g tube and/or nissen fundo mommas

[Ste9]

For those of you with a child who had a g-tube placed and/or nissen fundo done how long did it take for recovery? How long did it take to manage your childs pain? for your child to get back to normal activity levels?

What kind of feeds do you do? How did they decide what kind of feeds to do? Do you do feeds at night or only during the day?

I'm just wondering if anyone can give me personal experience so I know what to expect.

[Idony]

i know im late on this, but just incase your still looking for info,

my dd got a gtube in april (after 11 months of ng HE!!). she had a gtube and muscle biopsy done at the same time (along with a central line placment because no one could get an iv in her). she was in the picu for 24 hours afterward, then she was in the hospital for 5 days. she couldnt sit up the first day, couldnt stand for 2-3 days and finally was able to walk again, even though she was very wobbly, in about 4-5 days.

she had morphine for pain for the first 2 days, then only a few doses in the days following, along with tylenol and motrin. when we got home she was still on the tylenol and motrin but she was reletivly pain free (for her). it is a pretty painful procedure (imagine getting your belly button peirced times like 100) and they have to move the entire stomach plus inflate it with gas, which is painful by itself. add a fundo in there and its not easy. ive talked to a lot of tubie mommies and doctors seem to think its not that painful, if your little one needs something for the pain make sure they get it!

for my dd her feeds where already pretty ironed out because we had an ng first. she gets pedialyte/smartwater/water at night to keep her hydrated and keep her blood sugar up (if we give her formula she will NOT sleep its just the way she is).

during the day if she isnt eating well we do one of 2 things, either suppliment with formula or blend up whatever shes eating and put the rest through the tube. she also gets no less then 3 water boluses during the day. when she is sick though she is typically on continuous feeds of formula through the day and pedialyte at night until shes better.

i dont know why your little one is getting a tube, but a lot of this probably wont be as bad for your little one if its just for reflux or something less complex (not that reflux isnt bad, it is, my dd has it too, i know just how terrible it can be) my dd has a metabolic disease so she has a lot of other problems. the surgery is usualy pretty simple and they go home in a day or two.

if you need anything you can pm me, weve been there.

[Merri]

My dd had her g tube placed when she was 11 months old. It's been a few years and a few procedures ago, so I'll try to remember everything. (She does still have her tube, though.) She doesn't have a Nissen, so her recovery time was pretty quick. She was in PICU for a few hours afterward, then moved to a regular room. We stayed inpatient for about 5 days, but that was due to her respiratory issues, not the actual procedure. Definitely agree about pushing for enough pain meds, they were pretty stingy with them and she needed more.
She was pretty close to normal activity by the time we got home, but she was young so she didn't walk or run yet. She recovered faster than I did, lol!
They will set you up with a DME company to supply you with the things you need before you go home, but that can be done pretty quickly. We had to go over how to clean the stoma with a nurse before we left, and they told us what to do if the tube came out. I'm thinking we did our actual first tube change at the surgeon's office during the followup appointment. That part is a little sketchy to me, I believe dh changed the tube and not me at that appointment.
The feeding schedule varies greatly from child to child, and really depends on why your little one needs the tube. My daughter doesn't eat or drink at all, so she is hooked up almost all day. If you are just supplementing to get more calories, it can be done at night while your child is sleeping, so they can be free during the day. Or you can do bolus feeds during the day, at different times throughout the day. Zevex brand feeding pumps are really great to ask for if you will need to drag the pump around during the day, they are small and have a pretty decent battery life.
Getting a fundoplication as well as a tube is quite different, and the recovery time can be very different as well. After a fundoplication there can be lots of retching and gagging, and more difficulty finding a tolerable feeding schedule. Starting feedings very slowly would be advisable, sometimes the doctors get a little ahead of themselves wanting to push calories before a child can tolerate it. Make sure they don't do that with your little one.
Hope the placement goes well, if you have any questions you can pm me, we've been doing this for 5 years now.

[Ste9]

Thanks so much ladies for your responses. He had his tube placed on October 14th so I didn't see these before it happened but now know where I can go to get some info from mommas who have been there.

Makkiah is 8 years old and has severe gastroparesis, delayed gastric empty, malabsorption, dysmotility as well as multiple airway issues. He was started on formula in April 09 due to FTT and chronic abdominal pain.

His surgery lasted just over 3 hours and was an open procedure. He spent 2 days in the PICU and then transferred to the peds ward where we stayed for 5 more days. He was in a LOT of pain afterwards and thankfully we have an awesome team of doctors and nurses who agreed that he didn't need to be in pain after all that he'd been through. Post op he was given fentynyl, morphine, versed and toradol. He was then on toradol for 3 days and morphine as needed. Even moving him in the bed hurt him pretty bad so the pain meds were definitely needed.

His feeds were started extremely slow because his stomach doesn't work right. The first day they left it open to drain, the 2nd day they clamped it and he was allowed to suck on some ice chips a few times but his tube had to be opened when he did. The third day they started with some pedialyte and then very small amounts of formula. His feeds are still not were the goal is but he doesn't do volume well so we are working on it. He's not allowed to retch so I was taught how to decompress him if he starts to do it. It only happens when we try to up his feeds so that makes the progress slow but he's still getting more than he was so it's progress.

Right now he gets 10 hours of continous feeds overnight at 100ml an hour then 4 bolus feeds during the day of 150mls. We have the zevex entralite pump and love it. It's nice that it's small and we can take it with us easily.

We also already experienced a tube "malfunction" when the balloon ruptured and had to be changed. Thankfully the sutures were still holding it in place so it didn't come out but unfortunately the sutures were still in place so it was still a very fresh placement. The surgeon ended up taking him back to the PICU, sedated him, FINALLY got a new tube in and it ruptured as well! 3rd one went in a little easier but he ended staying in the hospital again to make sure that everything was working right since he had to manipulate things so much to get the tube back in and we are an hour from the hospital. I'm really hoping that this one stays put until things have healed better as that was pretty traumatic.

He has an appt in Dec to get measured for his mic-key so that will be a new experience also. Any experience with that?

[Idony]

Im glad he did (reletivly) well with everything. I am so glad to hear he had good doctors/nurses who gave him adaquate pain control and started feeds slowly. Those two things are usualy the two things that set the recovery back.

Have any of his doctors ever talked aobut a GJ tube? Thats the kind of tube ive seen used most for dysmotility/gastroperisis. It starts in the stomach but also has an extra part that extends into the small intestine to feed past the stomach so everything doesnt stay in the stomach for hours/days.

Also there is a product called a "corpak ferral valve bag" it hooks up to the tube and has a bag and small valve on the end so gas/air can escape but food/stomach contents cant get out. You can even connect the pumpset to it and feed while its connected. There is also the "super ferral valve bag" which has wider tubing to help get even more air our easier. We use these a lot when DD is pukey or extra gassy.

If the balloon keeps popping there are quite a few other kinds you can try when the stoma is healed. Theres the AMT mini one, it has a balloon but ive heard it works better for some kids. There the coraflo cubby, the nutriport, the entrastar, im pretty sure all those are balloon buttons. Theres also the bard which isnt a balloon button so it cant pop, but it also doesnt have locking extentions. Then theres the AMT non-balloon, which doesnt have a balloon but im pretty sure DOES have locking extentions. Theres a lot of options out there for you to figure out what will work best for him. The only problem with the NON-balloons is that they cant be changed at home and they are more painful to change, but they can go a year or more before needing to be changed and they are much lower profile.

If he has a balloon tube getting measured for the mickey shouldnt be TOO bad, they will just take the old tube out put in a thin tube with lots of markings on it then slid the end down to see where it is. Find the appropriate size button and put it in. Its more tramatizing if they have a non-balloon tube because they have to, litterally, yank the tube out.

Like i said before, if you need anything just pm me. If you even just need someone to talk to, if you have YIM, MSN messenger, or Skype you can add me to any of those, just pm me and ill give you my addy. I know how difficult the transition to tube feeding can be.