If Mag EGD comes back that she still has erosions etc in her esophagus, she needs a fundo because she's maxed out on meds.

If her ph probe comes back that she refluxes as much as we think she does and feeding therapy is unsuccessful then she has to have a fundo because of the lack of eating despite the fact that her esophagus looks good.

Does this seem right to you?

I'm so obsessed with her reflux and eating right now I can't think of anything else. I can't stop thinking of the possible outcomes of these next tests. It's like this is it, this is going to be the deciding factor on her reflux fate.

But then I keep thinking if the meds aren't doing enough for the acid then what about her small intestine which was the worst last time??? What are they going to do about that. He said 6 months ago he thought the high dosage of prevacid would fix it but now he's saying he doesn't think the meds are enough for her.

ARGH! Sorry this turned into a rant!

I do not know the answer to that Lena. I wish I could help you.

The only thing I can do is empathize with you over the obsession for eating and reflux. It is so overwhelming and completely consuming. Most days it was in my every thought and I could not shake it at all and I thought I would go nuts from being downright obsessive. It is the way we are wired as parents.

Is she getting enough feeding intervention? Do they have an OT and dietician working with you? Maybe there is still time.

I am moving this into the fundo forum as you will get better fundo responses there.


{{{hugs}}}

We haven't even started therapy yet. I will find out what day we start tomorrow morning.

We haven't started soon because when she started on the prevacid she started eating non-stop. She gained almost 8 pounds! That has obviously changed though.

His thought is, that it's 100% the reflux pain causing her not to eat but he's willing to try therapy to see if there is some improvement to be found.

Lena...I agree about being concerned with her intestine. How will a fundo fix that? (I don't mean to sound negative...:oops:...I just remember you posting that she had acid damage in the small intestine, and I wonder how a fundo will keep her intestine from continuing to be damaged.)

Poor Maggie.....she's too darn cute to deserve this! :(

I need to research more on ulcers etc. in the intestine. I don't think there is anything that can be done...

Well, it seems right in the fact that if they are saying if you can't get her to eat then she may need a feeding tube and thus in return need a fundo beings she refluxs so she doesn't reflux the feeds up and possibly aspirate.
As for being obsessed, I think we've all been there.

Just remember you can only control today !!!

Unfortunately, that is pretty much what my GI told me- we will re-do testing next summer to see if he is still refluxing and then we may have to look at surgery. I am still trying not to think about it as we have a long way until then, but it is in the back of my mind.

Boy, I wish I had some great words of wisdom for you, but I do not. I wish you the best of luck--it is such a hard decision to make and she has been thru so much allready.

Lena,
Would they do a g tube too? Our GI told us before (but he clearly is not the know all-end all) that he wouldn't do a fundo on the basis of pain and not eating alone because the fundo has the potential to make that worse. I suppose if they do a g tube and a fundo, she doesn't have a choice with the eating. Fundos can cause different pain though. So no, it doesn't make sense to me to do it on the basis of pain and not eating alone (no esopageal damage), unless her lack of eating is so severe that a g tube is placed so that the nutritional needs are now met because of the surgery.

Yes it does make sense though to do a fundo if she continues to have esophageal damage despite high prevacid doses.

I guess what I am getting at is that doing a fundo is a risk verse need kind of thing. Since there are significant risks involved in doing a fundo, I think we decide what is it we are trying to accomplish by doing one--and then weigh that against the risks. A few examples: we want her to stop having pain and start eating again doesn't sound like it can stand its ground against the risks of the surgery. If you say our main goal is to get her gaining again and to be able to maintain that, I think a gtube-fundo option sounds reasonable. I am really tired right now, so I hope I am making sense:coffee: . Bottom line, know the risks involved and talk through those with the doc to decide what the course or action would be IF any of those occur post fundo. Decide with the doc if the fundo would still be justified IF one of those occured. This way you are deciding together just how important it is for her to have it done, or not.

Yes she would have a G-tube placed at the same time for two purposed 1. to get her weight up and 2. for release of gas.

My biggest fear is we go through with doing the fundo and she still won't eat and still has problems in the intestine. Then what?

Oh Lena, (((hugs))))

Just go through these tests and use the info you get from them to decide. Even after Es fundo I think he will probably eventually need meds because his acid is damaging to him. That is something we will look into later.

On the fundo part, A lot of kids do good with the fundo, I hear of success stories all the time now. On the internet you hear the horror stories because when it turns out good people don't look back, when it doesn't people are out searching for answers. I know I am not the norm. But, that is exactly why I am here on this board. To give hope. Some kids need the fundo, just plain and simple, and alot of kids DO have success with it.

I don't know where we would be if Eli didn't have the fundo, it brings tears just trying to imagine. The fundo has changed his life. He is not perfect but he is a completely different child. I would do it again and again in a heart beat to get what we have gotten out of it.

Right now, you need to focus on these tests and then go from there. I know how hard and scary it is, I fought it all the way. But now, I understand that it was something greater opening the doors to help him, because I couldn't do it, If that makes any sense.

They may say she doesn't need it that they can or will do something else, and I hope that is so. But, you have to do what you have to do to find out what needs to be done. I am with you on this! I am right here for you and please keep me posted and talk it out all you want, it is very hard.

It does sounds reasonable. And I too get obsessive and fixated on how much they eat, reflux, etc. It's a lot to manage! Ask as many questions as you can/want to of your g.i. A fundo should not be taken lightly, but in some cases it turns out to be for the best. As many issues as he still has, Jackson refluxed so badly that he always had milk in his ear drums, and in fact ruptered them three times! He stopped eating completely 3 times and fell off the chart for weight. we were maxed out on meds and opted for a fundo w/ pyloroplasty when he was 10 months old--for lack of a better option. And although we've had a whole slew of post-fundo problems (and even a 2nd one) he hasn't had a serious ear infection since--we were able to protect him from hearing loss! And he actually willlingly ate for a time after each surgery! That was a huge success to us!

I would definitely consult an OT/feeding specialist and get as many opinions as you can in order to feel comfortable with the decision you will at some point have to make.

Don't forget to breathe!!
Erin

Great post, Erin!

Lena,
The decision to go ahead with g-tube/fundo was one of the hardest decisions we have had to make for our son. We literally obsessed about it for 4 months before making the decision--and really Tucker made the decision for himself since he flatly refused to eat and was not gaining weight, etc.....He has had some complications following the surgery nearly 6 months ago, but we know that it was the right decision for him.

Try not to obsess too much (yeah right....) Trust your doctors and get lots of opinions from your various medical professional. (Our pulminologist was the one who actually helped us make up our mind about Tucker's surgery, and it wasn't even a pulminary issue for him).

Hang in there!

Lena, I would share your biggest fear with the GI and see what their next step plan would be if that happens.

One thought I have is that if she doesn't eat now, and she doesn't eat after a fundo, then you lost nothing. But what you got out of it would be the g tube-- so you don't have to worry about the lack of nourishment and you would have gotten the reflux controlled well enough so that she won't have inflammation in her esophagus. Those are two pluses!