One year ago today Apollo had his g-tube placed at Seattle Children’s Hospital. After a whirlwind five days of testing we had just received the shocking new that Apollo still had a “vascular structure” compressing his esophagus. We were told the only surgery to fix it was far too risky and likely wouldn’t even work with his unique anatomy.
After seeing this image from his Upper GI, the decision to have a g-tube placed was an easy one. There is no way we could expect Apollo to continue to force food past that indentation in his esophagus. It also posed an extreme choking risk for him.
Apollo’s PEG tube. Complete with 8 inches of tubing hanging out.
We were told it would take 2-3 days for him to recover from the surgery. Two and a half weeks later Apollo was still taking Tylenol around the clock and walking hunched over like a little old man. The pain didn’t improve until it became obvious that he had an infection at the site and he was put on a round of antibiotics. Finally, he things settled down and he was pain-free.
In hindsight, I believe that fact that he was still recovering from major surgery and was unable to take in adequate calories contributed to the long recovery time.
We were suddenly thrust into a world of medical supplies. A feeding pump and IV pole now took prominence in our livingroom. I had to clear our shelves and drawers to contain the vast amount of formula, syringes, gauze and more that were to be delivered monthly.
Between setting up, feeding and clean up, I spent between five and six hours a day feeding Apollo.
But he was no longer hungry all the time. Finally he could experience a full-stomach and grow.
Chuck was awesome during this time. He would set up the feeding pump and measure out Apollo’s medicine before he left work. When I woke up, I could just get Apollo hooked-up and start his feedings.
Tube feeding while hiking.
As summer came, we anticipated Apollo needing the feeding tube well into his teenage years. We made an effort to normalize his feeding. We took family hikes with someone holding his backpack and pump (he was to small/weak to wear it himself). We tube fed Apollo on hiking trails, at the zoo, in church, at the beach. We bought a monster of a BOB stroller that would last us years so Apollo could always come along with us, even if he needed to rest.
Tube feeding in the van.
Tube feeding on the beach.
Eventually we moved to bolus feeds instead of the feeding pump. It was a relief not to have to rely on a battery operated pump.
“I can feed myself, Mama!”
Just before out trip to Texas Apollo received this Medical Me doll.
He fell in love immediately! His doll has gone a long way to help him feel comfortable with his tube.
Tube feeding on the airplane.
Lunch at the Houston Zoo.
After Apollo’s heart surgery in Texas, he developed chylothorax and had to be on a fat-free diet for two months. The only chylothorax formula made was milk based and Apollo can’t tolerate milk. We dealt with almost daily vomiting until we returned home and (with the help of a dietician and nutritionist) began to blend food for him. Once he had recovered from the chylothorax, we switched back to formula. It was obvious that he felt better and had more energy on formula.
Now here we are a year later. It has been a crazy year of ups and downs. Sometimes I love the tube (he can finally get enough calories and nutrition!) and sometimes I hate it (he grows a crazy amount of granulation tissues and has had a handful of infections at the site).
May 4, 2012: 22 pounds 7 ounces
May 4, 2013: 28 pounds
He’s had weight gain of 5.5 pounds in the last year! Apollo started out receiving 3 cans of Bright Beginnings Soy Formula. This formula is both high calorie and high fat. We eventually moved him up to four before his second heart surgery and now he is down to only two a day!
And finally, my favorite g-tube resources:
Medical Me
Tubie Friends (supplies stuffed animals with feeding tubes).
Mic-Keys on the Go
Make Lemonaid (g-tube pads, covers, etc).
Those of us out here in cyberspace who have grown to know and love your family through your blog share a big sigh of relief that now Apollo is able to get the nutrition that he needs to grow! What a blessing!!
I know you can’t predict the future, but are you still thinking that he’ll need the g-tube into his teen years? Does he enjoy eating anything by mouth these days?
Davene,
According to the doctors the physical need for the g-tube has been removed. He still has a very limited oral diet (though it is expanding). His pulmonologist believes he will need nutritional supplementation for years (because his body has to work extra hard to breathe so he burns more calories). If he would simply drink the formula, he wouldn’t need the tube at this point. I am in no hurry to go back to working all day long to get each calorie in him though! That was the most stressful time of my life…
Thanks for the response!! I can imagine that fighting to get a kid to eat would be terrible. 🙁 Again, I’m so glad the g-tube is making life easier for y’all!
Do you know about the cream called calmoseptine? It is for many things, and one is for tube-feeding sites. It has changed my life! Won’t tell you how I use it–too embarrassing. But if you haven’t seen it yet, please look it up. I got it at Walgreens. Special order, non-prescription at one location. At another store it was on the shelf. You can ask the pharmacist where to find it.
Thanks, I hadn’t heard of it. We have finally found a good balance with steroid cream and antibiotic cream. The steroid cream makes him grow a little patch of hair on his tummy though!
As a reader from afar (the UK to be precise) it has been amazing to watch Apollo’s progress this past year! What a great way to raise awareness of g-tubes, something which often, due to their nature remains hidden to the casual observer. I look forward to seeing him improve even more in the months and years to come 🙂
Emily
I’m so happy you seem to have found a bit of normalcy. You deserved a break, and so did Apollo! I love all of these pictures, and seeing how much he’s grown. It sounds like he’s doing well with the weight gain- he’s now bigger than my middle son, Gabe, who turned three in mid-March! Granted, Gabe’s a puny kid, but still- that’s wonderful improvement on Apollo’s part!
Yup, he’s not big, but he definitely looks like a two year old.
I came very close to crying as I read this post. My little man also developed chylous after his heart surgery. He did not tolerate the fat-free formulas well and had pretty intense acid reflux. Because he wouldn’t eat as much as they wanted him to, he had a nasal feeding tube placed. When I saw the Joey pump in your picture and heard you tell of hours dedicated just to feeding, I could totally relate. It was stressful, exhausting and I’d do it again in a heartbeat if God would allow me to. Absolutely LOVED the photo of Apollo feeding himself!
Yes, the burden is 24 hours a day with these kids. Every single thing in my life was built *around* his feeding.