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.
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.
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:
Tubie Friends (supplies stuffed animals with feeding tubes).
Mic-Keys on the Go
Make Lemonaid (g-tube pads, covers, etc).