Posted by charlie
on 7/31/2009, 10:03 pm
76.184.70.158
Hello, I have a 2 week old daughter that has been diagnosed with PRS. I have done a lot of research in the last 2 weeks and wife and I are so overwhelmed. Our Cora is in the hospital and unable to come home with us. She is fed with an NG tube and is having a lot of difficulty breathing (They put her on a nasal oxygen flow last Sunday). We have spoken with a surgeon referred to us by the hospital over the phone a few times. They have done a ct scan and a scope. Originally we were told they would just monitor her, but it seems everyday her breathing gets worse. We had to stop trying to feed her with the Haberman as she would severely dsat everytime we tried to feed her. Now that is happening several times daily even without trying to bottle feed her. Anyway, the surgeon has scheduled her for jaw distraction surgery Tuesday morning. We have not met him yet and obviously have a lot of questions, but after researching think this might be the best option. Does anyone have similar stories, suggestions, ideas, comments? We just want what is best for Cora and unfortunately we dont know what that is. Is this the best option?
Message Thread:
« Back to thread