Infantreflux.org | Anyone here gone through surgery/g-tube?

This topic has 13 replies, 1 voice, and was last updated 20 years, 5 months ago by Anonymous.

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April 27, 2006 at 8:13 pm #7036

Anonymous
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Sarah is scheduled for Surgery for her reflux on May 4th. They
are doing fundoplication with pylorplasty and also putting in a
G-tube. She’s doing pretty bad and was recently
hospitalized for FTT because she is refusing to eat and drink
now. They did a PH study, UGI, and emptying study and found that
she has severe delayed gastric emptying and still has severe reflux
also so we were told at this point surgery is her best and only option
for relief. She has not responded to any medications in the past
and we currently have her on meds till the surgery is done and it isn’t
helping.

We just met the surgeon yesterday and got the date this morning so it’s
really fast and now there are all sorts of questions going through my
mind and I am so worried about it all. I know she has to have it
done because she is really doing bad otherwise but I am just worried
about how it all will be done and what will happen after.

Has anyone here had their child go through this and what happened?

April 27, 2006 at 9:08 pm #7051

Anonymous
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My son had his peg g-tube placed on Jan 4th, 2006 and the mickey button placed this past Tuesday. He also refused all foods by mouth or took in very little. Stopped growing at 6mos (around November) so we proceeded with the g-tube after an NG failure.

He did not have a fundoplication or the pylorplasty so I can’t give you any insight into those procedures.

The g-tube has been a godsend for us. We can play with foods and textures all the while knowing that he is getting adequate nutrition to fuel his body/brain.

Let me know if you have any questions I can answer. As you are having multiple procedures I can only give insight into the g-tube placement.

April 27, 2006 at 10:08 pm #7059

Anonymous
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I’m just freaking out at this point. I know she really needs
something done now, but surgery seems so severe. She has been on
zantac, reglan, and prevacid in the past with no improvement, currently
she is on reglan and prevacid and it’s not doing any good. The GI
said with as severe as her problems are we could medicate for the rest
of her life but with little help, or do surgery and hopefully ‘cure’
the problems for her…

When they did her ph study she had 310 reflux episodes in 21 hours, 7
lasting longer than 5 min with her longest lasting 26 minutes!!!
So her reflux is very bad. We knew it was bad but just no idea it
was that severe. Also now they have found delayed gastric
emptying that we didn’t see last time they did the UGI! This
showed on both the UGI and emptying study. They gave her 2oz of
pedialite and she was only 32% empty after 90 min, normal is 50% empty
after 90 minutes with solid food. So both problems are bad and
seem to have only gotten worse the older she has gotten. I have
this horrible feeling that if we waited they would just continue to get
worse, but at the same time I hate doing surgery unless we know it is
100% necessary.

The G-tube scares me the most of all though… I am not sure we
can’t do without it. It seems so long term and I am hoping that
once she stops refluxing and feeling better that she will be
fine. But the Dr is worried that with as bad as she is now it
could take a long time to get her up to eating everything and getting
enough calories and fluids and that if we dont tube her that she will
be hosptialized for FTT again soon. I have thought about a NG
tube but she is allergic to adhesive and already has scars on her face
from the ph study, I don’t want to add more. Also I fear she
would just rip out the tube if she could get to it easily… I
know it will help get enough of what she needs in, but it is just
really hard for me to grasp.

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April 28, 2006 at 12:50 am #7069

Anonymous
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rebecca, my daughter has had a fundoplication/hiatal hernia repair. she was failure to thrive and anemic, she was refluxing almost 25% of the time and her esophagus was ulcerated. she had her fundo right before she turned 10 months old. sylvia’s longest reflux episode was 44 min. long while she was sleeping. what was sarah’s percentage of reflux? i think with the pyloroplasty she will be more at risk for dumping syndrome—-but i also think it is a temporary condition that gets better with time. sylvia did not have a g-tube placed because she was a good eater——-before her surgery. we had trouble getting her to eat after her surgery—she would often chew food and then spit it out. she continued to be FTT until she was about 2, but it was not related to her fundo, she had a few other problems that took us a little while to figure out. she has had no complications from her fundo, and she can burp. she does not throw up, though. she is now 2 1/2 and doing wonderfully. i would do the fundo again in a heartbeat. she had obstructive sleep apnea and an inguinal hernia. her hernia was repaired and her tonsils and adenoids removed in october and that is when she turned the corner.

i have 3 children with celiac and one more that we know has the gene, but no active disease at this time. my twins with celiac (almost 15) both also have reflux. i think my 11 year old celiac also has reflux—she has been complaining alot about stuff coming up her throat and her throat burning. we see the ped gi again on june 1—so we will have to discuss her reflux. one of my twins is really underweight and losing instead of gaining—if she loses too much we may be doing a g-tube on her.

if you want to talk more, you can e-mail me any time.

kevheiner@msn.com

April 28, 2006 at 12:09 pm #7079

Anonymous
Inactive

Ah just found where it says that on this paper.. Her total time in reflux is 18.3% which the Dr said is considered high.

I’m really worried at this point. I just want to make sure we are
doing the right thing and that surgery is the best
choice. The thing that has me concerned the most is
that the symptoms have gotten WORSE the older she has gotten…
Wouldn’t she have always had DGE? But in the UGI done at 4 months
her stomach was emptying normally!!! So why did this suddenly
develop?<!–
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April 28, 2006 at 1:00 pm #7083

Anonymous
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Rebecca

Hello there… i see you have posted a few posts but maybe i missed them… i have not been that active lately as just relocated. I have a son, Matthew, who has reflux or had and he probably has an aversion to feeding. He will only take about 30% of the calories that he needs orally and that is on average, so the rest has to be supplemented via a tube. We are still dealing with an NG tube but i have a feeling that we are moving to the Gtube pretty shortly. And to tell you the truth, i think we need the G tube. The NG tube does not really bother him but he pulls it sometimes and in the middle of the night and we have to wake him and put it back because he gets hungry at night but will take no more than 20ml and go back to sleep, and that every 20min… with teh feedings at night, he sleeps (nont much and never past 3.30am these days, but i get some rest!).

The tube has been our life saver. I know it is scary, but it seems that Sarah needs it to survive. This is the case with Matthew. ONe week without and he loses 2 pounds and that is so much right now, and he does ont seem to restart eating on his own. It gives you freedom (does not really help you deal with frustration) but you are able to experiment with food and ALWAYS know that your child is perfectly nourished.

I have heard that UGI are not good for determining DGE. The technicians are not really observing the rate at which the stomach empties but rather that it empties into the right place… so i don’t think (and i may be wrong) that it means it is getting worse?? You may want to ask doctors.

YOU ARE A GOOD MOM and it is so sad to see your child go through this but i can tell you — it has to be the right choice. You need your baby to develop properly and for that, she needs food and if she will not take it, then you need to help her.

I don’t know much about surgery but we would not be having a fundo with Matthew. He does great on the NG tube and is growing, slowly but growing, and so the doctors do not think that we need it.

April 28, 2006 at 2:53 pm #7101

Anonymous
Inactive

Rebecca, I’m so sorry that I don’t have any advice to offer, just lots of sympathy. My daughter is 11 months old, and has silent reflux and a major feeding aversion. We don’t even have our scope until the middle of July. Did Sarah have a scope done? What did it show? What is pyloroplasty?

I just wanted to say that I know your fear, because I have the same fear that ultimately, we may be on the same road. Just know that you will get through this, and you are doing the best you can for your daughter. Please keep us posted and let us know how she is doing. Good luck.

April 28, 2006 at 3:39 pm #7104

Anonymous
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Sarah has not had a scope and I think that is where most of my concerns
come in. She has had an Upper GI, Gastric Emptying study
and PH study. There really are only 2 other reasons (EOS or
Celiac) that I can think of that could cause the symptoms that she has
but both would need to be diagnosed by scoping and biopsying. I
just feel like we haven’t ruled everything out because of not having
this one last test done and if her problems are just reflux and DGE
then surgery is a must, but if it is caused by something else then it
won’t be helped by surgery and we will have done it for no
reason… 🙁

Pyloroplasty is where they cut into they pyloric muscle so the stomach can empty correctly… <!–
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April 28, 2006 at 3:53 pm #7108

Anonymous
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FTT is one of the reasons to do a fundo—–and 18.3% reflux is pretty high. i have heard that they consider surgery somewhere after 10–13%. (can’t remember the numbers for sure) you could insist on an endo before agreeing to surgery (can’t believe they haven’t done one yet!!). you probably already know that testing a child for celiac that young is not going to be very accurate. if you think that eos could be the problem, then definitely insist on the scope first.

April 28, 2006 at 5:41 pm #7119

Anonymous
Inactive

I know that testing for celiac at this age is not so accurate and
really her chances of EOS are slim to none I guess I am just really
scared and the thought of surgery on her has me looking for any
excuse I can to delay the inevitable… :(<!–
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April 28, 2006 at 8:05 pm #7131

Anonymous
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you know what is really weird? i think i was more nervous to have sylvia’s immunizations and her tonsils removed than i was for her to have her fundo done. we have such a good ped surgeon–he also repaired her inguinal hernia. i think i would have a hard time going to any other surgeon if any of my kids needed surgery again. she had a lap fundo and only has 5 tiny little scars. i have a picture posted on the little gerdling website of her surgery, if you are interested.

i had a really long post to you on here, but it sounded so scattered that it was embarrassing, so i deleted most of it.

April 28, 2006 at 8:19 pm #7134

Anonymous
Inactive

Hi Rebecca

I just saw your post now.. Haven’t been on in a long time… My son Jaxon had a fundo done 1 year ago and it went really well, as his reflux was really bad also…I was so happy to know he wouldn’t be in pain anymore.. Meds for him didn’t work either.. He also had a G tube put in Dec/05 due to FTT and aspriation and food aversion.. At first I was really scared at what to expect but not as scared as I was when he would go days with no food or liquids and the battle to just get him to take something… Now we can work on the feeding and know he is getting all the vits and nutrician he needs for being an active 2.5 year old.. He had grown and developed so much in the last few months just from getting adequite nutrician..

Good Luck with everything..

April 28, 2006 at 9:28 pm #7143

Anonymous
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Hi Rebecca~
Samantha was very similar to your child, her reflux just got worse and worse as she got older. We went to the GI and decided on getting the fundo and called the surgeon to schedule our first appt to schedule surgery. The next day she went on a feeding strike and was admitted that evening for dehydration. We were inpatient until after she had her fundo (she had surgery about a week after she was admitted) she was in the hospital a total of I think 11 days. The wonderful thing about the G-tube is you KNOW that you can keep them hydrated. Samantha is to the point now that she only gets her tube feeds at night, during the day she eats by mouth. For the first probably 4 months after surgery, she was mostly tube fed. It just seemed to “click” with her one day that eating did not make her hurt. She had some rough spots after the surgery, she could only handle small feeds at first (the fundo makes the stomach smaller) she did retch some if she got too full and she had quite a bit of post op swelling that would not allow her to take food by mouth (but it did resolve right at 6 weeks like they said it would) The G-tube has made Samantha be no longer FTT and she has been FTT most of her life. She will have her Mic-Key for quite a while more, as she still relies on the night feeds to keep her growing. The nice thing is when I lay her down at night, I do not have to worry about her aspirating on her reflux (which she was doing pre-fundo) She does not constantly act like she is in pain. I do not have to hear that “reflux noise” over and over and over. She is a much happier child now and I know if she does go on a feeding stike, I have a way to keep her from getting dehydrated. After multiple hospitilizations for just that, I am very thankful for the G-tube.

I have a carepage that I keep people up to date on Samantha’s care and progress. In it I posted about the time right before and after her fundo. I actually started it in August of last year when she was diagnosed with cancer and I keep it up. If you want to read about her fundo time it was in October when she had her surgery. It might give you a little insight (keep in mind I was a little frazzled when I wrote the updates) The link is in my signature. Also please feel free to email me if you have anymore ?s as to what to expect, I would be happy to answer any questions.

April 29, 2006 at 9:36 pm #7205

Anonymous
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My daughter had her fundo/g-tube in November 2005 and it has taken the reflux away completely. We were scared of the surgery but it turned out well and it has made life bearable! Good Luck. lalexander2006-4-29 21:38:3
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