Friday, December 18, 2009
Rylee had her bronchoscopy on Wednesday afternoon as scheduled. It was pretty hard handing her off to a nurse and we went on our way to the waiting room. Unfortunately we didn't get very good news about her airway. The doctor found some webbing (scarring) around her vocal cords. She tried to remove this scar tissue, but didn't get the results she was wanting. We are going to go back for another bronchoscopy on 1/21/10 to see if anything further has happened and the doctor is getting a new piece of equipment that may help her get her airway opened up. When her trach was placed her subglottic stenosis was a grade 1 or 2. It is now a grade 3 which means her airway is 90% blocked. We are hopeful that the doctor is able to get some results with this next bronchoscopy in January. If this is not successful she will require reconstructive surgery of her airway sometime this spring or summer. I handled this news better than I thought I would. It helped that the OR nurse called us to tell us that the doctor found something and that they were working on it. At that time I knew it probably wasn't going to be good news. Rylee showed the recovery nurses what she was all about. She required some CPAP (ventilator) when she was done with surgery and she was not enjoying it too much. They even called me in the waiting room to see what would calm her down. They ended up letting me go up to the recovery room that parents are not allowed in to help with her. She had a hard time keeping her oxygen level up so we almost had to stay the night. The doctor came by and felt comfortable with Troy and I taking her home so we were released by 6:00 p.m. She had a pre-op appointment on Tuesday and weighed 16 pounds 12 ounces and is almost 26 1/2 inches. We are still hoping and praying that she will not require surgery in order to get her trach removed. We are going to put this news behind us and enjoy our miracles 1st Birthday on Sunday.