Tuesday, October 18, 2011

Who Dropped the ball?

Zoie carved her pumpkin and Raygen's all by herself. Her welcome pumpkin is my favorite and she made Raygen's pumpkin with eye lashes. So cute. Randy and I went for the easy pumpkins round eyes and mouth :)

Sleepy Baby.

She is watching her TV. Raygen does really good in the car.

So I got a call today from Children's and now were talking November 23rd for possible surgery. Can you believe it? Go from one extreme to the other. First its the 28th, then the 18th and now November 23rd. The surgeon is not available to operate in November till the 23rd and there isn't enough time to do it before he leaves next week. I really wish I knew who dropped the ball. This will give us more time to see if Raygen can possibly loose the trach before or right after surgery but I'm nervous that from a cardiac standpoint that she needs her surgery now not in a month. I have messages with two cardiologist to get their thoughts on everything. The surgeon says he feels she is okay to wait but is he saying that because it works for him or works for Raygen I don't know. Switching surgeons is a possibility if need be but I would really like the surgeon who did her Norwood to do her Glenn, who better to know her heart then the man that fixed it the first time. I have no idea what to do for now besides wait. I did schedule an appointment with the trach doc for next Thursday. To answer a question "Why are they not ventilating through the trach during the glenn?" When Raygen underwent her G tube and Cath they did just attach the ventilator to the trach but the cardio docs feel the risk is too great for an infection to use the trach. They feel the safest bet is to vent through her nose or mouth, close the stoma, then four or five days later re-trach her. I am asking more questions myself on this because I'm not a hundred percent sure if they are scared that secretions from the trach may lead to an infection or if maybe the humidified mist collar. Any advice in this matter would be great. So if anyone knows who dropped the ball at Childrens I would really like to know. I am stressed, scared, and annoyed. But everything happens for a reason and if it means I just get to be home longer with my girls then I'll take it. I'll keep you all posted and thank you again for all your prayers and support. I had to post a few more Halloween pics.