force on him. He never tried an NG tube, though. I came so close to asking him not to get the g-tube the night before the surgery--it was on the tip of my tongue--I just couldn't shake the feeling of dread. Now it's my biggest regret.

If you go for it, go with your eyes wide open. Research it as much as you can, know the risks, and know how to minimize them.

 

[AllansGirl]

I've never heard of this happening to anyone else, so take this with as many grains of salt as you'd like. But, my fiance died after having his g-tube placed.

The day before the surgery, Allan was in better health than I'd seen in a long time. We went to the State Fair, and wandered around for hours. He usually didn't have that kind of energy.

He was in so much pain for two days after the surgery, that he could not cough. He was expecting some pain, but he said it was the worst he'd experienced. Because he couldn't cough, it quickly led to a lung infection, which turned into respiratory failure. He had b. cepacia, and it crossed into his blood stream, and he became septic.

The doctors downplayed the risks of this operation. They touted it as a simple procedure--a one-night stay. They didn't start him on IV antibiotics beforehand, and that may have been a fatal mistake. I found a book later called something like, " The Care of CF Patients" and in it, they recommended 48 hours of IV antibiotics before the placing of a g-tube. By the time they started Allan on IVs, well after the procedure, it was too late.

I know others here have had positive experiences with g-tubes, so I'm not exactly advocating against them--but I do recommend doing your own research because it can be much more traumatic than your doctor may lead you to believe. So, I'm with fr3ak on this one. Try everything else first. I know Allan tried Scandishakes, and and did his best to eat all the high-calorie foods I constantly tried to force on him. He never tried an NG tube, though. I came so close to asking him not to get the g-tube the night before the surgery--it was on the tip of my tongue--I just couldn't shake the feeling of dread. Now it's my biggest regret.

If you go for it, go with your eyes wide open. Research it as much as you can, know the risks, and know how to minimize them.

 

[AllansGirl]

I've never heard of this happening to anyone else, so take this with as many grains of salt as you'd like. But, my fiance died after having his g-tube placed.

The day before the surgery, Allan was in better health than I'd seen in a long time. We went to the State Fair, and wandered around for hours. He usually didn't have that kind of energy.

He was in so much pain for two days after the surgery, that he could not cough. He was expecting some pain, but he said it was the worst he'd experienced. Because he couldn't cough, it quickly led to a lung infection, which turned into respiratory failure. He had b. cepacia, and it crossed into his blood stream, and he became septic.

The doctors downplayed the risks of this operation. They touted it as a simple procedure--a one-night stay. They didn't start him on IV antibiotics beforehand, and that may have been a fatal mistake. I found a book later called something like, " The Care of CF Patients" and in it, they recommended 48 hours of IV antibiotics before the placing of a g-tube. By the time they started Allan on IVs, well after the procedure, it was too late.

I know others here have had positive experiences with g-tubes, so I'm not exactly advocating against them--but I do recommend doing your own research because it can be much more traumatic than your doctor may lead you to believe. So, I'm with fr3ak on this one. Try everything else first. I know Allan tried Scandishakes, and and did his best to eat all the high-calorie foods I constantly tried to force on him. He never tried an NG tube, though. I came so close to asking him not to get the g-tube the night before the surgery--it was on the tip of my tongue--I just couldn't shake the feeling of dread. Now it's my biggest regret.

If you go for it, go with your eyes wide open. Research it as much as you can, know the risks, and know how to minimize them.

 

[Futant3]

Even though I am advocating it as a positive choice I would also agree that you should use all other measures before using this one. It is removable, supposedly the hole closes in as little as 4 hours and I'm sure it leaves a scar. However, I've heard of very few people getting theirs removed and not one of them was because they didn't need it anymore, it was usually do to some complication.

I'd imagine as with every surgery there is risks of infection and other bad things. I was going through a course of IV antibiotics at the time, and have taken oral antibiotics before any other procedures I've done CF related or not.

 

[Futant3]

Even though I am advocating it as a positive choice I would also agree that you should use all other measures before using this one. It is removable, supposedly the hole closes in as little as 4 hours and I'm sure it leaves a scar. However, I've heard of very few people getting theirs removed and not one of them was because they didn't need it anymore, it was usually do to some complication.

I'd imagine as with every surgery there is risks of infection and other bad things. I was going through a course of IV antibiotics at the time, and have taken oral antibiotics before any other procedures I've done CF related or not.

 

[Futant3]

Even though I am advocating it as a positive choice I would also agree that you should use all other measures before using this one. It is removable, supposedly the hole closes in as little as 4 hours and I'm sure it leaves a scar. However, I've heard of very few people getting theirs removed and not one of them was because they didn't need it anymore, it was usually do to some complication.

I'd imagine as with every surgery there is risks of infection and other bad things. I was going through a course of IV antibiotics at the time, and have taken oral antibiotics before any other procedures I've done CF related or not.

 

[Futant3]

Even though I am advocating it as a positive choice I would also agree that you should use all other measures before using this one. It is removable, supposedly the hole closes in as little as 4 hours and I'm sure it leaves a scar. However, I've heard of very few people getting theirs removed and not one of them was because they didn't need it anymore, it was usually do to some complication.

I'd imagine as with every surgery there is risks of infection and other bad things. I was going through a course of IV antibiotics at the time, and have taken oral antibiotics before any other procedures I've done CF related or not.

 

[Futant3]

Even though I am advocating it as a positive choice I would also agree that you should use all other measures before using this one. It is removable, supposedly the hole closes in as little as 4 hours and I'm sure it leaves a scar. However, I've heard of very few people getting theirs removed and not one of them was because they didn't need it anymore, it was usually do to some complication.

I'd imagine as with every surgery there is risks of infection and other bad things. I was going through a course of IV antibiotics at the time, and have taken oral antibiotics before any other procedures I've done CF related or not.

 

[Futant3]

Even though I am advocating it as a positive choice I would also agree that you should use all other measures before using this one. It is removable, supposedly the hole closes in as little as 4 hours and I'm sure it leaves a scar. However, I've heard of very few people getting theirs removed and not one of them was because they didn't need it anymore, it was usually do to some complication.

I'd imagine as with every surgery there is risks of infection and other bad things. I was going through a course of IV antibiotics at the time, and have taken oral antibiotics before any other procedures I've done CF related or not.

 

[jdprecious]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AllansGirl</b></i>

I've never heard of this happening to anyone else, so take this with as many grains of salt as you'd like. But, my fiance died after having his g-tube placed.



The day before the surgery, Allan was in better health than I'd seen in a long time. We went to the State Fair, and wandered around for hours. He usually didn't have that kind of energy.



He was in so much pain for two days after the surgery, that he could not cough. He was expecting some pain, but he said it was the worst he'd experienced. Because he couldn't cough, it quickly led to a lung infection, which turned into respiratory failure. He had b. cepacia, and it crossed into his blood stream, and he became septic.



The doctors downplayed the risks of this operation. They touted it as a simple procedure--a one-night stay. They didn't start him on IV antibiotics beforehand, and that may have been a fatal mistake. I found a book later called something like, " The Care of CF Patients" and in it, they recommended 48 hours of IV antibiotics before the placing of a g-tube. By the time they started Allan on IVs, well after the procedure, it was too late.



I know others here have had positive experiences with g-tubes, so I'm not exactly advocating against them--but I do recommend doing your own research because it can be much more traumatic than your doctor may lead you to believe. So, I'm with fr3ak on this one. Try everything else first. I know Allan tried Scandishakes, and and did his best to eat all the high-calorie foods I constantly tried to force on him. He never tried an NG tube, though. I came so close to asking him not to get the g-tube the night before the surgery--it was on the tip of my tongue--I just couldn't shake the feeling of dread. Now it's my biggest regret.



If you go for it, go with your eyes wide open. Research it as much as you can, know the risks, and know how to minimize them.</end quote></div>


My Gawd!!! I am just in frantic tears over your post. How absolutely frightening. Nothing is always as easy as it seems. And half the members here scoff at me bc I am scared to death to put my little one into the hospital for IV's. Your story is the reason why. You just never know what in Gods name can happen. Something similar happened to my dad. He went into the hospital for a lung biopsy and got an infection in the hospital. He never came home. I hate hospitals for that reason!

I am soooo very sorry for your loss! Hugs to you a million times!

 

[jdprecious]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AllansGirl</b></i>

I've never heard of this happening to anyone else, so take this with as many grains of salt as you'd like. But, my fiance died after having his g-tube placed.



The day before the surgery, Allan was in better health than I'd seen in a long time. We went to the State Fair, and wandered around for hours. He usually didn't have that kind of energy.



He was in so much pain for two days after the surgery, that he could not cough. He was expecting some pain, but he said it was the worst he'd experienced. Because he couldn't cough, it quickly led to a lung infection, which turned into respiratory failure. He had b. cepacia, and it crossed into his blood stream, and he became septic.



The doctors downplayed the risks of this operation. They touted it as a simple procedure--a one-night stay. They didn't start him on IV antibiotics beforehand, and that may have been a fatal mistake. I found a book later called something like, " The Care of CF Patients" and in it, they recommended 48 hours of IV antibiotics before the placing of a g-tube. By the time they started Allan on IVs, well after the procedure, it was too late.



I know others here have had positive experiences with g-tubes, so I'm not exactly advocating against them--but I do recommend doing your own research because it can be much more traumatic than your doctor may lead you to believe. So, I'm with fr3ak on this one. Try everything else first. I know Allan tried Scandishakes, and and did his best to eat all the high-calorie foods I constantly tried to force on him. He never tried an NG tube, though. I came so close to asking him not to get the g-tube the night before the surgery--it was on the tip of my tongue--I just couldn't shake the feeling of dread. Now it's my biggest regret.



If you go for it, go with your eyes wide open. Research it as much as you can, know the risks, and know how to minimize them.</end quote></div>


My Gawd!!! I am just in frantic tears over your post. How absolutely frightening. Nothing is always as easy as it seems. And half the members here scoff at me bc I am scared to death to put my little one into the hospital for IV's. Your story is the reason why. You just never know what in Gods name can happen. Something similar happened to my dad. He went into the hospital for a lung biopsy and got an infection in the hospital. He never came home. I hate hospitals for that reason!

I am soooo very sorry for your loss! Hugs to you a million times!

 

[jdprecious]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AllansGirl</b></i>

I've never heard of this happening to anyone else, so take this with as many grains of salt as you'd like. But, my fiance died after having his g-tube placed.



The day before the surgery, Allan was in better health than I'd seen in a long time. We went to the State Fair, and wandered around for hours. He usually didn't have that kind of energy.



He was in so much pain for two days after the surgery, that he could not cough. He was expecting some pain, but he said it was the worst he'd experienced. Because he couldn't cough, it quickly led to a lung infection, which turned into respiratory failure. He had b. cepacia, and it crossed into his blood stream, and he became septic.



The doctors downplayed the risks of this operation. They touted it as a simple procedure--a one-night stay. They didn't start him on IV antibiotics beforehand, and that may have been a fatal mistake. I found a book later called something like, " The Care of CF Patients" and in it, they recommended 48 hours of IV antibiotics before the placing of a g-tube. By the time they started Allan on IVs, well after the procedure, it was too late.



I know others here have had positive experiences with g-tubes, so I'm not exactly advocating against them--but I do recommend doing your own research because it can be much more traumatic than your doctor may lead you to believe. So, I'm with fr3ak on this one. Try everything else first. I know Allan tried Scandishakes, and and did his best to eat all the high-calorie foods I constantly tried to force on him. He never tried an NG tube, though. I came so close to asking him not to get the g-tube the night before the surgery--it was on the tip of my tongue--I just couldn't shake the feeling of dread. Now it's my biggest regret.



If you go for it, go with your eyes wide open. Research it as much as you can, know the risks, and know how to minimize them.</end quote></div>


My Gawd!!! I am just in frantic tears over your post. How absolutely frightening. Nothing is always as easy as it seems. And half the members here scoff at me bc I am scared to death to put my little one into the hospital for IV's. Your story is the reason why. You just never know what in Gods name can happen. Something similar happened to my dad. He went into the hospital for a lung biopsy and got an infection in the hospital. He never came home. I hate hospitals for that reason!

I am soooo very sorry for your loss! Hugs to you a million times!

 

[jdprecious]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AllansGirl</b></i>

I've never heard of this happening to anyone else, so take this with as many grains of salt as you'd like. But, my fiance died after having his g-tube placed.



The day before the surgery, Allan was in better health than I'd seen in a long time. We went to the State Fair, and wandered around for hours. He usually didn't have that kind of energy.



He was in so much pain for two days after the surgery, that he could not cough. He was expecting some pain, but he said it was the worst he'd experienced. Because he couldn't cough, it quickly led to a lung infection, which turned into respiratory failure. He had b. cepacia, and it crossed into his blood stream, and he became septic.



The doctors downplayed the risks of this operation. They touted it as a simple procedure--a one-night stay. They didn't start him on IV antibiotics beforehand, and that may have been a fatal mistake. I found a book later called something like, " The Care of CF Patients" and in it, they recommended 48 hours of IV antibiotics before the placing of a g-tube. By the time they started Allan on IVs, well after the procedure, it was too late.



I know others here have had positive experiences with g-tubes, so I'm not exactly advocating against them--but I do recommend doing your own research because it can be much more traumatic than your doctor may lead you to believe. So, I'm with fr3ak on this one. Try everything else first. I know Allan tried Scandishakes, and and did his best to eat all the high-calorie foods I constantly tried to force on him. He never tried an NG tube, though. I came so close to asking him not to get the g-tube the night before the surgery--it was on the tip of my tongue--I just couldn't shake the feeling of dread. Now it's my biggest regret.



If you go for it, go with your eyes wide open. Research it as much as you can, know the risks, and know how to minimize them.</end quote></div>


My Gawd!!! I am just in frantic tears over your post. How absolutely frightening. Nothing is always as easy as it seems. And half the members here scoff at me bc I am scared to death to put my little one into the hospital for IV's. Your story is the reason why. You just never know what in Gods name can happen. Something similar happened to my dad. He went into the hospital for a lung biopsy and got an infection in the hospital. He never came home. I hate hospitals for that reason!

I am soooo very sorry for your loss! Hugs to you a million times!