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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. |
