|This is a photo of Eli when he turned one. It's a good shot of his scars and his MicKey button. Photo courtesy of Reflections by Mindy.|
People are always curious about his feeding tube. Some of the most popular questions are about how it works, what exactly do we use it for, how often we change it, does it hurt him, and how long will he have it? This post is an explanation of why Eli has the tube, how it works, and answers to the previous questions. So here goes!
Does it hurt him?
No, the tube doesn't hurt him. It was a surgery to put it in and, yes, he was in pain postoperatively, but now it's just part of him. He has been playing with it more these days and I know he's going to pull it out on his own sometime, but for now he just touches it. I don't mind his curiosity, it's part of his body and he needs to be comfortable with it.
Why does he have it?
One of the things that led us to seek help prior to his diagnosis was that he wasn't nursing as much as he had been. We are a family who likes to eat so we knew something was wrong! After his first heart surgery, the only thing he would allow in his mouth was a pacifier...and only a certain brand at that. The fact is Eli needed nutrition, he wasn't eating and we had to have a way to get milk into our baby. Initially, he had an NG (N = nasal G= gastro, meaning a tube inserted into his nose and fed down into his stomach). It had to be taped to his face, immediately made him look different, had to be changed weekly or more often, had to be checked for proper placement prior to each use which was multiple times day and night, and could easily be dislodged or pulled out by Eli or Zachary (Z was only 3 when Eli had the NG). Then he started having bloody stools. It was about two weeks after we got home from his first heart surgery and we didn't know if he had GI problems or if we had scratched him when we changed the tube. Further testing revealed he had a milk protein intolerance. While he was in the hospital for that, our cardiologist made a push to get the feeding tube surgically placed. Bryan and I were on the fence about the permanent need but agreed that if we were going to do it, this was the time. The GI doctor wanted to do an EGD (a tube down the throat into the stomach to allow the doctor to see the tissues and take samples for biopsy) and colonoscopy (a tube up the rectum and through the intestines for the same reason) and Eli would need to be put out for those. Since he was going to be under anyway it was the perfect time to place the feeding tube. Our decision was made and we have not had one regret since.
How long will he have it?
I don't know. Some parents whose little ones have feeding tubes are very anxious to get them removed and I understand that. It's not a natural part of your baby. It's a visual reminder that something is wrong with your perfect child. Bryan and I weren't thrilled about getting it in the first place, but once we did we quickly realized how much better it is for Eli. We are not in any hurry to get rid of it. He had stopped requiring tube feedings for several months, but is now needing them again. We're so glad we have that access. As long as the hole stays healthy and the surrounding skin doesn't have any breakdown, we're much more content to have the button and not use it a lot than to be rid of it and need it again.
How did they get it in there to begin with?
It was a surgery and it took two doctors. One was our pediatric GI (gastrointestinal) Dr. Maisel and the other was a pediatric general surgeon Dr. Kokoska. Dr. Maisel had the scope in Eli's stomach for the EGD and found the spot for the G-tube from the inside. By the way, at this point it was called a G-tube meaning gastric tube (gastric = stomach). Dr. Kokoska found Dr. Maisel's spot from the outside and made the incision where Dr. Maisel wanted it. It took two of them because the internal organs in babies that small are very close together and they didn't want to inadvertently puncture other organs. Remember, Eli was under 10lbs at this point. At first it was a long tube about 18 inches in length that led to a disc on the outer part of his belly. The pictures below were taken throughout the procedure and show what it looked like on the inside. He kept this tube for almost two months. Have you ever had your ears pierced and had to keep the original piercing studs in for a few weeks before you were allowed to change them? This is the same concept. Once the hole had time to form a tract, he was put under anesthetic once again so that tube could be removed and his new button put in place. It's called a MicKey button and it's what you'll see in later pictures.
|Photos given to us by the doctors who placed his G-tube. Image 2 notes point out his liver and his stomach. Image 4 notes say "stomach" and "pulling PEG tube". Doesn't he have the cutest little internal organs ever?!?!|
How often do we change it?
Monthly or more often if necessary.
What necessitates a change?
-if the tube is pulled out
-if the tube is blocked and we can't get anything to flow through
-if it's getting visibly dirty/gunky.
Who changes it? Where is it changed?
We change it. We do it at home, usually on the changing table in his room. We carry an extra kit in our van in case we have to while we're out sometime. Bryan and I have always done it together but one person could do it alone. It's easier with two because one can occupy Eli while the other gets it done. The whole process takes less than 5 minutes. Some people have asked if we're allowed to change it because I'm a nurse while other families would have their doctor do it or go to the hospital. No, I'm not Eli's nurse, I'm his mommy. We were taught, as his parents, to do this regardless of our occupations.
Shouldn't this be done in a sterile environment?
The initial surgery was done in a sterile operating room, but since then it's been what's called a "clean" procedure. When it was converted from the larger tube they placed during surgery to his current MicKey style button, that was in a procedure room, not a sterile OR. Each of his new kits is in sterile packaging. We wash our hands and keep the whole process as clean as possible by laying him on a clean blanket, only touching what we have to, and keeping his hands away. Stomach contents are not sterile like other organs. He probably gets more germs from what he puts into his mouth than from us changing his button.
Here's what you've all been waiting for. Here's how we change it and use his MicKey button.
|This is the kit for his new MicKey button.|
|We use good ole KY jelly (or the generic!) on the stem of the button to make insertion easier for him. So if you see me buying it by the case at WalMart, that's why. Yeah, that's why.|
|Another view of his button hole.|
|The new button is in place, the balloon filled, and the syringe removed. The new button stem just slides into the hole, we inject the water to fill the balloon and remove the syringe. He's done!|
|Here's the tube we use to access his button. The end of the tube has a little piece of plastic that sticks up. That aligns with the notched area on the face of his button.|
|The black line on the access tube shows where the notch is. Line that up with the line on the button indicating the place for the notch and....|
|This is the tube we took out. As you can see, it gets dirty, gross and gunky.|
|Eli has started helping with his medicines. He'll put his finger on the plunger and help us push it in. He's half asleep in this photo. You can see how it's hooked up to his button and the medicine syringe is attached.|
|A look at our daily board|
|The first picture I took of our daily board being held by our lovely model.|