Adventures In Tube Feeding: G-Tubes & Autism Part 3
In Part 1 and Part 2 of Adventures in Tube Feeding: G-Tubes & Autism, I shared my family’s recent medical emergency. My 9-year-old son, Will, who has severe autism and is nonverbal, went on a hunger strike, and as a result, ended up in the hospital for nearly two weeks, ultimately getting a feeding tube called a microvasive G-Tube. Now, while he is undergoing extensive feeding aversion therapy, Will can get all the nutrients he needs through what is essentially an access port to his stomach.
But using a G-Tube is about more than opening a little port, plugging in a syringe, and adding food. Much much more. In fact, so much more that I was pretty overwhelmed in the first few days. Thankfully, we had a lot of help in the hospital. Most of the initial help with our G-Tube gear came from this lovely RN named Melissa who visited daily, sometimes twice, to help us get the hang of all this new equipment. We actually started by practicing on our G-Tube bear, whom we named Brooks.
A little side note here ... At Lauren's hope, we have been doing some fun work for Kids With Courage, a local Type 1 Diabetes charity. They provide crates filled with diabetes-related resources to children hospitalized at Children’s Mercy hospital, being diagnosed with Type 1 Diabetes. We designed and provide silicone medical ID bands for these crates so that kids can go home with a medical ID that will last a while, until they have a chance to get one they really like and want. So the reason for this digression? Those T1D crates come with the very same bear. Theirs are lighter and don’t have a “button,” but otherwise, they’re the same bear.
Being on the receiving end of a bear like that, especially because I’ve heard from so many Kids With Courage families that the bears are the very first little bit of comfort they grasp onto in the hospital, well, it was rather surreal. Even more surreal? Turning around and realizing that Will was hugging Brooks. I had never seen him snuggle a stuffed animal in his life. Ever.
What Do I Need For My New G-Tube?
There’s so much stuff! Thankfully, G-Tubes are more common than most people think. It’s just that the little “button” on a tube-fed person’s abdomen is so small and flush to the skin that it’s unnoticeable under clothing. In fact, when I went on Facebook and shared the news with our family and friends that Will was getting a G-Tube, a friend emailed right away to tell us that his son, whom we had known for years, has a G-Tube. I honestly had no idea!
So because G-Tubes are pretty common, Durable Medical Equipment (DME) companies tend to have a pretty good system for getting families equipped. Here are the basics we went home with:
- The button itself, of course. People call the outer portion of a G-Tube (the part that shows and rests against the skin of the abdomen) a “button.” It resembles the closure on an inflatable pool toy in that it’s silicone and has a flip-over button closure.
- The feeding extensions. Feeding extensions are the tubes that connect to the button on one end. On the other end, these extensions have a port. This port allows for access with small syringes of water for flushing the tube and button and large syringes of formula or blenderized food (manual bolus feeds). The port also connects to the end of a tube-feeding bag’s extension tubing. Basically, if you’re using a feeding pump, there is an IV-looking bag (replaced daily), which has a long tube trailing from it. The tube runs through the pump, and at the end, it terminates in a connector that fits into the feeding extension port.
- The pump. Once we got home, we quickly learned that feeding pumps are great and a big pain in the neck. They beep. They’re fussy. They take forever to get a full feeding in. On the flip side, if you are choosing to do, “continuous feeds,” meaning that you are hooked up at all times, getting a constant stream of nutrients (the pump can go in a special backpack when you’re out and about), then the pump is fantastic. It’s also great for nighttime feeds and daytime “bolus” (as opposed to continuous, bolus means a larger feeding that’s done repeatedly through the day) feeds while the body is adjusting to tube feedings. For us, once Will adjusted to the bolus feeds, we moved to the syringe method during the day in three bolus sessions at mealtimes and then one slower bolus with the pump after he goes to bed at night.
- Pump Bags: These are meant to be changed out daily. Our DME company delivered a week’s worth to the hospital and shipped the rest of our first month to our home. After that, they have auto-refill setups so you just get shipments once a month. Ask your DME rep. Word to the wise: This person is very, very important. She can advocate for you with the insurance company. Get to know her.
- Syringes. Lots of syringes. You will need syringes in all different sizes. You will have favorites and ones you hate. We won’t judge.
- Split gauze pads. These are awesome. Ask your nurse for a big box to go home with, and then ask your DME company to send more. We found they were covered by insurance. They’re basically 2” squares of gauze that are pre-cut halfway up the middle so you can dribble some saline on one and tuck it easily behind and around the button if your doctor says to do so. As it was explained to us, this basically softens up any icky stuff that shows up, so in a half hour when you remove it, you just wipe everything away and you’re all clean. This way you’re not irritating the skin, trying to scrub.
- Formula. We intend to blenderize food for Will down the road and supplement with Real Food Blends (Side note: Lauren’s Hope is not affiliated with Real Food Blends. The owner is a customer of ours, and we have featured her family and company here on the blog, which is how I know about this option.). However, in the beginning, for at least the first 12 weeks, our GI specialist and surgeon were adamant that we use formula. They want to know for certain that Will is getting 100% of the nutrients he needs in the most easily digestible format possible so that there is minimal stress on his system and the new G-Tube. Once he is healed and in better health, though, all of the doctors were fine with us doing a blenderized diet. To me, it makes sense to give whole foods over processed formula if at all possible.
- A medical ID bracelet. You knew this was coming, right? Will already wore a Lauren’s Hope medical ID bracelet because he has autism, food sensitivities, and allergies, and he is nonverbal. But now we needed to add something new: Microvasive G-Tube. Why? Because a G-Tube isn’t obvious, but it is something medical personnel need to know you have right away in the event of a trauma. Thankfully, Will has an interchangeable medical ID bracelet, so he just needed a new medical ID tag! Easy peasy. Here’s what I engraved:
- Will Cohen (then date of birth)
- Autism Nonverbal GFCF Diet
- Microvasive G-Tube
- Dad (phone number)
- Mom (phone number)
We have also found that it’s helpful to have a baby bottle rack to dry all the little bitty pieces and parts that go along with tube feeding, such as syringes and adapters and tubing. You need lots of paper towels (not cloth – you want to be as sterile as possible), and, side tip, apparently Joy dish detergent is the best for cleaning all these little things. At least that’s what our nurses said, and they were awesome, so I am going with them on that.
We’ve been home a few days now, and I’ll continue to share our story as time goes by. But for now, we are doing ok. I do want to remind everyone that I am most definitely not a doctor, nor is anyone in the office at Lauren’s Hope. So all of this is my experience with my son and it should not be construed as medical advice. Always talk to your medical practitioner about your personal situation. Do you have a tube-feeding story to share with us? We want to hear from you!