g tube newbie

[mekat]

Nothing should change. My son couldn't handle baby wearing but he had significant pain from uncontrolled reflux and having the his mid section compressed even slightly worsened the pain. I highly doubt his discomfort was from his g-tube.

I would ask for a Rx and have on hand some trimiamcinolone actonide ointment .025% cream basically prescription topical steroid cream. It helps with granulation tissue which will probably be a problem the first few months while the site is healing. Apply as soon as you see signs of granulation tissue or site irritation.

Do not let granulation tissue fully form because eventually you get to the point of no return where they have to chemically burn the unhealthy tissue off with silver nitrate. If there is any seepage around the site skip disposable g-tube pads and go straight to cloth pads. Cloth keeps peristomal skin much healthier and drier. Once the site heals and reflux is under control g-tube sites are very low maintenance.

Our experience with the surgery was that it was a breeze. IMO the most stressful part is the learning curve and keeping the peristomal skin healthy while the site is healing.

[luvsviola]

Hugs mama!

My son did some cloth. There is no medical reason you can't do it. For me, getting him in and out of his backpack to change diapers was a pain, and so we switched to sposies so we could go longer between changes.

Babywearing did not work for him. I was not willing to put any pressure on his tube...granulation tissue can develop easily, so we keep pressure away from it as much as possible.

I agree with mekat...there is a significant learning curve. For the first 2 months, I wondered if we had made the right choice. He was on an NG for 3 months before. 2 years later, I know we did.

Ask your homecare provider for AMT clamps. They are silicone connectors designed to keep the extension from coming out of the feed bag. While we don't have that issue, we use them for a different purpose. Get a diaper pin, and pin the extension tube to your child's pants. It helps keep things from getting yanked on. DFS has never had his tube yanked out of his belly with it pinned properly. This is a pic of it pinned to a fleece sleeper.




You want 12" extensions. Don't let them give you the 24" ones. They are too long. AMT makes extensions with no med port that fit both the AMT and Mic-key ports. Med ports are evil. They pop open in the middle of the night and make you feed the bed. A 3 mL syringe fits perfectly in the AMT extensions.

Insist on a pump. The Zevex Infinity is awesome. They wanted to bolus DFS. OMG, what a pain. The pump was a lifesaver.

I wouldn't go crazy buying G-tube pads til you heal. DFS has never needed them. The less you mess with the stoma, the better. Every once in awhile, we put a clean split gauze on there. But generally, we put nothing on.

The best part of a tube...you NEVER have to give meds by mouth again!

[medireh09]

Cloth diapers: My son has been in cloth his entire life. He has a GJ tube. He wears woolies in winter and we have never had an issue. I just make sure to keep the rise low enough that nothing rubs the tube, but I think the same would be required with a disposable diaper.

Babywearing: My son was asking for "up up" within a week of his placement surgery, which was done at the same time as a major abdominal surgery that included using 22 staples to close the incision sites (the GJ was practically an afterthought in the surgery)

Baths: Submerging the tube actually seems to keep our son's stoma healthier than keeping it out of the water. He had a central venous catheter when the GJ was initially placed, and until the CVC was removed several months later, he had to be sponge bathed. We also find that we have had no trouble with pools or even the ocean.

Extensions: We prefer 24 inch extensions, but that is for a GJ that is continuously hooked up and taped to him. For my a G tube, I would think 12 inch extensions would be ideal. We prefer AMT extensions. They seem to last longer and come clean more easily that MicKey extensions.

Oh, and I totally agree about giving meds. It is so much nicer to just run them through the tube and know he got them all, rather than hoping that he didn't spit out very much!

[Abbigator5]

My 3 yo has a g-tube and we've had it for over a year now. The only restriction there is, is that for a week or so while it heals you can;t submerge them in water, other then that you're good to do. we CD, and the tube isn't anywhere near the diaper. He swims, rolls around on the floor, goes in carriers and baby swings, etc. After a month or so no one even really notices it until we had to use it. Both the AMT mini-one and MIC key buttons are very low profile, so they hardly get in the way. If your son ends up with some granulation tissue, or has a tube that oozes a little (which is normal), mine didn't, I HIGHLY suggest Button Buddies instead of the gauze pads they give you to put around the tube. After my son's tube was fully healed we don't even put anything around his tube anymore.

I have a bit of experience, if you have any questions you are more then welcome to PM me.

[mama_times5]

How did surgery and your first few days go? Some surgeons start with a tube, some straight to a button. The later would be easier for babywearing purposes as it is low profile and immediately takes a right turn, so pressure on it won't occlude or tug on tube.

We were so nervous before our tube and med-giving alone made us wonder what took us so long in retrospect!

Hope it's going well!

[PatchworkPeddler]

Originally Posted by jadep i saw on the patchwork peddler on hc some cute g tube pads that match prints with a bunch of our diapers i think we need some of those i love your idea of the tubie bear- not just for him, but for my older 3 kids too. they are concerned, and not usre how to process everything that is going on, and thier own special tubie bears might help with that.

Hey hun I hope all is well with your new tubie! <3 I just wanted to introduce myself and give you some resources. I was on the couch hangin' with my husband and saw this so I had to come post!

Anyway my name is Katie and my husband John and I are Patchwork Peddler

First of all, you can do A LOT MORE with a tubie than you think. The stomach is not a sterile environment, so even if a little water got in there from being submerged--it won't hurt any more than another person accidentally taking a swallow I know I've done that before! I agree that you need to be a little careful until it heals, but your GI should be able to tell you (if they haven't already, which I'm sure they have) what is safe and when.

If you want to use a carrier to carry your tubie I don't really see that as a problem... I use the Ergo and I don't think that would yank a tube out because there's nothing in that area to yank at it. Especially if you're doing a front-carry. However, if you're still concerned, you could get a support belt to go around your child's waist and cover the tube to keep it protected. This is also good for continuous feeds when your child likes to get the tube yanked or if your child likes to play with the button (or tube if you don't have a button yet).

I'm sure by now you've probably figured out answers to most of your first questions, so here are some awesome resources

First of all, Get a Mini Buddy (uses AMT buttons) or Tubie Friend (uses Mic-Key buttons)!! They can basically do any medical intervention needed--G Tubes (various styles), Trachs, Ostomys and more. In case you haven't found them, they're on Facebook and Tubie Friends has a website www.tubiefriends.com . I think Mini Buddy is working on one. They are AWESOME. They are non-profit and provide the friends off donations. The surgeons and mods are just wonderful.

Feeding Tube Awareness is a community of tubies, tubie parents, ex-tubies, etc. who support and gather resources for tubie families. They are great. They get lots of questions so there is lots of information on their Facebook page along with their website (www.feedingtubeawareness.org). We donate a portion of our profits to them this year.

Mommies of Miracles is a great organization as well. We work with them on different things and the admins are SUPER sweet. One of the admins, Paige, runs Pumpkin Packs which is a business that modifies backpacks to accommodate feeding pumps for the kiddos who need to/want to be mobile during a feed, especially those who are on continuous feeds.

I've got my nose into a book called "Complete Tube Feeding". This is a great book. There are lots of questions to frequently asked tubie questions, from basic terms, what you need to know once your child/you have had a tube for a while, and lots more info. It's by Eric Aadhaar O'Gorman and I got mine off Amazon.

There are LOTS of resources on Facebook. My facebook page "likes" a lot of them so if you go through our "likes" you'll be able to easily find a lot of resources. There are some great people out there who are ready to support other tubies. My facebook page is www.facebook.com/patchworkpeddler and there are just too many to list.

We also have a list of resources on our website at www.patchworkpeddler.com (just got that launched this month) but those are mainly just the ones that we work with in some way. Mommies of Miracles and Feeding Tube Awareness have more exhaustive lists of references than I can even catch up with!

I don't have a way to search your name to see if you've ordered from us yet, but if you haven't, we would be happy to send you a sample pack. You can also check out our testimonials on our website to see what other people think of our pads. If you'd like a sample pad, we'll send it free of charge.

I hope all is well and your family is easily adjusting to tube feeding! God bless!