Full of Surprises

Surgery didn't go as we anticipated. When I called to check to see if Brayton was out of surgery yet, they said yes but that the Dr wanted to speak with me. Something they've never done before. The surgeon informed me that Brayton's esophagus was so constricted (worse than the previous weeks surgery. His esophagus went from a 30 the previous week to a 16 this week-after surgery) that she had to get an xray machine to help guide her so that she would not tear anything. While she had the xray on him, she discovered his esophagus is bent at an awkward angle, and that during any of these dilations, his esophagus could have been torn while doing them through his mouth. So, oral dilations are no longer safe. She went through his feeding tube hole in his stomach, and up into his esophagus. She threaded a string through the feeding tube hole, through his body, out his nose, tucked over his ear, and back into his feeding tube hole. They also placed arm braces on him to prevent him from pulling the string out. These braces are making it impossible for him to do anything. He can't drink his sippy, he can't play with toys, he can't get up if he falls down...nothing. He cries a lot now, he's so angry that he's so restricted, and I don't blame him one bit. I heard him whining this morning while playing in his room, to find him face down on the ground, unable to get himself back up. I had enough of watching this, and finally stuck some socks on his hands to deter him from attempting to get the string (which he really isn't very interested in anyways!) but so that he could still do things. He was happy about that, and it worked pretty well. Before he went to bed though, he had to put the braces back on. No fun but he's toughing it out like the little trooper he is.

The surgeon told us that we still have months of these surgeries ahead of us. Just praying for the strength to get us through!