Posted By Posting
Jan 06, 2011
kml723
NG tube to G tube
For those of you who have gone from an NG tube to a G tube I just have a few questions: We're looking at going to a g-tube, or PEG tube, in the next week or so. Researching some of the tubes, the Mic-key looks most ideal but our doc is suggesting the more traditional tube or PEG tube and that perhaps in 6 months we could switch to a Mic-key.

Have any of you had any kind of regrets going from a NG to a g-tube. I must say most of the posts I've seen folks are pretty happy with the g-tube. I just wonder if it becomes a bit cumbersome?? My baby is 6 months and will soon be crawling and I wonder if it gets in the way of that?? Also, he LOVES going into his jumper and I just worry that all that tubing at the site will interfere.

Any thoughts/insights/experiences would sure be appreciated!

Jan 06, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Our only regret was NOT doing it sooner, we fought for it as our old horrible GI didn't want to do it. We got a 2nd opinion.

As far as what type of tube, most hospitals have their favorite ways of doing it and what they place is what you will get. Our hospital does straight MicKey insertions. Meaning, Jedd came out a surgery sporting his new G tube. It was nice.

The drawbacks of the MicKey are that it has a balloon so it can pop although we never had one do it.

The drawback of doing a straight insertion is the tract takes longer to heal. Therefore causing more granulation tissue (GT) to grow. We did have this issue and there are things you can do to help make it better.

Don't be surprised it you end up on continuous feedings for a bit afterwards. It took Jedd about a full 4 weeks to do much better with feedings.

When you are in the hospital for placement insist on REALLY good pain control. I had to ASK for morphine in the recovery area even though Jedd was screaming in pain when I arrived and while I was holding him.......they were trying to make it through with just tylenol...CRAZY right???

They gave him a 1/2 dose, that dulled it a bit, I quickly asked for the other half and then he fell into a deep sleep for about 3 hours and woke up happy!!! We controlled pain with tylenol alone. I still had to wake up every 4 hours to ask them to give him the meds though. So just be on the ball.

Also, don't allow them to push G feeds to fast. They are going to insists that boluses are tolerated but that's not realistic. Let them know you are OK with going on a continuos feed and they should be OK with it. They will only be keeping you overnight anyways.

As far as the tube stopping you from doing regular activites, Jedd did everything and then some!!!! It really should be bad at all. He swam, played at the mall, and parks, all sorts of stuff. We just treated him normal!!!

Since you are NG feeding you will just use the same medical stuff you have always had each month but now you will need some BD Slip Tip syringes. With those specific ones you can give meds directly INTO a MicKey G button!!! It's great and every nurse I talked to did not know that fact!!!

Also as far as extensons for feedings, if you are doing night feeds and don't need to give meds at night, you will want a Right Angle Secure Lok Bolus Extension. That will keep you from "feeding the bed" instead of your child. They are extremely tight and we NEVER fed the bed again after starting them.

I liked them soo much that even when Jedd needed meds at night, I would just upzip him and stop the pump and give it in his button and then reattach him and restart the pump. MUCH easier!!!

Let me know if you have any other ?? You will not regret it at all, I promise. If anything, you will wish you did it sooner!!!

Jan 07, 2011
kml723
I guess my biggest concern is that with the PEG there's an additional 10 inches or so of tubing that is always present, whether or not you're doing a feed. I know it can be wrapped under a mesh dressing but can still pop out and I worry that this tubing would hinder activities. While we know we're getting and needing a g-tube I also don't want to think it's going to be much better and then find out that the grass isn't always greener on the other side of the fence, you know what I mean? Anything you just hated about the g-tube?
Jan 08, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Will they place a PEG tube though, not all hospitals do. Have you had your pre op yet, they will be able to tell you what they will do.

As far as the PEG goes, it's a pain in the butt I've heard. But, you will only have it for a short time and then get your button. I'd make sure they give something for pain when they take it out as most of the time they just yank them....not always but some places do. Some will take them back to the O.R. to take them out it all depends on what type of device is on the inside keeping it in.

If it's a disk, then it's an O.R. trip it it is "mushroom" shaped, then they yank them.

Seriously they do just yank them. It's unpleasant to say the least. They can give a dose of versed before and some pain meds for after to help, I'd insist on it actually and per firm about it if they are going to do the yank method.

Really, the only thing that was a pain was the fact that MicKey tubes are notorious for blowing the anti reflux valve. I never even knew they had such a valve as Jedd blew his within a short short time and upon opening his button for the FIRST time, belly juices would come out. I just though ALL tubes were that way. NOPE not true. The valve is supposed to stop that from happening.

We got really fast at connecting and unconnecting him though. and that helped as all the extra moisture can cause GT to grow.

But really, after NG tubing for 8.5 months, the G tube was a DREAM. We loved it.

I have been told that Kimberly Clark has worked on their buttons and they are not supposed to have the leaking issues anymore. But as long as kids are having serious acid issues, that valve will get worn down and it will leak. Just what I've heard.

Some people report that reflux can flare after surgery but taking feeds nice and slow will help. Remember, the stomach wall is getting moved slightly and connected up to the tube site so it can cause issues for a bit.

After about 12 weeks Jedd was fine. All the issues we were seeing at that point were ones we were seeing prior to tube placement.

The only difference we saw was that before surgery with an NG we could do 40CCs an hour at night and afterwards we never got above 28CCs an hour. But after a while, his weight was fine we were told to stop trying and to leave it be. So, he probably could have gone higher.

I can put you in contact with many other tube feeders if you want their opinions as well....I have known hundreds in the past and at least that many now.....

Jedd was all boy and his button only came out twice. Once he yanked it at nap and threw it across the room. Didn't complain and when we woke him with NO tube, we couldnt' get it back in. The E.R. had NO idea what to do with him, got a foley in and we saw suregery's NP the next day. We stretched his stoma and got a new tube in.

The second time Daddy was wresting hard with him at a mall play area, the tube popped out and Daddy said, I think this is Jedd's....LOL

I pulled out a 10CC syringe, deflated the balloon and popped it back in and filled it back up. After apologizing to the parents that I was getting ready to do something really weird, sorry!!! LOL

You should have seen their faces. ......priceless I tell ya!!!

Other than that, it didn't come out at all.

Jan 08, 2011
kml723
Thanks Jessica. I would love to be able to get perspectives from other parents if possible. the hospital is fairly insistive that his first tube will be a PEG then after 6 months he can have a MicKey. I know there are exceptions to this rule where they may do Mickey's first but I don't know what those are. We're in a bit of a fix as Liam's vomiting has returned after not having any episodes for most of December. It's been a gradual return and now he had 4 vomits in 1 hour this am. I know the PEG won't help with that but if we're still fighting the vomiting, I'd rather the most manageable tube possible as we have enough on our plates at the moment.
Jan 08, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
WOW 6 months with a PEG tube, that's a long time....I've not heard of one being in place for that long of a time, must be a really conservative hospital placing it. I've just never heard of one being in place that long.

As far as vomiting returning, has he gained weight recently, sometimes that can cause meds to need to be adjusted and once they get upped, the vomiting subsides.

email me at: onion95@gmail.com and I can help you find the other parents.

Jan 08, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
WOW 6 months with a PEG tube, that's a long time....I've not heard of one being in place for that long of a time, must be a really conservative hospital placing it. I've just never heard of one being in place that long.

As far as vomiting returning, has he gained weight recently, sometimes that can cause meds to need to be adjusted and once they get upped, the vomiting subsides.

email me at: onion95@gmail.com and I can help you find the other parents.

Check with your
doctor first!