Understanding Feeding Tubes

NG-tube.jpgOur oldest son Jack had a feeding tube for three years from age four months to just past his third birthday (the last six months we didn’t use it, but needed to keep it just in case there was a set-back). Since he suffered from a feeding aversion due to severe reflux and milk protein intolerance, it was a difficult “choice” we had to make. While the “choice” was an obvious one for us, other children with certain medical conditions require feeding tubes as they are unable to eat orally.

Although Jack could drink a bottle when he was an infant it caused him so much pain that he refused to do so after several months of associating pain with eating. After fighting with him to eat (feedings would take over an hour at times) we decided it was in his best interest and ours to insert an NG feeding tube to provide a painless feeding process and an opportunity to reboot his pain memory. It was the best decision we ever made. He immediately changed into a happy baby and we got to relax and be somewhat “normal” parents.

NG-tube or Nasogastric Tube
An NG-tube is a small tube that is inserted in the nose and runs down the esophagus into the upper part of the stomach. It can be used for continuous feedings or bolus feedings where large amounts are given over a short period of time similar to giving a bottle. Once taught how to place the tubes, parents are able to replace them as needed. Typically NG-tubes are used for children that will be tube fed for short periods of time, like a few weeks or months. They can be removed easily and although not painful to replace, can be uncomfortable and very unpleasant for the parents placing it.

PEG tube.jpgSeven months later we had a G-tube surgically implanted into his stomach, because we concluded with his doctor that he was not eating enough orally and the NG tube had outlived its life. Jack started with a PEG tube for three months and then had an endoscopy to change it to a MIC-KEY button. After that we changed his MIC-KEY button every three months at home.

G-Tube

A G-tube is inserted directly into the stomach through a hole made in the abdominal wall. The hole is made surgically. Like the NG-tube, feedings can either be bolus or continuous. There are two main types of G-tubes, PEG tubes and buttons.

PEG tube – The tube has a small mushroom shaped end that holds it in place and has about 5-6 inches of tubing on the outside that connects to the feeding machine. This tube can only be changed or removed surgically during an endoscopy. Usually this is the tube that children start with when a G-tube is placed. After the stomach and abdomen fistula have healed after surgery (approximately three months), the PEG can be replaced with a lower profile button.

MIC-KEY button.jpgButton – The two types of buttons are MIC-KEY and BARD. The MIC-KEY has a small balloon that is inflated with water after it is inserted into the fistula to hold it in place. The external part of the button is flat against the stomach. After being properly trained parents are able to change MIC-KEY buttons at home.
The BARD button has a small dome shaped plastic piece that holds it in place. It can be inserted without surgery, but can be more uncomfortable and should only be changed by a nurse or doctor.

Converting to the G-tube moved the NG-tube off of Jack’s face and to a more inconspicuous location, eliminating the risk of accidental removal by a stray hand. This also eliminated the stares while out and about in public. We learned to cope with the latter but it was always very hard dealing with educated adults who were staring at our beautiful son. Putting your child through surgery is never easy, but we felt it was the right choice for us and Jack is living proof that it was.

g-tube fistula.jpgOnce Jack learned to eat orally through a wonderful food re-introduction program at Children’s Hospital, and after six months passed without using it, we removed the G-tube. He had a small indentation on his stomach until last summer when he requested that we have it sewn up.

Below are descriptions of other types of feeding tubes that are also available. Jack had an NG-tube, a PEG for three months as his first G-tube, then a MIC-KEY button for the remainder of his time.

NJ-tube or Nasojejunal tube
Similar to the NG tube this one is inserted in the nose, going down the esophagus, but it continues through the stomach into the upper part of the small intestine called the jejunum. This tube is used for children who can’t handle having feedings in their stomachs. Since the jejunum can’t handle large amounts of food at one time these feedings need to be continuous.

GJ-tube or Gastrostomy-Jejunostomy tube
This tube is similar to the G-tube in that it enters the stomach through the abdomen wall, but it has a longer tube that is guided into the jejunum. This is used for children who need to have the port in their stomach, but can’t handle food in their stomach.

J-tube or Jejunostomy
This tube is placed directly into the jejunum through the abdominal wall. These are used for children who need to have food placed directly into their intestines and can handle having the tube directly in the intestine.

 

    

I sourced my information from the following sites
http://www.parent-2-parent.com/tubefeeding/type.htm
http://huntingtondisease.tripod.com/feedingtubes/id1.html
http://www.rileypediatricsurgery.com/Gastrostomy.htm

Coming Full Circle

On Tuesday Jackson had surgery to remove what is left of his G-tube hole. This is something he has been asking about for the last year. It was always his choice, but we and his doctor wanted him to be a bit older, which is why we are doing it now.

The procedure involves cutting out the skin cells that have grown down into the original hole when it healed almost six years ago. When we removed his G-tube three years ago (which only involved removing the tube and covering it with a band-aid) the hole closed up internally, but left a small hole/divot on the outside of the skin. So now he will have a little line scar instead of the divot that was there previously.

Returning to Seattle Children’s Hospital for things like this takes me back to the first 15 months of his life, with four overnight stays, ten procedures and to many appointments to count. But now this phase is complete.

Although this procedure is cosmetic and not required, I knew he would want to do it someday. Last night as I scrubbed him down with the antimicrobial soap I was looking at his tummy, thinking about how it would look different today. We actually took a picture just so we could remember. I remember the night before his G-tube surgery and looking at his tummy thinking how it would never be perfect again. But the tradeoff at the time was we got his cheeks back so it would be worth it (the NG tube was snaked up his nose and into his tummy and the end had to be taped to his cheek).

  NG tube PEG tube

  MIC KEY button tube hole

It is never easy to have your child go under anesthesia and I can’t say if it is easier when they are younger and not aware or older but can tell you if they are in pain. He was very nervous, but all the doctors, nurses and staff at Seattle Children’s are amazing and handled his fear and questions very well. Jim went back with him when they put him to sleep and held the mask. I did it once for his first procedure when he was six months old and realized that I just can’t handle watching them put my child out. As a mom I can handle a lot of things (inserting NG tubes and G-tubes, giving enemas, fixing wounds), but that is too much for me. Although it clearly affects Jim, luckily he can do it and Jack was very brave.

Dr. Goldin, who was actually the one who helped put in his G-tube, removed the fistula (skin cells in the tube hole) and sewed up the stomach wall, fascia (a layer of tissue on the abdominal wall) and the skin. Jack can’t swim for a week, but other than he do most anything once he feels up to it.

So our circle with feeding tubes is complete. We have gone from an NG tube to a PEG tube to a MIC KEY button to an eating boy to a MIC KEY removal and finally no more tummy hole. Now I just need to finish the book about our journey so others can learn from our experience and hopefully benefit.