Hello all. It seems I've come to the right place for great advice. Finally, some people who understand what this is like!

I have b/g twins that were born on 3/15/05. They were 2 months premature due to my son being IUGR. He weighed 2 lbs 3 ounces at birth. His sister was 3 lbs 12 ounces. Our daugter is doing great. Our son has been home for a total of 3 weeks his entire life! He spent 2 months in the NICU, came home for two weeks and had a choking incident in which I had to perform CPR. He went into the PICU, remained there for 6 weeks. He came home for a week, had another choking incident--thank God this time we had a nurse here and she was able to get him suctioned out and breathing w/o having to do CPR. He went back to the PICU and was there for 3 days. Came home for 2 days, and then started spitting up green mucus...he's back in the PICU, and is supposed to come home in the next day or so.

To make a LONG story short, he has severe GERD. He has had an upper GI, two swallow studies, and endoscopy, etc. At 4-1/2 months, he's weighing in at 6 lbs 8 ounces. Which is great if you consider where he started...but the doctors are all recommending a G-tube and fundo. He currently has an NJ tube, but it is causing mucus which causes choking incidents.

He is a mystery, because when he initially left the NICU, he ate all of his meals by mouth. Then he had his choking incident...and now he flatly refuses to eat. He will sometimes take up to 15 ccs by mouth, but usually it's about 3-8. More often than not, he loses it again--even being on Reglan and Prevacid.

I really wanted to avoid the G-tube/fundo, but it seems like we are getting closer and closer to that point. His GI, pediatrician and pulmonologist all agree that's what we need to do. Only one of the doctors (a female) and a PA (also female) think we should wait it out and see if he will start to eat better once he's bigger (4 kilos or so). Our problem with waiting it out is that we feel like we are sitting on a time bomb waiting for him to choke again. Our house looks like a mini PICU...suction machine, O2, etc.

Any advice from those who have had to go the G-tube/fundo route, or those who stuck it out with good results?

Hi Victoria. I don't have experience with the fundo. I responded to your other post.

My son just had a fundo with g-tube placement. He is 7 months old. He is still in the hospital, his recovery has been slow. the surgery was a last resort. He has been aspirating so he needs to be tube fed and after about a week with the NG tube, I knew he would need the G-tube because he hated it and pulled it out every chance he got. It was a pain and I could not imagine using a NG tube for any length of time. He has not vomited once since the surgery. His feeds are being advanced very slowly at this time. so far I do not have any regrets about the surgery--Sam handled it much better than I did, I was a mess, but I feel it needed to be done. I will post updates as he progresses

Hello,

My son had the fundo 5 months ago, he is going to be 3 this month, he has done great with it and has vomited a few times since the surgery which may actually be a good or bad thing, we are in the process of rechecking, he is still intact fundowise and his surgeon was hoping for this outcome. But, overall, it has made a huge difference for the better, I am very thankful we did it, he is a different child, no aspirating since of course which was causing alot of problems for my son like lung, ears, throat, sinus. Hope it goes well for you and let us know of any Qs you have as those of us who have gone for the fundo have had it done recently and can help. (((hugs))) you guys have been through alot. I am just glad you have beeen diagnosed early and are getting the help you need. My son wasnt diagnosed until a year and by then his immune system was shot.

Amanda and Erin,

Thank you so much for your advice re: fundos/g-tube. This is such a hard decision to make. I'm constantly second guessing myself. Since Tucker is doing better (vomitting, but not choking) it almost makes it harder to decide to go for the surgery. But, I also feel like we can't wait around to see if he's going to choke again. These medical issues make a new mother doubly neurotic!!! :evil:


How long ago was Sam's surgery? I'm wondering what the recuperation period is like.

Thanks again, you guys are really helping me with these difficult decisions.

Sam's surgery was just over a week ago. The major thing that has slowed his recovery is his sensitivity to pain meds--they relax him a bit too much! He stopped breathing one night and needed to be intubated until the meds wore off. He is fine now, but it was scary. Luckily he is in a great hospital and the care has been fantastic. I am a nurse so I notice everything, and so far I have no complaints--except for the fact he is not home yet!

This is still new for us, so I do not have too much to add. Just make sure you are comfortable with all your MD's. Talk to the anesthesiologist about pain control. sam had a epidural for pain control for the first 3 days which worked great. He did not have a problem until they put narcoticts in his g-tube. Now a week post op all he needs is tylenol to keep him comfortable--as a matter of fact, I do not think he even needed any tylenol today.

Good Luck, I will write again when I have a chance--it is hard to e-mail when I am living at the hospital most of the time, maybe my next reply will be to tell you we are home!

Sam's surgery was just over a week ago. The major thing that has slowed his recovery is his sensitivity to pain meds--they relax him a bit too much! He stopped breathing one night and needed to be intubated until the meds wore off. He is fine now, but it was scary. Luckily he is in a great hospital and the care has been fantastic. I am a nurse so I notice everything, and so far I have no complaints--except for the fact he is not home yet!

This is still new for us, so I do not have too much to add. Just make sure you are comfortable with all your MD's. Talk to the anesthesiologist about pain control. sam had a epidural for pain control for the first 3 days which worked great. He did not have a problem until they put narcoticts in his g-tube. Now a week post op all he needs is tylenol to keep him comfortable--as a matter of fact, I do not think he even needed any tylenol today.

Good Luck, I will write again when I have a chance--it is hard to e-mail when I am living at the hospital most of the time, maybe my next reply will be to tell you we are home!