What to do When a G-Tube Falls Out and the Hole is Too Small to Replace it?

If you’ve ever been the caretaker for a tubie (someone who has a gastrotomy, a.k.a. g-tube), you’ve wondered what happens if it falls out.  In the back of your mind you fear that it’ll fall out and you won’t notice before the stoma (hole) closes.  I know this is many of our worries, because it just happened to me and many people responded with, “that’s one of my biggest fears!”

Some days I wonder, “does this crap happen to me just to give me something to write about?”

That may be, but since it did happen and I learned a thing or two I wished I had known in advance, I thought I’d share so others can hopefully benefit and avoid a drive to the ER wondering if your child is going to need surgery.  Note, I did not say you can avoid a trip to the ER.  I’d still recommend going in, but you just may have a better idea on the surgery or no surgery question.

Disclaimers:

Owen has a Mic-Key button so this information best fits this button.

Regardless of the type of g-tube your child has, please review your emergency plan with your doctor.  I’m sharing what was recommended as “rule of thumb” but every patient is different and has unique circumstances.

If the stoma is less than six weeks old, do not attempt to replace a g-tube.  Cover the stoma and get to a doctor as quickly as possible.

This information assumes you have been trained to replace a g-tube by a medical professional.  If you have not been trained to change g-tubes, cover the stoma and go to the doctor.

Emergency Kit:  You will want to keep this emergency kit with you at all times.  If at any time you try to replace a g-tube and can’t fit the tube into the stoma, this will be your back up plan.

  • 1-2 sizes of foley catheters that are smaller than your child’s g-tube.  (For example, Owen has a 12 French g-tube.  My kit has a 6 french and an 8 french foley catheter.  French measurement is the diameter of catheter.  Each unit is 1/3 mm).  To the right is an example of a Foley catheter. You should be able to get catheters from the same provider who supplies your g-tube replacements.
  • 5 ml syringe (use one from an old g-tube kit)
  • Lubricant (KY Jelly or similar)
  • A small diaper (newborn works best, but any size will do)
  • Tape that will stick to skin
  • Hand sanitizer (in case you’re not near a sink).

How to use your emergency kit when the g-tube won’t fit in the stoma:  The process is very similar to replacing a g-tube, however, you’ll instead use the foley as place holder to keep the stoma open until you can get to the doctor.

  1. With the syringe draw up the amount of water that your child’s g-tube calls for.  (3-5 ml are most common)
  2. Take catheter and dip the deflated balloon (balloon looks just like a g-tube balloon, note picture above) end in lubricant.
  3. Attempt to insert the catheter into the stoma so the balloon is fully inserted.  You may need to try the smaller size if the first one does not work.
    1. If neither size comfortable slides in, cover the stoma and go to the doctor.  Do not force it.
    2. If one fits, move on to step four.
  4. Fill the balloon with the syringe of water using med port.
  5. Wrap the open end of the catheter in the diaper to avoid stomach contents draining out and tape it closed.
  6. Tape the catheter onto the stomach to secure it from moving around or getting pulled.

Now, you can take your child to the doctor knowing that the stoma is still open.  The stoma should open a little wider than the size of the catheter so once you get to the doctor, they can try the next size up and then they will keep moving up the scale until the stoma is large enough to place the correct g-tube.  The process works well and shouldn’t cause much, if any discomfort, to the patient.  Owen did cry when they placed the g-tube but I think that it was more related to medical anxiety than actual pain.

Again, this is the general recommendation from the ER, however, please check with your doctor to make sure there is not a better plan for your child.  I really wish I would have known to have an emergency back up kit.  It would have lessened my fears and made for a much shorter ER visit.

For a tube replacement refresher, here is a great description with diagrams from BC Children’s in Canada.

tubie

Take Me Out To The Ball Game

We had such a great treat today! Owen had the honor of representing Gillette Children’s Hospital by leading the Kid’s Running of the Bases at the Minnesota Twins baseball game.

The 10-0 score tells me that the game was great. I wasn’t watching much, the kids aren’t the sit and watch type. It worked out well because we were in handicap accessible seating and the kids had room to get up a play without interrupting other attendees.  Also, our seats were perfect because the Twins hit 3 home runs into the stands just below us.

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Giving cotton candy a try.

Giving cotton candy a try.

With cousin Derek.

With cousin Derek.

We even had enough room for friends Becca and James and their daughters Emma and Maddy to stop by for a while. Emma was a 23 weeker who was in the NICU at the same time as Owen.

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At the end of every Sunday home game, kids who attend Twins game line up in a line that wraps halfway around the stadium. The kids in our party skipped the line and were escorted right down to the front of the line.

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Owen and his friend, Nathan, ran and Owen walked with me holding his hands. He walked nearly the entire way. I picked him up and carried him half way between 2nd and 3rd base and then put him back down to walk from 3rd to home.

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Owen standing on home plate.  I love what this picture represents about what Gillette does for kids with disabilities.  Do you see the line of kids wrapping around the field? It goes up inside the stadium and curls back around to the far right the picture.

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Once Owen was done, the rest of the kids attending the game were able to start their run and we grabbed a quick family pic with TC.

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Owen hadn’t napped during the day and fell asleep while in his carrier in the walk to the car.

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When we got home and I was taking Owen out of the car, I noticed something on the floor… his g-tube! I quickly took him in and scrubbed up to put in a new one. Unfortunately my worst fear came true. The hole had already closed. I quickly changed his diaper and loaded him back into the car for a trip to the Emergency Room. Fortunately, they have some great tricks and Owen did not have to have surgery. We were there for about an hour and his tube is back. With this experience, I learned some keys on what to do if a g-tube hole closes again. I will write a post on that subject tomorrow because I know it’s so many of our fear for our tubies.

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A visit to the ER wasn’t the best part of the day, but things could have ended much worse and the rest of the day worked out perfectly so I’m going to chalk it up as practically perfect. Thanks to Gillette Children’s for the great memories and all your help in getting Owen mobile enough to participate in the running of the bases.