Tube Feeding Tips and Tricks (THE MOM WAY)

LKnopps
January 2007

For over 16 months, my husband and I did everything in our power to avoid a fundo and G-tube for Ava, but in the end, she made our decision for us. One month after her fundo, our GI placed a PEG tube endoscopically, and 3 days later, they sent us home. I said, "Wait, but I'm not a nurse!" I had no idea how to care for a baby with a feeding tube! Ooops...oh well! I was on my own...

Before Ava got her PEG, I new zip, zilch, zero about tube feeding, and had hoped I never would. I was a nervous wreck bringing her home, and a zillion questions were zooming through my head. Could she get it wet? How was I going to clean it? Would it leak? Should I bandage it? How was I going to keep her from pulling on it, or getting caught on things? Aaack! Luckily, with the help of some amazing veteran tube feeding moms, I figured it all out, and yep, they were right...it's become second nature. Now, I just want to share what I've learned in the last few months, all in one convenient spot, to hopefully save parents new to tube feeding a few headaches.

• Care and Cleaning: We went home from the hospital on day 3 after the placement (a little longer than the average stay), and we got the go-ahead for a full bath that evening. Since the PEG tube was roughly about 10 inches long, I was really nervous that it was going to get caught on something, or that she was accidentally going to kneel on it. We had an awesome nurse who really worked with me and listened to all my concerns, and when I brainstormed the idea of some sort of "tube top" to her, to keep the tube and it's bumper close to Ava's skin, she helped me find just what I was looking for. She brought me some tubular mesh gauze called burn wrap (very stretchy!), and I snipped off 3-4 inch wide pieces for Ava to wear so the tube wouldn't hang. These were especially useful in the tub, because she could play, the water could wash over the site, and I could make sure she wouldn't step on it. I found more of the gauze I needed, sold by the foot, at a local medical supply store, for about $1 per foot. When we got out of the tube, I always cleaned the stoma (the actual site itself), and made sure to let it air-dry. If it looked a little leaky, I would split a 4x4 gauze pad diagonally halfway through, to make a little bandage to keep it dry...a great tip from both Becky and Amanda.
• Granulation Tissue: Yuck! When Ava first developed a bit (and it wasn't even much), I immediately thought it was a raging infection, because it looked wet, white, and red. However, when I took her in to see our ped, he proclaimed it to be healing "beautifully"...huh? Granulation tissue is actually new skin forming around the stoma to help close the "hole", so it will heal up nice and tight around the tube. When it doesn't dry up, or the tube leaks stomach contents that can irritate the newly forming skin, then it becomes a problem. Luckily, Ava's responded well to the gauze pads we used to keep it dry and a few applications of a great ointment called Calmoseptine, recommended by Krista. I found a huge tube of it at Walgreen's for about $8, and I will sing its praises! It contains calomine lotion and a cooling agent, so immediately upon applying it, they get a little relief. It also helps dry the tissue up, while also forming a zinc oxide barrier to protect it. Good stuff! It the problem persists and is really painful, the doctor can "burn" it off using silver nitrate.
• Spills: A few words to live by...CLOSE THE MED PORT!!!! Sheesh! I can't tell you how many times I've hooked Ava up at night, only to be awakened around 3 am by a soaking wet child with a Pediasure mohawk. If the med port isn't closed, or the "Christmas tree" end of the bag that connects to the PEG or extension set for the button comes undone, watch out! For example, Christmas Eve 2006...Santa had just finished setting up and was jumping back into his sleigh, when all of a sudden, he slipped on something...a river of Pediasure had run through the grout in our tile, from Ava's room, into our hallway. What a disaster! I highly recommend taping the connection together...save yourself the laundry, the hassle, and the expletives!
• Coke: Yes, that's right, Coke. I thought it sounded crazy too, but Ava's PEG was starting to get really gunky and cloudy looking, about 2 weeks in (we still had 4 weeks to go until she got her button). This is actually a tip from the home care company at our children's hospital: Flush the tube with 10-20 cc of Coke to remove any buildup. Makes sense, huh? We all know what soda can do to your teeth, so why shouldn't it be able to remove buildup from the tube? Kind of like a sugary version of Drano. I found it worked best if I added some to the tube, clamped it and closed the top, and let it sit for a bit. Repeat until it's clean. This is great for clogged tubes and cleaning extension sets also.
• Free Fluid: Since formulas provide complete nutrition for children, it would make sense that so much formula would also provide proper hydration, but that's not always the case. Make sure to check with your doctor or dietician about adding additional water or Pedialyte to your child's formula feeds.
• The Clamp: The clamp is your friend!!! The very first gravity bolus I attempted to give Ava in the hospital was a major DISASTER! I had unclamped the tube, as soon as I inserted the syringe, and because she was very tender and also pretty scared, the screaming forced a fountain of stomach contents all over the bed, Ava, the nurse, my husband, and myself... ALWAYS clamp before opening...you never know what may come out! My husband fed Ava a few bites of his Berry Krispies one morning, and was then shocked to see a rainbow of pink and purple inside the tube during a bolus. I think Becky has also reported seeing Oreo remnants.
• Bags: These are pretty expensive, but I've found that if I wash them well right after a feed, I can make one last for two days, and I know others can make them last for up to a week. I use really hot water and just run it through. We use one extension for Ava's mic-key button per week, and I clean it the same way. Also, there's a brush for the extensions that the supply companies can send you that makes cleaning easier as well.
• Securing the tube: I've heard several ways to do this. My husband and I used the "tube top" to keep the bumper on Ava's PEG close to her skin, and then we kept the end secure by velcro-ing it in the tab of her diaper. I switched sides every diaper change so it wouldn't be pulled to one side or the other. Several other moms used a method that involved safety pinning a piece of tape wrapped around the tube to the waistband of the child's pants, so there was plenty of slack. When Ava had an NG-tube briefly, it was taped to her face and ran down behind her ear. We taped it to the middle of her back to keep it out of her way and her reach, and this worked pretty well for us.

Now, as we all know, I'm definitely not a doctor, and I try not to even play one here on InfantRefluxDisease.com, but I do consider myself Dr. Mom now. Once you get the hang of tube feeding and settle into a routine, like I said, it really does become like second nature, and you'll feel like an old pro in no time...it just takes some getting used to. What I thought was going to be so daunting, has really turned out to be no big deal, and having Ava's G-tube has made our lives much easier in the long run.