I have a long-distance teenage friend named Jessica. Eleven years ago, she was diagnosed with the progressive disease, Niemann Pick Type C. Four years ago, after a series of seizures, she lost a lot of mobility and her ability to speak. She has been hospitalized twice since August 10. Her dad keeps a web-based journal and I wanted to share a couple of his entries about doctors and hospitals.
"All [hospital] admits are tedious, with the same questions being asked a number of times, usually by doctors and nurses who are seeing Jessica for the first time. The challenge is to answer all the questions patiently and completely, establishin
". . . we are still scheduled for the PICC line tomorrow and we are discerning whether we want to have a new G-J tube put in at the same time. The doctors feel it will give Jess a better chance to avoid pneumonia. Since it is different, and new to us, it is a challenge to separate the zeal of those encouraging it from the considerati
Today, while we continue our most important job as parents, we will also have to don a bright red or yellow reflective vest and play traffic cop, trying to stay off of “double secret probation” for visiting violations, while managing the comings and goings of caregivers, therapists and visitors who would like to say hello to their favorite patient. Remember only 2 people per room, unless it is convenient for that moment for the doctor to be able to speak with mom or dad while 2 caregivers feverishly tend to the moment to moment needs of Jessica. If I sound bitter--"
Jessica has had many hospitalizations and her family provides and coordinates 24 hour care-taking when she is at home. "Care-taking" is a euphemism. They keep Jess alive with constant attention and procedures that most of us would think could only be done in a hospital. She lives as a family and community-member in an integrated way that constantly inspires me. When Jess is in the hospital, their expert, individualized care-taking goes with her.
It makes me furious that they have to struggle to be seen as equals with medical folks, most of whom have never even met Jessica. The hospital has a new stricter visitors policy which actually makes their work with her there harder. That some administrator, and his or her managers, are enforcing it in this situation also makes me furious.
Jessica's dad says this: "... we are discerning whether we want to have a new G-J tube put in at the same time. The doctors feel it will give Jess a better chance to avoid pneumonia. Since it is different, and new to us, it is a challenge to separate the zeal of those encouraging it from the considerati
He is talking about my challenge in considering lung surgery. I hope I get my elusive diagnosis after I see the pulmonalogists tomorrow. But, even that may not tell me definitively whether or not surgery is in my near future. The consequences of medical procedures land in a very personal individual body. Given that this body is my own, I'm very interested in it working as well as possible for as long as possible.