Questions Questions Questions

Today is day 13 in the hospital but Adriana is doing much better. She is still having seizures and a low grade fever but she is progressing. For the past 2 years we have been told by many doctors that more then likely Adriana will need a tracheotomy. We have decided in the past that we did not think that she needed one yet but this past stay here at the hospital it has been brought to my attention more & more about how she obstructs her airway. She has stopped breathing on me once before and I had to perform CPR on her. I know that having a trachea, I wouldn't have to worry about her not breathing but there are so many reasons why I do not want her to have one. Sometimes I wonder if I am just being selfish and thinking about myself instead of her because I don't want her to have one. Adriana does fine during the day and any other time she is awake on keeping her oxygen level up. At night and any other time she is asleep her oxygen can drop into the 20s but come back up. She is on oxygen while she sleeps for her sleep apnea but she still drops her oxygen level. I am so torn on what to do because when she is not sick she is so happy and playful. I know with a trachea she will not be able to go swimming and we will have to keep her away from crowds of people. Adriana has so many upper respiratory infections that I don't see how having an opening in your throat could be safe. I am suppose to meet with the Pulminologist before we go home and believe me I have a long list of questions for him! Her dad & I had always told each other that we wouldn't do the surgery unless we were to the point where we had to do a DNR or the surgery to save her.  I don't want to be too late and we have no idea when that time will come? My worst fear is her not having the trachea and she dies. Ill feel like I didn't do everything i could to save her. My baby girl is my life and I will do anything I can to help her but where do I draw the line?  There could be the chance of her going through surgery for the trachea and not making it since she has had problems in the past during & after her surgeries. There is also the chance that she could do wonderful during & post surgery but she could pull out the trachea while we are asleep and she could stop breathing. I have so many questions and thoughts going through my head right now. I have been praying so much about this for the past two years and Adriana is still here. How much praying do I have to do to get an answer or sign on what the right decision is? So many hard choices I have to make and I am only 25. I have matured & grown up so fast since Adriana was born. I'm ready for a vacation!!!