Ultimate G-Tube Resource Guide
My son, Apollo, had a g-tube placed when he was 22 months old. Thankfully we had good friends whose son had a g-tube for nearly three years. They were our main g-tube resource and I was thankful to have them to consult when we had big and little questions.
Apollo had his g-tube for a total of 4 1/2 years. This post is a compilation of the best g-tube resources I have found over the years. Here you will find links to our own story as well as websites and organizations that will help you on your own journey with a feeding tube.
G-Tube Placement: Apollo’s Story
A post about Apollo’s g-tube placement at Seattle Children’s Hosptial.
Apollo had his PEG for 4 months and then had the mic-key placed.
The Ultimate Guide to Air Travel with a Disability
Traveling by plane is one of the safest and fastest ways to get to your destination. But crowded airports, long waits at security checkpoints and baggage restrictions can make flying challenging when you have a disability. This post will help you plan your trip and avoid stress.
This site is pretty much the mama of all feeding tube sites. It is user-friendly and offers a variety of articles on all topics surrounding feeding tubes. This is a great site to refer friends and family to if they have questions about feeding tubes.
“Conquering pediatric feeding struggles to nourish healthy futures”. This website covers a spectrum of feeding issues from just being picky to children who have never eaten orally. There is a forum you can join and they share many useful articles.
Feeding Raya {A Girl and Her Tube}
A blog about Raya and her year with a feeding tube. This is a great overall g-tube resource site with many personal stories about Raya and her feeding struggles.
G-Tube Resources to Encourage and Inspire Your Child
Tubie Friends make stuffed animals with g-tubes, ng-tubes, central IV lines, tracheostomy tubes or oxygen cannulas. Apollo received one just days before his g-tube was placed and love it. It was also a great resource for helping friends and family understand how his g-tube worked.
Beads of Courage is a program that provides beads for various medical treatments. Beads of Courage gives children a visual way to tell their individual story. Apollo loves to hear the story of his beads. Beads of Courage also has a sibling program which Apollo’s older brother has really benefitted from.
Jars of Hope provides jars full of fun, playful activities for kids struggling with health issues. Apollo received a jar when he had his staph infection and it really was a bright spot during a very difficult time.
Tiny Superheroes is a website devoted to giving joy and confidence to children who struggle with health issues. They offer adorable superhero capes and have a fun subscription program where kids get monthly missions and earn badges to put on their capes. Apollo is a member of Tiny Superheroes and loves it!
Adjusting to Life with a G-Tube
Our first few weeks adjusting to life with a g-tube
My thoughts on life after the first year with a g-tube.
What to Do When a G-tube Falls Out
Apollo’s g-tube fell out or was accidentally pulled out at least four times. Most were no big deal but a couple got a little bit hairy.
Ongoing: Thriving with a long-term feeding tube.
What to Pack: Emergency G-Tube Kit
No one wants to be stuck out of the house and be missing one crucial supply. You know how I know? It’s happened to me and I said never again.
Scar Tissue and G-Tube Revision
Apollo struggled with granulation and scar tissue the entire time he had his feeding tube. At one point it was so bad he had to have the scar tissue removed. Thankfully he was already scheduled to have his tonsils out so he didn’t need a separate procedure.
Speech Therapy and Feeding Issues
Things finally began coming together for Apollo when he started speech therapy in kindergarten.
Our Experience with a Feeding Clinic {Seattle Children’s Hospital}
A trip to Seattle Children’s’ Hosptial Feeding Clinic.
The time we missed our flight due to my son’s g-tube…because the TSA agent was convinced he found “explosive residue” on my hands.
I Quit: Raising a Child with Complex Health Needs
Dealing with the frustrations of parenting a child with complex health needs.
Dealing with Reality: My Child is Sick
Coming to terms with raising a chronically sick child.
After the Feeding Tube: Adjusting to life when the feeding tube is removed.
“Milton is great for encouraging new foods, learning about healthy eating, teaching table manners, demonstrating safe eating, having fun meals with your little one and so much more!”
My son loves his Milton! While it might seem a bit counterintuitive, having Milton on-hand to feed foods to and try new foods with is encouraging him to expand his palate. If I could I would buy Milton for every single tubie I know
Apollo’s g-tube had to be closed surgically due to the amount of scar tissue built up. While the surgery went smoothly he contracted a nasty staph infection that kept him sick for weeks.
Pictorial Guide to Staph Infection
Warning: this post contains graphic photos of my son’s staph infection.
My compilation of resources and we transition from tube-fed to a picky eater.
How to Get Your Former Tubie to Take Medicine Orally
This was one of my biggest fears (we had 4 1/2 years of being able to put medicine directly in his g-tube) and we faced it immediately after surgery.
Reflections on four years with a g-tube.
A fun photoshoot I did with my son to commemorate his 4 1/2 years with a feeding tube.
Early Birdies CP YouTube Channel
This YouTube channel shares blenderized diet ideas and how they “went from visiting the GI weekly to only once in the past five years since we started my son on a blenderized diet.”
G-Tube Humor
Life is too short to be serious all the time. Here are some posts about the humorous parts of life with a g-tube.
9 Signs Your Child May Have Complex Medical Needs
Books to Help in Your Feeding Tube Journey
(some of these links are affiliate links)
Real Kids, Real Tubes: A My Tubey Photograph Book
This book is exactly what it sounds like a book full of pictures of real kids with feeding tubes. Apollo is featured several times in this book so of course, it is a favorite of ours!
A children’s book to celebrate the superpower of growing up with a feeding tube.
I own this book and it has been a huge help to me over the years. The Amazon description says this, “Grounded in science, but made real with the often heart-breaking and inspiring words of parents who have been there, Dr. Katja Rowell helps readers understand and address feeding challenges, from simple picky eating to entrenched food obsession, oral motor and developmental delays, “feeding clinic failures,” and more.
If your child is safely allowed to eat you will love this book. It focuses on food prep, talking about food and getting kids comfortable with food…even if they ultimately don’t eat it.
{Please share this post with if you know someone who will benefit from this g-tube resource page!}
Most of these links aren’t working anymore 🙁 I was sending this page to a friend and realized when I tried to click on some of them. I thought they were really helpful when I’ve read them previously.
Thank you for letting me know! I will get these fixed today so you can send it to your friend. Check back in tomorrow.