We saw a surgeon yesterday and he advised us that our 2yr old needs a fundo. He is doing it "open" and told us the recovery could be rough. Can anybody that has a child that went thru this please explain to me what your experience was? He is puting a g tube in to help us. I need to know the truth of how bad this is going to be. Sometimes it is easier knowing the worst rather then being to over optimistic. Any thoughts would be great as well as any timelines for getting back to a somewhat normal life. Thanks

No experience with fundos here but those who do will be along to advise you.

Just popping in to give you some {{{hugs}}}

I would imagine that each child will recover at their own rate and the guidelines they give you are likely middle of the road, but again I do not know for sure.

Take care and keep us updated on this. Put any tests or surgery on the calendar if you can so that members can support you through it.

Hello,

Our son had the fundo. First, I would like to ask why they need to do it open? We had it done laproscopicly and it is a much easier recovery and much lower with pain.

Some questions: Do they plan on putting in a tube? Why are they doing the fundo? Do you know that they won't be able to vomit and can have many complications from the surgery and most likely still experience reflux and need meds?

There are many reasons to do a fundo as well, I am just saying these things because alot of people aren't told this before surgery!

Having said all that, we had it done and it was the best thing that ever happened to our son, he is a different child now. We did it because he had a low immune system, pneumonias, sinus/ear/throat infections, chronic cough and wheezing, and it took care of those things. In its place we have gagging, choking and retching now, stomach aches, and some dumping syndrome.

She has severe GERD along with all of the pulmonary problems, recurrent infections, FTT and all of the symptons that sounds like your sons. The medications are not working and anitbiotics have become useless and with every infection they inject her thighs with rocephin. She has dropped a significant amount of weight and has constant ulcers in her throat and GI tract from the acid. She is on about 18 doses of meds/day and that has become horrible. The surgeon, GI and Pedi all told agree it is past due to have it done. We have been holding off hoping somehting would change. They did give me the statistics but said the hope is that it will improve her quality of life. We know it could be a huge mess but she is constantly in and out of hospitals and she has developed a pulmonary disease from the constant refluxing. We have weighed the pros and cons at least the ones we can think of but their really seems like we are out of options. She had 2 ph probes in the last 6 weeks and both were bad with the acid levels. She has stopped eating becasue of the ulcers and only drinks. They are putting a tube in for meds and feeds if need be. The surgeon told us he reserves this surgery for bad cases becasue it is a long haul. He did not feel that the results were as good laproscopically and felt he had better control with an open procedure. We are going to CHOP in Philly which is suppossed to be one of the best so I am hoping we have made the right decision.

As long as you and your family feel it's the right desicion for your daughter then it is. The Nissen I am sure you know is by far a perfect procedure and sometimes it can be trading one evil for another. Our son had his 1st Nissen when he was 3& 1/2 years old. All in all he is better off now then he was before the surgery.

Sounds like you guys are making the right choice and doing the best that you can. We had ours done laprascopicly and it is a totally different recovery so I can't really help you there. With laproscopic it took our son about a year before we felt we made the right choice about the surgery because the recovery is so rough. I am sure it will be much more difficult open procedure. Once he heals physically from the surgery it will be the same but that will take much longer. The wrap inside and getting used to it and it healing and swelling are the things to worry about and are what takes a long time. With open it will be longer until the site heals.


Having said all that, Our son has done great with the surgery. It did what we were hoping it would do. We are amazed at the results and so thankful we did! He has had no lung, ear, nose, throat problems since. His immune system is stronger and he is able to eat and keep his food down. He has energy now like a normal child and isn't laying around weak all the time. He has almost caught up developmentally, he was really behind from being sick so long. So, there is some encouragement for you.



Has your child been checked for emptying problems? We found out our son had severe emptying problems and they corrected it during the surgery as well. We think it may have been causing most of the problems he was having because it couldn't go down so it had to come up! A fundo should NEVER be done without examining the emptying first because if you close off the top and the bottom isn't emptying you will have even more problems. This is common. Reflux and emptying problems go hand in hand alot. I know, its all very frustrating isn't it?


Keep me posted. Ask many many questions of your doc. I still am not understanding why they are doing it open. Does your child have other issues that warrant that possibly and that is why he feels it would be better? Its just that the recovery and risk of infection is so much lower laprascopically.



We had ours done at UCLA. The chief of pediatric surgery there did Elis and he is really really good. In the top of the nation. I would look into good surgeons for it and make sure you get a really good one. It can make a huge difference in the outcome. You can ask how many they do in a week, what their success rate is, what they expect from the outcome, how long recovery, and such and such. This will give you an idea. You may want to ask how often they have done it open and laprascopically. If your surgeon is doing it that way because he hasn't been up to speed with doing it laprascopically you may want to look somewhere else if that is the case.


Anyhow, sorry so long, please keep me posted on all you find out. I will be thinking of you guys!!!! And, it really did help our son.

It does sound like you have done everything that you can for your dd and the surgery is your last option. I am glad that your docs are open and up front with you about this surgery.

I have three children that have had the fundo done, with one requiring a second one. I know for us we had no other option for my children and would do it again. My dd faired well with the surgery but my two sons had many complications after. The one thing that you have to realize is that this surgery is not always a cure all for the children.

As was stated with this surgery there could be a whole new set of problems that arise in the child. My oldest has had many new things pop up since his surgery but we are dealing with them.

I do think that it is smart that the doc is doing a gtube with the surgery. My children did have it done but two them required the gtube later. I also think that having the open surgery can be better that is how my son had his second one done. I do know that the open can be a longer recovrey but the doc is able to see better in this surgery.

We have been to Chop for second opions and I feel that they have a very good staff there. If we lived closer I would use chop on a regular basis. I do wish you luck and hope that all works out well. Please keep us posted.

Are you in Philly? I am orginally from there but now in central PA.


Melanie

I agree with the others. Sam's fundo was done done "open". He had an epidural for pain for the fist 3 days and then was given meds in his g-tube. He did not seem to be in too much pain. I would talk to the docs about pain control. Sam's recovery was complicated by other "conditions" so I can not tell you too much about what type of recovery to expect. It does sound like you have done all you can. i have heard good things about CHOP.

First, I'm so sorry you are having to make this decision. It is very difficult to make. It took us 5-1/2 months to make it, and we are so thankful we did. Tucker has had some problems since the surgery, but nothing nearly as scarey as the ALTEs he had prior to it. His surgery was done open because he was too small to do it w/ lapro. He healed pretty quickly--was home within a week. (He was only 5-1/2 months old when he had the surgery). His main problem since then has been retching. We are now thinking he has DGE (delayed gastric emptying). He was never checked prior to the surgery. I agree with Elismom that the emptying issue needs to be checked prior to surgery. It may (or may not) have saved us months of retching and a possible 2nd surgery.

I hope all goes well. Once you make the decision, you will feel like a huge weight has been lifted off your shoulders. You have come to the right place for advice, the ladies on here are so knowledgeable and live with these issues 1st hand. No matter how wonderful your doctors may be, they get to go home at night and not deal with a refluxing child. Therefore, sometimes the best advice you can get is from other moms who live and breathe the same issues as you do. Hang in there.

Noah has had several open fundoplications, I feel the open was a little harder to heal from just for the fact of the incision. I understand the Dr.s thinking in regards to open vs lap. The main reasoning is that SAGES states that an open Nissen is usually more succesful than a lap becasue they can actually feel the wrap in thier hands and it keeps it from being too tight.

That is good to know, Katy. You are the queen of fundos!!!