What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

NG tubes vs G tubes

J

JazzysMom

New member
OMG I just had a flash back from 23 years ago.....my Dad had a stroke & lost use of his throat muslces so he couldnt eat. He had a G tube put in for when he came home.

It got "clogged" & he freaked out. I mean panicked like I had never seen my Dad do. I was 16 & NOW remember saying to him....Calm down, "we" will figure it out....MY Mom was not home at the time.

Sorry didnt mean to ramble, but its perfect example of how important it is for him not to feel like he is in it alone. My Dad calmed down & we got it straightened out. ALL before my Mom came home. I cant believe I remember that day.......
 
J

JazzysMom

New member
OMG I just had a flash back from 23 years ago.....my Dad had a stroke & lost use of his throat muslces so he couldnt eat. He had a G tube put in for when he came home.

It got "clogged" & he freaked out. I mean panicked like I had never seen my Dad do. I was 16 & NOW remember saying to him....Calm down, "we" will figure it out....MY Mom was not home at the time.

Sorry didnt mean to ramble, but its perfect example of how important it is for him not to feel like he is in it alone. My Dad calmed down & we got it straightened out. ALL before my Mom came home. I cant believe I remember that day.......
 
J

JazzysMom

New member
OMG I just had a flash back from 23 years ago.....my Dad had a stroke & lost use of his throat muslces so he couldnt eat. He had a G tube put in for when he came home.

It got "clogged" & he freaked out. I mean panicked like I had never seen my Dad do. I was 16 & NOW remember saying to him....Calm down, "we" will figure it out....MY Mom was not home at the time.

Sorry didnt mean to ramble, but its perfect example of how important it is for him not to feel like he is in it alone. My Dad calmed down & we got it straightened out. ALL before my Mom came home. I cant believe I remember that day.......
 
J

JazzysMom

New member
OMG I just had a flash back from 23 years ago.....my Dad had a stroke & lost use of his throat muslces so he couldnt eat. He had a G tube put in for when he came home.

It got "clogged" & he freaked out. I mean panicked like I had never seen my Dad do. I was 16 & NOW remember saying to him....Calm down, "we" will figure it out....MY Mom was not home at the time.

Sorry didnt mean to ramble, but its perfect example of how important it is for him not to feel like he is in it alone. My Dad calmed down & we got it straightened out. ALL before my Mom came home. I cant believe I remember that day.......
 
J

JazzysMom

New member
OMG I just had a flash back from 23 years ago.....my Dad had a stroke & lost use of his throat muslces so he couldnt eat. He had a G tube put in for when he came home.

It got "clogged" & he freaked out. I mean panicked like I had never seen my Dad do. I was 16 & NOW remember saying to him....Calm down, "we" will figure it out....MY Mom was not home at the time.

Sorry didnt mean to ramble, but its perfect example of how important it is for him not to feel like he is in it alone. My Dad calmed down & we got it straightened out. ALL before my Mom came home. I cant believe I remember that day.......
 
J

jimiv

New member
Is there a good link to learn about the whole process now. How long does a feeding take? Is there a set formula about the food? Is it only possible to use a formula or can you make your own recipies? How hard is it to clean? Does it use gravity to feed the tube or is there a machine? What sort of problems came up for ya'll when a feeding tube entered your families? I am starting my own research but I thought I would ask ya'll. It is sort of funny that this month my wife gets her tonsils out, I am getting 3 wisdom teeth pulled that are fused to my jaw and Parker gets his tube. I guess in our house it will be a month of mush.
 
J

jimiv

New member
Is there a good link to learn about the whole process now. How long does a feeding take? Is there a set formula about the food? Is it only possible to use a formula or can you make your own recipies? How hard is it to clean? Does it use gravity to feed the tube or is there a machine? What sort of problems came up for ya'll when a feeding tube entered your families? I am starting my own research but I thought I would ask ya'll. It is sort of funny that this month my wife gets her tonsils out, I am getting 3 wisdom teeth pulled that are fused to my jaw and Parker gets his tube. I guess in our house it will be a month of mush.
 
J

jimiv

New member
Is there a good link to learn about the whole process now. How long does a feeding take? Is there a set formula about the food? Is it only possible to use a formula or can you make your own recipies? How hard is it to clean? Does it use gravity to feed the tube or is there a machine? What sort of problems came up for ya'll when a feeding tube entered your families? I am starting my own research but I thought I would ask ya'll. It is sort of funny that this month my wife gets her tonsils out, I am getting 3 wisdom teeth pulled that are fused to my jaw and Parker gets his tube. I guess in our house it will be a month of mush.
 
J

jimiv

New member
Is there a good link to learn about the whole process now. How long does a feeding take? Is there a set formula about the food? Is it only possible to use a formula or can you make your own recipies? How hard is it to clean? Does it use gravity to feed the tube or is there a machine? What sort of problems came up for ya'll when a feeding tube entered your families? I am starting my own research but I thought I would ask ya'll. It is sort of funny that this month my wife gets her tonsils out, I am getting 3 wisdom teeth pulled that are fused to my jaw and Parker gets his tube. I guess in our house it will be a month of mush.
 
J

jimiv

New member
Is there a good link to learn about the whole process now. How long does a feeding take? Is there a set formula about the food? Is it only possible to use a formula or can you make your own recipies? How hard is it to clean? Does it use gravity to feed the tube or is there a machine? What sort of problems came up for ya'll when a feeding tube entered your families? I am starting my own research but I thought I would ask ya'll. It is sort of funny that this month my wife gets her tonsils out, I am getting 3 wisdom teeth pulled that are fused to my jaw and Parker gets his tube. I guess in our house it will be a month of mush.
 
J

Jane

Digital opinion leader
You have a lot of questions - good for you! Let me start by saying like anything else, you can only learn so much before hand, it won't make sense until you live with it. This link has a ton of info. Many categories (equipment, surgery etc).

<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/gtube.htm
">http://www3.nbnet.nb.ca/normap/gtube.htm
</a>

Basically once you have the tube in place you begin night feeds. The formula is put into a bag with a long tube. The tube goes through a pump (Kangaroo pump) and connects to a connector tube. One end hooks into your son's button. The pump is set to run over several hours. Most of the time it is set for overnight or 8 hours. The rate can be adjusted for faster or slower. It will take a few tries to get the right setting so your son won't feel too full when he wakes up.

Formula varies too (consistancy, calories, vitamins- etc). It took us a few tries to find the right fit for that too.

Did your doc talk to you about the kid of button Parker will be getting? There is the MIC-KEY style which is pretty common. There is also the Bard style. There are pros and cons to both. Check the links. My kids chose the Bard because it is flatter against their stomach. BUT it can come undone easier than a MIC-KEY.

My funny story (not so funny at the time) is during the first few months of having the tubes they came disconnected at night and leaked all over the bedding. We've since used rubber bed pads and taped down the tubes. Once, Jesse's tube came undone and dropped on the floor where it continued to pump ALL NIGHT. It seeped into the carpet, through the floor boards and into the cellar! I found a hug puddle on the cellar floor- sticky and gross the next morning. YUCK!

As far as cleaning, its not too bad. The tubes rinse out and can be re-used for a week. The bags get thrown away every morning. Storage for all the stuff is another story. We ended up getting new beds for the boys with storage drawers underneath. The tubes, bags, tape, gauze all take up a lot of room, never mind the cases of formula!

I'll stop talking now. But please ask anything!
 
J

Jane

Digital opinion leader
You have a lot of questions - good for you! Let me start by saying like anything else, you can only learn so much before hand, it won't make sense until you live with it. This link has a ton of info. Many categories (equipment, surgery etc).

<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/gtube.htm
">http://www3.nbnet.nb.ca/normap/gtube.htm
</a>

Basically once you have the tube in place you begin night feeds. The formula is put into a bag with a long tube. The tube goes through a pump (Kangaroo pump) and connects to a connector tube. One end hooks into your son's button. The pump is set to run over several hours. Most of the time it is set for overnight or 8 hours. The rate can be adjusted for faster or slower. It will take a few tries to get the right setting so your son won't feel too full when he wakes up.

Formula varies too (consistancy, calories, vitamins- etc). It took us a few tries to find the right fit for that too.

Did your doc talk to you about the kid of button Parker will be getting? There is the MIC-KEY style which is pretty common. There is also the Bard style. There are pros and cons to both. Check the links. My kids chose the Bard because it is flatter against their stomach. BUT it can come undone easier than a MIC-KEY.

My funny story (not so funny at the time) is during the first few months of having the tubes they came disconnected at night and leaked all over the bedding. We've since used rubber bed pads and taped down the tubes. Once, Jesse's tube came undone and dropped on the floor where it continued to pump ALL NIGHT. It seeped into the carpet, through the floor boards and into the cellar! I found a hug puddle on the cellar floor- sticky and gross the next morning. YUCK!

As far as cleaning, its not too bad. The tubes rinse out and can be re-used for a week. The bags get thrown away every morning. Storage for all the stuff is another story. We ended up getting new beds for the boys with storage drawers underneath. The tubes, bags, tape, gauze all take up a lot of room, never mind the cases of formula!

I'll stop talking now. But please ask anything!
 
J

Jane

Digital opinion leader
You have a lot of questions - good for you! Let me start by saying like anything else, you can only learn so much before hand, it won't make sense until you live with it. This link has a ton of info. Many categories (equipment, surgery etc).

<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/gtube.htm
">http://www3.nbnet.nb.ca/normap/gtube.htm
</a>

Basically once you have the tube in place you begin night feeds. The formula is put into a bag with a long tube. The tube goes through a pump (Kangaroo pump) and connects to a connector tube. One end hooks into your son's button. The pump is set to run over several hours. Most of the time it is set for overnight or 8 hours. The rate can be adjusted for faster or slower. It will take a few tries to get the right setting so your son won't feel too full when he wakes up.

Formula varies too (consistancy, calories, vitamins- etc). It took us a few tries to find the right fit for that too.

Did your doc talk to you about the kid of button Parker will be getting? There is the MIC-KEY style which is pretty common. There is also the Bard style. There are pros and cons to both. Check the links. My kids chose the Bard because it is flatter against their stomach. BUT it can come undone easier than a MIC-KEY.

My funny story (not so funny at the time) is during the first few months of having the tubes they came disconnected at night and leaked all over the bedding. We've since used rubber bed pads and taped down the tubes. Once, Jesse's tube came undone and dropped on the floor where it continued to pump ALL NIGHT. It seeped into the carpet, through the floor boards and into the cellar! I found a hug puddle on the cellar floor- sticky and gross the next morning. YUCK!

As far as cleaning, its not too bad. The tubes rinse out and can be re-used for a week. The bags get thrown away every morning. Storage for all the stuff is another story. We ended up getting new beds for the boys with storage drawers underneath. The tubes, bags, tape, gauze all take up a lot of room, never mind the cases of formula!

I'll stop talking now. But please ask anything!
 
J

Jane

Digital opinion leader
You have a lot of questions - good for you! Let me start by saying like anything else, you can only learn so much before hand, it won't make sense until you live with it. This link has a ton of info. Many categories (equipment, surgery etc).

<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/gtube.htm
">http://www3.nbnet.nb.ca/normap/gtube.htm
</a>

Basically once you have the tube in place you begin night feeds. The formula is put into a bag with a long tube. The tube goes through a pump (Kangaroo pump) and connects to a connector tube. One end hooks into your son's button. The pump is set to run over several hours. Most of the time it is set for overnight or 8 hours. The rate can be adjusted for faster or slower. It will take a few tries to get the right setting so your son won't feel too full when he wakes up.

Formula varies too (consistancy, calories, vitamins- etc). It took us a few tries to find the right fit for that too.

Did your doc talk to you about the kid of button Parker will be getting? There is the MIC-KEY style which is pretty common. There is also the Bard style. There are pros and cons to both. Check the links. My kids chose the Bard because it is flatter against their stomach. BUT it can come undone easier than a MIC-KEY.

My funny story (not so funny at the time) is during the first few months of having the tubes they came disconnected at night and leaked all over the bedding. We've since used rubber bed pads and taped down the tubes. Once, Jesse's tube came undone and dropped on the floor where it continued to pump ALL NIGHT. It seeped into the carpet, through the floor boards and into the cellar! I found a hug puddle on the cellar floor- sticky and gross the next morning. YUCK!

As far as cleaning, its not too bad. The tubes rinse out and can be re-used for a week. The bags get thrown away every morning. Storage for all the stuff is another story. We ended up getting new beds for the boys with storage drawers underneath. The tubes, bags, tape, gauze all take up a lot of room, never mind the cases of formula!

I'll stop talking now. But please ask anything!
 
J

Jane

Digital opinion leader
You have a lot of questions - good for you! Let me start by saying like anything else, you can only learn so much before hand, it won't make sense until you live with it. This link has a ton of info. Many categories (equipment, surgery etc).

<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/gtube.htm
">http://www3.nbnet.nb.ca/normap/gtube.htm
</a>

Basically once you have the tube in place you begin night feeds. The formula is put into a bag with a long tube. The tube goes through a pump (Kangaroo pump) and connects to a connector tube. One end hooks into your son's button. The pump is set to run over several hours. Most of the time it is set for overnight or 8 hours. The rate can be adjusted for faster or slower. It will take a few tries to get the right setting so your son won't feel too full when he wakes up.

Formula varies too (consistancy, calories, vitamins- etc). It took us a few tries to find the right fit for that too.

Did your doc talk to you about the kid of button Parker will be getting? There is the MIC-KEY style which is pretty common. There is also the Bard style. There are pros and cons to both. Check the links. My kids chose the Bard because it is flatter against their stomach. BUT it can come undone easier than a MIC-KEY.

My funny story (not so funny at the time) is during the first few months of having the tubes they came disconnected at night and leaked all over the bedding. We've since used rubber bed pads and taped down the tubes. Once, Jesse's tube came undone and dropped on the floor where it continued to pump ALL NIGHT. It seeped into the carpet, through the floor boards and into the cellar! I found a hug puddle on the cellar floor- sticky and gross the next morning. YUCK!

As far as cleaning, its not too bad. The tubes rinse out and can be re-used for a week. The bags get thrown away every morning. Storage for all the stuff is another story. We ended up getting new beds for the boys with storage drawers underneath. The tubes, bags, tape, gauze all take up a lot of room, never mind the cases of formula!

I'll stop talking now. But please ask anything!
 
I

izemmom

New member
I can echo most of what Jsane wrote. But, I wanted to add, some of the specifics that she mentioned are different for us, just because we are using different products. For example, the tubing is connected to the bags we use so the whole unit gets tossed in the morning.

Also, we started with an actual tube in the tummy, not a button. It went through th e same incision that her button is in now, but it was a long tube that connected to the pump tubing. Our gi doc insisted on it. Emily didn't switch to a button until the PEG tube had been in place for at least 6 weeks. Your docs will have a plan for Parker, and you'll be set up with whatever other materials are best for him from thier perspective. Just ask lots of questions before you leave the hospital.

We've had midnight leaks, too, but less often than I expected. Of course, Emily has learned to "unlock" the Mic-Key (I told the gi doc it would take her about 2 months to learn to do it after he assured us that children couldn't get them open...it toook about 6 weeks.) so now we occasionally wake up to a girl holding the tube with formula spurting out of it.

Good luck with your wisdon teeth. Hope that goes well.

With a little time the feeding tube will become like second nature.
 
I

izemmom

New member
I can echo most of what Jsane wrote. But, I wanted to add, some of the specifics that she mentioned are different for us, just because we are using different products. For example, the tubing is connected to the bags we use so the whole unit gets tossed in the morning.

Also, we started with an actual tube in the tummy, not a button. It went through th e same incision that her button is in now, but it was a long tube that connected to the pump tubing. Our gi doc insisted on it. Emily didn't switch to a button until the PEG tube had been in place for at least 6 weeks. Your docs will have a plan for Parker, and you'll be set up with whatever other materials are best for him from thier perspective. Just ask lots of questions before you leave the hospital.

We've had midnight leaks, too, but less often than I expected. Of course, Emily has learned to "unlock" the Mic-Key (I told the gi doc it would take her about 2 months to learn to do it after he assured us that children couldn't get them open...it toook about 6 weeks.) so now we occasionally wake up to a girl holding the tube with formula spurting out of it.

Good luck with your wisdon teeth. Hope that goes well.

With a little time the feeding tube will become like second nature.
 
I

izemmom

New member
I can echo most of what Jsane wrote. But, I wanted to add, some of the specifics that she mentioned are different for us, just because we are using different products. For example, the tubing is connected to the bags we use so the whole unit gets tossed in the morning.

Also, we started with an actual tube in the tummy, not a button. It went through th e same incision that her button is in now, but it was a long tube that connected to the pump tubing. Our gi doc insisted on it. Emily didn't switch to a button until the PEG tube had been in place for at least 6 weeks. Your docs will have a plan for Parker, and you'll be set up with whatever other materials are best for him from thier perspective. Just ask lots of questions before you leave the hospital.

We've had midnight leaks, too, but less often than I expected. Of course, Emily has learned to "unlock" the Mic-Key (I told the gi doc it would take her about 2 months to learn to do it after he assured us that children couldn't get them open...it toook about 6 weeks.) so now we occasionally wake up to a girl holding the tube with formula spurting out of it.

Good luck with your wisdon teeth. Hope that goes well.

With a little time the feeding tube will become like second nature.
 
I

izemmom

New member
I can echo most of what Jsane wrote. But, I wanted to add, some of the specifics that she mentioned are different for us, just because we are using different products. For example, the tubing is connected to the bags we use so the whole unit gets tossed in the morning.

Also, we started with an actual tube in the tummy, not a button. It went through th e same incision that her button is in now, but it was a long tube that connected to the pump tubing. Our gi doc insisted on it. Emily didn't switch to a button until the PEG tube had been in place for at least 6 weeks. Your docs will have a plan for Parker, and you'll be set up with whatever other materials are best for him from thier perspective. Just ask lots of questions before you leave the hospital.

We've had midnight leaks, too, but less often than I expected. Of course, Emily has learned to "unlock" the Mic-Key (I told the gi doc it would take her about 2 months to learn to do it after he assured us that children couldn't get them open...it toook about 6 weeks.) so now we occasionally wake up to a girl holding the tube with formula spurting out of it.

Good luck with your wisdon teeth. Hope that goes well.

With a little time the feeding tube will become like second nature.
 
I

izemmom

New member
I can echo most of what Jsane wrote. But, I wanted to add, some of the specifics that she mentioned are different for us, just because we are using different products. For example, the tubing is connected to the bags we use so the whole unit gets tossed in the morning.

Also, we started with an actual tube in the tummy, not a button. It went through th e same incision that her button is in now, but it was a long tube that connected to the pump tubing. Our gi doc insisted on it. Emily didn't switch to a button until the PEG tube had been in place for at least 6 weeks. Your docs will have a plan for Parker, and you'll be set up with whatever other materials are best for him from thier perspective. Just ask lots of questions before you leave the hospital.

We've had midnight leaks, too, but less often than I expected. Of course, Emily has learned to "unlock" the Mic-Key (I told the gi doc it would take her about 2 months to learn to do it after he assured us that children couldn't get them open...it toook about 6 weeks.) so now we occasionally wake up to a girl holding the tube with formula spurting out of it.

Good luck with your wisdon teeth. Hope that goes well.

With a little time the feeding tube will become like second nature.
 
You must log in or register to reply here.
Top