Update

We've had a sick little boy around here the last few days so I haven't had a chance to provide an update on Seren's surgery. The short version is that it went totally fine. Her heart took the anesthesia just fine, and she started taking her normal formula through the new tube within twelve hours.

The thing that is difficult to explain, or to even grasp when you see it, is that Seren's mental capacity essentially means she is almost entirely unaware of anything around her except her comfort level. This means that Seren generally doesn't know where she is or what is going on in a cognitive sense. She does respond to her environment, but not in the sense that she sees something and thinks "that's a noise", "that's a blanket," "that's a face" etc. This is of course, the saddest part of her diagnosis. Her severe disabilty also means she doesn't "suffer" in the sense that the surgery would have been a traumatic event for her. With a child like Seren, the difficult thing in this situation was determining whether she was in pain or not. She was generally very peaceful in the hospital which was comforting. When she cried was it just a cry, or was it pain? We made sure she got medicine, and used information from people who have had the surgery before who are able to communicate to determine what type of medicine she needed. My goal was to keep her as comfortable as possible, and return to her to her home quickly. Although there is no real proof, I think she does better in a familiar environment. Its just my mother's instinct that she does better with the least "information" thrown at her as possible, so I wanted her back at her facility asap (plus, I trust them more than I trust anyone else). So, to that end, baby girl is back to her facility and doing just fine. I'll post a picture with her face tube free soon!