Miss Vickie,
I'm sorry that things are so frustrating for you. I know just how you feel because I had to be Scott's advocate when he couldn't speak for himself. He would write messages that doctors sometimes took little time to read, then he used the free software from readplease.com that Helen mentioned and that was at least a way for him to have a voice. He was so frustrated because it seemed that the doctors weren't really capable of him after they had done their surgical responsibility. What they didn't seem to understand is that even the small things mean a great deal when you've had so much taken from you. He hated his trache, hated the feeding tube, but he tried not to complain. Doctors kept promising to take the trache out but they would then come up with a reason not to. They told him he would be fitted for a prosthesis to replace the roof of his mouth, then they never did. They never once suggested exercises to keep his jaw working properly after they had to break it during surgery. They just left us to our own devices on so many things. He wanted to drink a cup of coffee so badly that he could have cried, but there was no way he could with the trache and no hard palate. I felt guilty having even a sip of water in front of him.
I used to dip those toothette mouth swabs in water, juice, coffee, coke...whatever, then put them back in their wrapper and store them in the freezer. He could barely squeeze one into his mouth, but the coldness was at least refreshing, and the taste was better than using them plain. When he couldn't sleep we tried so many different things from Benedryl to old fashioned sleeping pills. Even when he did get to sleeping well, he'd choke because of that damned trache and have to sit up to sleep. It was one thing after another. It's like what we explored in the Activism forum with Gita's posts....it just seems like there should be more to patient care than cutting you up and sending you home.
I haven't said a thing to help you here except maybe to say, Hey, I'm listening and I understand.
Christine
