Jaron has successfully had his new g-tube button placed. Before there was an 8 inch tube always attached to his belly. Now we just attach tubing when he eats. The Mic-Key has to be replaced every few months. I hope to be able to do it myself at home. Basically there is a little balloon inside that you fill with water to keep it inside the stomach wall. When the balloon pops or gets deflated, it can fall out. The doctor explained that the hole in his belly is a lot like an ear piercing except that it will start to close up within hours if you do not have the tube in place. Yesterday he had to be sedated and intubated because they had to pull out the old tube and do an endoscopy to check the inner lining of his esophagus and stomach. The GI doctor said that it looked more inflamed this time which indicates acid reflux damage. She took a biopsy and will test to see if he needs more reflux medicine. The steroid that he was on produces a lot of stomach acid and probably was the cause. Yesterday was his final dose of the steroid. I am really anxious for his smile to return. He has started "talking" to us again! It's more like a whine because he furrows his eyebrows and looks like he is trying to complain about something. It's very cute! We still haven't made any decisions about the next medication. We are hoping that the doctor who does the ketogenic diet will call and offer to see us before we have to make the decision.
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