Waste of Time

Well, today was a complete waste of time for the most part. We were seen by Genetics and that went really well. We like going to see Dr. Swidler, Deb and Katherine, they are wonderful. Dr. Swidler talked to us about the possible abdominal surgery and she seems to think that it will be needed. We also asked her opinion on the g-tube, whether or not William would benefit from it. She seemed to think that he would benefit and it would be a good thing for him to have.
Then we went to have the CT scan done. Will could not eat after 11am (our appointment was at 2pm). They took us back about 1:20pm to get the IV and all that stuff done. (This is the same staff of nurses and doctor that did Will's MRI and they remembered us!! I wasn't very happy to see them either!!) The CT machine broke! So we had to be rescheduled. So Josh is going to have to take another day of work. They also wanted to have the anesthesialogist there when they sedate Will because of the complications that could happen with anesthesia (airway collapse) because of the RTS. So they are going to schedule a CT scan when the anesthesialogist can be there as well as the sedation nurses. We are waiting for them to figure out their schedules and call us back when they get it worked out. I am hoping that we can have it done this week still, but I am not sure.
So that is what we know now, nothing yet!!