G tube options????

M

Mom2Brinly

New member
The gi doc has given us 3 options for placing. G. Tube. Does anyone have opinions on these??? Here they are:
1- just a surgeon places the tube by attaching it to the stomach lining with stiches and then a mini button is placed right away. More invasive option with possible stomach moving or reshaping due to stiching.
2- a combo of the surgeon and gi doc working together by going down the throat and then placing the tube stills reqiures stiches to stomach. This is similar to option 1 and it is called a 3 in 1. It is less invasive and the mini button is placed right away.
3- just the gi doc places a tube thru the throat no stiches to stomach but a j peg is placed first then we would wait 2 months then place a mini button?? The tube is long and then cut down. This is the less invasive of them all.

What has been your experience? I am leaning toward the 2nd option to get it done all at one time with minimal surgery???

Many thanks!
Blythe
Mom2brinly
 
M

Mom2Brinly

New member
The gi doc has given us 3 options for placing. G. Tube. Does anyone have opinions on these??? Here they are:
1- just a surgeon places the tube by attaching it to the stomach lining with stiches and then a mini button is placed right away. More invasive option with possible stomach moving or reshaping due to stiching.
2- a combo of the surgeon and gi doc working together by going down the throat and then placing the tube stills reqiures stiches to stomach. This is similar to option 1 and it is called a 3 in 1. It is less invasive and the mini button is placed right away.
3- just the gi doc places a tube thru the throat no stiches to stomach but a j peg is placed first then we would wait 2 months then place a mini button?? The tube is long and then cut down. This is the less invasive of them all.

What has been your experience? I am leaning toward the 2nd option to get it done all at one time with minimal surgery???

Many thanks!
Blythe
Mom2brinly
 
J

JennyCoulon

New member
I can tell you we weren't given any options like that. The surgeon did a consultation and they just scheduled it. I know they just made a incision on his belly and placed it, as far as the specific's we weren't given that information.
 
J

JennyCoulon

New member
I can tell you we weren't given any options like that. The surgeon did a consultation and they just scheduled it. I know they just made a incision on his belly and placed it, as far as the specific's we weren't given that information.
 
C

CJPsMom

New member
We did the last option only because we were concerned about the stomach stitches, etc. Given that this was the third surgery (ileostomy & reattachment at birth & 8 weeks), we wanted something much less invasive.
We had the button placed 3 months later because he had to have a bronch done, so he had to go under anyways and we had it done while he was there.
I will say, that doing it this way gives you a pretty long tube (about 14 inches or so) that comes out of the belly. For us, it wasn't a big deal because he wasn't crawling, but for an older child, it might be an issue.
 
C

CJPsMom

New member
We did the last option only because we were concerned about the stomach stitches, etc. Given that this was the third surgery (ileostomy & reattachment at birth & 8 weeks), we wanted something much less invasive.
We had the button placed 3 months later because he had to have a bronch done, so he had to go under anyways and we had it done while he was there.
I will say, that doing it this way gives you a pretty long tube (about 14 inches or so) that comes out of the belly. For us, it wasn't a big deal because he wasn't crawling, but for an older child, it might be an issue.
 
H

hmw

New member
Emily has had a button placed two ways. There is no stomach moving or reshaping in any way. The first way was endoscopically- the surgeon put the tube down the throat and pulled it through her stomach wall. This is exactly how the "long" PEG tubes are placed, but she had a button placed this way. It was very very noninvasive and flat against her skin too! The only disadvantage was the tube could not be changed out by us- if it needed replacement we'd have to take her in (it was a solid mushroom type piece on the inside, not a water-filled balloon.)

When there were complications with this placement, she later had a laparoscopic procedure, where a tiny incision was made through the belly button for guidance (2 dissolvable stitches were put there after and it healed without incident and no visible evidence as its inside the naval) and the MicKey button was inserted from the outside. These are held in place with a water filled balloon on the inside, best for convenience. She had two stitches, non dissolvable, that were easily removed at her post op checkup- one on either side of the button.

I preferred the LOOK of the first one she had (Bard compatible) and the less invasive placement, but it's not as easily replaced.
I prefer the ease of replacement for the MicKey, but it doesn't have as flat a profile.
I insisted she not have the long tube placed- there was no MEDICAL need for it, surgeon convenience or their 'usual' procedure wasn't good enough for me as a reason. So when GI told me they only did PEG procedures I told them I'd go through Surgery, and chose a dr that would give us a button.
 
H

hmw

New member
Emily has had a button placed two ways. There is no stomach moving or reshaping in any way. The first way was endoscopically- the surgeon put the tube down the throat and pulled it through her stomach wall. This is exactly how the "long" PEG tubes are placed, but she had a button placed this way. It was very very noninvasive and flat against her skin too! The only disadvantage was the tube could not be changed out by us- if it needed replacement we'd have to take her in (it was a solid mushroom type piece on the inside, not a water-filled balloon.)

When there were complications with this placement, she later had a laparoscopic procedure, where a tiny incision was made through the belly button for guidance (2 dissolvable stitches were put there after and it healed without incident and no visible evidence as its inside the naval) and the MicKey button was inserted from the outside. These are held in place with a water filled balloon on the inside, best for convenience. She had two stitches, non dissolvable, that were easily removed at her post op checkup- one on either side of the button.

I preferred the LOOK of the first one she had (Bard compatible) and the less invasive placement, but it's not as easily replaced.
I prefer the ease of replacement for the MicKey, but it doesn't have as flat a profile.
I insisted she not have the long tube placed- there was no MEDICAL need for it, surgeon convenience or their 'usual' procedure wasn't good enough for me as a reason. So when GI told me they only did PEG procedures I told them I'd go through Surgery, and chose a dr that would give us a button.
 
M

Mom2Brinly

New member
Thank you!!

Harriet, I love it that you are such an advocate for emily!! I agree if I was not given the choices and had to have a long tube I would seek a surgeon too! It's a girl thing!! <img src="i/expressions/face-icon-small-wink.gif" border="0">

I keep asking the cf and gi docs if this was your daughter what would you do? They all said gi surgeon to place the button right away. We are waiting for the scheduling now.

I am actually excited! She has not gained any weight in over a year! She just keeps sprouting up not out!

I just hope it will help her keep her lungs healthy.

Many thanks again, you guys are always here!
Blythe
Mom2brinly
7 w cf
 
M

Mom2Brinly

New member
Thank you!!

Harriet, I love it that you are such an advocate for emily!! I agree if I was not given the choices and had to have a long tube I would seek a surgeon too! It's a girl thing!! <img src="i/expressions/face-icon-small-wink.gif" border="0">

I keep asking the cf and gi docs if this was your daughter what would you do? They all said gi surgeon to place the button right away. We are waiting for the scheduling now.

I am actually excited! She has not gained any weight in over a year! She just keeps sprouting up not out!

I just hope it will help her keep her lungs healthy.

Many thanks again, you guys are always here!
Blythe
Mom2brinly
7 w cf
 
A

Allansarmy

Guest
Here is my experience:
Small background story - My wife and I, were not really sure about even doing a feeding tube. I am going to be completely honest here. My son was 10 years old, and my wife and I were more concerned what other kids would think, or that other kids would make fun of him for having something poking out of his skin. This was a pure selfish motive looking back on it. One day at clinic a fill in doctor came into the room and asked why we had not considered the G-tube option. My son was severely under weight and we could not see this happening right before our very eyes. My son was an extremly picky eater, only chicken and it had to be baked chicken nothing fried. So his calorie intake was terrible, combine that with having CF you can see where that was heading. He had sunkin cheeks and ribs showing as we looked back at the pictures we were appalled at our own behavior. He doctor thought my son was 6 years old due to his height and weight. Even for a CF kid he was severely off the scales. After he told me bluntly, do you want your child to live a long life? The way he is going his mortality rate will be tripled and will more than likely not live to see 30. He did not give me an option at that point, he said we must get this done and within 2 weeks of that appointment we had the G-tube inserted. My son got his G-tube put in at age 10 (he is 15 now). The took him into surgery and from my understanding they basically made an incision into the stomach wall and and the placed a tube coming out of the stomach which measured approx 9 inches long. The said they had to leave it this long until the G-button was placed about 3 weeks later.
I will not give you the horror story of my son ripping this 9" tube out and us going into the ER to get his button put in (the GI doctor put our appointment off for over a month). Needless to say I was very upset about the whole thing.
But more happy thoughts here - Having the G-tube inserted was the best thing we ever had done. He gained 25 pounds in 4 months and the dietician was so pleased that she blacked his name out and used his growth scale showing weight and height improvement to show other parents that were debating.
My son first got a regular G-button that kinda poked out from the skin (almost looked like a plug that you would blow into, to blow up an air mattress). He now has a slim lined G-button that is very flush with his skin, he likes this one a lot. You can barely tell its there. Its a challenge on some nights to hook him up as he wants some breaks. So we will occasionally give him weekends off. He is 122 pounds and 5'7" tall now at 15, which is pretty good considering I am only 5'9". He still has some growing to do too.
Looking back, the G-button was the best thing we could have ever done for our child with CF. When my son goes to the pool in the summer he will occasionally have kids ask "what is that in your stomach". I can tell it bothers my son a bit as he tries and hide hit as he gets out of the pool. But he doesn't let it bother him as much now adays. He handles it in more mature way. He tells little kids that its nothing really, just something to keep him healthy and most kids accept that.
 
A

Allansarmy

Guest
Here is my experience:
Small background story - My wife and I, were not really sure about even doing a feeding tube. I am going to be completely honest here. My son was 10 years old, and my wife and I were more concerned what other kids would think, or that other kids would make fun of him for having something poking out of his skin. This was a pure selfish motive looking back on it. One day at clinic a fill in doctor came into the room and asked why we had not considered the G-tube option. My son was severely under weight and we could not see this happening right before our very eyes. My son was an extremly picky eater, only chicken and it had to be baked chicken nothing fried. So his calorie intake was terrible, combine that with having CF you can see where that was heading. He had sunkin cheeks and ribs showing as we looked back at the pictures we were appalled at our own behavior. He doctor thought my son was 6 years old due to his height and weight. Even for a CF kid he was severely off the scales. After he told me bluntly, do you want your child to live a long life? The way he is going his mortality rate will be tripled and will more than likely not live to see 30. He did not give me an option at that point, he said we must get this done and within 2 weeks of that appointment we had the G-tube inserted. My son got his G-tube put in at age 10 (he is 15 now). The took him into surgery and from my understanding they basically made an incision into the stomach wall and and the placed a tube coming out of the stomach which measured approx 9 inches long. The said they had to leave it this long until the G-button was placed about 3 weeks later.
I will not give you the horror story of my son ripping this 9" tube out and us going into the ER to get his button put in (the GI doctor put our appointment off for over a month). Needless to say I was very upset about the whole thing.
But more happy thoughts here - Having the G-tube inserted was the best thing we ever had done. He gained 25 pounds in 4 months and the dietician was so pleased that she blacked his name out and used his growth scale showing weight and height improvement to show other parents that were debating.
My son first got a regular G-button that kinda poked out from the skin (almost looked like a plug that you would blow into, to blow up an air mattress). He now has a slim lined G-button that is very flush with his skin, he likes this one a lot. You can barely tell its there. Its a challenge on some nights to hook him up as he wants some breaks. So we will occasionally give him weekends off. He is 122 pounds and 5'7" tall now at 15, which is pretty good considering I am only 5'9". He still has some growing to do too.
Looking back, the G-button was the best thing we could have ever done for our child with CF. When my son goes to the pool in the summer he will occasionally have kids ask "what is that in your stomach". I can tell it bothers my son a bit as he tries and hide hit as he gets out of the pool. But he doesn't let it bother him as much now adays. He handles it in more mature way. He tells little kids that its nothing really, just something to keep him healthy and most kids accept that.
 
M

Mommafirst

Guest
We had the choice as well. We only had the choice between 1 and 3. We chose 1 because we didn't want her to have to deal with the long tube. Her placement went very well and while we had some issues afterwards, in hindsight it was a very good decision.

My daughter has not gained as well as we would like, even with the tube, but we are investigating other causes right now. The tube is a lifesaver and really makes taking most meds, clean outs, and keeping hydrated much easier.
 
M

Mommafirst

Guest
We had the choice as well. We only had the choice between 1 and 3. We chose 1 because we didn't want her to have to deal with the long tube. Her placement went very well and while we had some issues afterwards, in hindsight it was a very good decision.

My daughter has not gained as well as we would like, even with the tube, but we are investigating other causes right now. The tube is a lifesaver and really makes taking most meds, clean outs, and keeping hydrated much easier.
 
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