Hello again!

Went to the surgeon yesterday(our G.I can't do surgery, only things done by endoscopy) and he thinks that just placing the G-tube won't really help Hannah. He thinks she will still keep vomiting and thinks things won't get that much better. He showed us the results from all of her different scans. The G.I hadn't said much about them except that it confirmed reflux. I guess she was diagnosed with severe reflux across the board, especially her initial reactions when she first starts eating. It immediately comes back up. We had thought it had decreased some, but it was just because she was limiting herself on volume. Now that we are doing the Ng tube feeds she throws up a lot, or coughs, wretches, and has all the other symptoms. I think her G.I was hoping she would outgrow this some, but nothing has changed. We are also now dealing with food allergies. I had researched the fundo. I am not thrilled with the idea, but I guess I kind of agree she needs it. The G.I and her Pediatrician agree that she needs the G-tube, but they are disagreeing about the Fundo. The Ped says yes, the Gi says no. I tend to agree more with the Ped since has seen her more, and he has helped us the most.The G.I ignored things for 2 months and then freaked out about her weight. Our Ped had been trying to get him to act for a while.She is having more and more aversions as time goes by, if the g-tube made things worse with the vomiting I really think we would be worse off.
The other problem is she can't handle over 40ccs at a time right now. With the slow drip feeds anything over 45ccs an hour makes her throw up violently, and bolus feeds are worse. The surgeon is hoping that with the fundo we can start doing more bolus feeds at regular times and hopefully get her back on a normal schedule. Right now she is fed for 15 hours(overnight) She isn't eating much on her own during the day. We are working with the therapist on the food issues, and trying to get her to take things by cup.
He is going to do it laparascopically and he said he will place the button at the same time, we don't have to do the longer tube.
Well thanks for listening. Surgery is next Wednesday November 2nd.
I sure hope things work out okay for her. I hate the thought of having to put her through this, she has already been through so much.

Good luck! Keep us updated! :D

I know that these decisions are sooooo hard to make. Sam's fundo and g-tube placement made a world of difference for him. I hope it helps your little one! Good Luck.

I hope it helps you guys. Looks like the decision is already made. How old is she? Does she have emptying problems?

Good luck! Please let us know how it goes!

I am sorry to hear that you have had to come to this decison. I have a few questions for you at this time. Have they done a gastric emptying scan to determine if she has delayes gastric emptying? Vomiting is not always from reflux but the stomach not emptying right or fast enough. From what you have said about not being able to increase the feeds it sounds like her stomach may not empty right. Also have they told you that the fundo could make this worse,we found this out the hard way with my son. I was also wondering if they spoke about placing a button called a g/j tube which has ports that go into the stomach and one that bypasses teh stomach going into the intestine. The jtube helps feed kids that have problems with gastric emptying. I also was wondering if she has ever been on any motility drungs?

I am so sorry to sound like such a negative person but I have three kids that have had fundos and have dealt with the good and the bad. The funod is not always a cure all and can creat more problems but not all the time that is why I asked you those questions because it should only be a lost resort used when nothing else can work. I do wish you luck.

Melanie

No Mel, I am glad you said it :D I was concerned about emptying too. Good questions!

Oh, wow. I hope all goes smoothly.

Hi Kim -- Wow, big decision. And it's tough that you're getting so many different opinions.

Daniel got a G tube in June, and we also struggled with whether or not he needed a fundo, too. Our ped thought he needed one (based on a photo I showed him of what D threw up into his bib as we were beginning the next meal), and I knew from friends here on the boards that a G tube could even make his reflux worse. We discussed our concerns with the ped GI. Even though I did not want a fundo, I also did not want to make D worse and pretty much need back to back surgeries. We ended up squeezing in a ph probe days before the G tube placement was scheduled. The GI said it would give us more information and therefore we could get a better picture of D's reflux. Based on the results, our GI felt fairly confident (but made no promises) that D would do OK with the G tube only, and we followed his advice. Luckily, things have worked out OK, and D is actually vomiting less. (He was at his absolute worst on the NG tube, I think because he's start to reflux a little, the tube would jiggle and irritate him, and then there'd be no stopping the avalance.)

However, one difference between Hannah and Daniel is that he can handle pretty fast bolus feeds. We set his pump at 400, so he's fed in about 30 minutes, and we're actually looking at getting a pump that can go faster.

Sorry to go on and on. I just wanted to share our experience. I will be keeping you in my thoughts.

Thanks everyone,

She has had a gastric emptying scan. It came back normal. We were surprised because we had all figured that was part of the problem.
She was on erythromycin and reglan. They never helped either.
The g-tube is being done mainly because of the feeding issues.
He didn't say the vomiting would get worse, he said the opposite.
He didn't say anything about a g/J button. I think becase the tests showed normal emptying. I will ask again before surgery to make sure again.
I hate having to make this choice. Her vomiting seems to be from the reflux based on the tests. All of her test showed her reflux was severe. It hits the stomach and immediately comes back up. It also happens later. The radiologist who did her upper G.I wrote he had never seen anyone who refluxed as fast or as violently as her. We didn't know this until the surgeon showed us the paperwork. The G.I had just said it was severe.
I guess at this point we have no idea what else to do. Things just get worse as time goes by. We have been on Zantac, prevacid, prilosec and now Nexium,plus the reglan and erythromycin. We have had the emptying scan, A swallow study,upper G.I and an endoscopy. she has been in and out of the hospital with all the complications. We also had an NJ tube in for a little while. Now we have the NG tube, which helps and hurts at the same time.The other problem is we are Moving in December to another State and we would have to start over with new doctors, probably military doctors. Right now we are able to work with the Children's hospital physicians and surgeons.
she has been throwing up a lot more lately. She had been doing a little better, Now it's 3-5 times a night. and sometimes 2-3 times a day.
I thought the issue with the vomiting whenever she was at 54cc's was emptying issues. I asked her G.I. He said it was mainly because her stomach is so small and it is just too much volume to handle. It seems to work a lot better at 45cc's but not always.
Is there more I should know? I appreciate all input. I hate having to make this choice. :cry: The surgery date is set, but we always have the option to not go through with the Fundo and just do the G-tube.

I need to go. Time to set up her feed and feed my other monsters! Zach is sick so it is always more fun! :roll: :wink:

It really sounds like you've tried pretty much everything, and knowing you'll be starting all over again is frustrating. Poor Hannah. I hope things go well and that Zach feels better soon.

Best wishes with it and keep us posted. Just be prepared for the side effects, its not a cure just created "different problems" such as since your child is a puker she will still try to vomit and won't be able to, wretching, and gas bloat syndrome because she will no longer be able to burp, you don't realize how much burping you do until you can't! Avoid stomach flus like the plague!

Let us know how it goes and ask any questions you have pre and post op, we have been there :)

How old is she?

Thanks

Becky- You snuck in at the same time I posted the last one. Thanks. She is quite the puker. Never had this with any of the others, they were pretty much silent refluxers. I am glad you haven't had too many problems with the G-tube. That is great that he can handle the volume. I saw your other post about the different pump. Good luck!

Hannah is 7 1/2 months old(5 months corrected) She started with the reflux on day 3, and she was only getting about 5ccs at that time while in the NICU. She ended up on a pump then also for slow drips. That lasted a few weeks. She did a little better after that( more silent) but still some vomiting. She has been in the hospital 3 times since because of the reflux.

Shoot she is throwing up. Need to go!

ah poor baby, Eli puked constantly too, it was an awful nightmare :shock:

I really do wish you luck and hope for the best. As I said earlier I dont want to be so negative but I really want you know the truth. It sounds like that you have done everything that you can for your dd and have no other options. I just know from my experience that we were told that the fundo would be the cure all for my kids and it wasnt. For us having the fundo created its own set of problems. I just want you to be prepared that things may not be perferfect after the surgery and there still could be some issues. But then it could be great and everything be perfect which I hope is the case for your dd.

Again I do wish you the best of luck and hope that it is the cure all for your dd. Please keep us posted.

Melanie

Melanie- Thank you. I know you are just looking out for us. I appreciate it. I definitely didn't go into this thinking it was a cure. I read a lot and knew about the complications. I was actually against it for a long time. I just don't know what else to do. If we weren't dealing with the FTT , and new aversions popping up so much I never even would have allowed it. I am just hoping for the best, but we are prepared if it doesn't go well.As prepared as you can be. After 3 preemies I know things can be bad and good and change in an instant.
The laparascopic surgery is "supposed" to be a little better and have less complications. I hope so.
I am also prepared for things to come back. I just hope they aren't as severe if they do.
Thank you!!

Thank you all. I will keep you updated when I can!