Thursday, July 26, 2007

Ben


This is our friend Ben. Ben is a really cool little guy who was born at the same hospital as Holland and Eden, and spent time in the NICU. I met his parents through the NICU Family Advisory Board, and have really enjoyed getting to know their family.

Unfortunately, Ben has recently been diagnosed with severe reflux. He is scheduled to go in for the fundoplication surgery next Wednesday and his mom, my friend Shannon, is understandably struggling with the impossible decision to go ahead with it.

Ben is four, and has been hospitalized several times with pneumonia. Just this past spring that they found out that the pneumonia was being caused by aspiration of stomach contents. Other than that, Ben does not show any outward symptoms of reflux. He eats pretty well and is growing, and doesn't complain at all of pain. He also has not been hospitalized with pneumonia since last fall (will be a year in November). However, Ben's pulmonologist highly recommends the surgery because the results of Ben's pH probe were "the worst" he has "ever seen." It seems like Shannon might be in the sticky place where the risks of doing the surgery are less than NOT doing it.

Soooo...I know a lot of my blog readers have experience with the fundo surgery itself, and with the outcome. Will some of you please share your story to help my friend? How did the surgery go? Did it work to fix the problem? Did you find the side effects manageable? Overall, did you feel like it was a good decision and one you would make again? I know Ben's mom Shannon would really appreciate some input from those of you who have been there.

13 comments:

Lisa M. said...

I am sorry that Ben has to struggle with this. I've found that sever reflux is the cause of a great many issues, and it seems so crazy, to have such SLOW diagnoses, but I see it all the time.

What beautiful pictures.

My son, has been diagnosed with moderate but stable reflux, we've had several tests, and the medications prescribed, seem to be helping him.

He has other issues ,though, that we don't have answers too, and the struggle to know what to do, is sometimes overwhelming. It is incredibly difficult to know which direction to take, and choosing treatments, that might fix something but cause an issue somewhere else.

I feel for families that struggle.

It is truly the hardest thing I've ever done.

I appreciate your writings.

Thank you-

Emily said...

At 17mos we've now had our Nissen Fundoplication done 2x. I can definitely see how it has been beneficial for us. It's brought our oxygen needs down tremendously and aided in the quick healing of her lungs. When I Nissen came undone in January it was obvious right away from the dramatic increase in oxygen needs even before the spitting up was noticeable.

I can definitely recognize however that there are unfortunately many downfalls to the surgery. It seems that there are two groups of people. One group feels that the Nissen is actually a fix for reflux and aspiration while the other recognizes that this isn't the case necessarily.

For us our experience has been that while it helps a great deal, we still have to remain on a potent reflux medication in combination with the Nissen. This has worked well for us and hopefully over time we will wean off of the medication.

Another problem we have had is with severe retching. This is not uncommon when you have a nissen but unfortunately Dakota's retching has been much worse than normal. We were able to start her on a medication called Levsin and that helped a great deal with the problem and at this point we seem to have stopped retching, thankfully.

I would do it again. As much as I dislike the fact that I feel it destroyed our eating, it has been life saving and at this point if it comes undone again we'll be right back in the OR having it re-done.

Anonymous said...

I've been enjoying reading about your precious girls for awhile now but have never commented before. Not sure why, but just haven't until now.

My son had the nissen fundoplication (he basically had no esophogael sphincter muscle) done 20 (he's now 21) years ago due to medical issues that cropped up shortly after he was born. He was diagnosed with malignant testicular cancer at 8 weeks old, and had severe reflux which labeled him as "failure to thrive". After dealing with several doctors and meds to control the reflux (to no avail) which was horribly scarring his esophogus one doctor at Georgetown Hospital wanted to take the easy route and insert a feeding tube for life, which I strongly struggled with. A couple days before surgery, I had him moved from Georgetown to Children's Hospital in Washington, DC where an alternate treatment was immediately found and that being the fundoplication. It's a tough decision but the side affects to the surgery were much more mild (long term - no tube) than going with the feeding tube for life. The only thing we had difficulties with were making sure solid foods were chewed well and to this day our son can not vomit. At first I was concerned with that when he would get sick but the body has other ways of ridding itself of stomach viruses.

I wish the best for Ben and his family as they struggle with wondering if this is the best option for him. I have to say personally for us, it was the best and only option as far as I could see and our son starting thriving immediately after. Other than half circle scar across his belly at the base of his rib cage, he's the picture of perfect health.

Wishing the best for your friends!

J

Angela said...

Hi Billy, I don't have any words of experience with a fundo, but I wanted to tell Shannon Ben is soooo CUTE!!! I love the pics!

dcj said...

It is a difficult decision to make. It's hard to weigh the pros and cons because for us, neither side was a clear indicator. Julia definitely had reflux but she wasn't tested for the severity. We were told it is common for the gtube to worsen reflux so I guess that was the deciding factor for us. The fundo was performed during the placement of the button.

Julia does retch but it has gotten better. There are times she'll retch a couple of times after a feed and there are times when she doesn't at all. Our GI specialist told us the retching would subside as Julia grew and the Nissen loosened some. He's right.

There are still signs of reflux but nothing severe enough to require meds. Occasionally I'll hear her cough during a feed. Overall, I think we made the right decision. It wasn't an easy one but we eliminated the risk of Julia needing two surgeries.

Carrie

Anonymous said...

Thank you Billie for opening this door and helping me though this often rocky sea of parenting.

Thank you to everyone who has posted a comment regarding Ben. Every decision we make for him is a struggle but this one has been a lot harder for me. All of our docs have assured us that this is the best thing we can do for him based on his CP and test results. I wish that was enough to ease my mind but I have been plagued with the "what if's". We have been told a lot of things over the years ("He'll never hold his head up." etc.) that I had to disregard and follow my gut so I am finding this choice difficult. I value all of your insight and appreciate the well wishes.

Shannon

abby said...

So far, at least, we have no experience with fundoplication, but we know all about reflux and our hearts go out to Ben and Shannon. Ben is beautiful (handsome, I guess, is more appropriate for a boy!)

Shannon said...

Hi Billie and Shannon,

This topic is right up my alley. I have belonged to the parent reflux group now for a long time and it has helped me so much. Ashton has severe reflux to the point where it was causing life threatening events. (The last one being June 13th of this year). The docs have been trying to get me to do a fundo now for a long time however after all of my research I just won't do it.

Fundos have been done now since the 50s and it is NOT a cure. I had one mother tell me that if I was willing to trade the issues I have now for possibly more than to do it.

MOST kids that have fundos also have a g tube placed. Thus the g tube causes worse reflux. MOST kids also still require meds for the reflux after a fundo.

Ashton has a gj tube and has now for 17 months. He STILL has severe reflux.

Retching...another issue. I saw a video of a child with reflux who had a fundo done. It was on him retching. DEFINITELY something that I would not want Ashton to go through.

Fundos can be too loose, too tight and come undone. Each of these has there own issues.

I was interested that you told me that Ben doesn't complain of pain. Ashton also seems unbothered by his reflux. That was my other reason for not doing a fundo.

They also say that kids with neurological issues also have a worse time with the fundo than children who don't. They are not sure why but CP kids have a harder time.

So many docs are right up for the fundo. I however met one who said that he USED to do them and would never do another again.

Make sure as well before a fundo that the child has a ph probe study, tests for other diseases that can cause reflux, a feeding study, upper GI, swallow study, DGE study....

I know how tough this decision is and it really is the toughest thing to deal with. I feel for anyone that has to toss the fundo decision around. I have been now for just over a year.

Shannon said...

Was also curious as to if Ben is on meds? If so what and how much?

Anonymous said...

Happy Birthday Girls!
I can't believe it...3 already!?!?
Can't wait to see Bday pics.
Love, Amy

Anonymous said...

i do not know much about the fundo but know more than i would like about acid reflux. makenna, my granddaughter has severe acid reflux along with floppy airways. only symtom of the acid reflux was the breathing problems, which landed her in childrens hosp in pittsburgh twice within a year. good luck to ben and his family this is a difficult decision.

Kellie said...

I know that I am late at this but I've been on vacation (sorry Billie)...

Eli had his fundo at 11.5 months. We had tried every option prior to his surgery and ended up having to go ahead with the Nissen anyway. Eli's reflux was severe and he aspirated. Unfortunately Eli also aspirates while swallowing so he gets a double whammy to his lungs. We went the medication route and Eli also had to be on feeds thickened to over honey consistancy (due to his dysphagia). He was still refluxing and aspirating into his lungs so we tried to avoid a fund at 8 months and had a GJ tube placed. His pulmo and GI hoped that with bypassing his stomach for feeds and going straight into his jejunum, we could avoid him aspirating while refluxing. Unfortunately this didn't work and Eli continued to reflux stomach acid as well as solid foods right back into his lungs (even though all of his formula feeds were going through his GJ tube).

So...we were told that we had a decision to make, Eli's lungs heading towards irreversable lung damage that would necessitate a transplant down the road, or the Nissen which we had fought so hard to avoid. Eli had the Nissen and it truly saved his life. He was severe FTT for 6 months post-op (for reasons not linked to the fundo) but his lungs are so much healthier and he is a totally different kid.

Kids getting fundos should always have it as an absolute LAST resort of treatment. It is a life changing operation and their bodies do not ever go back to the way they were prior. Neurologically comprimised children (i.e. CP, seizures, PVL, etc) tend to due worse with fundos and have more retching as a side effect post-op. Every kid that is getting a fundo should have a pH probe study, a video swallow study, an upper GI, and a gastric emptying scan BEFORE going into surgery. You do not want a child with delayed gastric emptying to have a fundo operation. This will cause severe problems post-op with retching and pain. Children who are having the fundo for GERD with aspiration need to have a bronch done with a wash to show the lungs have evidence of aspiration. This will help *prove* the need for the extremity of a fundo (and help mommy and daddy feel better that it was the ABSOLUTE only thing you could do).

If you have any questions, feel free to e-mail me or pop over to my blog. I hope that the Nissen works out for Ben and you guys can finally stop having aspiration pnemonias!

Shelly Baller said...

Ok girly, talk to me. what is going on.. why dop you blame yourself . If you want to blame yourself for anything... just balme yourself for having 2 wonderful little girls that have wonderful parents who love them and look at them they are doing great. That is because of you and John.....By the why this is Shelly. Keep your head up. Anytime you need help let me know.