Happy Feeding Tube Awareness Week!
Last year I celebrated Feeding Tube Awareness Week by writing about the Good, the Bad and the Ugly of tube feeding.
We were in a sticky situation last year with Jayson's quirky and dangerous GJ tube.
In April we were able to switch to a G tube, and he has doing wonderful since!
In September Jayson was gaining too much weight so we exchanged a tube feeding of formula for a tube feeding of just pedialyte.
Just this week we hit an amazing tubie milestone... WE WERE ABLE TO ELIMINATE A TUBE FEEDING DUE TO AN INCREASE IN J'S ORAL FEEDINGS!!!!
~Celebrate~
Over the past year we have had our ups and downs with tube feeding and oral feeding. Jayson started out 2013 by passing his swallow study and getting the okay to drink liquids and eat non-thickened food for the first time!
He started to eat like crazy, but in summer time his oral feedings came to a complete stop. In early fall he began eating again, and in mid-fall slowed. Eating started to vary day to day until February of 2014 when Jayson decided he was going to eat, eat, eat! He is currently eating about 6-7 oz in one sitting, and about 12-14 oz a day of blended table foods! He has also started drinking since we've decided to thicken his liquids again, and he's drinking about 2-4 oz a day of chocolate instant breakfast! His eating habits right now have us very excited and hopeful.
And what a wonderful way to kick off
Feeding Tube Awareness Week--
Over the course of Jayson's life, he has had several different feeding tubes:
An NG going through is nose to his stomach.
(Two weeks in March 2012)
An NJ going through his nose to his intestines
(March 2012-October 2012)
A GJ peg tube placed surgically in his stomach and guided into his intestines
(October 2012-April 2013)
A G tube button placed in the stomach and very user friendly.
(April 2013-current)
The G tube button has been a dream! The other tubes have often required ER trips or hospital admissions to deal with tube pulls or complications, but the G tube is something we can replace on our own at home if it pulls out. We also change it and switch it out ourselves every 4 months in the comfort of our own home. It has an extension that we can take out in between feedings, and the button is nearly flush with Jayson's belly.
Regardless of the type of tube, the process is the same-- getting food to belly by avoiding oral intake. There are many reasons why a child might need a feeding tube: oral aversion, respiratory issues, aspiration, palate issues, sensory issues, inability to swallow/problems swallowing (dysphagia), burns too many calories to eat by mouth, failure to thrive, allergies, sever reflux, GI tract issues, etc. Jayson started out with an NG and NJ tube because he was aspirating food into his lungs silently; we had no idea. We also discovered he silently refluxed and would aspirate his reflux. That is why we had the tube placed into his intestines. Now that he is no longer aspirating, he is experiencing oral aversion, dysphagia and sensory issues because he went so long without eating orally. Jayse is working hard with a speech therapist who is our feeding therapist, and we work on therapy every day for lunch and dinner. His oral feeding therapy takes us an hour, two times a day. It is exhausting and sometimes painful. Jayson works so incredibly hard just to eat by mouth, and I am so grateful that he gets the majority of his nutrients from his feeding tube so that we do not have to push him beyond what he is able to do. His feeding tube allows us to be at home, instead of at the hospital.
Although tubies can be a huge pain due to the spills, tugs, tangles and pullouts....
We sure love J's tubie for keeping him happy, alive and thriving!
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