I can't willingly let them cut my baby & twist her intestines into knots knowing that she won't die without the surgery. I just can't do it. She's so happy right now and I'm worried she'll be miserable afterwards. Yes her reflux is severe but she's used to it. She's been dealing with it her entire life, why give her new problems to deal with? If she was miserably crying all day in pain then I could see doing it but not now, not when she's happy. We have another appointment with the peds. Surgeon tomorrow. I'm assuming he's going to want our answer then.

How did you decide whether or not to go through with the fundo?

What a tough decision, Lena. {{{HUGS}}} I'm sure you'll get some insight from others who have gone through this very thing--I just wanted to wish you the best with whatever you decide!

Before we knew about Em's EGID, surgery was already being discussed. I told myself the only way that I would agree to a fundo is if her life were compromised with out it. That meant for me that we were not even able to tube feed her so that she could thrive. A fundo just seems to open up a whole new slew of problems that I am not sure are any better at times than the reflux. I haven't done tons of researh on it, because we were no where near the point of my agreeing to a fundo. I am sure you have done way more than I have, but that was always my feeling when they would say things like "we hate to look at surgery" and things like that.

Hi Lena,
Before I say how we decided, let me just tell you that if you have a feeling inside you that it should not be done--you need to follow that instinct. I realize that feeling could be out of fear--but you know the gut instinct way down inside--that one knows whether or not you should do it. If something is holding you back, then my advice is to not do it.

I had that feeling before Chelsea's second one and I ignored it because I wanted the fundo to work for Chelsea. I wanted to be able to do something to fix her problem and thought this was supposed to be the fix. I wanted another chance to make it work because the first one only worked for a couple months. That was supposed to be a fluke..this time it would surely work. What we found out later, is that she never should have had the second one done because the problems that remained after the first fundo were a result of a different problem. I had a feeling that it wasnt the fix, but I ignored it and pushed on because our GI thought it was the right thing to do. I figured that I must not be crazy if he thought we should do it. All in all, she is doing well now, but we spent a year dealing with problems that came with the second fundo just to end up back where we were before we did that one when all was said an done. Our GI ignored his logical thinking and recommended it and now he wont look at us in the face because he knows he was wrong. He said we were both being hypersensitive in wanting to protect her and instead we made it worse. So, I guess I just want to make sure that the surgeon and gi are recommending it for the right reasons as well. I think too many times doctors think that this surgery is a fix, and although it can be for some kids, some kids really just dont get fixed.

If I remember correctly, her biggest problem as a result of the reflux is not gaining weight well. I *think* you said she is in the 3rd percentile after this recent weight gain...right? They said they would do a fundo with a gtube...you were considerng just the gtube. My thought process goes to a gtube without a fundo can cause an increase in reflux. So hence part of the dilema I suppose.

Do the meds work to control inflammation? It sounds like she isnt in pain...why do they think the reflux is making her not want to eat if she isnt in pain due to insufficient acid control? That doesnt make sense to me, what do you think about that?

To answer your original question, for Chelsea's first fundo--we decided to do it because she had moderate to severe esophagitis even on prevacid and zantac for 2 months, she screamed in pain all day and night, had stridor non-stop despite steroid treatments because we discovered her vocal cords had been badly damaged by acid, and had chronic sinus infections that would make the stridor and wheezing worse by setting the whole thing off (she always refluxed up into her nose). She turned blue everyday at least once a day, sometimes more. It also caused her immune system to weaken. She also had a hiatal hernia which told us that she could not outgrow her reflux. She was 22 months at the time of the first surgery. The first one was definitely the right call. It helped a lot for a very short time--but looking back, she must have had a delay in emptying that wasnt discovered because she had the worst gas bloat problem afterward that tainted the recovery--she still screamed all the time for about 6 weeks. Once that resolved, we had a month of pure bliss before we started seeing evidence that it herniated again. It was that month of pure bliss that motivated the decision for the second. Little did we know at the time, that the reherniation wasnt the issue!

S I hope this long winded explanation is helpful. I know that generally i sound anti-fundo on this site, and I dont necessarily want to come across that way. If your girl really needs one then I would say do it. I just think that too many surgeons are in a fog when they spout out their success rates without really explaning to a parent what theuir definition of a fundo success is. For example, when we asked our surgeon what is considered a successful outcome with a pyloraplasty for DGE--he said that a success is that they no longer have a delay in emptying. When we asked what if dumping syndrome results instead--his response was that from a surgical perspective--a child having dumping syndrome is still a success because dumping means they are no longer delayed. I dont consider that a success--I consider it trading one set of problems for another. If you dont ask these kind of questions, you dont realize that their idea of success involves having all these new problems--the ones we dont want that we arent aware of because it isnt in our definition of success!!!!! I hope that makes sense.

Let us know what you decide. We will support you no matter what!:wink:

Lena, I couldn't decide either. God, it was the most awful time in my life. Hubby finally called me at home from work and told me it was a done deal, that I couldn't do what needed to be done so he did it for me, It was a heavy load and he took the burden, I am so thankful he did or we would still be debating it til death. Then, I had to trust God with my baby because ultimately He is who led us to that point. I don't know if that helps but I totally know what you are going through.

If she's really up to 26 pounds (I think she is) that puts her just below the 3rd percentile, an extra ounce or two would put her on it.

The acid is under control on meds but obviously the physical act of refluxing is there and pretty bad. Her longest episode was 40+ minutes. I can tell she's in pain when she's refluxing hard but she doesn't cry and keeps on going with what she's doing. The other day she fell asleep sitting with me and she made the most god awful noises like she was choking but she cleared it without even waking.
She would have to stay on meds even after the fundo because of her previous acid issues in the small intestine.

I keep thinking if we can keep her going until she's old enough to understand that she HAS to eat then she'll be okay. Even then there is a better success rate the older they are.

We've pretty much had three opinions, all for doing a fundo. Her first surgeon/GI that did her pylorotomy, her current GI and now the peds. surgeon.

I tried to make DH make the decision and he won't. He said if things are worse after the surgery I'll blame him and if we don't go through with it and she looses weight again I'll blame him for that too. He wants it to be a joint decision. He won't even tell me what he's leaning towards right now.

I think I'll tell the surgeon tomorrow that we still aren't ready to make a decision yet. He said he won't do anything unless he knows we are fully comfortable with it. I don't know if I ever will be though.

It is a hard decision to make. All I can say is go with your gut feeling. Sam has so many other health issues that it is hard to compare him to a "normal" child. I have no regrets, and the fundo has improved his quality of life and we have had no major side effects. I wish you luck in making your decision.

Lena, I don't know much about the Fundo but just wanted to send you a hug :hug: I can't imagine how hard of a decision that has to be for you and Dh! You are a great Mom!

It sounds like to me, based on what you are saying, is that you can wait still, taking it a month or so at a time. You said that the main reason is for her to grow. You said that if you can wait until she is older, not only may it work better, but you can get her to see that she needs to eat. She may not choose to eat even when she is older, but at least the success rate is higher when they are older. If she just recently had a growth spurt, even a little one, perhaps more will come. Maybe you can wait, taking it a month at a time, and see if the growth continues at a steady rate, or if it stops again. Then you know you did everything you could and could go into it knowing it is the right thing.

Fortunatley I have not been in your position, so just wanted to say.. go with your gut instinct. Also, sending you {{{HUGS}}} - it's a hard decision to make on behalf of your child...:hug:

I totally agree with Carla. I would not have been able to go through with that surgery except that E was on the floor unable to smile or play because he was so sick, if she seems happy and healthy than maybe wait as long as you can and either the success rate will be higher or she may start eating and hit a few more growth spurts.

I have a friend whos daughter does not have reflux but her daughter is Elis size and 7, 35 pounds. She was finally sent to a specialist and was told she has a certain thing missing and that she probably will be small and won't grow until she hits her teens and that it is ok, weird I know, but there are some kids who are small and hopefully/maybe she is one. I have another friend who is 85 pounds and her hubby is 100 pounds, small people, and the docs are pusing for their child to see a feeding specialist because it is so small but they know their child is just little, it is happy and healthy. Anyhow, that just came to mind...

I think the urgency to do it now was because she had lost weight in the months between appointments. Now that she's gained weight maybe tomorrow he'll say he thinks we should hold off too!

Wouldn't that be encouraging if he does? Keep me posted :wink:

I have no fundo experience at all but I do have plenty with non-eating and FTT. Any gain is a good thing. It shows progress and it has to start somewhere. If she had a growth spurt, no matter how small, then I would rejoice. As Erin and Carla pointed out my main concern would be her happiness, overall health, and ability for functioning. Only you can answer that. Tough to be making such huge decisions, isn't it? I do not 100% know your situation but it sounds to me that you do NOT want to make the decision and would prefer that it go away or become a no-brainer. Since it is such a huge decision I applaud your investigating this and not making a decision in haste.

Have you tried to supplement at all?

Let us know how the appointment goes.

We've tried high calorie foods, duocal, the pediasure type drinks, sneaking extra calories in anywhere we could. We even tried adding powdered milk to regular milk and she could tastes the difference. She has never not noticed and it blows up in our faces. She won't trust us that we didn't doctor up her food and won't touch anything, even her beloved milk for a day or two. She still won't let me make her a peanutbutter sandwich without her watching to make sure I'm not putting "yucky sprinkles in it." She has to inspect the bread, the jar of peanutbutter and even the knife.

LOL, I know it I shouldn't be laughing, but that is soo cute, I can picture her doing this, she is a smart little cookie!!! :wink:

You are so right not to rush your decision, you will make the right one when you are ready. I wish you peace with your choice.

:hug: Lena...I have no experience with fundos but wanted to say that I know you'll make the right decision. Let us know how the appt. goes tomorrow.

We've tried high calorie foods, duocal, the pediasure type drinks, sneaking extra calories in anywhere we could. We even tried adding powdered milk to regular milk and she could tastes the difference. She has never not noticed and it blows up in our faces. She won't trust us that we didn't doctor up her food and won't touch anything, even her beloved milk for a day or two. She still won't let me make her a peanutbutter sandwich without her watching to make sure I'm not putting "yucky sprinkles in it." She has to inspect the bread, the jar of peanutbutter and even the knife.

I know it is not funny either as Curran did this for awhile when we were trying to sneak things into his food too, but it was funny in a way. Iain would spend time picking every single last prevacid bead out of his applesauce and screeching because his hands were dirty while doing it when we attempted to have him self feed and incorporate the prevacid at the same time. It is astounding what they can do, isn't it?

Have you tried nutren jr with fibre? It is for her age group and it tastes like a vanilla milkshake. YUM! It may be worth a try if you have not given it a shot yet. Any chance a friend or relative could try to give it to her nonchalontly to see if she likes it? When we lost trust for a bit there with Curran we had others introduce things to him and it worked until he realized we were not doctoring his food anymore.

Looking forward to your update and thinking of you.

I didn't get my wish. Update is in the update section.

Oh No, Lena! I will be looking for your update...

And. Leigh! Oh my Gosh, I am laughing so hard at your avatar and sig!!!