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Friday, June 19, 2009

All About G-tubes

Please Note: This is a Parent-to-Parent Conversation about my experience in caring for my daughter who has been tube fed for the last 8 years. It is not a substitute for consulting your physician about how to proceed with your own child or loved one.

A G-tube (Gastrostomy Tube) is a device that is inserted through a person's abdomen to create a path to the stomach, also known as a "stoma". They are used to transfer nutrition (mostly liquid formulas) from an external source (like a syringe or feeding bag) into the stomach. In some cases, the person uses the G-tube as an additional supplement to what they are able to eat orally. However, the person receiving the nutrition does not have to ingest, chew, or swallow any food for nutrition. In many cases, the person is unable to chew or swallow correctly, which can be potentially dangerous (leading to choking or aspiration - where the nutrients are ingested into the lungs, which creates increased risk for lung diseases and pneumonias).

Aspiration is the reason Megan needed a G-tube placed. She used a NG (Nasal-gastric) tube for about a week before we had the G-tube placed. During this week, we had to replace the NG tube multiple times because she pulled it out, her skin was very sensitive to the tape used to hold it in place, and we did not like it that the NG tube was so noticeable to others. The G-tube has turned out to be life sustaining for Megan. If I had another child in the same position, I would do it all over again. Even if it turned out they could learn to eat on their own. They can always be taken out when they aren't needed anymore.

Placing a G-tube is a surgical procedure for children. It took Megan about 3 days to recover from the surgery part. She was just generally sore and uncomfortable. They gave her pain medications and taught us how to use it, care for it, and how to replace it if it came out before her appointment with the surgeon in a month. She had it placed the day after Christmas and was released from the hospital on New Year's Eve - no joke!

There are several types of G-tubes. This picture is the "starter" g-tube that many surgeons place first. Megan also started with this tube in December 2000. (I do not, however, recommend letting your child do this - I hope for obvious reasons. HaHa:))

This tube is placed first because it is the best for creating a healthy stoma and allowing for drainage just after the procedure. Also, there will be a little bit of crusting that occurs around it. Our surgeon told us this is normal and not to wash it off. (Note: This site looks a little irritated to me. To help with this a gauze pad or IV sponge can be used with some zinc paste for a few days. I found that this also helps keep the extra skin from growing around the tube - the body's natural response from trying to close the opening created because the tube is placed.) Megan's tube was taped on each side of the horizontal "rod." The tube that comes out the middle is the one that is used to feed your child or loved one. I think she had this kind for about a month. Then, the surgeon gave us a choice as to which other type of g-tube we wanted to use. We were offered two types to choose from.

The first type of tube is a Mic-key "button" type tube. It is a "low profile" tube because it is small and easier to hide under clothing. Figure A shows the part that extends outside the abdomen (and has a piece of guaze between the upper part and the abdomen). When the nurse described this type of tube to us when Megan was 14 months old she said, "Think of it more like the top of a beach ball. It has the hole on top with the cap that seals across the top."

Figure A

Figure B shows the tube in its entirety. The "balloon" at the base is filled with water to act as the anchor so that the tube is not easily pulled out of the opening in the abdomen, also called the "stoma." The tube is inserted into the stoma and then the balloon is inflated by inserting a syringe with water into the side of it.

Figure B

Now, I know that you are wondering, "How do you feed someone with such a tiny opening?" When you feed someone with a "button" style g-tube there are a series of extension tubes you can use to attach to the button. This picture shows how you attach the extension tube. There are lines on the "button" and on the part of the extension that is inserted into the opening.

You line these up, push in the extension, and turn it clockwise to lock into place as shown here.

The other end of the extension looks like this. It has a clamp with either one or two ports used for attaching a syringe or cap for a feeding bag. The particular extension shown in this picture has two ports and currently has a cap for a feeding bag attached.

When the extension is attached, it needs to be clamped and covered if it is not in use. This is because the stomach contents can also flow freely out of the stomach when the extension is attached. When people are fed a "bolus" it means that they are fed their nutrition/formula in larger amounts at once. For example, when Megan first got her G-tube at 14 months of age, we would feed her 6 ounces of formula (Pediasure) three times a day like it was a meal. The amount of bolus a person needs may vary depending on their age, size, and daily nutritional requirements. Boluses are usually "gravity" fed using a large syringe that looks like this.

The formula is poured into the syringe attached to the extension and "falls" into the tube automatically. (I prefer this type of extension that has a clamp, is 24 inches long, and only has one port at the end. The length of the extension can be "threaded" up the person's shirt and out the neck. That way, especially if you are in public, you can access the tube without exposing your child or loved one.)

In addition to receiving these "boluses" three times per day, Megan would also receive supplemental feedings at night delivered by a feeding pump. That was because her stomach could not tolerate more than 6 ounces at a time (she would throw any more up). She needed 24 ounces a day for her nutritional requirements and could only tolerate 18 ounces throughout the course of the daytime. She was 6 ounces short of what she needed.

These additional six ounces were given while she slept over a six hour period. We would put six ounces of formula into a feeding bag - that looks similar to an IV bag - and set the feeding pump to deliver about an ounce per hour. She would eat in her sleep from 10pm to 4am. The pump would alarm to wake us when the bag emptied. We had a pump and bag that attached to an IV pole like this one pictured. However, this picture is of the current pump that the hospital is using. This pump also needs to be plugged into a power outlet because it has a short battery life.

Note: Many children are able to tolerate their daily nutritional requirements within their specified bolus amounts throughout the day. Not everyone needs to use the night feedings and pump like we did. However, this is one of the perks of having a g-tube. You can feed someone whether they are awake or asleep. People without g-tubes must only eat when they are awake (wink).

The other type of g-tube we were offered looks like this one.

It is not as small as the button but also does not require attaching an extension. You attach a syringe or feeding bag cap right into the top of the tube. There is no clamp on this tube. If you do not want stomach contents to leak out while the cap is off and you are attaching a syringe, you have to pinch it together like you would a garden hose to stop the flow.

This is the type of g-tube that we put in on Friday night (June 2009) when Megan's GJ tube fell apart. The hospital floors don't keep the "button" style in their stock because they are made to fit a certain length of stoma (measured from the top of the abdomen to the stomach). There can be various lengths needed depending on the size and weight of the person using the button. This longer style of tube can be used for a short or longer path to the stomach. The square base can move up and down the length of the tube to lay nicely on the abdomen at whatever length is needed.

A syringe or feed bag cap can be attached to the large port on this tube. There is also a med (medication) port that you can use with a dosing syringe just like in the dual port extension shown for the "button" model. (In my experience, this is more of a hassle and it is a lot easier to make messes with medications than it is a help. I prefer to use the larger syringe and port to administer medications.) The orange part is where you place the syringe to fill the "balloon" anchor with water inside the stomach.

Our family chose to use the Mic-Key low profile g-tube for Megan's permanent style. We liked the fact that we could hide it easier and that she would be less apt to tug on it after its placement. The surgeon also faxed our home supply company a perscription for this style to carry with us in case we needed to change it ourselves if it accidentally got pulled out or the balloon broke (or lost its water) inside her stomach. They trained us on how to do this. It is really easy and any parent can do it. And, NO you cannot see inside the stomach - although, when contents come out of the stoma it can be messy. If you have a washcloth or some paper towels ready, you will be fine.

Megan used this type of G-tube until April of 2003 when she needed a GJ-tube placed because of gastroesophageal reflux issues. We still however, carry the same G-tube replacement kit in case something happens to the GJ-tube.

Next up, "All about GJ-tubes," of course.


lorihays said...

Isn't it amazing how medically knowledgeable you've become just through taking care of Megan? We've got some special needs kids and have seen a lot of stuff, but so far (knock on wood), no feeding tubes. So if and when we reach that point, I'm contacting you! :-) Hang in there - you are doing a beautiful job of living an extraordinary life as ordinary as possible!

Lori and the great eight!

Pam Asbury said...

I just found your blog through MckMama. I'm so happy to have found your post on G-tubes. Our little Madeline is having a g-tube placed and Nissen procedure next month. She's been on NG since February, due to aspiration, and while she is improving a bit, it's not enough to put her totally on po feeds. I hadn't had the time yet to research the different styles of tubes, but had heard that the Mic-key's were great.

If you don't mind me asking, what kind of diagnosis (overall picture) does Megan have? Madeline is myelomeningocele T-12 (spina bifida), with all the ripple effects (bowel and bladder issues, lung disease, hydrocephalus, etc.). They actually think that the SB may have been caused by DiGeorge syndrome, though she has not manifested heart issues, etc.

Anyway, I'm rambling, but thanks for your posts. I'll be adding your link to my page, if that's ok.

Pam Asbury said...

So I just "randomly" landed on a blog, and your grandmother was from Kokomo, and you go to Indy a lot! Methinks it wasn't random after all!

We are primarily at St. Vincent's. Upon our first ultrasound showing abnormalities, my doctor immediately referred me there, and as it turns out all of our specialists are there too. We have been to Riley to pick up a special carseat, and to see Dr. Cain once. He now has an office at St. V's, so we're not over there at all now. We have heard good things about Riley though! We are in love with St. V's. Haven't had any bad experiences yet. One thing that I've loved about it is that we always have our own room when we're there. That is such a blessing. I have a friend that has had to be in very cramped quarters with her son (minor procedure) with a child in the next bed who was dying (and did that day). I can't imagine how heart-rending that would be to watch grieving parents.

Thank you for sharing. Sounds like God has worked wonders in your life as well.

Pam Asbury