Feeding Tube Awareness Week 2018 day 1

Today's topic is Awareness: Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding – most of which you can’t see. Most people do not understand why someone, particularly children, can’t eat enough to grow, thrive and live. Help educate people about the medical conditions that can lead to tube feeding!



Jillian and Lydia are still considered undiagnosed because they do not have an overarching diagnosis, their diagnosis list so far is just a list of symptoms. We know whatever is going on starts at a muscular level and also appears to involved the connective tissues. Jilli's type 2 muscle fibers in her legs are atrophied which is very odd for someone who can walk. Jilli also has five different gene changes in genes that are known to cause muscle issues however she only has one copy of each of those genes and they are all recessive.

The girls need a feeding tube because anything that goes into their stomach is refluxed back up and then is aspirated into their lung. Anything that is in the stomach takes a very long time to pass from the stomach to the small intestines causing things to be refluxed over and over. Because of this the girls are feed into their jejunum, which is the second part of the small intestine.

Jillian's stomach is drained overnight into a urine bag because she struggles with refluxing her natural stomach secretions. Lydia's stomach is drained 24/7 into a diaper because she can not handle her own stomach secretions at all.

Both girls are on 2 different reflux medications to keep their stomach acid production down. Jillian is also on an antibiotic which is used for its side effect of making the stomach empty faster. Both girls   are one CoQ10, a vitamin, that helps with muscles. Jilli is also on the full mito cocktail of vitamins that help with muscles.


Before feeding tubes the girls were not growing, they were both loosing weight. They were also vomiting all the time and had milk ending up in the their lungs causing issues with their lungs.

The girls' feeding tubes make it so they can get the nutrition they need to grow and thrive while protecting their lungs.




Every year for Feeding Tube Awareness week we try to do something to give back to the feeding tube community (in past years we have partnered with Tubie Friends and Ronald McDonald House). This year we are doing a band-aid drive for Children's Hospital of Wisconsin. We are about 2/3 of the way to our goal. Our drive ends on Friday (2/9). Click HERE for more information.


Also, I had the honor of being published in Complex Child's February edition about GI needs. I wrote about the differences between the button style GJ tubes. You can read the article HERE.