If you ask any parent of a child with a G tube or GJ tube, they will tell you it is a WHEN the tube comes out, not an IF.  Basically, kids are very rough and tumble, and odds are good that you will have a feeding tube get pulled out. It is best to always have an emergency kit ready for times like this! 

What do you need in your Emergency Feeding Tube Replacement Kit?

Thankfully most feeding tube families get a monthly DME (durable medical equipment) supply delivery every month.  Inside this delivery will be most of the medical items needed to replace a feeding tube if it comes out unexpectedly.

• Replacement Gtube Box-  This is a full kit that usually includes the button, extensions, lube, and a 5ml slip tip syringe. (not every type of feeding tube comes with the lube and syringe, but the AMT Mini Ones do)

Feeding tubes rarely come out when you are expecting them to, so I keep one of these kits in my car with our “Oh Crap Kit” when ever we are going more than 30 minutes away from home.

If you don’t have a Replacement Box, you will need to build your own kit.

Here is a quick list of items that will be handy to have just in case if you don’t have a full kit:

• Foley Catheter and Tape-  in case you don’t have a replacement button available, you will need to insert a catheter into the stoma, so the stoma won’t start to close. Once the catheter is in, you just simply tape it in place, and then proceed to either your doctor’s office or the local Children’s Hospital ER.  I do not recommend going to a regular ER, because they are typically set up for adults, not children, and they tend to have very little experience with feeding tube in children.
• Any water based lubricant like KY Jelly
• A 5ml slip tip syringe
• bottled water

What can you use for lube if you don’t have KY Jelly?

The ideal option is any water based lubricant, but if it is the middle of the night, and running to a store or pharmacy is not an option.  This list of usually available in most homes will work in a pinch!

1. Aquafor – clear gel that can come in a tube or tub, and is typically on hand for diaper rash
2. Petroleum Jelly- available in a tube or tub, and is a slightly yellow colored gel.
3. Coconut Oil- this type of oil may come in a semi solid or a liquid.  If yours is semi solid, just rub a small amount in your hand to warm it up and them apply to the button.
4. Olive oil- This can be a little messy, but totally works in a pinch.  The stomach is not a sterile area, and olive oil is a normal substance that would be swallowed while eating.
5. Vegetable Oil- Same as olive oil, in that it totally works in a pinch.  It’s not my first choice due to the mess, but it will totally work.

What do I do if a GJ tube comes out?

One of the major differences in daily care of a G tube and a GJ tube, is that it is totally possible to replace a G Tube at home as needed.  A GJ tube can only be placed by a physician either in the radiology department or in a surgical center.

If a GJ tube is accidently removed or pulled out, the first thing is to not panic.  It is very common to have a back-up G-tube kit.  You simply put a G-tube into the stoma to keep it open, and then contact your medical team.  Some will have you come in the next day to have a new GJ tube placed, but other’s will ask you to go straight to the hospital to have it replaced immediately.  Usually it is only replaced immediately, if the GJ is needed to control blood sugar or electrolytes.

If you don’t have a back-up G-tube, then you can place a foley catheter in to the stoma to keep it opened.

If the GJ tube has not been fully removed, but is just partially pulled out and you don’t have a G-tube or Catheter available……immediately tape the GJ tube down where it is. Don’t try to push it back in level, just tape it down how it is. Call your medical team, and then go straight to the ER of your Children’s Hospital.  This is truly a band-aid type fix and will not last long.  The ER staff should be able to insert a foley catheter or G-tube in while you wait for the GJ to be placed.

Do this now!  

If you are reading this right now, and know that you are not prepared for an unexpected feeding tube replacement, please gather these supplies immediately.  It is always better to be prepared and not have to use it, then to panic because you can’t find what you need!

If you don’t currently have a G-tube replacement box or Foley Catheter, please call your DME and ask for one to be added to your delivery.  These are the best to have on hand, and should be mandatory.  You may have to have your medical team send a prescription to cover these items.  They will want you to be prepared, so they will be happy to do this for you.

How long does it take for a feeding tube stoma to close up?

Time is of the essence in the case of an accidental removal.  It typically take 1-2 hours for a stoma to start to close up to where you won’t be able to insert a new one.  This is why it is so important to have your emergency kit or bag ready and waiting for you!  If you can not get a new gtube or catheter into the stoma to keep it open, you will definitely want to go the Emergency Room as quickly as you can.  Let the staff know exactly how long it has been since the tube came out.

Unfortunately if the stomas has started to heal and close up, the typical next step is to the dilate the stoma.  This usually involves numbing the area and basically forcing the stoma open.  This process can be very uncomfortable and very painful.  It is best to avoid this situation if at all possible.

If the stoma won’t dilate large enough to get a new feeding tube put in, then you may have to have surgery to re-site a new g-tube.

All of this can be avoided by simply having an emergency kit ready to go!  Please let all caregivers know exactly where it is.  Also as a precaution, it is best to keep an eye on your supplies.  They do have expiration dates, so you will want to make sure that your new g-tube is in date.  Double check that the size is still the same as what your child is using.  Some children change sizes frequently, so you will want to make sure the one you use in your kit will fit properly if it is need.

Don’t Panic….

G-tubes are scary and even the most seasoned parents still get nervous when an accidental removal happens.  Just remember to stay calm.  Most children will instantly pick up on the fact that your are scared and nervous, and then they will start to get scared and nervous.

In our house, we like to use songs to diffuse difficult situations.  My kids are suckers for singing, so whenever I need them to calm down and stop squirming, I simply start singing.  I pick a super easy song that they know, and they will start to relax and sing along.  

It is much easier to replace a g-tube on a calm child then on a screaming and wiggling child.  Take deep breaths and if need be, just talk yourself through the process.  You can say it softly to yourself outloud or just in your head.

If you remain calm, your child will remain calm, and the whole process of replacement will be over super quick.

If you feel uncomfortable replacing a g-tube, you may want to discuss this with your medical team.  Most hospitals have parent classes or one on one training with a medical dummy, where you can practice inserting a feeding tube.

There are also quite a few great videos on YouTube that are made by Children’s Hospitals, that will walk you through step by step how to re-insert a g-tube.  This is a great resource and most of the videos are less than 5 minutes, so if need be, take a deep breath and watch a video.  Once you feel confident, then you can replace the g-tube yourself!