I never thought, when I was pregnant, that I would say that using a feeding tube was the best parenting decision I have made for my daughter, but it's true. Feeding tubes seem scary at first, but now it's just a part of my daughter and a normal part of our lives. She can still take a bath, go swimming, go to the beach, go down a slide on her tummy, and just be a kid.

I have taken and collected some photos of Nitara's tubes and buttons. I thought someone might find this information useful. First check out her Photos page to see what her NG (naso-gastric) tube looked like, her many pumps that we tried out, and so on.

There are many photos and other resources on the web if you want to get an idea of the different types of devices that are used. Everything from gastrostomy tubes, to mini buttons. You can also check the Tube-Feeding Forum at Parent-2-Parent.com for more photos and discussions about tubes.

WARNING: Many of these photos are graphic and may be disturbing to some people. But that's life.

Changing a Button at Home

The first time I did this by myself I was sure I was going to faint. But I didn't. In fact it's easy compared to the four months I spent putting Nitara's NG tube in. This is an AMT Mini balloon button. The Mic-key is another popular balloon button. The concept here is the same for both buttons, as well as the many other balloon buttons available.

A balloon button is great because it can be changed at home. The button is inserted into the child and then the chamber is inflated with water from the outside. As long as the balloon stays inflated, the button is secure. Always check the level of water in the balloon to make sure it's not leaking. Ask your child's doctor how much should be in the balloon (usually it's around 5mL). If the balloon is showing signs of leaking it should be changed out. Here's how to do it.

Preparing the supplies. I have opened the button kit, filled the syringe with water,and lubricated the new button with KY jelly.

I use the other syringe to draw water out of the balloon of the old button.

I gently pull out the button.

Here is the stoma with no button, some light granulation tissue, and a bit of gauze stuck to one side.

I quickly insert the new button and fill the balloon.

Done! See? Not so bad.

Granulation Tissue! Oh My!

Gran tissue is very nasty and hard to deal with, but most of the time it can be prevented or at least kept under control. Some people just seem to struggle with it no matter what they try, though. It's basically the body's way of trying to close the wound in the body. If it can't grow across the hole because the tube is in the way, it will grow up and around the tube instead.

I was a big user of gauze around the button. I thought it would help keep her area clean, prevent leaks, and just be a nice soft cushion for the button. What I did not realize is that gauze keeps air from getting to the stoma. So then the gastric leaks and oozes and sits there and irritates the skin. If the skin is left open to air, the ooze will just dry up and flake off. The gauze also creates a nice warm environment to breed bacteria.

This is a donut of granulation tissue caused by too much gauze. It's not the typical oozy pink tissue, but it still is not supposed to be like that. I asked her doctor for some steriod cream to put on it and it worked wonders! I had to use it on and off for several weeks to make sure it stayed away. Another option that some doctors use is silver nitrate sticks. In my opinion and just being around tube-feeding boards for a few years, it does not seem very effective at all long-term. It can also hurt sometimes. Gran tissue will grow back in a matter of hours or days. It is better to find out why it is growing out of control and address that problem.

This is after treating the area with steriod cream for just a few days.

Healed! This is how a stoma is supposed to look!

Here are some more photos from over a year later. The nurses always ooh and all about how pretty her stoma is. If I have one mission in life it will be to tell people to ditch the gauze!! Seriously.

Nasty Type (more typical) Granulation Tissue

This is a different kind of tissue caused by trauma to the area.
Nitara's Bard button had worn out. Because it does not have a balloon, but rather a silicon "mushroom" on the end, it had to be yanked out by force. It caused her some pain and it caused the area to become irritated since this was just 2 months after surgery. A standard Mic-key was put in place and Nitara proceeded to bump it and knock in on things. Within a few days she started growing granulation tissue, like velvet flower petals. It broke open and bled. I took her in and it was burned off with silver nitrate (sounds worse than it is) and an AMT button was put in.

This is some more granulation tissue growing. It took awhile for the area to heal and in the meantime it grew tissue. As you can see from the next photo, granulation tissue can literally grow within hours.

This photo was taken a few days later, after treatment with steriod cream.