Whether to get a feeding tube or not?

ymikhale · Mar 18, 2011

schmj4910, i don't knwo where you get it in the US since I am in France now, if i recollect correctly Trader Joe's carries it.
 
 I use it as any regular oil, basically add it to veggies. our nutritionist prescribed adding 1 tea spoon per meal of oil until 2 y/o and then upped it to 1 tbl spoon (of course she never presribed coconut oil, her eyes buldged when i mentioned it).
 I used it (and still do) once a day.
 
 I hope it helps.

hmw · Mar 18, 2011

Emily is older but we had a prolonged experience with growth failure so I'll share our experience anyway.

In our experience, by the time our child fell below the 10th% it was very hard to climb out of that hole. This was because even with decent gain... they are just gaining what a kid NORMALLY gains, and not making any progress upwards. For example, when Emily was dx'ed, she gained 8 pounds in a little under 1.5yrs after starting enzymes, and this was NET gain- meaning taking into account losing weight with illness and regaining it. So that was fantastic!! However, a normal kid gains that much weight in a year and a half, so she still was below the 5th% on the chart, and eventually she stopped growing in height- all her resources, despite consuming 2500cal/day, were going into that gain and keeping her resp system going. She needed more help.

So we eventually made the choice to place a feeding tube just after she turned 9. In Emily's case it was one of the hardest decisions we have ever made for her... and one of best decisions we have ever made for her. I wish we did it sooner!! She gets Peptamen Jr 1.5 at night while she sleeps, and most of it's fat is MCT- the kind that is in coconut oil, easily absorbed by those with cf. It has elemental (predigested) protein. This combination of factors makes it so good for her- she doesn't have to work at digesting it. In the 9mo since she's gotten it, she's gained 9lbs and grown 2". She's now just over the 25th% for weight and for the first time in SO long, actually ON the growth charts for height and continuing to grow and gain each month!!

We tried everything we could; it wasn't a decision we made lightly. All the fatty additions to the food. Various supplements (She liked Carnation, loved Scandishakes, hated Pediasure, Boost and a couple others.) She was and is a great eater and as I mentioned she was regularly consuming about 2500cal/day WITHOUT depending on supplements! (Supplements ended up replacing meals instead of adding to them and she averaged fewer cals/day when she used them a lot, so we didn't use them unless her appetite was decreased.)

We had a rough start the first couple weeks with the tube but all has gone very well since. Using it has been so much easier than I had pictured it to be. She rapidly adjusted to it just being there and a part of life and I am of the thought that the younger it's done, the easier it would be on them~ she had it done at a bit of a difficult age for it.

Anyway, you've been given great ideas on stuff to try that will hopefully help you avoid it, but in our experience- looking at Emily now, there is a WORLD of difference in what she looks like in the 25th% and what she looked like when barely on the charts. By the time they get THAT small and you've already been trying stuff for a while- sometimes it's time to move on to the next step in order to preserve their health. I wish you the best in your decision making process and if you have any other questions please do not hesitate to ask.

hmw · Mar 18, 2011

Emily is older but we had a prolonged experience with growth failure so I'll share our experience anyway.

In our experience, by the time our child fell below the 10th% it was very hard to climb out of that hole. This was because even with decent gain... they are just gaining what a kid NORMALLY gains, and not making any progress upwards. For example, when Emily was dx'ed, she gained 8 pounds in a little under 1.5yrs after starting enzymes, and this was NET gain- meaning taking into account losing weight with illness and regaining it. So that was fantastic!! However, a normal kid gains that much weight in a year and a half, so she still was below the 5th% on the chart, and eventually she stopped growing in height- all her resources, despite consuming 2500cal/day, were going into that gain and keeping her resp system going. She needed more help.

So we eventually made the choice to place a feeding tube just after she turned 9. In Emily's case it was one of the hardest decisions we have ever made for her... and one of best decisions we have ever made for her. I wish we did it sooner!! She gets Peptamen Jr 1.5 at night while she sleeps, and most of it's fat is MCT- the kind that is in coconut oil, easily absorbed by those with cf. It has elemental (predigested) protein. This combination of factors makes it so good for her- she doesn't have to work at digesting it. In the 9mo since she's gotten it, she's gained 9lbs and grown 2". She's now just over the 25th% for weight and for the first time in SO long, actually ON the growth charts for height and continuing to grow and gain each month!!

We tried everything we could; it wasn't a decision we made lightly. All the fatty additions to the food. Various supplements (She liked Carnation, loved Scandishakes, hated Pediasure, Boost and a couple others.) She was and is a great eater and as I mentioned she was regularly consuming about 2500cal/day WITHOUT depending on supplements! (Supplements ended up replacing meals instead of adding to them and she averaged fewer cals/day when she used them a lot, so we didn't use them unless her appetite was decreased.)

We had a rough start the first couple weeks with the tube but all has gone very well since. Using it has been so much easier than I had pictured it to be. She rapidly adjusted to it just being there and a part of life and I am of the thought that the younger it's done, the easier it would be on them~ she had it done at a bit of a difficult age for it.

Anyway, you've been given great ideas on stuff to try that will hopefully help you avoid it, but in our experience- looking at Emily now, there is a WORLD of difference in what she looks like in the 25th% and what she looked like when barely on the charts. By the time they get THAT small and you've already been trying stuff for a while- sometimes it's time to move on to the next step in order to preserve their health. I wish you the best in your decision making process and if you have any other questions please do not hesitate to ask.

hmw · Mar 18, 2011

Emily is older but we had a prolonged experience with growth failure so I'll share our experience anyway.
 
 In our experience, by the time our child fell below the 10th% it was very hard to climb out of that hole. This was because even with decent gain... they are just gaining what a kid NORMALLY gains, and not making any progress upwards. For example, when Emily was dx'ed, she gained 8 pounds in a little under 1.5yrs after starting enzymes, and this was NET gain- meaning taking into account losing weight with illness and regaining it. So that was fantastic!! However, a normal kid gains that much weight in a year and a half, so she still was below the 5th% on the chart, and eventually she stopped growing in height- all her resources, despite consuming 2500cal/day, were going into that gain and keeping her resp system going. She needed more help.
 
 So we eventually made the choice to place a feeding tube just after she turned 9. In Emily's case it was one of the hardest decisions we have ever made for her... and one of best decisions we have ever made for her. I wish we did it sooner!! She gets Peptamen Jr 1.5 at night while she sleeps, and most of it's fat is MCT- the kind that is in coconut oil, easily absorbed by those with cf. It has elemental (predigested) protein. This combination of factors makes it so good for her- she doesn't have to work at digesting it. In the 9mo since she's gotten it, she's gained 9lbs and grown 2". She's now just over the 25th% for weight and for the first time in SO long, actually ON the growth charts for height and continuing to grow and gain each month!!
 
 We tried everything we could; it wasn't a decision we made lightly. All the fatty additions to the food. Various supplements (She liked Carnation, loved Scandishakes, hated Pediasure, Boost and a couple others.) She was and is a great eater and as I mentioned she was regularly consuming about 2500cal/day WITHOUT depending on supplements! (Supplements ended up replacing meals instead of adding to them and she averaged fewer cals/day when she used them a lot, so we didn't use them unless her appetite was decreased.)
 
 We had a rough start the first couple weeks with the tube but all has gone very well since. Using it has been so much easier than I had pictured it to be. She rapidly adjusted to it just being there and a part of life and I am of the thought that the younger it's done, the easier it would be on them~ she had it done at a bit of a difficult age for it.
 
 Anyway, you've been given great ideas on stuff to try that will hopefully help you avoid it, but in our experience- looking at Emily now, there is a WORLD of difference in what she looks like in the 25th% and what she looked like when barely on the charts. By the time they get THAT small and you've already been trying stuff for a while- sometimes it's time to move on to the next step in order to preserve their health. I wish you the best in your decision making process and if you have any other questions please do not hesitate to ask.

schmj4910 · Mar 19, 2011

ymikhale - Well, we couldn't find the coconut oil, but we'll try another store tomorrow. Thanks for the info!

hmw - Thanks for sharing your experience, it sounds very similar to our own. Our son is gaining the same amount of weight as a "normal" kid would and not catching up to the curve. This has only been going on for about 6 months (ages 12-18 months). From ages 6-12 months he had been putting on very good catch-up weight, which is why everyone is thinking he may be able to catch up on his own. He has never been anywhere near the curve for height.

I am glad to hear that Emily is doing well with the tube. I'm also glad to hear that it was one of the best decisions you've ever made. I think we are definitely heading in that direction. We've only been struggling for 6 months and I don't want to make a decision prematurely, but I really don't want to drag this on and on. I think he would really benefit from growth early in his life. I also worry about him losing weight if he does get sick...he doesn't have any weight to lose! I wonder what the percentage is of CF people that have a feeding tube?

It is also interesting to know that Emily was consuming 2500 cal/day and still not gaining enough. Our son is barely eating as it is...I don't think there is any way he will get enough calories to catch up.

So do you use enzymes at night? I've always wondered how that works. Also, does the tube leak? How easy is it to pull off? How do you work it with pajamas? Any cool tricks that you have learned? What are the down sides to using a feeding tube (besides scars, surgery, etc.)? How long is the surgery to place the tube?

We are going to talk with his dietitian in April. We have always been in the mindset to do whatever it takes to get him feeling and doing his best...and right now that sounds like a feeding tube would be the answer.

Thanks so much for sharing your story!

schmj4910 · Mar 19, 2011

ymikhale - Well, we couldn't find the coconut oil, but we'll try another store tomorrow. Thanks for the info!

hmw - Thanks for sharing your experience, it sounds very similar to our own. Our son is gaining the same amount of weight as a "normal" kid would and not catching up to the curve. This has only been going on for about 6 months (ages 12-18 months). From ages 6-12 months he had been putting on very good catch-up weight, which is why everyone is thinking he may be able to catch up on his own. He has never been anywhere near the curve for height.

I am glad to hear that Emily is doing well with the tube. I'm also glad to hear that it was one of the best decisions you've ever made. I think we are definitely heading in that direction. We've only been struggling for 6 months and I don't want to make a decision prematurely, but I really don't want to drag this on and on. I think he would really benefit from growth early in his life. I also worry about him losing weight if he does get sick...he doesn't have any weight to lose! I wonder what the percentage is of CF people that have a feeding tube?

It is also interesting to know that Emily was consuming 2500 cal/day and still not gaining enough. Our son is barely eating as it is...I don't think there is any way he will get enough calories to catch up.

So do you use enzymes at night? I've always wondered how that works. Also, does the tube leak? How easy is it to pull off? How do you work it with pajamas? Any cool tricks that you have learned? What are the down sides to using a feeding tube (besides scars, surgery, etc.)? How long is the surgery to place the tube?

We are going to talk with his dietitian in April. We have always been in the mindset to do whatever it takes to get him feeling and doing his best...and right now that sounds like a feeding tube would be the answer.

Thanks so much for sharing your story!

schmj4910 · Mar 19, 2011

ymikhale - Well, we couldn't find the coconut oil, but we'll try another store tomorrow. Thanks for the info!
 
 hmw - Thanks for sharing your experience, it sounds very similar to our own. Our son is gaining the same amount of weight as a "normal" kid would and not catching up to the curve. This has only been going on for about 6 months (ages 12-18 months). From ages 6-12 months he had been putting on very good catch-up weight, which is why everyone is thinking he may be able to catch up on his own. He has never been anywhere near the curve for height.
 
 I am glad to hear that Emily is doing well with the tube. I'm also glad to hear that it was one of the best decisions you've ever made. I think we are definitely heading in that direction. We've only been struggling for 6 months and I don't want to make a decision prematurely, but I really don't want to drag this on and on. I think he would really benefit from growth early in his life. I also worry about him losing weight if he does get sick...he doesn't have any weight to lose! I wonder what the percentage is of CF people that have a feeding tube?
 
 It is also interesting to know that Emily was consuming 2500 cal/day and still not gaining enough. Our son is barely eating as it is...I don't think there is any way he will get enough calories to catch up.
 
 So do you use enzymes at night? I've always wondered how that works. Also, does the tube leak? How easy is it to pull off? How do you work it with pajamas? Any cool tricks that you have learned? What are the down sides to using a feeding tube (besides scars, surgery, etc.)? How long is the surgery to place the tube?
 
 We are going to talk with his dietitian in April. We have always been in the mindset to do whatever it takes to get him feeling and doing his best...and right now that sounds like a feeding tube would be the answer.
 
 Thanks so much for sharing your story!

mom2owen · Mar 23, 2011

Hi,
I just wanted to add some ideas about the tube. My son has had his for two years, since he was five years old. I don't have the experience with a little one but I can speak to life with a tube.
First, Owen's tube rarely leaks. We had to start with the PEG which is a seven inch tube hanging out of the stoma. That was by far the hardest time since I was so scared it would get yanked out. It never did get pulled out but I have also heard they can go straight to a MicKey or Mini (Cute names, huh?). The mickey/mini is flat against the skin. Owen's leaks gastric juices but only enough to make a ring around the stoma, not enough to get anything wet, it is not from formula leaking. In the beginning, we put chucks pads on his bed in case it leaked, but it never did!
For jammies, we use button down shirts. Now that we are used to it all, he just wears any shirt he wants and it it fine. With a smaller child, you might want to use the button idea. No sleeper jammies since you cannot thread the tube through if there isn't an opening!
The surgery itself took about an hour. But, things have changed since Owen had his. I won't lie, Owen was very angry about getting the tube and it came out loud and clear in the recovery room. He had to be re-sedated in recovery so he wouldn't pull it out. But, he was in the hospital for two days and when we came home, he got out of the car, went to the neighbors and climbed a tree. He was A-OK within minutes of getting home. Now, we change his Mini button every three months and while it is not his favorite thing, he is fine with it.
He can swim in pools and the ocean, lakes/rivers are not allowed. He can do karate. He plays on the slides and equipment at school as if he didn't have a tube at all. We have never had to replace a pulled out tube (well, once, his GI accidentally popped it out and luckily got it right back in!). It has been really easy overall.
The biggest benefit for us is that the struggle to get enough calories in him is totally gone. He gets two feedings during the day and one overnight to catch him up on what he isn't eating during the day. He went from severe malnutrition (less that 1%ile) to now in the 35%ile. He gained 14 pounds in two months and grew a lot. He has more energy and is happier because we aren't force feeding him anymore. In fact, I think he eats more now that the battle is over.
Please, feel free to PM me anytime if you have any questions. I have lots of tips and ideas if you are looking for more information. I was tormented by the decision back when he had to get it. I felt like I was mutilating my son. It could not have been further from the truth, it saved his life quite literally. I hope you see improvements in one way or another and if you go with the tube, I would love to help in any way I can. Good luck!

mom2owen · Mar 23, 2011

Hi,
I just wanted to add some ideas about the tube. My son has had his for two years, since he was five years old. I don't have the experience with a little one but I can speak to life with a tube.
First, Owen's tube rarely leaks. We had to start with the PEG which is a seven inch tube hanging out of the stoma. That was by far the hardest time since I was so scared it would get yanked out. It never did get pulled out but I have also heard they can go straight to a MicKey or Mini (Cute names, huh?). The mickey/mini is flat against the skin. Owen's leaks gastric juices but only enough to make a ring around the stoma, not enough to get anything wet, it is not from formula leaking. In the beginning, we put chucks pads on his bed in case it leaked, but it never did!
For jammies, we use button down shirts. Now that we are used to it all, he just wears any shirt he wants and it it fine. With a smaller child, you might want to use the button idea. No sleeper jammies since you cannot thread the tube through if there isn't an opening!
The surgery itself took about an hour. But, things have changed since Owen had his. I won't lie, Owen was very angry about getting the tube and it came out loud and clear in the recovery room. He had to be re-sedated in recovery so he wouldn't pull it out. But, he was in the hospital for two days and when we came home, he got out of the car, went to the neighbors and climbed a tree. He was A-OK within minutes of getting home. Now, we change his Mini button every three months and while it is not his favorite thing, he is fine with it.
He can swim in pools and the ocean, lakes/rivers are not allowed. He can do karate. He plays on the slides and equipment at school as if he didn't have a tube at all. We have never had to replace a pulled out tube (well, once, his GI accidentally popped it out and luckily got it right back in!). It has been really easy overall.
The biggest benefit for us is that the struggle to get enough calories in him is totally gone. He gets two feedings during the day and one overnight to catch him up on what he isn't eating during the day. He went from severe malnutrition (less that 1%ile) to now in the 35%ile. He gained 14 pounds in two months and grew a lot. He has more energy and is happier because we aren't force feeding him anymore. In fact, I think he eats more now that the battle is over.
Please, feel free to PM me anytime if you have any questions. I have lots of tips and ideas if you are looking for more information. I was tormented by the decision back when he had to get it. I felt like I was mutilating my son. It could not have been further from the truth, it saved his life quite literally. I hope you see improvements in one way or another and if you go with the tube, I would love to help in any way I can. Good luck!

mom2owen · Mar 23, 2011

Hi,
 I just wanted to add some ideas about the tube. My son has had his for two years, since he was five years old. I don't have the experience with a little one but I can speak to life with a tube.
 First, Owen's tube rarely leaks. We had to start with the PEG which is a seven inch tube hanging out of the stoma. That was by far the hardest time since I was so scared it would get yanked out. It never did get pulled out but I have also heard they can go straight to a MicKey or Mini (Cute names, huh?). The mickey/mini is flat against the skin. Owen's leaks gastric juices but only enough to make a ring around the stoma, not enough to get anything wet, it is not from formula leaking. In the beginning, we put chucks pads on his bed in case it leaked, but it never did!
 For jammies, we use button down shirts. Now that we are used to it all, he just wears any shirt he wants and it it fine. With a smaller child, you might want to use the button idea. No sleeper jammies since you cannot thread the tube through if there isn't an opening!
 The surgery itself took about an hour. But, things have changed since Owen had his. I won't lie, Owen was very angry about getting the tube and it came out loud and clear in the recovery room. He had to be re-sedated in recovery so he wouldn't pull it out. But, he was in the hospital for two days and when we came home, he got out of the car, went to the neighbors and climbed a tree. He was A-OK within minutes of getting home. Now, we change his Mini button every three months and while it is not his favorite thing, he is fine with it.
 He can swim in pools and the ocean, lakes/rivers are not allowed. He can do karate. He plays on the slides and equipment at school as if he didn't have a tube at all. We have never had to replace a pulled out tube (well, once, his GI accidentally popped it out and luckily got it right back in!). It has been really easy overall.
 The biggest benefit for us is that the struggle to get enough calories in him is totally gone. He gets two feedings during the day and one overnight to catch him up on what he isn't eating during the day. He went from severe malnutrition (less that 1%ile) to now in the 35%ile. He gained 14 pounds in two months and grew a lot. He has more energy and is happier because we aren't force feeding him anymore. In fact, I think he eats more now that the battle is over.
 Please, feel free to PM me anytime if you have any questions. I have lots of tips and ideas if you are looking for more information. I was tormented by the decision back when he had to get it. I felt like I was mutilating my son. It could not have been further from the truth, it saved his life quite literally. I hope you see improvements in one way or another and if you go with the tube, I would love to help in any way I can. Good luck!

schmj4910 · Mar 24, 2011

Mom2owen - Thanks for telling me your story! Thanks for the tip about the button-down pajama shirts, too! I'm glad to hear that the tube has never been pulled out. It's amazing that Owen gained 14 pounds in two months! Your situation sounds a lot like ours, with meal-time struggles. I'm trying a new technique during meals...not saying anything. So far, it hasn't helped. All he does is nibble and drink.

Thanks for all of the support! I'll post how his appointment in April goes.

schmj4910 · Mar 24, 2011

Mom2owen - Thanks for telling me your story! Thanks for the tip about the button-down pajama shirts, too! I'm glad to hear that the tube has never been pulled out. It's amazing that Owen gained 14 pounds in two months! Your situation sounds a lot like ours, with meal-time struggles. I'm trying a new technique during meals...not saying anything. So far, it hasn't helped. All he does is nibble and drink.

Thanks for all of the support! I'll post how his appointment in April goes.

schmj4910 · Mar 24, 2011

Mom2owen - Thanks for telling me your story! Thanks for the tip about the button-down pajama shirts, too! I'm glad to hear that the tube has never been pulled out. It's amazing that Owen gained 14 pounds in two months! Your situation sounds a lot like ours, with meal-time struggles. I'm trying a new technique during meals...not saying anything. So far, it hasn't helped. All he does is nibble and drink.
 
 Thanks for all of the support! I'll post how his appointment in April goes.

hmw · Mar 24, 2011

I'm sorry~ I didn't see your reply to me until now. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Emily is allowed to go in any water deemed safe for swimming. Water getting into the tube is no different than swallowing it, which all kids do when swimming. I wouldn't let any of my kids swim at a beach that isn't tested for safe water.

Sleeping: Emily wears any shirt she wants with PJ pants or shorts. A mom I know with a tube-fed baby makes openings in the side of her child's sleepers with the buttonhole attachment on her sewing machine (which only takes a couple minutes if you know how to use it and can be any size you want them to be.)

Enzymes: Emily takes one dose before going to sleep and another 1/2way through her feed. We mix the enzyme beads with a little applesauce mixed with water and shoot it through the extension via a big syringe. It's a pain but gets the job done without waking her up. Another mom here gets big syringes with a slip tip (a tip that fits into the button directly) and shoots the enzymes/applesauce mixture) right through the button when needed. They normally only need the enzymes at the start and one more time (during or at the end), esp if they are using a predigested supplement- those sometimes require less enzymes to be absorbed.

Yes, sickness is really what derailed Emily. She just couldn't maintain her rate of gain when exacerbations kept setting her back and I feel this is a large part of why she needed SO many calories and still couldn't make headway. I cannot even tell you how much healthier she looks now, how much difference it's made. <img src="i/expressions/face-icon-small-smile.gif" border="0"> She is still very short, but considering how far OFF the chart she was- to now be on the chart is big, and every single month we see growth, which is amazing. And she's gone from 5th% to 25th% in only 9mo, despite a couple nasty exacerbations- impressive!!

To sum her up:
In the 1.5yrs after dx: 8lbs gain, 2" height, 5th% weight and off chart height
In the 9mo since tube: 10lbs gain, 2.5" height, 25th% weight and 10th% height and growing by the month!!
Hardest decision. BEST decision.

hmw · Mar 24, 2011

I'm sorry~ I didn't see your reply to me until now. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Emily is allowed to go in any water deemed safe for swimming. Water getting into the tube is no different than swallowing it, which all kids do when swimming. I wouldn't let any of my kids swim at a beach that isn't tested for safe water.

Sleeping: Emily wears any shirt she wants with PJ pants or shorts. A mom I know with a tube-fed baby makes openings in the side of her child's sleepers with the buttonhole attachment on her sewing machine (which only takes a couple minutes if you know how to use it and can be any size you want them to be.)

Enzymes: Emily takes one dose before going to sleep and another 1/2way through her feed. We mix the enzyme beads with a little applesauce mixed with water and shoot it through the extension via a big syringe. It's a pain but gets the job done without waking her up. Another mom here gets big syringes with a slip tip (a tip that fits into the button directly) and shoots the enzymes/applesauce mixture) right through the button when needed. They normally only need the enzymes at the start and one more time (during or at the end), esp if they are using a predigested supplement- those sometimes require less enzymes to be absorbed.

Yes, sickness is really what derailed Emily. She just couldn't maintain her rate of gain when exacerbations kept setting her back and I feel this is a large part of why she needed SO many calories and still couldn't make headway. I cannot even tell you how much healthier she looks now, how much difference it's made. <img src="i/expressions/face-icon-small-smile.gif" border="0"> She is still very short, but considering how far OFF the chart she was- to now be on the chart is big, and every single month we see growth, which is amazing. And she's gone from 5th% to 25th% in only 9mo, despite a couple nasty exacerbations- impressive!!

To sum her up:
In the 1.5yrs after dx: 8lbs gain, 2" height, 5th% weight and off chart height
In the 9mo since tube: 10lbs gain, 2.5" height, 25th% weight and 10th% height and growing by the month!!
Hardest decision. BEST decision.

hmw · Mar 24, 2011

I'm sorry~ I didn't see your reply to me until now. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Emily is allowed to go in any water deemed safe for swimming. Water getting into the tube is no different than swallowing it, which all kids do when swimming. I wouldn't let any of my kids swim at a beach that isn't tested for safe water.
 
 Sleeping: Emily wears any shirt she wants with PJ pants or shorts. A mom I know with a tube-fed baby makes openings in the side of her child's sleepers with the buttonhole attachment on her sewing machine (which only takes a couple minutes if you know how to use it and can be any size you want them to be.)
 
 Enzymes: Emily takes one dose before going to sleep and another 1/2way through her feed. We mix the enzyme beads with a little applesauce mixed with water and shoot it through the extension via a big syringe. It's a pain but gets the job done without waking her up. Another mom here gets big syringes with a slip tip (a tip that fits into the button directly) and shoots the enzymes/applesauce mixture) right through the button when needed. They normally only need the enzymes at the start and one more time (during or at the end), esp if they are using a predigested supplement- those sometimes require less enzymes to be absorbed.
 
 Yes, sickness is really what derailed Emily. She just couldn't maintain her rate of gain when exacerbations kept setting her back and I feel this is a large part of why she needed SO many calories and still couldn't make headway. I cannot even tell you how much healthier she looks now, how much difference it's made. <img src="i/expressions/face-icon-small-smile.gif" border="0"> She is still very short, but considering how far OFF the chart she was- to now be on the chart is big, and every single month we see growth, which is amazing. And she's gone from 5th% to 25th% in only 9mo, despite a couple nasty exacerbations- impressive!!
 
 To sum her up:
 In the 1.5yrs after dx: 8lbs gain, 2" height, 5th% weight and off chart height
 In the 9mo since tube: 10lbs gain, 2.5" height, 25th% weight and 10th% height and growing by the month!!
 Hardest decision. BEST decision.

hmw · Mar 24, 2011

Oh... a few more of your questions.

Emily's has never been pulled out and she plays pretty rough sometimes (bounce house, playscape, sledding, bellyflop onto the floor rollerskating...) The only time she really seemed to hurt was falling hard on her belly while on the trampoline but I think it was shortly after getting it. I made sure her shirt was well tucked in after that whenever she was on one. We had to replace it after 6mo when it broke, but that is a pretty long lifespan for a MicKey.

It doesn't leak much. A little bit by way of stomach contents; Emily calls it 'crusties' but she keeps it clean by wiping it off with a warm gauze pad and normal bathing. Nothing extensive. If you don't hook up the tubing right or it pulls loose, you WILL feed the bed though. It happens to us all. <img src="i/expressions/face-icon-small-smile.gif" border="0"> If you go ahead with the tube, post on the Families forum and tell us what kind of tube and what kind of pump and we'll be able to give you all kinds of advice to help things go smoothly.

I highly recommend trying to get a button (vs. a peg- the long tube) right from the start. It's what they will switch to after a few weeks anyway, so may as well get it right away. Emily has the MicKey button. Others have the AMT Mini, which is almost identical to the MicKey but a little smaller and flatter (I plan on investigating this option for Emily someday.) Both need to be replaced every so often, which can be done at home and this is far less terrifying than it sounds. <img src="i/expressions/face-icon-small-wink.gif" border="0"> They are held in place with water-filled balloons on the inside, which can be inflated/deflated via a port on the outside of the button. There are other buttons that cannot be changed this way but are used less often, since if they break they require a trip to the hospital to be replaced rather than a quick change at home.

Surgery: took less than an hour and *usually* only requires a day or two stay, to recover from anesthesia and see if they tolerate feeds through the tube. Pain afterwards is usually pretty manageable with a few doses of something stronger initially and thereafter with Tylenol. Emily had morphine in recovery and then IV Toradol (similar to Motrin but stronger) alternated with Tylenol and that worked very well.

hmw · Mar 24, 2011

Oh... a few more of your questions.

Emily's has never been pulled out and she plays pretty rough sometimes (bounce house, playscape, sledding, bellyflop onto the floor rollerskating...) The only time she really seemed to hurt was falling hard on her belly while on the trampoline but I think it was shortly after getting it. I made sure her shirt was well tucked in after that whenever she was on one. We had to replace it after 6mo when it broke, but that is a pretty long lifespan for a MicKey.

It doesn't leak much. A little bit by way of stomach contents; Emily calls it 'crusties' but she keeps it clean by wiping it off with a warm gauze pad and normal bathing. Nothing extensive. If you don't hook up the tubing right or it pulls loose, you WILL feed the bed though. It happens to us all. <img src="i/expressions/face-icon-small-smile.gif" border="0"> If you go ahead with the tube, post on the Families forum and tell us what kind of tube and what kind of pump and we'll be able to give you all kinds of advice to help things go smoothly.

I highly recommend trying to get a button (vs. a peg- the long tube) right from the start. It's what they will switch to after a few weeks anyway, so may as well get it right away. Emily has the MicKey button. Others have the AMT Mini, which is almost identical to the MicKey but a little smaller and flatter (I plan on investigating this option for Emily someday.) Both need to be replaced every so often, which can be done at home and this is far less terrifying than it sounds. <img src="i/expressions/face-icon-small-wink.gif" border="0"> They are held in place with water-filled balloons on the inside, which can be inflated/deflated via a port on the outside of the button. There are other buttons that cannot be changed this way but are used less often, since if they break they require a trip to the hospital to be replaced rather than a quick change at home.

Surgery: took less than an hour and *usually* only requires a day or two stay, to recover from anesthesia and see if they tolerate feeds through the tube. Pain afterwards is usually pretty manageable with a few doses of something stronger initially and thereafter with Tylenol. Emily had morphine in recovery and then IV Toradol (similar to Motrin but stronger) alternated with Tylenol and that worked very well.

hmw · Mar 24, 2011

Oh... a few more of your questions.
 
 Emily's has never been pulled out and she plays pretty rough sometimes (bounce house, playscape, sledding, bellyflop onto the floor rollerskating...) The only time she really seemed to hurt was falling hard on her belly while on the trampoline but I think it was shortly after getting it. I made sure her shirt was well tucked in after that whenever she was on one. We had to replace it after 6mo when it broke, but that is a pretty long lifespan for a MicKey.
 
 It doesn't leak much. A little bit by way of stomach contents; Emily calls it 'crusties' but she keeps it clean by wiping it off with a warm gauze pad and normal bathing. Nothing extensive. If you don't hook up the tubing right or it pulls loose, you WILL feed the bed though. It happens to us all. <img src="i/expressions/face-icon-small-smile.gif" border="0"> If you go ahead with the tube, post on the Families forum and tell us what kind of tube and what kind of pump and we'll be able to give you all kinds of advice to help things go smoothly.
 
 I highly recommend trying to get a button (vs. a peg- the long tube) right from the start. It's what they will switch to after a few weeks anyway, so may as well get it right away. Emily has the MicKey button. Others have the AMT Mini, which is almost identical to the MicKey but a little smaller and flatter (I plan on investigating this option for Emily someday.) Both need to be replaced every so often, which can be done at home and this is far less terrifying than it sounds. <img src="i/expressions/face-icon-small-wink.gif" border="0"> They are held in place with water-filled balloons on the inside, which can be inflated/deflated via a port on the outside of the button. There are other buttons that cannot be changed this way but are used less often, since if they break they require a trip to the hospital to be replaced rather than a quick change at home.
 
 Surgery: took less than an hour and *usually* only requires a day or two stay, to recover from anesthesia and see if they tolerate feeds through the tube. Pain afterwards is usually pretty manageable with a few doses of something stronger initially and thereafter with Tylenol. Emily had morphine in recovery and then IV Toradol (similar to Motrin but stronger) alternated with Tylenol and that worked very well.

grantsmom · Mar 24, 2011

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

Whether to get a feeding tube or not?

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grantsmom

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