Nathaniels G-Tube System
Someday we may have a cordless baby. But for now, cords are part of Nathaniel's and our lives. This is what Nathaniel looks like attached to his g-tube feeding pump housed in the little backpack.
When out in public, children often approach us, point at the tube, and candidly ask, "What's that?" Their parents are mortified, but equally curious. I've learned that children and men want to see the whole system, right down to the skin. For educational purposes, here it is: an explanation of the Mic-Key™ g-tube feeding system we use for Nathaniel. No needles or blood involved so even the queasy should be ok scrolling through the photos.
Nathaniel has a hole in his abdomen into his stomach. The Mic-Key™ feeding tube is inserted in the hole.
"How does it stay in?" you ask.
The Mic-Key™ has an inside tube surrounded by a balloon. Once inserted into Nathaniel's abdomen, we inflate the balloon with sterile water.
Fluid - medications, water and formula in Nathaniel's case - can pass freely through the tube while the balloon holds the g-tube in place.
Three times a day we apply a barrier cream (this is the one we like best) and a gauze dressing around the feeding tube to protect Nathaniel's skin from moisture. In order to use the feeding tube, an extension tube locks into the Mic-Key™. The other end of the extension tubing allows us to administer medications and water through a syringe or attach his feeding bag.
The Infinity feeding pump allows us to control the dose and rate of each feed. Every month Nathaniel's GI and dietitian adjust the total calories he needs in a twenty-four hour day based on his weight. Together we develop a schedule of feedings that balances Nathaniel's need to take formula very slowly, his need to let his stomach rest between feeds, and his need to be cordless for all his therapies. Currently his day time feeds take about an hour and a half to administer. He receives about two-thirds of his calories overnight. The schedule is constantly changing. As we increase the daytime feeding rate, we move more of the nighttime feeds to daytime.
Being attached to a feeding pump does interfere with Nathaniel's agenda of being a kid on the go. As secure as the balloon seems, it can be pulled out fairly easily if the cord is caught on something when he decides to take off crawling. Taping the cord to his shirt was a God-inspired Mom-geniuses moment last week. Sudden Nathaniel movements pull on the tape rather than directly on the g-tube in the tummy. Have a friend or family member on a g-tube? This is a fantastic resource for loved ones to learn more about tube feeding. Check out the Facebook group Feeding Tube Awareness for daily encouragement and support for g-tube feeding.
That is how it works! All the way down to the skin.
February 2015 Update:
Nathaniel started walking in May, 2014 and we immediately had him start wearing his feeding backpack. It was like learning to walk twice and he wasn't very happy about it.
Late November, 2014 we switched Nathaniel from Pedisure 1.0 with fiber to Elecare Jr., a hypo-allergenic amino acid based formula. He is doing fantastic on the new formula. There has been no vomiting since the first week in December which means no aspiration pneumonia in eight weeks. Probably our longest duration without a respiratory infection. He gained weight at both our January and February weight checks. He has energy. He is sleeping great. I do hope that Nathaniel can eat orally someday, but I am very thankful that because of tube feeding and medical formulas, he can move pass constant GI issues and get on with being a normal kid in so many other ways.