OH CRAP, The Feeding Tube Fell Out! What Do I Do?

So when you first come home with a g-tube they tell you that if the tube comes out or falls out or breaks you need to “stick something” in the hole and rush to the ER. They tell you this for the first three months. Then after that period they teach you how to put a new one in and your supply company sends you a back up tube.

Jasmines g-tube several days after placement

Replacement tube in hand you feel great! You can put a new one in no problem. But what happens when you run out of the replacement one and your kid pops two tubes in a mater of a few weeks? That’s what happened to us!

So as you know toddlers are busy little bees and constantly on the move. We have a VERY active toddler who unfortunately climbs everything all the time. She is up and down and from one thing to the next all day long. Imagine that your kid has a feeding tube port on the outside of their stomach and just cringe every time they slide off the couch on the stomach to get down.

This is the hole where the tube goes. 

So, what happens when it falls out? The hole begins to close almost immediately. You might be thinking.. big deal, just feed the kid and get a new one in when you can. Wrong, Jasmine’s condition requires her to eat every few hours or her levels could get high and cause her to get really sick. This is why the tube falling out is truly an emergency for us. The reason we have a tube is because we need it to keep our daughter healthy… and alive.

The replacement tube comes every three months and your insurance will not pay for a new one until the next billing cycle. These suckers cost $180!!!!!

THE STUFF THEY DON’T TELL YOU…

First, they don’t tell you WHAT to put in the hole when the tube comes out. I’ve learned that veteran moms get “g-tube saver kits” from Patchwork Peddler. It’s literally a sterile catheter that’s the same size as your kids tube and you put that in until you can get to the ER. (because what else would you shove into the open hole to your kids stomach?) Get one... get 5... keep one in the diaper bag and in your purse and in your car; who carries an extra tube around all the time?

Next, no one tells you to keep the top piece of the replacement tube packaging. It has codes on it. I’ve learned that you’re supposed to keep the codes and write down when the new tube goes in.

Then, no one told me to use the codes above and call the company who makes the tube. I’ve learned that within 30 days the company will replace the tube if it breaks.

Last, you’ve got about 20 minutes without plugging the hole to make it to an ER. Also, you need to call your local emergency rooms to see who carries the g-tube and who doesn’t. I’ve if you’re far away from the big children’s hospitals you may have a local hospital branch. Our local children’s hospital branch only carried certain sizes of the g-tube. Regular “adult” emergency rooms will not carry tubes and definitely will not carry pediatric sizes.

If the hole closes which is likely if you cannot make it in time your child will require another surgery to get it back in. Trust me when I say that 30 minutes to our local branch almost landed us back to the operating room. The emergency staff had to work VERY HARD to get my daughters tube back in. They had to DIG in the hole while she screamed. I don’t mean to be graphic but this is the reality. I told them do what they had to because if they didn’t get it in we would have had to leave and drive to the children’s hospital in the middle of the night.

Jasmine sleeping on the way home