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| A Tubie Friend I made last week! |
Today's topic:
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.
Anything that Jillian eats goes into her stomach and then comes back up (refluxed) and in the process of food going up and down some of it ends up in her lungs causing her to develop pneumonia. The bottom half of her throat does not have appropriate muscle contractions when food is going down (the muscles just sit there). She also has a small hiatal hernia however that proves to be elusive as it is only visible sometimes during testing. If she has any amount of volume that goes into her stomach, most of it is vomited back out. Her stomach also does not have proper muscles movements inside of it when food in present (any food that is not vomited sits in her stomach for a long time before moving to the intestines). So for Jillian it is multiple parts of the digestive system that do not work properly that cause the need for the feeding tube. Jillian's doctors have told us that she has one of the most extreme cases of reflux they have ever seen. She is on two different reflux medications daily and a gastric motility medication to help her food move through her body (plus lots of other meds for other things)
Jillian's first feeding tube was placed in March of 2013 because she was not gaining weight and was vomiting all of the time. Her first tube was an NG tube which went down her nose and into her stomach. Because food was still going into her stomach she was still vomiting all of the time and choking on her vomit. In April of 2013 her tube was changed to a NJ tube which went down her nose and into her small intestine. In July of 2013 Jillian had surgery to place a GJ tube which enters her body in her stomach and has ports that go to both her stomach and intestines. She is fed into her intestines an amino acid formula from 10pm one day until around 5pm the next day. She gets fed via a feeding pump and milk goes into her body at a rate of 58ml per hour. Overnight her g port (stomach) is drained of all of the excess stomach juices.
Jillian still has no over-arching diagnosis at this time, however we are on the hunt!
I have not made a feeding tube video yet for 2016 (its one of my goals this week, however we also have therapy, 2 neuro appointments and a rehab appointment this week so we will see!) Here are the links to the videos from the past two years.
Feeding Tube Awareness 2014 video
Feeding Tube Awareness 2015 video
Please feel free to ask questions this week about tube feeding, I will try my best to answer them!
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