Feeding Tube Awareness Week 2023

 

Cooking his own hamburger

Three "awareness weeks" coincided in my life in quick succession!

Here we are in Feeding Tube Awareness Week, only two days after World Cancer Day on February 4, and only four days after Neuroblastoma Cancer Awareness Day (on my birthday February 2!). So much awareness, so little time in our busy lives dealing with this stuff.

Our family is extremely grateful for the invention of the modern feeding tube--a Percutaneous endoscopic gastrostomy--in 1980. Just think that a mere 43 years ago, Thomas would not have survived his medical tragedies simply because he would have starved to death. So many conditions now have a chance to be treated (e.g., cancer and countless others) simply because the patient can be kept fed and won't die of starvation in the interim.

Thomas still remains tube-fed overnight for the majority of his calories. Most kids receive "bolus feedings," which means eating a meal's worth of calories via tube in as short a time period as eating a meal by mouth. Because Thomas lost his stomach, he cannot receive that much volume, so he is among the rare tube-fed kids who receive continuous feeding (feeding over a very long stretch).

Maybe someday Thomas will be strong enough to take over eating everything by mouth--and we pray he does!--but if he is never able to do that, we can rest easy knowing that he could receive sufficient nutrition via feeding tube for the rest of his life. I've witnessed some pretty awesome "tubies" on social media, like very strong athletes and women who carried pregnancy to full term while being tube-dependent.

I thank several friends in my life who were open about their kids' feeding tubes because they helped me understand that a feeding tube is not itself a tragedy, it is a life-saving help. Of all the pieces of bad news we received at the hospital two years ago, when the doctors said that Thomas needed a feeding tube, I was comfortable with that because of the awareness raised by my friends.

For those who want to learn more, the Oley Foundation (www.Oley.org) is possibly the premiere site for learning about enteral (gastrointestinal tract) and parenteral (bloodstream) nutrition.