I just don't know what to do ETA

Mommafirst · Dec 9, 2008

Alyssa got her g-tube three weeks ago. She a pretty normal kid who happens to have CF. She eats really well, but she's two (almost three) and some days she is more picky than others. AFter almost 2 years of struggling to get her weight to stabilize above the 5% BMI range, we consented to this tube.

The problem is that the surgery has kicked up some horrible reflux. The reflux is making her miserable. All day, she burps, gags and cries....over and over again. She tells me how much her throat hurts and it just breaks my heart.

She already took prevacid before this all started and now she is on reglan as well. And it is still not good. To top it off, every second or third night, she winds up gagging and throwing up her overnight feeding.

So now she isn't getting any of the supplemental calories that was the point of the surgery, and she is miserable to boot. I'm doing 3x as much laundry as I used to and I'm not getting a lot of sleep. I admit that all of this has made it hard to keep my sanity and make rational decisions.

I am so tempted to pull the button out, let it close up and be done with all this. The CF center is not being very helpful. I keep calling and they just don't know what to tell me.

I need to know that they didn't let me mutilate my kid for nothing. I need to know that this will heal and get better, but I'm not getting that message or any message these days.

We have a follow up/weight check at clinic next week. I won't do anything drastic, we've come this far, right? But I'm so sad and feeling so guilty and I'm just at my wits end trying to figure out what to do for this.

Mommafirst · Dec 9, 2008

Alyssa got her g-tube three weeks ago. She a pretty normal kid who happens to have CF. She eats really well, but she's two (almost three) and some days she is more picky than others. AFter almost 2 years of struggling to get her weight to stabilize above the 5% BMI range, we consented to this tube.

The problem is that the surgery has kicked up some horrible reflux. The reflux is making her miserable. All day, she burps, gags and cries....over and over again. She tells me how much her throat hurts and it just breaks my heart.

She already took prevacid before this all started and now she is on reglan as well. And it is still not good. To top it off, every second or third night, she winds up gagging and throwing up her overnight feeding.

So now she isn't getting any of the supplemental calories that was the point of the surgery, and she is miserable to boot. I'm doing 3x as much laundry as I used to and I'm not getting a lot of sleep. I admit that all of this has made it hard to keep my sanity and make rational decisions.

I am so tempted to pull the button out, let it close up and be done with all this. The CF center is not being very helpful. I keep calling and they just don't know what to tell me.

I need to know that they didn't let me mutilate my kid for nothing. I need to know that this will heal and get better, but I'm not getting that message or any message these days.

We have a follow up/weight check at clinic next week. I won't do anything drastic, we've come this far, right? But I'm so sad and feeling so guilty and I'm just at my wits end trying to figure out what to do for this.

Mommafirst · Dec 9, 2008

Alyssa got her g-tube three weeks ago. She a pretty normal kid who happens to have CF. She eats really well, but she's two (almost three) and some days she is more picky than others. AFter almost 2 years of struggling to get her weight to stabilize above the 5% BMI range, we consented to this tube.

The problem is that the surgery has kicked up some horrible reflux. The reflux is making her miserable. All day, she burps, gags and cries....over and over again. She tells me how much her throat hurts and it just breaks my heart.

She already took prevacid before this all started and now she is on reglan as well. And it is still not good. To top it off, every second or third night, she winds up gagging and throwing up her overnight feeding.

So now she isn't getting any of the supplemental calories that was the point of the surgery, and she is miserable to boot. I'm doing 3x as much laundry as I used to and I'm not getting a lot of sleep. I admit that all of this has made it hard to keep my sanity and make rational decisions.

I am so tempted to pull the button out, let it close up and be done with all this. The CF center is not being very helpful. I keep calling and they just don't know what to tell me.

I need to know that they didn't let me mutilate my kid for nothing. I need to know that this will heal and get better, but I'm not getting that message or any message these days.

We have a follow up/weight check at clinic next week. I won't do anything drastic, we've come this far, right? But I'm so sad and feeling so guilty and I'm just at my wits end trying to figure out what to do for this.

Mommafirst · Dec 9, 2008

Alyssa got her g-tube three weeks ago. She a pretty normal kid who happens to have CF. She eats really well, but she's two (almost three) and some days she is more picky than others. AFter almost 2 years of struggling to get her weight to stabilize above the 5% BMI range, we consented to this tube.

The problem is that the surgery has kicked up some horrible reflux. The reflux is making her miserable. All day, she burps, gags and cries....over and over again. She tells me how much her throat hurts and it just breaks my heart.

She already took prevacid before this all started and now she is on reglan as well. And it is still not good. To top it off, every second or third night, she winds up gagging and throwing up her overnight feeding.

So now she isn't getting any of the supplemental calories that was the point of the surgery, and she is miserable to boot. I'm doing 3x as much laundry as I used to and I'm not getting a lot of sleep. I admit that all of this has made it hard to keep my sanity and make rational decisions.

I am so tempted to pull the button out, let it close up and be done with all this. The CF center is not being very helpful. I keep calling and they just don't know what to tell me.

I need to know that they didn't let me mutilate my kid for nothing. I need to know that this will heal and get better, but I'm not getting that message or any message these days.

We have a follow up/weight check at clinic next week. I won't do anything drastic, we've come this far, right? But I'm so sad and feeling so guilty and I'm just at my wits end trying to figure out what to do for this.

Mommafirst · Dec 9, 2008

Alyssa got her g-tube three weeks ago. She a pretty normal kid who happens to have CF. She eats really well, but she's two (almost three) and some days she is more picky than others. AFter almost 2 years of struggling to get her weight to stabilize above the 5% BMI range, we consented to this tube.
 
 The problem is that the surgery has kicked up some horrible reflux. The reflux is making her miserable. All day, she burps, gags and cries....over and over again. She tells me how much her throat hurts and it just breaks my heart.
 
 She already took prevacid before this all started and now she is on reglan as well. And it is still not good. To top it off, every second or third night, she winds up gagging and throwing up her overnight feeding.
 
 So now she isn't getting any of the supplemental calories that was the point of the surgery, and she is miserable to boot. I'm doing 3x as much laundry as I used to and I'm not getting a lot of sleep. I admit that all of this has made it hard to keep my sanity and make rational decisions.
 
 I am so tempted to pull the button out, let it close up and be done with all this. The CF center is not being very helpful. I keep calling and they just don't know what to tell me.
 
 I need to know that they didn't let me mutilate my kid for nothing. I need to know that this will heal and get better, but I'm not getting that message or any message these days.
 
 We have a follow up/weight check at clinic next week. I won't do anything drastic, we've come this far, right? But I'm so sad and feeling so guilty and I'm just at my wits end trying to figure out what to do for this.

Ratatosk · Dec 9, 2008

I just don't know what to do

I'm so sorry this is happening. Hopefully some parents who've been in a similar position can offer some suggestions. Otherwise, next week when you're at the appointment, you can explain and show them exactly what is happening. You can tell them that "this isn't WORKING" and that you feeling you're taking a step backwards and ask them for some constructive suggestions.

Write it all down before you go, so you can keep your train of thought in case you're interrupted or things get a little emotional.

Ratatosk · Dec 9, 2008

I just don't know what to do

I'm so sorry this is happening. Hopefully some parents who've been in a similar position can offer some suggestions. Otherwise, next week when you're at the appointment, you can explain and show them exactly what is happening. You can tell them that "this isn't WORKING" and that you feeling you're taking a step backwards and ask them for some constructive suggestions.

Write it all down before you go, so you can keep your train of thought in case you're interrupted or things get a little emotional.

Ratatosk · Dec 9, 2008

I just don't know what to do

I'm so sorry this is happening. Hopefully some parents who've been in a similar position can offer some suggestions. Otherwise, next week when you're at the appointment, you can explain and show them exactly what is happening. You can tell them that "this isn't WORKING" and that you feeling you're taking a step backwards and ask them for some constructive suggestions.

Write it all down before you go, so you can keep your train of thought in case you're interrupted or things get a little emotional.

Ratatosk · Dec 9, 2008

I just don't know what to do

I'm so sorry this is happening. Hopefully some parents who've been in a similar position can offer some suggestions. Otherwise, next week when you're at the appointment, you can explain and show them exactly what is happening. You can tell them that "this isn't WORKING" and that you feeling you're taking a step backwards and ask them for some constructive suggestions.

Write it all down before you go, so you can keep your train of thought in case you're interrupted or things get a little emotional.

Ratatosk · Dec 9, 2008

I just don't know what to do

I'm so sorry this is happening. Hopefully some parents who've been in a similar position can offer some suggestions. Otherwise, next week when you're at the appointment, you can explain and show them exactly what is happening. You can tell them that "this isn't WORKING" and that you feeling you're taking a step backwards and ask them for some constructive suggestions.
 
 Write it all down before you go, so you can keep your train of thought in case you're interrupted or things get a little emotional.

JazzysMom · Dec 9, 2008

I just don't know what to do

Just from what you speak of I would want to yank it myself.

It is heartbreaking & terribly disturbing to know that she (and you) are going through such rough times & almost seem to be hung out to dry on your own.

I am not advocating yanking it on your own, but I would tell them exactly what you said in this thread & if you cant get answers.....some type of improvement then seriously consider having it removed!

HUGS

JazzysMom · Dec 9, 2008

I just don't know what to do

Just from what you speak of I would want to yank it myself.

It is heartbreaking & terribly disturbing to know that she (and you) are going through such rough times & almost seem to be hung out to dry on your own.

I am not advocating yanking it on your own, but I would tell them exactly what you said in this thread & if you cant get answers.....some type of improvement then seriously consider having it removed!

HUGS

JazzysMom · Dec 9, 2008

I just don't know what to do

Just from what you speak of I would want to yank it myself.

It is heartbreaking & terribly disturbing to know that she (and you) are going through such rough times & almost seem to be hung out to dry on your own.

I am not advocating yanking it on your own, but I would tell them exactly what you said in this thread & if you cant get answers.....some type of improvement then seriously consider having it removed!

HUGS

JazzysMom · Dec 9, 2008

I just don't know what to do

Just from what you speak of I would want to yank it myself.

It is heartbreaking & terribly disturbing to know that she (and you) are going through such rough times & almost seem to be hung out to dry on your own.

I am not advocating yanking it on your own, but I would tell them exactly what you said in this thread & if you cant get answers.....some type of improvement then seriously consider having it removed!

HUGS

JazzysMom · Dec 9, 2008

I just don't know what to do

Just from what you speak of I would want to yank it myself.
 
 It is heartbreaking & terribly disturbing to know that she (and you) are going through such rough times & almost seem to be hung out to dry on your own.
 
 I am not advocating yanking it on your own, but I would tell them exactly what you said in this thread & if you cant get answers.....some type of improvement then seriously consider having it removed!
 
 HUGS

JennyCoulon · Dec 10, 2008

I just don't know what to do

My oldest Mason has had his button for about 2.5 years. He had acid reflux prior to the surgery and they actually had him stop his med for a couple of days and then they put a ng tube down his nose and he was hooked to some monitor to see just how many episodes he was having of reflux.

We had the choice to do the funduplacation (sp)? and we chose not to. The surgeons told us that some families decide to do the fundo and it works and sometimes they do it and it causes that naseau, wretching feeling. He also stated that sometimes families chose not to do it and then end up going back in to have it done. I would check with the CF docs and the surgeon to see what they suggest.

I would say that if she needs it not doing it probably isn't an option. Good weight gain=good lung health. Keep us updated and I hope things get better.

JennyCoulon · Dec 10, 2008

I just don't know what to do

My oldest Mason has had his button for about 2.5 years. He had acid reflux prior to the surgery and they actually had him stop his med for a couple of days and then they put a ng tube down his nose and he was hooked to some monitor to see just how many episodes he was having of reflux.

We had the choice to do the funduplacation (sp)? and we chose not to. The surgeons told us that some families decide to do the fundo and it works and sometimes they do it and it causes that naseau, wretching feeling. He also stated that sometimes families chose not to do it and then end up going back in to have it done. I would check with the CF docs and the surgeon to see what they suggest.

I would say that if she needs it not doing it probably isn't an option. Good weight gain=good lung health. Keep us updated and I hope things get better.

JennyCoulon · Dec 10, 2008

I just don't know what to do

My oldest Mason has had his button for about 2.5 years. He had acid reflux prior to the surgery and they actually had him stop his med for a couple of days and then they put a ng tube down his nose and he was hooked to some monitor to see just how many episodes he was having of reflux.

We had the choice to do the funduplacation (sp)? and we chose not to. The surgeons told us that some families decide to do the fundo and it works and sometimes they do it and it causes that naseau, wretching feeling. He also stated that sometimes families chose not to do it and then end up going back in to have it done. I would check with the CF docs and the surgeon to see what they suggest.

I would say that if she needs it not doing it probably isn't an option. Good weight gain=good lung health. Keep us updated and I hope things get better.

JennyCoulon · Dec 10, 2008

I just don't know what to do

My oldest Mason has had his button for about 2.5 years. He had acid reflux prior to the surgery and they actually had him stop his med for a couple of days and then they put a ng tube down his nose and he was hooked to some monitor to see just how many episodes he was having of reflux.

We had the choice to do the funduplacation (sp)? and we chose not to. The surgeons told us that some families decide to do the fundo and it works and sometimes they do it and it causes that naseau, wretching feeling. He also stated that sometimes families chose not to do it and then end up going back in to have it done. I would check with the CF docs and the surgeon to see what they suggest.

I would say that if she needs it not doing it probably isn't an option. Good weight gain=good lung health. Keep us updated and I hope things get better.

JennyCoulon · Dec 10, 2008

I just don't know what to do

My oldest Mason has had his button for about 2.5 years. He had acid reflux prior to the surgery and they actually had him stop his med for a couple of days and then they put a ng tube down his nose and he was hooked to some monitor to see just how many episodes he was having of reflux.
 
 We had the choice to do the funduplacation (sp)? and we chose not to. The surgeons told us that some families decide to do the fundo and it works and sometimes they do it and it causes that naseau, wretching feeling. He also stated that sometimes families chose not to do it and then end up going back in to have it done. I would check with the CF docs and the surgeon to see what they suggest.
 
 I would say that if she needs it not doing it probably isn't an option. Good weight gain=good lung health. Keep us updated and I hope things get better.

I just don't know what to do *ETA*

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I just don't know what to do ETA