My grandson is five years old and has a Gastrojejunal or GJ feeding tube, which is a type of feeding tube that feeds directly into the intestine.
About the GJ Tube
My grandson’s GJ feeding tube has three ports on it. At the very top is the feeding port, which is attached to a very long internal tube that runs through his stomach and into his jejunum, the main part of the intestine. The second port has a small tube that goes into his stomach and can be used for venting air from his stomach. The third port goes to a balloon that is filled with water to keep the GJ feeding tube in place on his stomach.
With GJ feeding tubes you must use a pump that you can use to program the rate of feed, because you can’t bolus a large amount of food quickly into a GJ-tube like you can with a G-tube. For example, my grandson is on his GJ-tube for 16 hours out of the day. Most of his feeds are done at night for 12 hours, hooked up to his pump on an IV pole next to his bed. My grandson has two feeding rates: one when he’s awake and another when he’s asleep. I may also have to change his feeding rate when he is sick.
Supplies and Practical Matters
When you have a GJ feeding tube, you need feeding tube supplies like extension sets to connect to the tube, feeding bags to hold formula, syringes for flushing the tube and medications, a pump to deliver the food, and an IV pole or feeding backpack to hold the pump and formula. Cost can be a factor when it comes to these supplies. The cost for GJ-tubes may be much higher than for G-tubes. Pumps and IV poles can cost close to $1000. However, Medicaid covers feeding pumps and supplies, and many insurance policies cover them as well.
GJ-tubes are usually bulkier than G-tubes. I use medical tape to secure the tube to my grandson’s stomach to help prevent him from pulling it out. Some nights he wraps his tube around himself, and I have to be very careful to untangle it without pulling on his tube.
When he’s hooked up to his daytime feed, I use a feeding backpack that hangs on his wheelchair. He can also wear it on his back or hang it on the chair next to him at school. Because he is GJ fed at school, he needs a nurse to go to school to take care of his feeds. Most children are sent to school with a lunch box. My boy is sent to school with a feeding backpack filled with Nutren Junior formula, a 500ml feeding bag, his extensions, a syringe, and his feeding pump.
Changing the GJ-Tube
GJ feeding tubes can’t be changed at home like a G-tube. They have to be changed in a hospital, and many hospitals don’t change children’s GJ-tubes. We have to go to the nearest children’s hospital two hours away. In an emergency situation I can insert a temporary tube in to keep the hole open in his stomach until he gets to the hospital.
To change the tube, they take him to radiology where they use continuous X-rays to put a metal wire through the hole in his stomach. This wire is guided through the stomach and into the jejunum. Then they take the GJ-tube and feed it along the wire into his jejunum. Finally, they use radioactive dye to check the placement.
Typically, children are awake and are held down on a table, though they can be sedated. My grandson cries and screams through the whole thing, but he also has autism. As a grandparent, it is hard watching your child go through this, but you have to weigh the pros and cons of sedation. The procedure is usually done before you know it.
There are many ups and down with GJ feeding tubes. Please make sure you do your research, and that you have exhausted all other avenues first, such as continuous G feeds. For my grandson, his GJ feeding tube keeps him alive and healthy, and that is all that matters.