Here are a few things I wish someone could have explained to me before Raya got a G tube:
1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to the procedure and to the actual tube placed during the procedure.
2. Okay, if PEG is the name of the procedure, then what's a PEG tube?
Usually when someone talks about a PEG tube, they're referring to this style of tube:
|Photo courtesy of Kimberly-Clark|
This whole "PEG" thing was very confusing to me at first because I heard so many words being tossed around interchangably and didn't know what the differences were between PEG, button, and G tube. At our surgical consultation, I thought I heard the doctor say that Raya would be getting a button and then changing to a different button later. It all went in one ear and out the other because I didn't know what she was talking about anyway. Then I mentioned it to a friend who had recently gotten a G tube and she said that Raya would probably get a PEG tube first. See what I mean? So confusing. What I later found out was that the kind of tube the surgeon puts in initially depends on A. surgeon's preference, B. the hospital's preference, C. any specific needs of the patient. Raya never had a PEG tube because our surgeons & hospital only use them if there's a specific reason a child can't get a button initially. Which leads me to...
3. What's a button-style tube and what does 16fr 1.5 mean?
A button-style tube is a much smaller and more descrete feeding tube that can be easily concealed under clothing. There are many, many different brands of G tubes but I'm only going to talk about the most common ones, and mostly just the ones Raya has had or that we've considered using. There are a lot of things to love about buttons. For one, they're smaller and easier to deal with than PEG tubes. (or at least I imagine they are since we never had a PEG tube...)
One of the most common complaints I've heard about PEG tubes is that there's no clamp on them. This means that unless you kink the tube and hold it upright when you're opening the cap, whatever is in the stomach is free to come out. The beauty of buttons is that when you're not using the tube, you can unplug the extension tube and all that's left is a nice little button. You don't have to try and tuck it into clothing or keep it from popping open and leaking, like with a PEG tube. Another bit plus is that extension tubes come with a clamp on them so that when you're giving meds, you can clamp the tube in between syringes to keep everything from coming back out.
The "16fr 1.5" is the size of the button. The "french" size, in this case 16fr, refers to the diameter of the inside of the tube. The 1.5 means that the length of the portion of the tube that goes through the stoma from the inside of the stomach to the outside of the abdomen is 1.5cm long. French size varies from brand to brand but some are as small as 10fr-12fr and as big as 20fr. The stoma length can go from 1.0cm to 3.5+ depending on the size of the patient.
4. What is an extension tube?
In order to use a button, you need extension tubes.
5. What's the difference between Bard, MicKey, AMT Mini One, and Nutriport?
The G tube Raya got at her initial placement was a Bard button. The first time I saw it after she came out of surgery, I loved it. It was small, flat and wasn't taped to her face. Beautiful.
The Bard is VERY low-profile, meaning that it doesn't stick out very far from the abdomen. For a baby who needs to be having tummy time, low-profile is a huge plus. But.
Once she recovered from her surgery and returned to her normal activity levels, however, I realized that I although I loved the concept of a button, I actually hated the Bard button. She got HORRIBLE granulation tissue with the Bard button. Our hospital only stocked 2 sizes, both of which were too big for Raya. The stoma length was too long for her so there was a lot of friction, which led to granulation tissue, and a LOT of leaking from around the tube.
Another problem we had with the Bard was that she was a very active and mobile 8 month old and the extension tubes on a Bard button don't lock into place. The only way we could keep the extension tube from coming out was to use a whole lotta' tape to keep it in. We rotated back & forth between her left side & right side because all the tape was so rough on her skin. (we've learned a lot about all the different kinds of tape since then and I wrote about all of that here and here)
It was unpleasant. The other problem, which was a rather big problem, was that because Raya was on continuous feeds, the extension tube was plugged in 23+ hours a day. That made the backflow valve in the button wear out VERY quickly, so if the extension was not plugged in, whatever was in her stomach was free to flow out. Cleaning the extension tube was very difficult because it meant having to peel off all the tape holding the tube in and trying to keep her stomach contents from pouring out while I did it. While we're on the subject of Bard extensions, another thing that makes the Bard button a little more difficult to deal with is that the extension tubes have to be ordered by french size. Raya had an 18fr (which is the smallest fr size Bard makes, rather large if you ask me) so we could only use 18fr extension tubes. Other types of buttons are not specific to french size.
There is another significant difference between the Bard button and the Mic-Key, AMT and Nutriport: what keeps it in place. The Bard is a non-balloon button, which means that it has a hard bumper on the inside (not sure what it's made out of...plastic, silicone??) that keeps the tube from coming out. AMT also makes a non-balloon button, which I've heard is wonderful. Bard buttons can only be placed endoscopically, and can either be removed endoscopically or be yanked out. Really. That's what our surgeon was going to do with Raya's but she ended up needing an endoscopy anyway so it was cut and the bumper was pulled out through her mouth during the endoscopy. I was glad. Yanking sounded so awful.
One positive thing I have to say about the Bard button was that the special extension tube made just for venting was AWESOME. It had a long spike that held open the internal valve and went all the way through the tube so if there was ANY excess gas trapped in Raya's stomach, all I had to do was plug an empty syringe into the venting tube and pop it into her button and whatever was in there came out. It saved us from a couple of close calls with near-vomiting incidents. :)
|Photo Courtesy of BC Children's Hospital|
What appealed to me about the Nutriport was that the overall size of the exterior portion was close to the size of the Bard, the extensions locked into place, and they even had a little clip that slid over where the extension connected to the button to keep it plugged in. With all of the leakage and disconnects we'd had with the Bard, locking mechanisms greatly appealed to me. Another thing I liked about the Nutriport was that it made very little contact with the skin directly around the stoma. Air flow seemed like a good thing. The drawback of the Nutriport (at least for us) was that it's not a very commonly used G tube, so if we ever had a problem with Raya's tube and had to get it replaced at the hospital, they wouldn't have a Nutriport to replace it with so they'd have to put in whatever they had. Also, if she was ever hospitalized with a Nutriport, I would have had to take our own extension tubes and anything else we'd need for the tube.
In spite of that, I still decided on the Nutriport but before we could even get it ordered Raya ended up needing to have an endoscopy done. It was 5 weeks out from her G tube surgery and her doctor wanted to try jejunal feeds so she took out Raya's Bard button and planned to have interventional radiology put in a GJ. They couldn't get the GJ in, so they sent us home with the only balloon button our hospital keeps in stock: a MicKey.
|Raya's first MicKey button, Oct. 2010|
There is much to love about the MicKey. First and foremost, the extension tubes lock into place, which is a beautiful thing. After several weeks of going through roll after roll of tape trying to keep the extension tube in during feeds, locking extensions were wonderful. Another great thing about the MicKey (and any balloon button) is that because they have a balloon to keep them in rather than a plastic/silicone disk like some of the PEG tubes & the Bard button, they don't have to be changed under anesthesia or even at the hospital. Out of all the button changes and accidental pull-outs Raya has had since she got her first MicKey, there has only been 1 that I can think of that was done at the doctor's office and that was only because we were going from a GJ button back to a G button so the doctor wanted to do that one herself. Every other tube change or re-insertion has been done by myself or Donny. (and the one Ashtyn did a couple weeks ago)
Another great thing about the MicKey button is that because it's so widely used, we didn't have to supply our own extension tubes at the hospital or worry about having to switch to something else in case of emergency. MicKey buttons and all their accessories are readily available. The fact that the extension tubes aren't specific to french size is really nice too. That makes it so that if you run out & need extensions, you can find people who have extras and it doesn't matter what french size either of you has.
There have been some drawbacks to the MicKey button. In the 9 months that Raya had a MicKey (between her GJ tube and the current brand of button) we had at 3 incidents where the balloon spontaneously popped. Once during a nap, once in the early morning when she was still asleep, and once while she was in her high chair. Those are scary, especially the two while she was asleep, because the stoma can start to close within 20 minutes if you don't see it happen and don't put the tube back in right away. To the credit of Kimberly-Clark, if a balloon pops, they are great about replacing the button and they like to have defective buttons sent back to them so they can analyze what may have caused them to fail. They have a great facebook page and are quick to respond, which is nice.
We also started to have a LOT of accidental pull-outs with the MicKey, mostly due to how active Raya is. Several of them happened while she was climbing out of her crib (the little stinker!) and others happened while she was playing. When the extension tube is connected, the MicKey button sticks out almost an inch from her stomach so it is a little more likely to get caught on things than other lower-profile tubes. She also started to have problems with irritation of the scar tissue around her stoma which may or may not have had anything to do with the actual button. Because of all of those factors, we switched to the AMT Mini One earlier this year.
AMT Mini One:
Out of all the G tube buttons we've had so far, the AMT Mini One has been our favorite. On the outside, the button is very low-profile but still has a locking mechanism to keep extensions plugged in. Everything is clearly marked on the tube, including a marking with the recommended amount of water on the balloon port, since the amount varies with the size of the tube. Another great thing about the Mini One is the shape of the balloon. It's more of a flat "apple" shape, so it stays more flush against the inside of the stomach, which can help prevent leakage and also can reduce irritation from pressure around the base of the stoma. The shape of the balloon is supposed to also reduce the likelihood of the tube getting pulled out accidentally and while Raya's has still been pulled out several times, it's much less frequent than with the MicKey button.
For comparison's sake, here are some side-by-side shots of the MicKey and AMT Mini One.
You can see in this picture how much more material there is in the exterior portion of the MicKey button than the Mini One. Another thing you can see in this picture is the difference between the shape of the bottom ends of the tubes. This is one thing that I prefer about the MicKey over the Mini One. It is MUCH easier to get a MicKey button back into Raya's stoma than it is to get a Mini One in. She has a band of thick, fibrous scar tissue around her stoma and the tip of the MicKey button is a little smaller & more pointy than the tip of the Mini One. Out of all the times I've put in her Mini One, there's only been two where I was able to get it in without using a stiffener to keep it straight while I push it back in. It's not a huge negative and the positives definitely outweigh that negative.
Here's another picture that I borrowed from www.amtinnovation.com (which is a VERY helpful website, by the way):
The Mini One balloon doesn't extend as far into the stomach as the MicKey balloon, which has been nice for Raya. There were times with the MicKey where her stomach would kind of suck the balloon down into her pylorus like it was trying to digest it and that doesn't happen with the Mini One. Another advantage to the shape of the Mini One balloon is that the balloon retains its shape with slightly more or less water in it. Essentially, it's adjustable. If you don't have enough water in a MicKey balloon, it comes out. Period.
Another great thing about the Mini One is that you can use MicKey extensions with a Mini One button. Here's what the Mini One extensions look like:
6. What's the difference between a G button and a GJ button?
A G button feeds directly into the stomach. A GJ button uses the same stoma as a G button but has one port that opens into the stomach and one port that opens into the jejunum. Currently there are only 2 GJ buttons on the market: MicKey GJ and AMT GJet. When Raya had hers, the AMT GJet was still an idea on paper in the patent office that nobody had heard of yet, so we had no choice but to go with the MicKey GJ. This is what it looks like without extensions plugged into it when it's brand spankin' new:
Here's what it looks like with the extension tubes plugged in (which is how it looked ALL the time for Raya):
And here's what it looks like when it's not in the stoma:
The exact amount of time will vary depending on the amount of use and the type of tube. Non-balloon buttons can last up to a year or two depending on use. Balloon buttons (like MicKey & Mini One) can supposedly last for 3-6 months, but in our experience, we're DYING for a new one by about 2 1/2. Most insurance companies will only cover 1 every 3 months. The longest we've ever had a balloon button last was one of the GJ buttons Raya had. We made it 5 months before we HAD to have it replaced because one of the ports broke out of it. It would have needed replaced soon anyway because the ports were leaky. Other than that one, the longest we've ever gone without having to change a G tube was about 3 1/2 months.
Those are a few of the things I wish someone had explained to me early on. Learning all the terminology involved with tube feeding is like learning a foreign language and I have a lot to learn still but I know a lot more of it now than I did 2 years & 7 months ago. :)