Thank you for all the responses. I have learned so much reading the threads here.
It's been two weeks now and the nurses have come every night. They have been very helpful. I am still a little afraid to take her anywhere except Church and doctor appointments. She was suppose to have two more RSV shots, but medicaid turned her down (something about her being over 2 years old). At her doctors appointment yesterday the doctor said to watch her, because she will probably get RSV and wind up in the hospital. This makes no sense to me. Her social worker is appealing.
I mastered the art of changing the trach, suctioning, ventilator, and feeding tube. I even gave her two tub baths. I think that was the scariest part. I was very careful washing her hair and keeping water away from her neck.
I am also hopeful that she will be weaned off the ventilator soon as she is only on it from midnight till 6 a.m.