GTubes: What Are They and Why Do Some Kids Need Them?

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Energy is vital to any superhero's mission, so growing heroes must get their daily balance of nutrition to keep their adventures going!

One of the most important ways a kid can get their energy is from nutritious food and a healthy diet. Typically, this is accomplished by eating a healthy balance of proteins, vegetables, starches, and fruits by mouth. But what about kids who can't eat by mouth? How can they be assured that they receive the appropriate nutrition? One way that some kids get their food is through a GTube.

A GTube, or Gastrostomy Tube, is a surgically placed device in the belly that directly pipes enteral (liquid nutrition) formula into the stomach.

Kids need GTubes for different reasons. Sometimes, GTubes are placed when a child has difficulty swallowing, has congenital disabilities that interfere with their ability to eat, or has difficulty meeting milestones regarding their weight or nutrition absorption.

GTubes are placed only in extreme situations when a child cannot physically have nutrition through their mouth. Children and parents first meet with their doctors, Gastroenterologists, and care teams. Before, during, and after the procedure, the child and family are given instructions about GTube care, feedings, and potential problems they can run into. All of this is vital to proper care and use of GTubes.

GTubes can be a pivotal part of a child's developmental progress. But sometimes can be a point of frustration. Having the ability to eat by mouth compromised can be an uncomfortable thought, and those feelings are valid. An important note is being able to relate to your child's needs for growth and adequate nutrition. How you and your child approach life with a GTube are strictly personal to your family's journey. Utilizing the knowledge of your healthcare team and other parent-led GTube communities on social media can benefit you.

Every child deserves the opportunity to thrive and be Super, and that starts with healthy nutrition!

Check out these GTube-themed and Nutrition stories we've enjoyed, and feel free to start the conversation in the comments below!

Happy New Year!

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Hello to the new year!

2023 is here and we’re so excited to share our plans for the coming year.

But first, let’s catch up with what the SuperCaptainBraveMan team did in 2022!

This year, Kyle turned 16. And by the end of the year, he has grown to an amazing 4 feet 4 inches. Which means that sooner rather than later, he’ll be taller than both Nurse Brigette and Nurse Leah!

2022 was a year of collaborations for us.

Partnering with O & P in Motion, 2 murals featuring SuperCaptainBraveMan are now proudly displayed on the outside of their Los Angeles location.

We also had the privilege to collaborate with Marc Laver and his initiative, Jonnie and Friends. This inspiring initiative led the restoration of Universal Universe’s All Access Playground. We are so thankful and honored to be part of such a lovely project.

And we here at SuperCaptainBraveMan want to send out a special thanks to Fenton Primary School for hosting our first live book reading since the pandemic. We love sharing our stories with kids and have missed seeing all of the excited faces live and in person.

New Year, New Merch!

We’ve added more items to our shop! In addition to our T-shirts, you can now order hats, beanies, PJ pants, and “One Brave Kid” shirts. Even our four legged friends can get their SuperCaptainBraveMan on with our doggie kerchiefs featuring Mochi!

Head over to our shop to grab some garb to dress in SuperCaptainBraveMan head to toe!

This year—more than most—reminded us all that we are beyond grateful for each and every one of you. Your support, comments, and likes mean the world to us.

Our continued love for creative stories that showcase inclusivity are at the heart of everything we do. From diabetes to Down Syndrome, SuperCaptainBraveMan strives to teach kids about kindness, empathy, and the power to connect to the superhero inside.

Happy 2023!

Comment below with your New Year’s resolutions and hopes for the coming 12 months.

Stay safe and stay brave, SuperCaptainBraveFAM!

World 1-2: What is CPR?

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Hello, SuperCaptainBraveFAM!

Last week, we learned about the lungs and how we breathe. Today, we’ll learn about a way we can help someone in case they suddenly can’t breathe on their own. At least, until emergency medical personnel arrive.

Cardiopulmonary means relating to the heart and lungs.

Cardiopulmonary means relating to the heart and lungs.

This process is called Cardiopulmonary resuscitation or CPR.

Cardio means heart.

Pulmonary means lungs.

Resuscitation means to resume or revive.

Sometimes, a person can collapse very suddenly. Because of an accident or physical problem, their heart can stop beating and their breathing will pause as well. This can be very bad because the reason we breathe is to exchange carbon dioxide for fresh oxygen. And oxygen is essential to creating energy in our bodies.

In World 1-1, we learned that the lungs inflate and deflate when we breathe. This allows air to travel into our bodies from our nose and mouth. Muscles move to expand the space in our chest and exchange carbon dioxide for oxygen.

The heart is responsible for pumping blood throughout the body and is very important!

Resting in our chest along with the lungs is the heart. The heart needs to be close to the lungs because it’s the muscle that needs fresh oxygen the most. It pumps and pushes blood to the rest of the body and has the most important job ever.

The heart is responsible for pumping blood throughout the body and is very important!

Thanks to the heart pumping oxygen rich blood in our bodies, we can do things like dance, walk, work, play with our family, and sleep soundly.

So, when there are problems with our hearts, there are very serious problems with our bodies.

Modern CPR as we know it was introduced to the world in 1960 by Dr. William Kouwenhoven, Dr. James Jude, and Dr. Peter Safar. Thanks to the work of this team, they made it possible for everyday people to help those that collapse and need help.

“…anyone, anywhere can initiate cardiac resuscitation procedures. All that is needed are two hands.”

– Dr. William Kouwenhoven

According to the American Heart Association, there are two types of CPR.

Some people trained in CPR carry special one time use mouth guards to make mouth-to-mouth resuscitation safer.

The first is known as conventional CPR.

Some people trained in CPR carry special one time use mouth guards to make mouth-to-mouth resuscitation safer.

It’s the kind of CPR usually shown in TV shows and movies. Chest compressions are done along with mouth-to-mouth rescue breaths. It’s a multi-step process and one that you can get certified in after taking a CPR class.

This type of CPR is performed by healthcare professionals and others certified in CPR. It’s used to help people of all ages in an emergency situation.

The second type is called compression-only CPR or Hands-Only CPR.  

This kind of CPR doesn’t require any mouth-to-mouth. Since there is no mouth-to-mouth, Hands-Only CPR is a great way to help in an emergency if direct contact with the other person’s mouth isn’t advisable.

This type of CPR can be performed by anyone and is recommended only for adults & teenagers who suddenly collapse in out-of-hospital situations.

Unlike conventional CPR, Hands-Only CPR is made up of 2 steps.

  • Step 1: Activate the emergency response system.

    • Call 9-1-1 or have someone nearby do that.

  • Step 2: Push hard and fast in the center of their chest.

    • The best way to keep track is to push to the beat of a fast song like:

      • “Stayin’ Alive” by the Bee Gees

      • “Sweet Home Alabama” by Lynyrd Skynyrd

      • “MMMBop” by Hanson

      • “Just Dance” by Lady Gaga

      • “Hips Don’t Lie” by Shakira

If you still have the model lung we made in World 1-1, you can see how Hands-Only CPR works to inflate our lungs. The movement of chest compressions also helps mimic the way the heart beats and keeps the blood moving in our bodies.

Hands-Only CPR Example Using the Model Lung Experiment

According to the American Heart Association, immediate CPR can double or triple the chances of survival after cardiac arrest. (Cardiac arrest is when the heart malfunctions or stops working correctly.)

In fact, another study showed that sixth graders are able to perform Hands-Only CPR correctly once shown how to do it. CPR training is a high school graduation requirement in 34 states so far. In our home state of California, it’s been a requirement since 2018!

There are several different jobs that require CPR certification besides healthcare providers. Firefighters, police officers, child care providers, and flight attendants all need to learn CPR in the event someone collapses.

But Hands-Only CPR doesn’t need certification!

There are even kiosks that give a quick lesson on Hands-Only CPR located in different airports across the US. The lesson includes a video introduction and tutorial. As well as an interactive practice session on the manikin attached to the kiosk. A list of airports with these kiosks can be found here.

Watch below for a quick video on how Hands-Only CPR works. So easy, even Ken Jeong can do it!

Don't be afraid to use Hands-Only CPR, you could save a life!

Getting CPR training is a useful skill for everyone to have. In person classes might not be available right now, but once they are, we fully encourage everyone to get CPR certified.

After learning how the lungs work and how important oxygen is for us, knowing how to give aid in an emergency is a great way to help save a life.

So, remember to stay safe and stay brave, SuperCaptainBraveFAM!

The journey continues next week on…

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World 1-1: How We Breathe

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Hello, SuperCaptainBraveFAM!

I’m Nurse Leah and I’d like to talk about breathing. Why do we do it? Why do we need it? How does it all work?

The answer to the first two questions is simple: we breathe in to get fresh oxygen into our bodies and we breathe out to get rid of carbon dioxide and other waste gases.

Oxygen is an essential part of the process our body’s cells use to create energy in the most efficient way. A byproduct (or result) of that is carbon dioxide (CO2)—which is dangerous to keep in our bodies and that’s why we need to breathe it out. The process of using oxygen to make energy in our cells is called aerobic respiration.

There’s a way for our cells to get energy without oxygen, but it actually takes more effort and the byproducts of that process can be more harmful to your muscles. That process is called anaerobic respiration.

So, oxygen is really, really important for our bodies to work at its absolute best.

And the place where our body exchanges carbon dioxide for fresh oxygen is right there in our lungs!

That brings us to the third question I started with: How does it all work?

The parts of the body responsible for breathing are collectively called the Respiratory system. That’s because it’s a system of organs and parts of your body that work together to get some of the materials needed for aerobic respiration.

David, from A Kyle Adventure Book 2: Signs of the Season

So, let me introduce you to the parts of the Respiratory system, starting at your head with the nose and mouth.

When we breathe, air usually comes in through our nose or mouth. The truth is that the passages that make up the inside of your nose and mouth are connected. That’s why liquid comes out of your nose if you laugh too hard while drinking.

Have you ever gone out when it was especially cold and every time you breathed, it hurt your chest a little? Or has it ever been so hot and dry that you can practically taste the heat?

It’s because the difference in air temperature from your own body temperature contrasted a bit too much. Your body likes everything inside to stay pretty much the same temperature and works hard to maintain that. The inside of your body also likes to stay moist and doesn’t like to dry out too much—think of the inside of your mouth—and so one job of the mouth and nose is to warm and moisten the air entering your body.

Another job is that they keep particles that don’t belong in the body out. Things like dust and pollen get stuck in our nose hairs and sneezed out. Or the back of your mouth catches the bigger particles and you can cough them out.

Just a quick reminder to please cover your nose & mouth when coughing & sneezing, use tissues to wipe your face, and wash your hands afterward. Doing these things can help keep yourself clean and prevent the spread of diseases that take advantage of how our Respiratory systems work.

After our nose and mouth, the next part of the Respiratory system is the trachea.

The trachea is tube that runs alongside and in front of your esophagus. The esophagus is a soft, flexible tube that food travels down to get to the stomach. The trachea is more rigid and keeps its shape a lot more easily to allow airflow to travel properly.

The easy travel of airflow is why another name for the trachea is “The Windpipe.”

The trachea, bronchi, bronchioles, and the lungs.

The trachea, bronchi, bronchioles, and the lungs.

As it goes down into your chest, the trachea branches off into two bronchi—which are smaller tubes—and from there bronchioles—which are the smallest airway tubes of all.

At the end of the bronchioles are small clusters that look like tiny, tiny balloons. These clusters are called alveoli and this is where the exchange of oxygen and carbon dioxide take place.

The alveoli are covered with the smallest blood vessels in the body and the red blood cells in the vessels are the ones that trade the carbon dioxide they hold for new oxygen. They then take that oxygen to the rest of the body.

But more than the lungs—and all they hold—are needed to take a breath.

This is where muscles like your diaphragm and those in your rib cage come in to play.

The diaphragm is a muscle that sits right below the lungs and is the major muscle used in breathing. This boss muscle is dome shaped and when it contracts, it flattens. This makes the space inside your chest bigger and causes the lungs to inflate and expand.

The muscles in your rib cage—right in between your rib bones—also help expand your chest whenever you inhale.

When the space inside your chest gets bigger, air is sucked into your lungs and the alveoli fill with fresh oxygen. That is what happens when you inhale.

When the diaphragm and rib cage relax, the space inside your chest returns to it’s resting size. The air you just breathed in is released through your nose and mouth. That is what happens in your body when you exhale.

Breathing helps everyone race around and have fun!

And the exchange of oxygen and carbon dioxide happens in millions of tiny alveoli during that short time between inhaling and exhaling.

Our bodies automatically know how to take a breath. People like singers, dancers, actors, and athletes all learn how to control their breathing and use their respiratory muscles to improve their performances. It’s really amazing how our bodies take so many separate parts and use them together to do something like breathing!

If you want to get a simplified visual of how your body breathes, then here’s an experiment that adults and kids can do to make your own “mini lung”!

Make your own model lung at home!

Disclaimer: This experiment is relatively well-known and available online through multiple sources. Always be sure to be careful and have an adult handle the scissors. Safety is always important!

How to Make a Model Lung

Materials Needed

  • A plastic bottle

  • A straw (we used a wide, reusable boba straw)

  • 2 balloons (regular party balloons)

  • An elastic band or tape

  • Play dough or something to seal the bottle top (we used half of a balloon and tape)

  • A marker

  • Scissors

Instructions

  1. Mark the bottle halfway down and have an adult use the scissors to carefully cut the bottle at the mark. You can use the bottom half as a planter or decorate it to hold pencils. We’ll be using the top half for the experiment.

  2. Get one balloon and tie a knot at the opening. Use the scissors to cut the top off of the balloon.

  3. Take the top half of the bottle and stretch the tied-off balloon around the bottom of the bottle. Tape in place, if needed.

  4. Put the straw in the other balloon and secure in place with an elastic band or tape. Be careful not to crush the straw! Air needs to travel through it. You can blow gently through the straw to check if the balloon inflates to be sure.

  5. Put the straw and balloon into the neck of the bottle so that the balloon is inside the bottle near the center.

  6. Now, you have to make an airtight seal at the top of the bottle. There are two ways I know how to do this depending on what materials you have:

    1. You can use play dough to secure the straw at the top of the bottle where the cap usually goes. Make sure the straw isn’t crushed and that no air can escape through the play dough.

    2. Take the other balloon piece and have an adult cut a small hole in the center. Slide the top of the straw through the hole and bring the balloon piece down to the bottle opening. Secure the straw to the balloon with tape. Tape the balloon edges to the bottle, or you can use an elastic band to seal the balloon at the bottle opening.

Presto! You’ve made your own mini-lung!

You’ve probably figured out how the different materials make up the different parts of the respiratory system, right?

  • The bottle = your chest and rib cage

  • The straw = your windpipe

  • The balloon inside the bottle = your lungs

  • The balloon at the bottom of the bottle = your diaphragm

But how do you see it in action?

If your lungs inflate because your diaphragm makes the space inside your chest bigger…

What happens when you pull down on the balloon at the bottom?

Don’t be discouraged if it doesn’t work the first time. Just re-check for any holes or leaks in the tape or play dough to make sure everything is sealed and there are no leaks.

In fact, problems like small holes or leaks in our respiratory system can keep our own lungs from inflating properly. And it’s things like that that doctors and healthcare professionals look out for when treating patients who are having trouble breathing.

Knowing how our bodies work is important for us to know how to take care of ourselves. And especially important so we know how best to help those who might need it.

The human body is intriguing and amazing to learn about. There’s always more to learn and share.

Join us next week for another installment of…

The Science Saga of SuperCaptainBraveMan!

Until then, stay safe and stay brave!

Join our mailing list and don’t forget to like & follow SuperCaptainBraveMan on social media to hear all about it!

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Going on a Disney Cruise (Part 1)

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Hello, SuperCaptainBraveFAM!

Disclaimer: Please be aware that the information below is based on our own experience and, to our knowledge, correct as of January 2020. Procedures and amenities may change when cruise lines relaunch.

It’s Nurse Leah here on another Monday. Last week, I talked about how—before the pandemic—we used to go on short day trips with Kyle. (If you haven’t read it, you can click here to do so!) It’s a list of “must haves” for traveling with Kyle. Over the years, he’s also gone on overnight and multi-day trips to the Disneyland Resort, San Diego, Hawaii, New York, and Baltimore. The trip I’m about to share with you is our most ambitious to date.

In May of 2019, Kyle spent three days at sea aboard the Disney Wonder cruise ship.

When the idea of taking a short, three-day cruise down the California & Mexican coast came up, you can bet that Team Kyle had to put our collective heads together to find out if it was even possible. Jennifer Norman, Kyle’s mom, spoke to his team of doctors to ask if traveling was advisable for him. Once we got word that as long as reasonable precautions were taken, Kyle could go on the trip, Team Kyle started researching the process of taking a person with adaptive needs onto a cruise ship.

Travel agents are a great resource and avenue to use when you can. Lots of times they have exclusive deals and information for families looking to enjoy every second of their vacation.

Team Kyle wanted that too. But we wanted to research everything ourselves and sometimes questions that come to mind when talking directly to the source don’t occur to you when talking to a liaison like a travel agent.

We looked into every aspect of the cruise. From scouring travel blogs and YouTube reviews of the wheelchair accessible staterooms; to contacting the Disney Cruise Line directly and asking questions that catered to Kyle’s specific needs, we poured months of research into ensuring that if we went on this trip, Kyle would be as safe as possible.

We were in uncharted waters and looked for information where ever we could find it.

Since the cruise would take us down to Ensenada, Mexico, the first order of business was getting Kyle a US Passport. Well, passports for all the kids coming on the trip. When I say that Team Kyle was going on this cruise, not only did I mean Kyle and his family. The nurses dedicated to Kyle’s care and their kids were invited, too.

It was a celebration, after all. In 2019, Kyle turned 13. After all of the hard work, setbacks, and triumphs, our Bootie-boy was now a teenager.

The Disney Cruise Line has a section on their website dedicated to answering the questions of guests with disabilities and what accommodations are available for them and their needs. This was way back in 2019 and the information might be different when the cruise line relaunches. The site only answered so many questions, Jenn and I spent quite a while on the phone with a Disney Cruise Line cast member to get clarification on several key areas.

Their Request for Special Services form covers requests that include:

  • plans to bring specific medical equipment

  • a request for distilled water (which we absolutely need for Kyle and was provided every day by the cruise line)

  • a need for electrical power and supplies deliveries

  • the need for a wheelchair accessible room

  • wheelchair accessible ground transportation when available

  • trained service animal notification (Permits are required for every country and port you’ll be sailing to and can take weeks or months to complete, so be aware of that. Also, the animal needs to be trained with the proper documentation for their roles.)

  • plans to travel with an oxygen concentrator and other oxygen related needs

  • requests for guests who have hearing disabilities like stateroom smoke detectors with strobe lights, and an American Sign Language interpreter for select shipboard shows & entertainment.

  • requests for guests with visual disabilities like audio descriptive devices and enlarged print formats for dinner menus.

  • severe food allergies like the ones Nurse Victor and my daughter, Remy have

As mentioned in The Adventures of SuperCaptainBraveMan books and on this blog, Kyle is oxygen and ventilator dependent. The process of having oxygen tanks on board the cruise ship was both straightforward and complicated.

Straightforward because the forms needed were easy to access and fill out.

Complicated because…well…they were forms and red tape is red tape.

We were informed that we sadly could not bring our own oxygen tanks. But they provided us the contact of a third-party distributor that had a contract with our port of departure. We secured the correct forms and received confirmation that the requested oxygen tanks would be delivered to the dock and placed in our stateroom.

Along with the oxygen tanks, we wanted assurance that the equipment we needed to bring could charge safely. Without going into specifics, there are at least 5 pieces of equipment that need to be charged nightly for Kyle’s care. All staterooms have outlets, but none have power strips.

And you can’t bring your own from home due to cruise line regulations.

But what you can do is request an extension cord from Guest Services the moment you board the ship. Unfortunately, when we went, you couldn’t reserve one beforehand. Paul Norman, Kyle’s dad, was unanimously volunteered to be the one to brave Guest Services when the time came.

Every stateroom has a mini-fridge and bathroom with sink. So, Kyle’s medications and feeding supplies had a place to chill—ha ha—and get cleaned every day.

The Disney Cruise Line website has floor plans and pictures of the wheelchair accessible staterooms. But pictures can only tell us so much. That’s where Nurse Victor came in with his obsession for travel vlogs and did some research.

YouTube became a great tool for use to see the accessible staterooms from a guest's perspective and one of the most informative videos that we watched over and again was the Disney Wonder Handicapped Accessible Stateroom 7138 Tour by RaeTravels.

And by coincidence, Kyle’s stateroom number on the Disney Wonder was 7636—on the other end, but the same floor as the room in the video. More video travel vlogs and online ship diagrams prepared us for the general feel of where and how Kyle could navigate the ship.

My favorite thing...was how incredibly accommodating the Disney Wonder staff was in regards to what it means to travel with a person with special needs. There wasn't a moment I felt: "Kyle can't do this."

Nurse Victor

The practical components taken care of, Team Kyle could focus on the traditional aspects of going on a cruise and a Disney cruise in particular. One of the best parts of going on a Disney cruise is the themed nights and the dining experiences.

This cruise in particular had a Pirate’s Night scheduled on the itinerary. And if you need to know anything about Team Kyle, you need to know that we love to dress up. We also like to surprise and prank each other, so we kept our individual pirate get ups a secret.

Originally, we were assigned the second dining group seating—where dinner service started at 8 pm. Having 13-, 9-, and 8-year-old kids in our group meant that an earlier dining option was preferable. We put in a request for the main dining group—where service started at 5:45 pm. The day we left port we were told that our request was granted and our first dinner would be at the restaurant, Triton’s.

One tidbit that we stumbled on when researching for Kyle was the fact that many people decorate their stateroom doors with magnets. Cell service is spotty even with the onboard app available to the people in your party. A lot of guests have whiteboards with dry erase markers on their doors so they can leave notes for their family.

When I saw how amazing these decorations were, I knew that we had to create something special for Team Kyle. Nurse Victor did an amazing job drawing everyone in “vacation mode” and I did what I could with MS Paint and printed out some Mickey head decorations and stuck them on magnet sheets I got online.

Some guests even take part in a small gift exchange. But with everything else going on, we couldn’t contribute to the idea. Next time, we definitely will.

So, we had costumes and we had decorations.

What comes next…? It was a Disney cruise. What came next was autograph books, new swimsuits, and lots of packing and repacking!

Join us next week where I get into the actual story of our trip and not just the practicalities of planning our possibly perilous passage into the unknown…otherwise known as a Family Vacation.

Check out the vlog we made outlining today's info (with extra pictures and video) below!

Stay safe and stay brave, SuperCaptainBraveFAM! Sea you all later!

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Hand Washing and Social Distancing

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Hello, SuperCaptainBraveFam!

It's Nurse Leah with two very special messages from SuperCaptainBraveMan. We all have been living very strange lives over the past year. We want all of you to know that we're doing our best to keep everyone safe by washing our hands and social distancing responsibly.

With that said, please enjoy these SuperCaptainBraveMan Comics drawn by our very own Victor Lodevico.

As the pandemic continues and numbers start to decrease, we should all work hard to keep each other safe. Remember to be an everyday hero to everyone around you.

As always, stay safe and stay brave, SuperCaptainBraveFAM.

Don’t forget to subscribe to our mailing list, like, and follow us on social media for more content and upcoming announcements!

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