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Acid Reflux / GERD Message Board

Acid Reflux / GERD Board Index

Hi. My daughter will be five next weekend, and has suffered from severe reflux problems since she was about two months old.
She was born term, perfectly healthy. At two months of age, she began to aspirate, and would stiffen up, stop breathing, and turn purple. It was discovered that she had acid reflux, and was put on Xatac and Prevacid. A 24 hour Ph study was done, which showed that she had severe type 1 reflux, causing life threatening events. A week after she started the meds, she had another episode, and then another. Two days later, she was in surgery, having a laproscopic Nissen Fundoplication done. We were told that this would be a one time surgery, and that the only thing that we would have to watch out for, is her unability to vomit if she were to get sick.
All was good, and she was released from the hospital a week later. This was August of 2002.
Almost exactly a year later, she began to vomit everytime she ate or drank. Not a good thing, when we were told that she wouldn't be able to do this. It took us nearly a month to convince the doctors that something was wrong, that she wasn't just sick, and to get some tests done. An Upper GI was done, and this showed that her fundoplication had ruptured, and her stomach had herniated into her chest. The next day, a redo fundoplication was done. Four days later, we attempted to orally give her juice, but it came right back up. Two days later, the same thing. Another upper GI was done, and it showed that her esophagus was blocked, probably due to swelling, right at the surgery site. We were told that this was the "peak" swelling time from the surgery, so they continued to tube feed her, and a week later, did another upper GI. Same thing--still blocked. She was then sent home with the NG tube in place, and had to be tube fed every hour and a half, around the clock. This was August of 2003. Shortly after she was discharged, we were told by a radiologist, that the swelling was gone, but the fundoplication was wrapped too tightly.
In September of 2003, things were still the same, so a dilation procedure was done, to try and stretch the wrap. Another was done in October, and another in November. In January, the fundoplication ruptured again. Another emergency surgery was done, and again, she still was not tollerating liquids or solids.
At this time, we lived in Las Vegas, and their wasn't any other surgeons, other than the original surgeons partners. So, we took her to UCLA. Other tests were done, and once again, we were told that her wrap was done too tightly again, and she would require yet another surgery, but the surgeon there wasn't willing to do it, since at the time, it was still intact.
We then took her to Anchorage, AK to see a specialty pediatric surgeon. After going through all of her records, he agreed that another surgery would be needed, but refused to do another fundoplication, because of all the scar-tissue, and damage that had already been done. He recommended a complete esophageal which we researched, and then denied.
A few months later, the wrap ruptured again, and again, her stomach was pushed into her chest. We then found an amazing surgeon in UT. While this surgery was the most risky, took the longest, and was very hard to recover, she finally did recover better than she had with any of the previous surgeries. Up until this past week, she has been doing well.
This past weekend, she was hospitalized for violent retching, gagging, and again vomitting...despite not having any other symptoms--including nausea. An upper GI was done, and it showed that her stomach is quite a bit enlarged, where-as it should be much, much smaller. Plus, she is refluxing pretty bad. Not good considering how many Anti-reflux surgeries she's had. We've been told that more than likely, that the last fundoplication would probably be the last one, because, again, the scar tissue, and damage already done. We've also been told that a bypass would probably be our next step at this point.
My daughter isn't even five years old yet. I can't imagine her going through anymore surgeries, let alone an esophageal bypass. But I guess anything to keep her pain free-and surviving.
So, my question is--Has anyone out there had this type of issues with a fundoplication, and has anyone had an esophageal bypass?? If you've had the esophageal bypass, was it helpful? How long was the surgery, and how was the recovery? Can you live a normal life with the bypass? Is there any other options out there besides a bypass?? I'm desperately looking for some answers, before we are hit with this decision. Any suggestions?
Thank you, and sorry for being so drawn out.

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