It seems as if it came out of nowhere. He has been on reflux meds since he was an infant and I don't ever remember any major signs of his reflux. Until recently. I honestly think it was from all the suctioning that made his gag reflex really sensitive which if you remember was a big concern of mine. Well seems as if reared it's ugly head. He has not been suctioned in about 2 weeks but it seems to have causes him to reflux high and today he aspirated on it, vomitted and turned blue. This is the big danger.
Problem is, there are no other meds that are effective at this point for him. The only solutions would be a fundiplication which I am admanently against. Isaiah had this done and now suffers from his Cyclic Vomitting as a result. So no way no how. Many drs. ask about this for Avery and I won't do it. What it is a surgery in which the stretch the stomach and wrap it around the bottom half of the esophagus to prevent the reflux from coming up by the lungs and causing an aspiration. But what can happen is many kids that are neurologically impaired, which is Avery without a doubt, can suffer nerve damage. Which is what I believe Isaiah has.
Plus that is way too invasive and Isaiah had great difficulty recovering so I cannot even imagine what Avery would be like.
So you see my dilemna......I am really at a loss. This aspiration is a scary thing for him. I came home after shopping with Rick and Janessa and I find her by the suction machine with Avery looking a bit stressed. She is a very calm nurse and she said he was blue after vomitting and just did not look well. So BIG PROBLEM.
Question is, what to do?
1 comment:
Nicky, We just had Jaiden's gj tube advanced another 10 cms. It really help her keep her formula from coming up. Her pain level is down now too. Maybe if it is advanced he may not have as many issues with reflux. Just a thought.
www.caringbridge.org/visit/jaidenandmarlowhite
Debbie White
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