So Your Child Needs To Be Tube Fed?

RRichards
October 2006

NG (naso-gastric) and NJ (naso-jejunum) tubes are temporary fixes for a child who is not gaining enough weight or is unable to eat orally. It is a very narrow tube threaded through your child’s nose down to his stomach or jejunum. (Visit the tube feeding page for a more complete description of NG and NJ tubes.)

Formula or breast milk is delivered through the tube via pump, gravity, or syringe as bolus feeds (large amounts in a short time) or continuous feeds. Although an NG/J tube is generally put into place by a medical professional, I was trained to put an NG tube in our son, Daniel, by a home health nurse. A nurse should also show you how to check placement of an NG tube before each feeding.

Because he was born prematurely, Daniel used an NG tube for the first 12 weeks of his life. He hadn’t yet developed a suck reflex, and he didn’t have the strength to nurse or bottle feed. Later, when his reflux was in full swing and he’d learned that eating caused him pain, he simply refused to eat, and we used the NG tube to get us through the bad days and, later, the bad months.

The negative aspects – An NG/J tube is great because you know your child is getting the nutrition he needs with an NG/J tube, but you may encounter some of these problems:

• Kids like to pull them out. We found that taping the tube to Daniel’s face all the way from the edge of his nose to his ear made the tube most secure.
• Tape irritates the skin. We tried all types of tape – surgical tape, DuoDERM and Tagaderm, and anything else that looked promising at the pharmacy (and be sure to ask your doctor for samples!) – to secure the tube. But Daniel always had a rough red spot on his cheek. Using Uni-Solve adhesive remover pads seemed to help us take off old tape more gently. And whenever it was time to change tubes, we’d switch nostrils as well.
• Tubes irritate the nose. Daniel always had a runny nose when he was using an NG tube. There was nothing we could do about it.
• The tube gets in the way. We looped up the extra tubing, secured it with the end cap, and safety-pinned the whole thing to the shoulder of Daniel’s shirt.
• The tube, at least in our experience, causes more vomiting. For the first few days with a new tube, Daniel always puked more than usual. My theory is that he would start to reflux, food would move up his esophagus, the tube would wiggle, he’d become even more irritated, and he’d throw up entire feeds. Eventually he would adjust to using the tube and the excessive vomiting would subside. The tube also holds the LES open slightly and therefore can exacerbate reflux.
• The whole NG/J tube situation can cause greater oral and facial aversions for a child who is likely orally defensive in the first place.
• Long-term use can cause damage. One of Daniel’s doctors told us that children can “tune out” the tube over time, leaving a spot on the tongue or throat without sensation. We definitely saw this with Daniel; he would panic and choke if food got far enough back into his mouth. We were told a child should use an NG tube for no more than three months before weaning him or considering a G or J tube.

After Daniel had been using an NG tube for an extended period and his attitude toward eating continued to worsen, we opted to have a G tube, or gastronomy tube, surgically placed. (A J tube or jejunostomy tube is similar, but it’s placed in the jejunum which is the second part of the small bowel, lower in the digestive tract. Visit tube feeding page for details.)

Why he needed a G tube – We worried that Daniel would lose the few oral feeding skills he had if he got a G tube, but finally a doctor put it to us bluntly – he had no feeding skills worth keeping. And the G tube would allow us to give Daniel the fluids, calories, and nutrition he needed without causing so much mealtime stress.

The surgery – Daniel’s G tube placement was an hour-long surgical procedure that included an endoscopy. He spent a few hours in recovery, then was transferred to the pediatrics ward for the night. The nurses began using the tube almost immediately – giving him Pedialyte for fluids and because it’s more easily digested. In the morning, we began giving him his regular formula through his new G tube, and, once it was clear he was able to tolerate it, we went home.

Caring for a G tube – As soon as we got home, Daniel seemed pain-free and was playing as usual, but we had to take some precautions to keep his G tube site healthy. We gently wiped the area with warm water and a clean gauze pad and put a split sponge around the site to collect any drainage.
We were lucky. Within a few days, it had stopped oozing, although the long tube (foley catheter) coming from the site sometimes pulled and irritated his skin. To combat that problem, we alternated between tucking his tube into the back of his diaper and putting it over his shoulder. Your doctor will give you complete instructions for caring for your child’s tube site before you leave the hospital.