Long day for Rylee

Rylee had an appointment at Children's Mercy today to get her trach site looked at because of some scar tissue that has me worried. While we were in the office the doctor seemed worried that she hasn't made any sounds around her trach and that she still can't tolerate her HME (artificial nose) so she sent us to the ENT clinic. She was afraid that there was more swelling or other issues going on. This of coarse sent me into a panic and it seemed like it took forever for Rylee to be seen. Rylee had a flexible bronch in the office and the ENT doctor didn't see anything that we should be worried about. This was very stressful for Rylee, mommy, and our nurse. We hate to see anything painful happen to our poor little girl. They did change out her trach with a trach that has a longer extension. Rylee seems to be getting a third neck so sometimes it covers the trach. This will also help her keep her HME on so she doesn't knock it off. We are still waiting to work with her on bottle feedings. She did impress the ENT doctor with her pacifier sucking ability. We are still very lucky that she hasn't developed oral adversion from not having any bottles. Jordan stayed home with daddy and was pretty fussy all day. She is normally a very good baby during the day so hopefully nothing is going on with her. I even checked her gums to make sure she doesn't have any teeth coming in yet. We have had some new nurses start working the evening shift and very excited that we have coverage. Our hours will go down starting August 1st so hopefully we can get her to sleep during the night. I am still going to go back to work in a couple weeks and the time seems to be flying by.