Interview with the Little Misters About Their Feeding Tubes

Today I thought I would spend a bit of time interviewing my two sons about their feeding tubes. I affectionately refer to them at Linus (younger son) and Charlie Brown (older son). 

We will start with Linus:

Me: Linus, how are you feeling today?
Linus: Good.

Me: So, it's been a little over 2 weeks since your surgery to put in your feeding tube. How is your feeding tube site feeling?
Linus: Good. It is starting to feel like a part of my body ... sometimes.

Me: What is your favorite part about having a feeding tube?
Linus: I don't have to worry about how much I eat. I am happy I don't have to eat a certain amount each day. I can eat how much I want and stop when I want.

Me: What is your least favorite part of having a feeding tube?
Linus: NIGHTIME FEEDS!

Me: What did you feel or think when you heard you would be having a feeding tube?
Linus: I thought it may be very painful.

Me: Were you right or wrong?
Linus: Well when I woke up from surgery it kind of hurt a little bit but then it got better. But it didn't hurt like I thought it would.

Me: I know a lot of parents want to know and a lot of kids who are going to get tubes might like to know, what does it feel like for food to go into your tummy through your feeding tube?
Linus: Mostly I feel nothing. But if the food is cold my throat gets cold.

Me: What do you think of your cool tubie pads?
Linus: I think they are fun but sometimes they sting a little big when I put them on (this is because he is having a tubie issue that the pads are actually fixing, but we aren't fully healed with the complication yet).

Me; Are you glad your doctor wanted you to have a feeding tube?
Linus: Sort of.

Me: Do you think it will help you? How?
Linus: Mm hmm. I really think it's going to give me more energy.

Me: Is there anything you want to tell kids that are going to have to get a tube that might help them?
Linus: They put you to sleep so you can't feel it. I don't think it hurts bad, but let your Mom know and the nurse will bring you pain medicine.

Now we will move on to our older son, Charlie Brown. He has had his feeding tube almost 2 years, so his perspective might be a bit different, thus I will be asking him the same questions.

Me: Good morning, Charlie. How are you feeling today?
CB: I am feeling good. 

Me: So, it's been almost 2 years since your surgery to put in your feeding tube. How is your feeding tube site feeling?
CB: It feels like there isn't a feeding tube site.

Me: What is your favorite part about having a feeding tube?
CB: It takes the medicine for me.

Me: What is your least favorite part of having a feeding tube?
CB: When I get a tube change.

Me: What did you feel or think when you heard you would be having a feeding tube?
CB: (pretends he faints) Crying and begging.

Me: How has that feeling changed?
CB: Now I would cry and beg to HAVE a feeding tube because I feel better. It's like a part of me, like my hair, my eyeball.

Me: I know a lot of parents want to know and a lot of kids who are going to get tubes might like to know, what does it feel like for food to go into your tummy through your feeding tube?
CB: It doesn't have a feeling.

Me: What do you think of your cool tubie pads?
CB: I don't care about tubie pads. I like them to be on, not off.

Me; Are you glad your doctor wanted you to have a feeding tube?
CB: Mm hmm.

Me: Do you think it has helped you? How?
CB: I think it has. It made me stronger.

Me: Is there anything you want to tell kids that are going to have to get a tube that might help them?
CB: Once you get used to it, it's like a part of your body. You get extra sleep because they put  you to sleep to get the tube.

Nature Study and Interview with Linus

We spent Thursday outside for school. I used a nature study at Schoolhouse Teachers to start us off on our fun. It was about evergreen trees. Thankfully my sons and husband transplanted some trees for us last year and they have done quite well. Why do I say thankfully? Well, we have these all over the property but we would have had to walk quite far to see them, these were transplanted down our driveway.

We started by looking at the pine trees down our driveway. We touched the needles, we felt the bark on the branches, and we smelled them to smell that minty smell they produce. Then the boys sat down and drew the tree they found the most interesting. Our younger son was all about this tree. He was drawn to it (no pun intended).

The clover are blooming all over our property, much to the joy of our chickens. They love this yellow clover so much. 

The ladybugs like it a well. It's easy to find them milling around the clover and tall grass.

Just getting outside helps my sons so much. It helps calm them, helps them focus, and just seem to help them overall. So going outside to study in nature is a wonderful thing. We often go outside to do other study time as well. Math in the grass, language arts at the picnic table, or ready by the pond. It's one of the beauties of home education. I love that we have so much land to explore in our home school day and we use it often. But sometimes all we need to do is step outside our front door and take a few steps down the driveway.

Interview with the Little Misters (Linus Edition)

Q: (Me) Can you tell me what your favorite part about being outside is?
Linus: I like seeing what God created. I like all the green stuff and in the winter I like the snow. (poor kid, doesn't get much joy in the winter where we live)

Q: Can you tell me something you have learned from being outside or doing school outside?
Linus: Oh, just how animals create things. Like spiders and how they make webs and birds and how they make nests.

Q: How does going outside make you feel?
Linus: My body feels fresh and good. I get my energy out. Sometimes I get tired. I feel relaxed.

Q: Do you like having school inside or outside better?
Linus: Outside!

Q: Do you have any advice for families that don't go outside for school or anything else you want to add?
Linus: You need to get outside because you can see what God created and just explore. Your kids would feel happy.

And with that he had to go to the restroom and it ended his train of thought as happens with most 8 year old children. I can't stress enough how important going outside is. From the basics of vitamin D, and just breathing in fresh air to the way our bodies change when we are in nature, things we can learn, and how we can interact in God's creation. God designed us to be in nature. The garden of Eden was not the high rise of Eden. So, take a minute and get outside today. I know we will be doing just that.

Feeding Tube Awareness Week - Day 5 (How My Son Feels)

Today I decided that I would share my son's thoughts on his g/gj-tube. A little back story before I get started:

Our son is 10 years old and got his tube 16 months ago. He's your typical little boy. He loves all things Lego, anything to do with robots, Lego, reading Calvin and Hobbes, and did I mention Lego. He has a small thing for Lego. His favorite subject in school is handwriting and he is learning to play the drums.

He also has quite a few medical needs and special needs that prevent him from being able to eat enough calories to sustain his life. 16 months ago his doctors decided it was time to place a feeding tube in the form of a gastrostomy tube.

A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow. - Kids Health

    A G-J tube is a single tube that passes through the abdominal surface, into the            stomach and down into the second part of the small intestine (the jejunum).  The tube stays in your child's stomach because there is a balloon inflated inside the  stomach to help “hold” it in place.

Below is my interview with him. I had a fun time doing this and I think I might chat with my kids more often for my blog. They seem to have a lot to say.

Our son started with a g-tube. After a while, and for no reason we can figure out, he stopped tolerating his feeds no matter how slow we went. We eventually moved him to a gj-tube. This has a longer tube that goes into the upper portion of the small intestine through the opening between the stomach and small intestine.

G-tube (Top left picture)

Mic-Key GJ-Tube

Now, back to our interview.

Q: Buddy, do you mind if I interview you for my blog for Feeding Tube Awareness Week?
A: Do I get paid? (incredible laughter by my son - you will learn he's quite funny).

Q: How did you feel the day your doctor said you would be getting a feeding tube? Do you remember how they showed us a doll with a tubie in her tummy and let you play with it and learn about it?
A: I was nervous because who wants a hole all the way to their stomach and then put a tube in it? I know I don't. But now I am used to it.

Q: How do you feel now that you have been living with a feeding tube for a while?
A: I just do what I can. I play sports (he's on a team for kids with differing levels of ability), irritate my brother (and with that the question was over because he couldn't stop laughing).

Q: Do you like your feeding tube?
A: Uh huh. It feeds me when I don't feel like eating or can't eat.

He stopped me at this point and said, "Mom, you are forgetting an important question I want to answer."

I asked what that was.

He said, "What did it feel like the first couple of days after I got my tube?"

Q: OK buddy, what DID it feel like the first couple of days after you got your tube?
A: I was kind of nervous and felt like I was going to throw up (we later figured out he was refluxing due to not tolerating his formula and, once we changed, he stopped that). But I didn't want to barf because I was afraid it would hurt.

I also felt important because everyone was sending me presents and flowers and the nurses were all doing things for me. It was fun. (leave it to a kid)

Q: What advice would you give one of your friends who was going to get a feeding tube?
A:  You get used to it.

Q: What is the best part of a feeding tube?
A: The J part of my GJ-Tube is cool. But it's kind of gross that it goes into my ... let's talk about something else. I can eat all the candy because Mom gives me nutritious stuff in my tube. KIDDING MOM!!! (more laughter)

Q: What is the worst part of a feeding tube?
A: Getting it changed. They stick something in the hole in your stomach. (if you can't tell, that just freaks him out when it's the center of attention)

Q: Is there anything else you want to say?
A: Yeah, you should do these more often. I have a lot of things to tell people.

So, there you have it from the horse's mouth. He really is just pretty cool with the whole thing. He hates changes, even when it was a simple G-Tube and we did it at home. Other than that, he's pretty relaxed about it and I think he forgets it's even there. It's just part of our daily lives that he's learned, over the last 16 months, to work with each day.