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Saturday, February 11, 2012

Feeding Tube Awareness Week- Day 7

The final topic of FTA week 2012 is: Show us your awareness video / Share your awareness idea! How have you been raising awareness this week? What else could we do to raise awareness?

A couple of weeks ago, the kids and I were talking about the fact that Feeding Tube Awareness Week was coming up and what we could do to help people learn about feeding tubes. We came up with the idea that they could do presentations in their 1st and 3rd grade classes at school. I emailed their teachers and explained what we wanted to do and why, and both of them graciously agreed to let us take a few minutes last Friday to teach their classes about feeding tubes. We video taped them doing the presentations in class, but they were a little too far away and the sound on the video didn't come out very good, so we did it again at home. The bummer about that was that you can't see the PowerPoint very well on the tv. Since it didn't work out quite as planned, I'll post the slides & speaker notes from the presentation and then post the video below. Here is what they had to say:

 Raise your hand if you know what a feeding tube is. We want to teach you about feeding tubes today so that if you ever meet someone who has one, you will know that feeding tubes aren’t scary and that they are something that helps people get food and water when they can’t eat and drink it with their mouths. Some people need glasses to help them see, some people need wheelchairs to help them move around, and some people need feeding tubes to help them eat.
 When our baby sister Raya was 2 months old, she was having a very hard time eating. She threw up every time she ate and that made it so she didn’t want to eat anymore. Imagine how you would feel if you threw up every time you ate. Would you still want to keep eating?

Her doctor was very worried about her so she had our parents take her to the hospital. Since she wouldn’t eat, the doctor put a feeding tube in her nose so that we could still feed her. The first time we saw Raya with the little yellow tube going into her nose, we thought it was a little scary. She looked different with a tube in her nose. We were kind of afraid to touch her because we didn’t want to hurt her or accidentally pull the tube out. After a while, we got used to seeing Raya with the tube and it didn’t look strange to us anymore.
 Some people can’t eat food or drink liquid with their mouths so they use feeding tubes instead. Feeding tubes are a way to get nutrients and liquids that our bodies need into someone’s body without them having to eat food or drink liquid. The 3 main types of feeding tubes are nasogastric or NG tube, gastrostomy or G tube, and gastrojejunostomy or GJ tube.
 An NG tube is a long, skinny tube that goes through the nose, down the throat, and into the stomach. NG tubes are held in place by pieces of tape on the cheek. This is what it looks like. A nurse at the hospital taught our mom how to put Raya’s NG tube in so that she could put it back in whenever Raya accidentally pulled it out.
 A G tube is for people who will need a feeding tube for a long time. It has to be put in with surgery. This is what it looks like.
The surgeon makes a hole called a stoma that goes from the outside of the body into the stomach. Then he puts the G tube through the stoma. There’s a balloon on the end of the G tube that goes inside of the stomach, and when it’s filled with water, it keeps the tube from coming out.
If Raya’s G tube accidentally gets pulled out of her stomach, our parents can put it back in by taking the water out of the balloon, putting the tube back in the hole, and then filling the balloon back up with water.
A GJ tube is a lot like a G tube except that there are 2 places that formula can come out of a GJ tube and only 1 on a G tube. Here’s what a GJ tube looks like.
On a GJ tube, there is a gastric port that opens into the stomach and a jejunal port that goes through the stomach and into the small intestine. This kind of tube is for people whose stomachs don’t work like they’re supposed to.
Since a GJ tube has a long skinny tube that has to go into the intestine, the only person that can put it in is a special doctor at the hospital.
 There are a lot of reasons why people need feeding tubes.
Illness can make the body stop digesting food like it’s supposed to.
Weak muscles inside the throat can make it dangerous to eat because food can go into the lungs where it doesn’t belong.
When eating is painful, the person learns that eating hurts and might stop doing it like Raya.
Some people are allergic to so many foods that there’s nothing they can eat without getting sick.
Some people have physical disabilities that keep them from being able to feed themselves or eat food safely.
People who have cancer in their mouth, throat, or digestive system might have to have those parts of their bodies removed to get rid of the cancer.
Some people have strokes or brain injuries that make them unable to eat.
 To use a feeding tube, there are a few things you need. When we feed Raya, the first thing we do is hook an extension tube to her G tube just like this doll has.
Most of the time, we feed Raya a special formula that comes in a can and we use a feeding pump to feed it to her.
Here’s what her feeding pump looks like. We put the formula in a special bag and program the pump to feed Raya at the right speed. We can either put the feeding pump into her little backpack or we can put it on the IV pole.
Sometimes she just needs a little bit of extra water or some baby food in her stomach, so our mom uses a syringe like this to put it in Raya’s feeding tube instead of the pump.
 Sometimes when people see that Raya has a feeding tube, they have a lot of questions. We want to help people understand and so we like it when people politely ask us questions about Raya. Here are some of the questions that people ask us.
*Does it hurt? When Raya first had her surgery to put the tube in her stomach, it did hurt for a couple of weeks while it healed. Now that she’s had it for a long time, it doesn’t hurt her anymore.
*How long will Raya need a feeding tube? Everyone that has a feeding tube is different. Some people will need their feeding tubes for their whole lives and some won’t. As soon as Raya learns how to eat enough food and drink enough water to be healthy, then she won’t need her tube anymore.
*Can she still play like other kids? In most ways, Raya is just like any other kid her age. She likes to play at the park and be silly and do all the things that other kids do but the thing that’s different about Raya is that sometimes she has to wear her feeding pump in her backpack while she plays.
*Can she go swimming with her feeding tube? As long as she swims in clean water, Raya can go swimming.
*Can she eat food with her mouth? Raya can eat some food but not enough to make her grow. Right now, her favorite foods are sour cream and pita chips.
*Does anyone have any other questions for us about feeding tubes?

Here's the video. Pardon the coughing fits, allergy season is in full swing and is brutal on these two. And please overlook the nose picking. He can't help himself, he's just a boy. :) I couldn't get the volume adjusted so you'll probably have to turn it up to hear them.


*side note: because this presentation was for young children, I left out a couple of types of tubes. OG= orogastric (like NG only through the mouth instead of the nose), NJ=nasojejunal, ND=nasoduodenal, J=jejunostomy

Presenting a topic like this to 6 and 7 year olds is tricky. :) They did their best to listen to Cole and when I came to the front to help him with Q&A time, we got "questions" like this:
"One time, I fell on the sidewalk and scraped my elbow and it hurt really bad."
"My brother broke his leg once and had to go to the hospital."
"Can she still blow her nose?"
Gotta love 1st graders! :)

The 3rd graders, on the other hand, had SO many thoughtful questions to ask. They were so good during the whole presentation and you could tell that they were genuinely interested. When it was over, I came to the front to help Ashtyn answer questions and I was so impressed by the things they asked. I wish I had all of them written down but here are a few that I can remember:
  • How often do you feed her?
    • 4 times a day through the feeding tube (with the pump)
    • OR if she eats enough calories combined to equal 250, we can eliminate one of the 4 tube feeds
    • We offer her food 4 or 5 times a day (mealtimes & snacks)
  • Is it hard to find clothes for her with her tube?
    • It was much harder when she was younger because onesies & zippered jammies don't give good access to the feeding tube
    • Now it's just hard to find her warm winter jammies that don't have a zipper on them (I don't like cutting holes in her clothes!)
  • When you just got her out at the hospital, could she breathe?
    • She never had trouble breathing, she just had trouble eating and not throwing up what she ate
  • So if she wants to eat chips, can she put them in her mouth?
    • Yes, she can and does eat chips :)
  • Does the tube ever come off when she gets older?
    • Yes, when she gets good enough at eating that she can eat enough calories, drink enough fluids, and take her medicines by mouth, then we'll be able to take the tube out.
  • Can she only have certain foods?
    • Right now there are only certain foods that she likes, and her eating skills aren't quite good enough to eat things that take a lot of skill to eat (like meat) but she doesn't seem to have any food allergies anymore.
  • If she doesn't want to eat something, do you have to put it in the blender and put it in her tube?
    • We don't always, but we CAN put real food in the blender and put it through her tube. We've fed her all kinds of vegetables and fruits through the feeding tube.
  • How did they get the tube in?
    • The doctor gave her medicine to make her sleep and then they used a sharp tool to make a little hole where the tube needed to be. Then they put the tube in the hole and on the inside, they put a piece of plastic on to keep the tube from coming out while the cut healed.
Like I said, I really wish I had a list of all the questions they asked because they had a lot of great, insightful questions. One girl even noticed that around the heart on our "I ♥ a Tubie" shirts, there is an extension tube. I was impressed that she had paid such close attention that she noticed it. :)
This presentation was such a great experience for our family! We really felt like teaching elementary school kids about feeding tubes was a great way to promote positive awareness. Kids CAN be cruel, but if they are given the right information, they can also be kind and understanding. Often more so than adults. We are so grateful that we had this opportunity and hopefully next year we can make the presentation to a larger audience.

2 comments:

  1. Great job, Cole and Ashtyn! I love it that you can read all those BIG words!

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  2. Thank you for sharing this! It is wonderfully put together and will be a great resource for other families. I am going to share this post with a parent support group for children with feeding disorders that we belong to. Many of the families have children with feeding tubes. I gave a very simplified presentation to my daughter's preschool group and am glad to have this template to use as she gets older. You must be so proud of your children for being confident to share this information with others. Thanks again!

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