Whether to get a feeding tube or not?

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grantsmom

Guest
Grant got his feeding tube when he was 18months old. We struggled with his weight from day one. I tried everything I could think of to get him to gain weight but nothing helped. Once he got the tube it was amazing the difference we saw in just a couple of weeks. He is now 2 1/2 and is in the 78 percentile. It was the best decision I ever made for him. The only regret I have is that he didn't get one sooner. I have to admit it was a bit overwhelming at first learning how to put the enzymes through the tube but other than that it has been great. Please keep us updated on your little one. Take care
 
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grantsmom

Guest
Grant got his feeding tube when he was 18months old. We struggled with his weight from day one. I tried everything I could think of to get him to gain weight but nothing helped. Once he got the tube it was amazing the difference we saw in just a couple of weeks. He is now 2 1/2 and is in the 78 percentile. It was the best decision I ever made for him. The only regret I have is that he didn't get one sooner. I have to admit it was a bit overwhelming at first learning how to put the enzymes through the tube but other than that it has been great. Please keep us updated on your little one. Take care
 
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schmj4910

New member
hmw - Thanks for all of the great info! I'm glad you mentioned creating a button hole in one-piece sleepers. When we first found out we were getting our foster son, my mom and I went rummage sale crazy and bought tons of sleepers up to size 4T (he is currently wearing 12 month sleepers!). I like those better anyway because they aren't tight on his stomach, which is often bloated.

So I'm still worried that he will pull at the tube and pull it out overnight. Can that happen or am I worrying for nothing?

Thank you for explaining how to use the enzymes. Can you give me an example of your schedule? For example: Emily goes to bed at 9:00, when do you give the next dose of enzymes? I'm not sure how long the overnight feed takes.

Thanks for the heads-up on the "best" buttons. We will definitely ask for the Mini. Our CF team is really good and I'm sure that's what they will recommend.

I'm scared about the surgery and the hospitalization. We haven't had to do any of those yet.
 
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schmj4910

New member
hmw - Thanks for all of the great info! I'm glad you mentioned creating a button hole in one-piece sleepers. When we first found out we were getting our foster son, my mom and I went rummage sale crazy and bought tons of sleepers up to size 4T (he is currently wearing 12 month sleepers!). I like those better anyway because they aren't tight on his stomach, which is often bloated.

So I'm still worried that he will pull at the tube and pull it out overnight. Can that happen or am I worrying for nothing?

Thank you for explaining how to use the enzymes. Can you give me an example of your schedule? For example: Emily goes to bed at 9:00, when do you give the next dose of enzymes? I'm not sure how long the overnight feed takes.

Thanks for the heads-up on the "best" buttons. We will definitely ask for the Mini. Our CF team is really good and I'm sure that's what they will recommend.

I'm scared about the surgery and the hospitalization. We haven't had to do any of those yet.
 
S

schmj4910

New member
hmw - Thanks for all of the great info! I'm glad you mentioned creating a button hole in one-piece sleepers. When we first found out we were getting our foster son, my mom and I went rummage sale crazy and bought tons of sleepers up to size 4T (he is currently wearing 12 month sleepers!). I like those better anyway because they aren't tight on his stomach, which is often bloated.
<br />
<br />So I'm still worried that he will pull at the tube and pull it out overnight. Can that happen or am I worrying for nothing?
<br />
<br />Thank you for explaining how to use the enzymes. Can you give me an example of your schedule? For example: Emily goes to bed at 9:00, when do you give the next dose of enzymes? I'm not sure how long the overnight feed takes.
<br />
<br />Thanks for the heads-up on the "best" buttons. We will definitely ask for the Mini. Our CF team is really good and I'm sure that's what they will recommend.
<br />
<br />I'm scared about the surgery and the hospitalization. We haven't had to do any of those yet.
 
S

schmj4910

New member
Grantsmom - Thanks for replying! I'm relieved to hear that someone else got a tube at this early age. Did Grant try pulling the tube out overnight? Did you worry about the tube getting caught around his neck? Did the overnight feeds make him poop overnight? How is he doing with his regular eating now? Thanks!
 
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schmj4910

New member
Grantsmom - Thanks for replying! I'm relieved to hear that someone else got a tube at this early age. Did Grant try pulling the tube out overnight? Did you worry about the tube getting caught around his neck? Did the overnight feeds make him poop overnight? How is he doing with his regular eating now? Thanks!
 
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schmj4910

New member
Grantsmom - Thanks for replying! I'm relieved to hear that someone else got a tube at this early age. Did Grant try pulling the tube out overnight? Did you worry about the tube getting caught around his neck? Did the overnight feeds make him poop overnight? How is he doing with his regular eating now? Thanks!
 
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grantsmom

Guest
Grant never tried pulling his tube out and he never had a problem with pooping at night. I did worry about the tube getting wrapped around him so I slept in his room at first. My cf clinic did not recommend that but I felt safer. It never got wrapped around his neck but it did get wrapped around his waist a few times. Grants eating has never been good. He takes periactin to increase his hunger which has really helped. I can't say enough how much a feeding tube has helped him.
 
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grantsmom

Guest
Grant never tried pulling his tube out and he never had a problem with pooping at night. I did worry about the tube getting wrapped around him so I slept in his room at first. My cf clinic did not recommend that but I felt safer. It never got wrapped around his neck but it did get wrapped around his waist a few times. Grants eating has never been good. He takes periactin to increase his hunger which has really helped. I can't say enough how much a feeding tube has helped him.
 
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grantsmom

Guest
Grant never tried pulling his tube out and he never had a problem with pooping at night. I did worry about the tube getting wrapped around him so I slept in his room at first. My cf clinic did not recommend that but I felt safer. It never got wrapped around his neck but it did get wrapped around his waist a few times. Grants eating has never been good. He takes periactin to increase his hunger which has really helped. I can't say enough how much a feeding tube has helped him.
 
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hmw

New member
I put the pump at the foot of Emily's bed and run the extension and tubing down under the covers to the foot of the bed, not to the side to help minimize it getting wrapped around her, since this WAS an issue in the beginning. Some parents tape the extension to the waist and down the leg of their pj's so it moves with them as they roll around rather than pulling on the stoma and getting twisted up/wrapping around them.

Emily starts her feed right when she goes to bed, ideally around 9pm. She takes her enzymes orally then and gets hooked up. Midway before the feed (before I go to bed) she gets the 2nd dose, about 11:30. The feed completes about 2:00am and shuts off by itself allowing everyone to sleep the rest of the night and we disconnect her in the morning when she wakes up. (With the pump we have (Zevex Infinity), we can disable the alarm that would normally signal the end of a feed- when we were giving her enzymes at the end of a feed we needed this alarm. It is SO much better doing it mid-feed, since no one loses sleep this way!!)

Emily generally needs to poop in the morning now, but never during the night.
 
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hmw

New member
I put the pump at the foot of Emily's bed and run the extension and tubing down under the covers to the foot of the bed, not to the side to help minimize it getting wrapped around her, since this WAS an issue in the beginning. Some parents tape the extension to the waist and down the leg of their pj's so it moves with them as they roll around rather than pulling on the stoma and getting twisted up/wrapping around them.

Emily starts her feed right when she goes to bed, ideally around 9pm. She takes her enzymes orally then and gets hooked up. Midway before the feed (before I go to bed) she gets the 2nd dose, about 11:30. The feed completes about 2:00am and shuts off by itself allowing everyone to sleep the rest of the night and we disconnect her in the morning when she wakes up. (With the pump we have (Zevex Infinity), we can disable the alarm that would normally signal the end of a feed- when we were giving her enzymes at the end of a feed we needed this alarm. It is SO much better doing it mid-feed, since no one loses sleep this way!!)

Emily generally needs to poop in the morning now, but never during the night.
 
H

hmw

New member
I put the pump at the foot of Emily's bed and run the extension and tubing down under the covers to the foot of the bed, not to the side to help minimize it getting wrapped around her, since this WAS an issue in the beginning. Some parents tape the extension to the waist and down the leg of their pj's so it moves with them as they roll around rather than pulling on the stoma and getting twisted up/wrapping around them.
<br />
<br />Emily starts her feed right when she goes to bed, ideally around 9pm. She takes her enzymes orally then and gets hooked up. Midway before the feed (before I go to bed) she gets the 2nd dose, about 11:30. The feed completes about 2:00am and shuts off by itself allowing everyone to sleep the rest of the night and we disconnect her in the morning when she wakes up. (With the pump we have (Zevex Infinity), we can disable the alarm that would normally signal the end of a feed- when we were giving her enzymes at the end of a feed we needed this alarm. It is SO much better doing it mid-feed, since no one loses sleep this way!!)
<br />
<br />Emily generally needs to poop in the morning now, but never during the night.
 
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schmj4910

New member
hmw - Thanks for the reply. We had "the" appointment today. They had us come in two weeks earlier than originally planned due to concerns. Tomorrow, we are scheduled for our first hospitalization since we got our son almost a year ago. He is having IV antibiotics for one week, then the feeding tube will be placed. Not sure yet if it will be a G-tube or a J-tube. I'll post more when I find out more. I'm just really scared and nervous...can't wait until it's over!
 
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schmj4910

New member
hmw - Thanks for the reply. We had "the" appointment today. They had us come in two weeks earlier than originally planned due to concerns. Tomorrow, we are scheduled for our first hospitalization since we got our son almost a year ago. He is having IV antibiotics for one week, then the feeding tube will be placed. Not sure yet if it will be a G-tube or a J-tube. I'll post more when I find out more. I'm just really scared and nervous...can't wait until it's over!
 
S

schmj4910

New member
hmw - Thanks for the reply. We had "the" appointment today. They had us come in two weeks earlier than originally planned due to concerns. Tomorrow, we are scheduled for our first hospitalization since we got our son almost a year ago. He is having IV antibiotics for one week, then the feeding tube will be placed. Not sure yet if it will be a G-tube or a J-tube. I'll post more when I find out more. I'm just really scared and nervous...can't wait until it's over!
 
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hmw

New member
I can certainly relate to your feelings! However, I remember feeling so relieved to have just made the decision as well- I hope you are feeling at peace with knowing that you have made up your mind to go ahead with this. I obviously have no way of knowing this for sure, but I would assume they will be starting with a g-tube and see how he does with that before moving on to a J. The g-tube is less complicated (can be replaced on your own at home and a much wider variety of supplements can be used with it) and unless certain conditions exist to contra-indicate it, I'd assume they will start with that.

I'd encourage you to post on the 'Families' forum as well. More of the parents there will be happy to get to know you there and offer their advice and experiences- lots of kids here have tubes and/or just kids the age of yours with cf, but may not have seen your posts as this forum isn't frequented as often as the Families one. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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hmw

New member
I can certainly relate to your feelings! However, I remember feeling so relieved to have just made the decision as well- I hope you are feeling at peace with knowing that you have made up your mind to go ahead with this. I obviously have no way of knowing this for sure, but I would assume they will be starting with a g-tube and see how he does with that before moving on to a J. The g-tube is less complicated (can be replaced on your own at home and a much wider variety of supplements can be used with it) and unless certain conditions exist to contra-indicate it, I'd assume they will start with that.

I'd encourage you to post on the 'Families' forum as well. More of the parents there will be happy to get to know you there and offer their advice and experiences- lots of kids here have tubes and/or just kids the age of yours with cf, but may not have seen your posts as this forum isn't frequented as often as the Families one. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
H

hmw

New member
I can certainly relate to your feelings! However, I remember feeling so relieved to have just made the decision as well- I hope you are feeling at peace with knowing that you have made up your mind to go ahead with this. I obviously have no way of knowing this for sure, but I would assume they will be starting with a g-tube and see how he does with that before moving on to a J. The g-tube is less complicated (can be replaced on your own at home and a much wider variety of supplements can be used with it) and unless certain conditions exist to contra-indicate it, I'd assume they will start with that.
<br />
<br />I'd encourage you to post on the 'Families' forum as well. More of the parents there will be happy to get to know you there and offer their advice and experiences- lots of kids here have tubes and/or just kids the age of yours with cf, but may not have seen your posts as this forum isn't frequented as often as the Families one. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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