Feeding tube/coughing issues. Anyone else experience any of this?

[mariahsmommy]

Yeah I would have to agree that it sounds like reflux.
<br />
<br />What volume per hour is your daughter doing?
<br />Have you ever tried bolus feeds throughout the day? This is what I do with my daughter.
<br />You could feed her 5 or six meals a day, let her eat what she wants first, do enzymes, then bolus feed like 4 to 8 oz. depending on what amount she eats.
<br />My daughter is 22 months and she does 10 ounces at a time, but she doesn't eat much by mouth.

 

[ashmomo]

Thanks everyone!
We have been trying dif things. I have slowed her pump down at night. She is doing 35ml/hour for 8 hours and needs enzymes 4 hours in. She has been doing well with that the past few nights. (well except 1...so I guess its not all said and done YET!)
They want us to do more bolus feeds during the day. They want her to eat what she wants then add 2 oz by bolus. BUT even if I try to bolus her bottle (if she doesn't drink any or if I just have to add the extras she don't drink) she ends up puking <img src="i/expressions/face-icon-small-blush.gif" border="0">( EVEN w/ the fundo done. She does not accept more than about 4 oz at a time and it can only be like every 4 hours...any sooner and it seems to be TOO soon for her tummy.
I am guessing they will next want us to run for 12 hours over night, which will be a pain w/ her activity. She will not accept being hooked to the pole every morning for a couple hours. Not sure how that will go. We will just do what we can bolus wise, see what she WILL accept w/ puking...and see if it helps her gain weight by our next clinic visit. Then go from there I guess.
I think they will have to check for that slow motility...what do they do for that if that is what is going on?

 

[ashmomo]

Thanks everyone!
We have been trying dif things. I have slowed her pump down at night. She is doing 35ml/hour for 8 hours and needs enzymes 4 hours in. She has been doing well with that the past few nights. (well except 1...so I guess its not all said and done YET!)
They want us to do more bolus feeds during the day. They want her to eat what she wants then add 2 oz by bolus. BUT even if I try to bolus her bottle (if she doesn't drink any or if I just have to add the extras she don't drink) she ends up puking <img src="i/expressions/face-icon-small-blush.gif" border="0">( EVEN w/ the fundo done. She does not accept more than about 4 oz at a time and it can only be like every 4 hours...any sooner and it seems to be TOO soon for her tummy.
I am guessing they will next want us to run for 12 hours over night, which will be a pain w/ her activity. She will not accept being hooked to the pole every morning for a couple hours. Not sure how that will go. We will just do what we can bolus wise, see what she WILL accept w/ puking...and see if it helps her gain weight by our next clinic visit. Then go from there I guess.
I think they will have to check for that slow motility...what do they do for that if that is what is going on?

 

[ashmomo]

Thanks everyone!
<br />We have been trying dif things. I have slowed her pump down at night. She is doing 35ml/hour for 8 hours and needs enzymes 4 hours in. She has been doing well with that the past few nights. (well except 1...so I guess its not all said and done YET!)
<br />They want us to do more bolus feeds during the day. They want her to eat what she wants then add 2 oz by bolus. BUT even if I try to bolus her bottle (if she doesn't drink any or if I just have to add the extras she don't drink) she ends up puking <img src="i/expressions/face-icon-small-blush.gif" border="0">( EVEN w/ the fundo done. She does not accept more than about 4 oz at a time and it can only be like every 4 hours...any sooner and it seems to be TOO soon for her tummy.
<br />I am guessing they will next want us to run for 12 hours over night, which will be a pain w/ her activity. She will not accept being hooked to the pole every morning for a couple hours. Not sure how that will go. We will just do what we can bolus wise, see what she WILL accept w/ puking...and see if it helps her gain weight by our next clinic visit. Then go from there I guess.
<br />I think they will have to check for that slow motility...what do they do for that if that is what is going on?

 

[mariahsmommy]

This may be a silly question, but I didn't see where you had mentioned it. Is your daughter on a reflux med?

 

[mariahsmommy]

This may be a silly question, but I didn't see where you had mentioned it. Is your daughter on a reflux med?

 

[mariahsmommy]

This may be a silly question, but I didn't see where you had mentioned it. Is your daughter on a reflux med?

 

[ashmomo]

Yes, she takes Prevacid. Twice per day.
Things have been going well. The docs want her stuffed full of formula and food all day. She just does not tolerate it. They want me to add 2 oz in her tube at every feeding...in addition to what she eats herself (which is usually around 3-4 oz). BUT if I tube feed more than 4 oz total between what she eats and what I put in the tube, she pukes <img src="i/expressions/face-icon-small-blush.gif" border="0">( And she is not supposed to even puke. So I have found that to be a bad idea. She is running slower at night and we have at least been able to run it every night without any problems at the slower rate (and the middle of the night enzymes). She is getting 280ml each night. So hopefully it helps and she has gained some weight at the next appt.

 

[ashmomo]

Yes, she takes Prevacid. Twice per day.
Things have been going well. The docs want her stuffed full of formula and food all day. She just does not tolerate it. They want me to add 2 oz in her tube at every feeding...in addition to what she eats herself (which is usually around 3-4 oz). BUT if I tube feed more than 4 oz total between what she eats and what I put in the tube, she pukes <img src="i/expressions/face-icon-small-blush.gif" border="0">( And she is not supposed to even puke. So I have found that to be a bad idea. She is running slower at night and we have at least been able to run it every night without any problems at the slower rate (and the middle of the night enzymes). She is getting 280ml each night. So hopefully it helps and she has gained some weight at the next appt.

 

[ashmomo]

Yes, she takes Prevacid. Twice per day.
<br />Things have been going well. The docs want her stuffed full of formula and food all day. She just does not tolerate it. They want me to add 2 oz in her tube at every feeding...in addition to what she eats herself (which is usually around 3-4 oz). BUT if I tube feed more than 4 oz total between what she eats and what I put in the tube, she pukes <img src="i/expressions/face-icon-small-blush.gif" border="0">( And she is not supposed to even puke. So I have found that to be a bad idea. She is running slower at night and we have at least been able to run it every night without any problems at the slower rate (and the middle of the night enzymes). She is getting 280ml each night. So hopefully it helps and she has gained some weight at the next appt.

 

[hmw]

I would push for them to do some tests to see if her motility is normal. If she is not moving food from stomach and through the rest of her GI tract at a normal rate, she won't be able to tolerate a large volume of food all at once (and I imagine an overstuffed stomach is putting pressure on that fundo as well.) If her motility is very slow there are a few meds out there that can address that and/or they may need to make adjustments in how she's fed (bolus feeds inbetween meals, not when she's already eaten orally, or daytime feeds at a slow rate, a change in formula to something even more broken down than the Peptamen Jr- assuming she's back on that by now, etc.) I hope you get this figured out. I would definitely push for that 'why' once they determine that the fundo did indeed loosen or fail- so the root cause of the problem can be addressed if possible.

A note re. one of your above posts: If she really doesn't tolerate the IV pole when awake (although like anything else, she'll learn if she has to), the backpack may be a better choice. The little kid size one is not much bigger than the pump. She'll soon be old enough to wear it; in the meantime it may be less cumbersome to load the pump and bag into it and place it near her and move that around rather than drag a pole around. We use Emily's sometimes and she likes it.

 

[hmw]

I would push for them to do some tests to see if her motility is normal. If she is not moving food from stomach and through the rest of her GI tract at a normal rate, she won't be able to tolerate a large volume of food all at once (and I imagine an overstuffed stomach is putting pressure on that fundo as well.) If her motility is very slow there are a few meds out there that can address that and/or they may need to make adjustments in how she's fed (bolus feeds inbetween meals, not when she's already eaten orally, or daytime feeds at a slow rate, a change in formula to something even more broken down than the Peptamen Jr- assuming she's back on that by now, etc.) I hope you get this figured out. I would definitely push for that 'why' once they determine that the fundo did indeed loosen or fail- so the root cause of the problem can be addressed if possible.

A note re. one of your above posts: If she really doesn't tolerate the IV pole when awake (although like anything else, she'll learn if she has to), the backpack may be a better choice. The little kid size one is not much bigger than the pump. She'll soon be old enough to wear it; in the meantime it may be less cumbersome to load the pump and bag into it and place it near her and move that around rather than drag a pole around. We use Emily's sometimes and she likes it.

 

[hmw]

I would push for them to do some tests to see if her motility is normal. If she is not moving food from stomach and through the rest of her GI tract at a normal rate, she won't be able to tolerate a large volume of food all at once (and I imagine an overstuffed stomach is putting pressure on that fundo as well.) If her motility is very slow there are a few meds out there that can address that and/or they may need to make adjustments in how she's fed (bolus feeds inbetween meals, not when she's already eaten orally, or daytime feeds at a slow rate, a change in formula to something even more broken down than the Peptamen Jr- assuming she's back on that by now, etc.) I hope you get this figured out. I would definitely push for that 'why' once they determine that the fundo did indeed loosen or fail- so the root cause of the problem can be addressed if possible.
<br />
<br />A note re. one of your above posts: If she really doesn't tolerate the IV pole when awake (although like anything else, she'll learn if she has to), the backpack may be a better choice. The little kid size one is not much bigger than the pump. She'll soon be old enough to wear it; in the meantime it may be less cumbersome to load the pump and bag into it and place it near her and move that around rather than drag a pole around. We use Emily's sometimes and she likes it.
<br />

 

[ashmomo]

I will be asking about the motility issue at our next appt. Things are going well right now though, and Jordin needs a break (well, we both do!). SO until our appt in Nov (as long as all keeps going well) I am going to keep things the way we have them. I had talked to the doc about her fundo and puking and they said it was prob just too much for her and to just monitor that it does not keep happening every day. It isn't happening, but I also know her limits now. And I am sure her limits should be more...but right now what we are doing in working and I want to see what weight she gains w/ this month at the rate we are feeding.
We also start speech therapy on Oct 28th.

Oh and I did research the back pack---the super mini! Looks like a great idea if we have to feed during the day. I printed it up and will take it with us to clinic just in case.

Oh and NO we have not gotten our Peptamen yet <img src="i/expressions/face-icon-small-blush.gif" border="0">( Grrrr...getting frustrated!

 

[ashmomo]

I will be asking about the motility issue at our next appt. Things are going well right now though, and Jordin needs a break (well, we both do!). SO until our appt in Nov (as long as all keeps going well) I am going to keep things the way we have them. I had talked to the doc about her fundo and puking and they said it was prob just too much for her and to just monitor that it does not keep happening every day. It isn't happening, but I also know her limits now. And I am sure her limits should be more...but right now what we are doing in working and I want to see what weight she gains w/ this month at the rate we are feeding.
We also start speech therapy on Oct 28th.

Oh and I did research the back pack---the super mini! Looks like a great idea if we have to feed during the day. I printed it up and will take it with us to clinic just in case.

Oh and NO we have not gotten our Peptamen yet <img src="i/expressions/face-icon-small-blush.gif" border="0">( Grrrr...getting frustrated!

 

[ashmomo]

I will be asking about the motility issue at our next appt. Things are going well right now though, and Jordin needs a break (well, we both do!). SO until our appt in Nov (as long as all keeps going well) I am going to keep things the way we have them. I had talked to the doc about her fundo and puking and they said it was prob just too much for her and to just monitor that it does not keep happening every day. It isn't happening, but I also know her limits now. And I am sure her limits should be more...but right now what we are doing in working and I want to see what weight she gains w/ this month at the rate we are feeding.
<br />We also start speech therapy on Oct 28th.
<br />
<br />Oh and I did research the back pack---the super mini! Looks like a great idea if we have to feed during the day. I printed it up and will take it with us to clinic just in case.
<br />
<br />Oh and NO we have not gotten our Peptamen yet <img src="i/expressions/face-icon-small-blush.gif" border="0">( Grrrr...getting frustrated!

 

[hmw]

I hope the Peptamen Jr. will make a difference once she can get that again. You'd noticed some improvement the few nights she had it, and it will be easier for her to digest, which may be a big help.

Glad you found the info on the backpack- I hope you can get one. He should be able to make a good case for it w/ insurance given it's a mobile child requiring daytime feeds. We were fortunate- one came with our pump.

I'm glad you have figured out for now what will work for her. That takes some stress off the situation which all of you really need.

 

[hmw]

I hope the Peptamen Jr. will make a difference once she can get that again. You'd noticed some improvement the few nights she had it, and it will be easier for her to digest, which may be a big help.

Glad you found the info on the backpack- I hope you can get one. He should be able to make a good case for it w/ insurance given it's a mobile child requiring daytime feeds. We were fortunate- one came with our pump.

I'm glad you have figured out for now what will work for her. That takes some stress off the situation which all of you really need.

 

[hmw]

I hope the Peptamen Jr. will make a difference once she can get that again. You'd noticed some improvement the few nights she had it, and it will be easier for her to digest, which may be a big help.
<br />
<br />Glad you found the info on the backpack- I hope you can get one. He should be able to make a good case for it w/ insurance given it's a mobile child requiring daytime feeds. We were fortunate- one came with our pump.
<br />
<br />I'm glad you have figured out for now what will work for her. That takes some stress off the situation which all of you really need.