Re: Latest on

July 31, 2004

Hi Jodi-

My heart aches for you and and all that he has gone through. I will

pray that God gives you and the doctors wisdom on how to fix him...quickly, and

that it works permanently. You and hang in there and I will pray for

you!

July 31, 2004

Hi Jodi,

((BIG HUGS)) Thanks for sharing 's results with us, I don't

know much of anything about g/j-tubes, nissens or the rest but I can

feel your stress. I'm afraid that I don't even have any great words

of wisdom, know that you're in my thought's and prayers and that you

know the best and will make the right decision for him.

I'll be thinking of you often!

Leah, mom to 9yrs and Olivia 4.75yrs, 18lbs, 33 " , RSS, OI,

lactulose, senokot, tums, zantac, prilosec, (periactin soon again),

pamidronate IV infusions

> Hi All,

> I am in need of some SUPPORT! I knew I could come to you guys.

So,

> here goes.

>

> recently had a pulmonary appointment in which they

expressed

> strong concerns about him refluxing, breathing a little faster,

and

> possibly aspiration. So, I gave them Dr. H's info and asked them

to

> discuss their concerns with her and see what she recommends. This

> took place before the convention, mind you.

>

> They called me the next day and told me that Dr. H wanted

to

> have another gastric emptying test done, to see if the reflux and

> aspiration would happen to show up in that 90 minute time span.

She

> instructed them on how to perform the test, and it was scheduled

for

> the 27th, right after convention. When we saw Dr. H at

convention,

> she told me that they couldn't give her any concrete evidence as

to

> why they thought these things, but she also wanted to know, since

she

> has struggled with whether he has reflux or not. When we were in

New

> York, he had 2 DGET done, plus a Ph probe, and all supposedly came

> back with the normal range. Plus, this wasn't the first Ph probe

he

> had done! So, all the tests so far showed that he DID NOT have

> reflux, but yet he was and is still spitting up all the time!

>

> So, on to the test and results. We had the test done this past

> Tuesday. It was just awful. You know how they hate it when you

even

> take them into a room with all this machinery and people standing

> around. They aren't stupid! So, I lay down, and she

starts

> to bolus him. Which isn't a favorite to him, as he spits up every

> time! So, he spit up before the test even started! They had to

> clean him up, and slide him under the camera. He spit up a total

of

> six times, thank goodness (or maybe not), the camera caught some

of

> the episodes. They had to keep changing the sheets and wipe him

up.

> It was a mess, literally! He spit up, or should I say threw up so

> much I even asked if there was anything left in his stomach! She

> told me there was a little left! Ugh! So, at the end of the

whole

> ordeal, I asked if they were going to be able to tell whether this

> was reflux, and if he was aspirating, because these are the things

I

> wanted to know. So, she gave me a puzzled look, and went to talk

to

> another technician. She came abck and asked to take one more

picture

> of him with a film under him so they could see his lungs better.

So,

> they did.

>

> Anyway, to make this long story longer, I got the results back

> Thursday. I have been struggling with this for a couple days, and

> debated on whether to even post anything, since I am waiting on

Dr.

> H's recommendation from here. But, I really can't take this any

more

> and I wanted and needed some supporrt from you all.

>

> The results are that showed severe reflux during the test,

and

> that, yes, he is ASPIRATING!!!!! All this time, I have told them

> that he has reflux, and that I was worried about him aspirating!

> They did a stupid swallow study and said, nope, he is swallowing

just

> fine, and no aspiration! His other two DGET showed no reflux and

> aspiration, you have nothing to worry about!!!! So, now this year

I

> take him to pulmonary, and it is a different story. Why weren't

> they worried about it before? Go figure. SO, anyway, I am

> struggling with what to do here. We have two options! We can go

> back to a j tube, which is the tube he wasn't growing on. The

tube

> he had previous to seeing Dr. H, or we could do the Nissen. With

> either of these two choices, there are pros and cons, and the

> decission either way won't be easy. I know waht Dr. H will say.

He

> needs the Nissen. But, it worries me that he will go through that

> MAJOR surgery, and it will be for nothing. How many times at the

> convention did I hear them talking about kids blowing them, or

that

> they just did not stop the refluxing! Ugh! And with the j tube.

> didn't grow on that! And, do I want to make his whole

> digestive system abnormal again, and not have anything in his

belly.

> And, will I be able to give him food still, since he is

aspirating?

> I mean, won't he still spit up, and aspirate that? When he was on

> the j tube before, he was getting a lot of bile in his stomach,

and

> he was spitting that yucky green stuff up back then. Dr. H said

that

> wasn't normal, thus the reason for changing him to the g tube

again!

> So, here I sit with these questions, and this stress of making

this

> huge decission that will affect my child's life, from here on. I

> can't let him aspirate adn risk the damage that could happen. I

am

> so torn and so nervous, and so stressed. I am having major back

> trouble, and I am attributing that to the stress. I am trying to

> deal with this, and wait for Dr. H's suggestions, but I feel I

> already know what she will say. The Nissen. And, I have to say I

> really don't feel comfortable having surgeons here do it because

they

> have done so many different things with that surgery for our

> kids......! Okay, I have rambled here long enough. It is just so

> nerve racking that I have said all along that he is refluxing, but

> the tests show not. Also, that is one of the reasons I went to

New

> York. I was prepared that he would possibly have that surgery,

but

> when the tests Dr. H had run didn't show anything, they decided

> against it. So, that is annoying and frustrating because in her

> heart she thought it was reflux, but the tests showed it wasn't.

His

> pediatrician has said all along it was reflux. Even his GI docotr

> said it was, despite the testing he had done. So, my frustration

too,

> lies in that we could have done something about this while I was

in

> New York with him. Instead, we let the spitting up go on, and I

> guess aspirating too. So, I just wanted to reach out to you all,

and

> some of you had inquired about wanting to know what the pulomanary

> people said, and others wanted to know the tests results. So,

here

> it all is. In a nice long and dragged out post. This just

confirms

> my stress level and frustration! ) I am sorry I used so many

> words, but that's one of my downfalls I guess! )

>

> Thanks for listening!

>

> Jodi R.

> 's mommy

> He has been through so much already!

July 31, 2004

Jodi R,

I am so sorry you and are going through so much right now. The part

of parenting I find hardest is when we have a choice to make for our kids,

instead of knowing there is no other direction for a decision.

My 4yr old son Henry had a fundo, G-tube & pyloro almost 2yrs ago. For a

year he didn't need any meds for reflux and then it began to creep back. During

that year he made tremendous progress (I wish I had helped him get his food

issues under control, but that was another " decision " ) from the surgery gaining

about 9lbs which was a miracle for him.

Go with your instincts - you are the mom and the mom usually knows best.

Thinking of you,

H

Mom to Henry - RSS, 4ys old, 32lbs, 38 in

- nonRSS 8yrs old, 43lbs, 48in

July 31, 2004

HEY GIRL!!

i am so sorry to hear what you are going through and wish i could

give you the right answeres!!! unfortunately as you know

christopher doesnt have a tube so i dont know what you are exactly

dealing with and there for cant tell you which way to go, but know

in your heart that you will make the best decision possible and

hopefully someone on here will be able to offer you guidence to help

in your decisions!! but i am always here to listen and i will pray

for you guys!! i will give you a call soon (i am not feeling to

well today and may actaully end up down the er by days end)

i know how frustrated you are since we discussed this on the phone

in the past!!! hang in there and know i am here for you and love

you guys, ok!!!! ((HUGS)) to you!!!

jodie

> Hi All,

> I am in need of some SUPPORT! I knew I could come to you guys.

So,

> here goes.

>

> recently had a pulmonary appointment in which they

expressed

> strong concerns about him refluxing, breathing a little faster,

and

> possibly aspiration. So, I gave them Dr. H's info and asked them

to

> discuss their concerns with her and see what she recommends. This

> took place before the convention, mind you.

>

> They called me the next day and told me that Dr. H wanted

to

> have another gastric emptying test done, to see if the reflux and

> aspiration would happen to show up in that 90 minute time span.

She

> instructed them on how to perform the test, and it was scheduled

for

> the 27th, right after convention. When we saw Dr. H at

convention,

> she told me that they couldn't give her any concrete evidence as

to

> why they thought these things, but she also wanted to know, since

she

> has struggled with whether he has reflux or not. When we were in

New

> York, he had 2 DGET done, plus a Ph probe, and all supposedly came

> back with the normal range. Plus, this wasn't the first Ph probe

he

> had done! So, all the tests so far showed that he DID NOT have

> reflux, but yet he was and is still spitting up all the time!

>

> So, on to the test and results. We had the test done this past

> Tuesday. It was just awful. You know how they hate it when you

even

> take them into a room with all this machinery and people standing

> around. They aren't stupid! So, I lay down, and she

starts

> to bolus him. Which isn't a favorite to him, as he spits up every

> time! So, he spit up before the test even started! They had to

> clean him up, and slide him under the camera. He spit up a total

of

> six times, thank goodness (or maybe not), the camera caught some

of

> the episodes. They had to keep changing the sheets and wipe him

up.

> It was a mess, literally! He spit up, or should I say threw up so

> much I even asked if there was anything left in his stomach! She

> told me there was a little left! Ugh! So, at the end of the

whole

> ordeal, I asked if they were going to be able to tell whether this

> was reflux, and if he was aspirating, because these are the things

I

> wanted to know. So, she gave me a puzzled look, and went to talk

to

> another technician. She came abck and asked to take one more

picture

> of him with a film under him so they could see his lungs better.

So,

> they did.

>

> Anyway, to make this long story longer, I got the results back

> Thursday. I have been struggling with this for a couple days, and

> debated on whether to even post anything, since I am waiting on

Dr.

> H's recommendation from here. But, I really can't take this any

more

> and I wanted and needed some supporrt from you all.

>

> The results are that showed severe reflux during the test,

and

> that, yes, he is ASPIRATING!!!!! All this time, I have told them

> that he has reflux, and that I was worried about him aspirating!

> They did a stupid swallow study and said, nope, he is swallowing

just

> fine, and no aspiration! His other two DGET showed no reflux and

> aspiration, you have nothing to worry about!!!! So, now this year

I

> take him to pulmonary, and it is a different story. Why weren't

> they worried about it before? Go figure. SO, anyway, I am

> struggling with what to do here. We have two options! We can go

> back to a j tube, which is the tube he wasn't growing on. The

tube

> he had previous to seeing Dr. H, or we could do the Nissen. With

> either of these two choices, there are pros and cons, and the

> decission either way won't be easy. I know waht Dr. H will say.

He

> needs the Nissen. But, it worries me that he will go through that

> MAJOR surgery, and it will be for nothing. How many times at the

> convention did I hear them talking about kids blowing them, or

that

> they just did not stop the refluxing! Ugh! And with the j tube.

> didn't grow on that! And, do I want to make his whole

> digestive system abnormal again, and not have anything in his

belly.

> And, will I be able to give him food still, since he is

aspirating?

> I mean, won't he still spit up, and aspirate that? When he was on

> the j tube before, he was getting a lot of bile in his stomach,

and

> he was spitting that yucky green stuff up back then. Dr. H said

that

> wasn't normal, thus the reason for changing him to the g tube

again!

> So, here I sit with these questions, and this stress of making

this

> huge decission that will affect my child's life, from here on. I

> can't let him aspirate adn risk the damage that could happen. I

am

> so torn and so nervous, and so stressed. I am having major back

> trouble, and I am attributing that to the stress. I am trying to

> deal with this, and wait for Dr. H's suggestions, but I feel I

> already know what she will say. The Nissen. And, I have to say I

> really don't feel comfortable having surgeons here do it because

they

> have done so many different things with that surgery for our

> kids......! Okay, I have rambled here long enough. It is just so

> nerve racking that I have said all along that he is refluxing, but

> the tests show not. Also, that is one of the reasons I went to

New

> York. I was prepared that he would possibly have that surgery,

but

> when the tests Dr. H had run didn't show anything, they decided

> against it. So, that is annoying and frustrating because in her

> heart she thought it was reflux, but the tests showed it wasn't.

His

> pediatrician has said all along it was reflux. Even his GI docotr

> said it was, despite the testing he had done. So, my frustration

too,

> lies in that we could have done something about this while I was

in

> New York with him. Instead, we let the spitting up go on, and I

> guess aspirating too. So, I just wanted to reach out to you all,

and

> some of you had inquired about wanting to know what the pulomanary

> people said, and others wanted to know the tests results. So,

here

> it all is. In a nice long and dragged out post. This just

confirms

> my stress level and frustration! ) I am sorry I used so many

> words, but that's one of my downfalls I guess! )

>

> Thanks for listening!

>

> Jodi R.

> 's mommy

> He has been through so much already!

July 31, 2004

--Hey Jodi it's , hang in there!!! I went through alot of

this with , he refluxed as a baby and projectile vomited all

the time, I had a home therapist in the house and saw all this but

they just kept changing his formula's I don't know if it is

different with the J or G tube... we don't have that but did

find out after the endoscopes and colonoscopy that he had reflux

but really after infancy didn't notice it anymore...Like silent or

so. He now has been on Prevacid going on almost three (3) years, he

has holes in his throat and stomach lining, they are talking about

possible surgery to, Things will get better, doesn't hurt so

bad now but he says his throat is hot .We go back to the doctor In

August to find out if he is better or needs the surgery to.I know

what you are going through hon, It will be o.k. I was wanting to

know what aspirating means I don't know if I know of this or just if

is under a different name??? Let me know what happens and you know

WE are All HERE FOR

YOU!!!

s 5 yrs old 28 pounds 37

inches

- In

RSS-Support , " Jodi Rollison " <rssboy2002@y...> wrote:

> Hi All,

> I am in need of some SUPPORT! I knew I could come to you guys.

So,

> here goes.

>

> recently had a pulmonary appointment in which they

expressed

> strong concerns about him refluxing, breathing a little faster,

and

> possibly aspiration. So, I gave them Dr. H's info and asked them

to

> discuss their concerns with her and see what she recommends. This

> took place before the convention, mind you.

>

> They called me the next day and told me that Dr. H wanted

to

> have another gastric emptying test done, to see if the reflux and

> aspiration would happen to show up in that 90 minute time span.

She

> instructed them on how to perform the test, and it was scheduled

for

> the 27th, right after convention. When we saw Dr. H at

convention,

> she told me that they couldn't give her any concrete evidence as

to

> why they thought these things, but she also wanted to know, since

she

> has struggled with whether he has reflux or not. When we were in

New

> York, he had 2 DGET done, plus a Ph probe, and all supposedly came

> back with the normal range. Plus, this wasn't the first Ph probe

he

> had done! So, all the tests so far showed that he DID NOT have

> reflux, but yet he was and is still spitting up all the time!

>

> So, on to the test and results. We had the test done this past

> Tuesday. It was just awful. You know how they hate it when you

even

> take them into a room with all this machinery and people standing

> around. They aren't stupid! So, I lay down, and she

starts

> to bolus him. Which isn't a favorite to him, as he spits up every

> time! So, he spit up before the test even started! They had to

> clean him up, and slide him under the camera. He spit up a total

of

> six times, thank goodness (or maybe not), the camera caught some

of

> the episodes. They had to keep changing the sheets and wipe him

up.

> It was a mess, literally! He spit up, or should I say threw up so

> much I even asked if there was anything left in his stomach! She

> told me there was a little left! Ugh! So, at the end of the

whole

> ordeal, I asked if they were going to be able to tell whether this

> was reflux, and if he was aspirating, because these are the things

I

> wanted to know. So, she gave me a puzzled look, and went to talk

to

> another technician. She came abck and asked to take one more

picture

> of him with a film under him so they could see his lungs better.

So,

> they did.

>

> Anyway, to make this long story longer, I got the results back

> Thursday. I have been struggling with this for a couple days, and

> debated on whether to even post anything, since I am waiting on

Dr.

> H's recommendation from here. But, I really can't take this any

more

> and I wanted and needed some supporrt from you all.

>

> The results are that showed severe reflux during the test,

and

> that, yes, he is ASPIRATING!!!!! All this time, I have told them

> that he has reflux, and that I was worried about him aspirating!

> They did a stupid swallow study and said, nope, he is swallowing

just

> fine, and no aspiration! His other two DGET showed no reflux and

> aspiration, you have nothing to worry about!!!! So, now this year

I

> take him to pulmonary, and it is a different story. Why weren't

> they worried about it before? Go figure. SO, anyway, I am

> struggling with what to do here. We have two options! We can go

> back to a j tube, which is the tube he wasn't growing on. The

tube

> he had previous to seeing Dr. H, or we could do the Nissen. With

> either of these two choices, there are pros and cons, and the

> decission either way won't be easy. I know waht Dr. H will say.

He

> needs the Nissen. But, it worries me that he will go through that

> MAJOR surgery, and it will be for nothing. How many times at the

> convention did I hear them talking about kids blowing them, or

that

> they just did not stop the refluxing! Ugh! And with the j tube.

> didn't grow on that! And, do I want to make his whole

> digestive system abnormal again, and not have anything in his

belly.

> And, will I be able to give him food still, since he is

aspirating?

> I mean, won't he still spit up, and aspirate that? When he was on

> the j tube before, he was getting a lot of bile in his stomach,

and

> he was spitting that yucky green stuff up back then. Dr. H said

that

> wasn't normal, thus the reason for changing him to the g tube

again!

> So, here I sit with these questions, and this stress of making

this

> huge decission that will affect my child's life, from here on. I

> can't let him aspirate adn risk the damage that could happen. I

am

> so torn and so nervous, and so stressed. I am having major back

> trouble, and I am attributing that to the stress. I am trying to

> deal with this, and wait for Dr. H's suggestions, but I feel I

> already know what she will say. The Nissen. And, I have to say I

> really don't feel comfortable having surgeons here do it because

they

> have done so many different things with that surgery for our

> kids......! Okay, I have rambled here long enough. It is just so

> nerve racking that I have said all along that he is refluxing, but

> the tests show not. Also, that is one of the reasons I went to

New

> York. I was prepared that he would possibly have that surgery,

but

> when the tests Dr. H had run didn't show anything, they decided

> against it. So, that is annoying and frustrating because in her

> heart she thought it was reflux, but the tests showed it wasn't.

His

> pediatrician has said all along it was reflux. Even his GI docotr

> said it was, despite the testing he had done. So, my frustration

too,

> lies in that we could have done something about this while I was

in

> New York with him. Instead, we let the spitting up go on, and I

> guess aspirating too. So, I just wanted to reach out to you all,

and

> some of you had inquired about wanting to know what the pulomanary

> people said, and others wanted to know the tests results. So,

here

> it all is. In a nice long and dragged out post. This just

confirms

> my stress level and frustration! ) I am sorry I used so many

> words, but that's one of my downfalls I guess! )

>

> Thanks for listening!

>

> Jodi R.

> 's mommy

> He has been through so much already!

July 31, 2004

Jodi,

You are much stronger than you give yourself credit for - and so is

. And I think you know in your heart what you have to do. No

one here can make that decision for you.

What am I getting at? Well, you have two choices. One is to try

the g-j tube again. Perhaps with using the Farrell Valve, it will

help the reflux and he will gain weight on it. The other is to do

the surgery. And you know that is what Dr. H. will recommend.

But here is the dilemma: If you go to NYC to have it done, Dr. H.

is not at NYH anymore. She will not have the " control " that she had

over there. If you stay home to have it done, you are not as

comfortable with the doctors, right? Then again, your own doctors

are the ones who believed has reflux and aspiration, so they

know what they are talking about.

It is not an easy decision to make, Jodi. There is no easy, right

or wrong decision here. You have to follow your gut and your

heart. I just wish we could all gather around you like we did in

Chicago and help you through this. It's hard when we all go back to

our homes and are so spread apart.

Whatever your decision is, it is the right one at that point in

time. You know so much already and you will be making a well-

informed, educated one. That is what means the most. Meanwhile, we

are all here to help you however we can. We know it is not easy and

it's frustrating and anger-ridden and scary as hell. Now lean on us

and let us support YOU.

Jodi Z.

July 31, 2004

Jodi-

I just wanted you to know that I am thinking about you and wish I

could give you a big hug. It is so difficult when you know something

is " not right " but all of the doctors say everything is fine.

Hang in there..

Mimi

Mom to Isaac

July 31, 2004

Hi Jodi:-(

Please call me and we can chat about this difficult decision you face with

's care. I have been in similar situations and can tell you what I

went through..pro's con's you name it. The decision will ultimately be

yours but, at least I can share my experience and others with you.

.

J

>

> Reply-To: RSS-Support

> Date: Sat, 31 Jul 2004 13:01:51 -0000

> To: RSS-Support

> Subject: Latest on

>

> Hi All,

> I am in need of some SUPPORT! I knew I could come to you guys. So,

> here goes.

>

> recently had a pulmonary appointment in which they expressed

> strong concerns about him refluxing, breathing a little faster, and

> possibly aspiration. So, I gave them Dr. H's info and asked them to

> discuss their concerns with her and see what she recommends. This

> took place before the convention, mind you.

>

> They called me the next day and told me that Dr. H wanted to

> have another gastric emptying test done, to see if the reflux and

> aspiration would happen to show up in that 90 minute time span. She

> instructed them on how to perform the test, and it was scheduled for

> the 27th, right after convention. When we saw Dr. H at convention,

> she told me that they couldn't give her any concrete evidence as to

> why they thought these things, but she also wanted to know, since she

> has struggled with whether he has reflux or not. When we were in New

> York, he had 2 DGET done, plus a Ph probe, and all supposedly came

> back with the normal range. Plus, this wasn't the first Ph probe he

> had done! So, all the tests so far showed that he DID NOT have

> reflux, but yet he was and is still spitting up all the time!

>

> So, on to the test and results. We had the test done this past

> Tuesday. It was just awful. You know how they hate it when you even

> take them into a room with all this machinery and people standing

> around. They aren't stupid! So, I lay down, and she starts

> to bolus him. Which isn't a favorite to him, as he spits up every

> time! So, he spit up before the test even started! They had to

> clean him up, and slide him under the camera. He spit up a total of

> six times, thank goodness (or maybe not), the camera caught some of

> the episodes. They had to keep changing the sheets and wipe him up.

> It was a mess, literally! He spit up, or should I say threw up so

> much I even asked if there was anything left in his stomach! She

> told me there was a little left! Ugh! So, at the end of the whole

> ordeal, I asked if they were going to be able to tell whether this

> was reflux, and if he was aspirating, because these are the things I

> wanted to know. So, she gave me a puzzled look, and went to talk to

> another technician. She came abck and asked to take one more picture

> of him with a film under him so they could see his lungs better. So,

> they did.

>

> Anyway, to make this long story longer, I got the results back

> Thursday. I have been struggling with this for a couple days, and

> debated on whether to even post anything, since I am waiting on Dr.

> H's recommendation from here. But, I really can't take this any more

> and I wanted and needed some supporrt from you all.

>

> The results are that showed severe reflux during the test, and

> that, yes, he is ASPIRATING!!!!! All this time, I have told them

> that he has reflux, and that I was worried about him aspirating!

> They did a stupid swallow study and said, nope, he is swallowing just

> fine, and no aspiration! His other two DGET showed no reflux and

> aspiration, you have nothing to worry about!!!! So, now this year I

> take him to pulmonary, and it is a different story. Why weren't

> they worried about it before? Go figure. SO, anyway, I am

> struggling with what to do here. We have two options! We can go

> back to a j tube, which is the tube he wasn't growing on. The tube

> he had previous to seeing Dr. H, or we could do the Nissen. With

> either of these two choices, there are pros and cons, and the

> decission either way won't be easy. I know waht Dr. H will say. He

> needs the Nissen. But, it worries me that he will go through that

> MAJOR surgery, and it will be for nothing. How many times at the

> convention did I hear them talking about kids blowing them, or that

> they just did not stop the refluxing! Ugh! And with the j tube.

> didn't grow on that! And, do I want to make his whole

> digestive system abnormal again, and not have anything in his belly.

> And, will I be able to give him food still, since he is aspirating?

> I mean, won't he still spit up, and aspirate that? When he was on

> the j tube before, he was getting a lot of bile in his stomach, and

> he was spitting that yucky green stuff up back then. Dr. H said that

> wasn't normal, thus the reason for changing him to the g tube again!

> So, here I sit with these questions, and this stress of making this

> huge decission that will affect my child's life, from here on. I

> can't let him aspirate adn risk the damage that could happen. I am

> so torn and so nervous, and so stressed. I am having major back

> trouble, and I am attributing that to the stress. I am trying to

> deal with this, and wait for Dr. H's suggestions, but I feel I

> already know what she will say. The Nissen. And, I have to say I

> really don't feel comfortable having surgeons here do it because they

> have done so many different things with that surgery for our

> kids......! Okay, I have rambled here long enough. It is just so

> nerve racking that I have said all along that he is refluxing, but

> the tests show not. Also, that is one of the reasons I went to New

> York. I was prepared that he would possibly have that surgery, but

> when the tests Dr. H had run didn't show anything, they decided

> against it. So, that is annoying and frustrating because in her

> heart she thought it was reflux, but the tests showed it wasn't. His

> pediatrician has said all along it was reflux. Even his GI docotr

> said it was, despite the testing he had done. So, my frustration too,

> lies in that we could have done something about this while I was in

> New York with him. Instead, we let the spitting up go on, and I

> guess aspirating too. So, I just wanted to reach out to you all, and

> some of you had inquired about wanting to know what the pulomanary

> people said, and others wanted to know the tests results. So, here

> it all is. In a nice long and dragged out post. This just confirms

> my stress level and frustration! ) I am sorry I used so many

> words, but that's one of my downfalls I guess! )

>

> Thanks for listening!

>

> Jodi R.

> 's mommy

> He has been through so much already!

>

July 31, 2004

Jodi,

I am sorry you are stressing about having to make a difficult decision, as I can

definitely

empathize with you. had the fundoplication at the same time he got his

g-tube

at 6 mos. old. I did not have a diagnosis for him at the time, and the reason

the g-tube

was put in was because he did not eat at all and was failure to thrive. I had

no idea what a

fundoplication was at the time, but the procedure was explained to me, and I was

told that

it was routinely done when putting in a g-tube. To my surprise now, a

fundoplication

does not always go along with a g-tube. I don't even know if had reflux

prior to

getting the g-tube, but I do know he was on every reflux medication known to

mankind

(or should I say babykind - lol) when he was younger. The fundoplication scared

me very

much at the time, but I thought I didn't have a choice in having this done. I

don't think

has ever aspirated into his lungs, but this was also accrording to

barium swallows

& other tests which may have also had. The worst part about the

fundoplication

was the gagging and retching we went through. This improved over the years, and

rarely does this anymore unless he is ill. While gagging & retching, he

never

threw up formula, but he did throw up large quantities of mucus, and we

alleviated the

situation by venting him (he had lots of gas), suctioning out his mouth with a

bulb syringe,

and just having lots of paper towels on hand. never had a pyloroplasty,

and I

have since learned at the convention that this may have prevented all the

gagging

episodes we had by increasing stomach emptying. I do know that showed

delayed emptying on a gastric emptying scan when he was about 's age. I

also

believe suffered from dumping syndrome, though I am not sure if this was

as a

result of the fundoplication. If you choose the fundoplication route, I would

do a little

more research about the benefits of a pyloroplasty too and also try to have them

do the

fundo as loose as they can to prevent reflux. I believe 's was very

tight due to the

force of which he gagged & retched. By the way, the fundo loosens over time. I

am not

sure what the degree of 's fundo is now, but over the past few years, he

has been

able to burp, so this is a big help. You have much more knowledge about

's

condition than I did when was that age, a great source of support from

this

listserve, and a wonderful doctor (Dr. H), so I know you will be able to make an

informed

decision. Feel free to e-mail privately if you wish, and I will keep my fingers

crossed for

you and that everything goes ok.

Kim C.

August 1, 2004

Hi,

Sounds like a lot to think about. As a mom you will always make the

best choice available based on information at the time. The outcome

is out of your control so I think you should follow your gut instinct.