Her father lay there in her hospital bed looking so out of place in the ICU. He held her, stroked her thin hair, talked to her and listened to her breath with the ventilator. They are saying goodbye to their daughter bit by bit. Its been a process that came quickly and has proceeded with immeasurable slowness. She has been sick for about a year now which is a quarter of her life spent in and out of the hospital. Her mother left for some needed sleep and was crying on her way out. I realized that she must have lost track of all the times she's cried.

When I got the call yesterday I referred them to another hospital for appropriate medical reasons but breathed a sigh of relief. I avoided this sitution of a previously healthy child that came down with a bad disease and now is at the end game. When doctors and nurses talk to each other about terminal cases we give each other that look that expresses our fears that this can happen to anyone anytime and we are intimately involved seeing the parents pain again and again. And when we are powerless to do any more if we can not accept that we are powerless some nurses and doctors do the "write off". The parents become "problems", "demanding", "unrealistic". Code words are given in sign outs about the family "high maintenence", "difficult", "unreasonable". Thus I was primed for this family. I had bought into this. I did not want to see this kid because I knew it would be hard to handle medically, emotionally and I really did not need difficult parents.

Well they have been abused in my mind by the inadequacies of the emotional ability of the medical staff thus far and I was THIS close to falling in step. Their daughter had a massive seizure was seen in a very reputable hospital but the specialst realizing this was a terminal case simply said well the seizures are going to start happening so here are some meds good luck and sent this family home in less than 8hours very ill prepared to handle anything. Well she seized again went to an ER not prepared to handle her, had a rough course, and she finally got to us.

She is dying and we all realize this. The parents want a full code which means a full CPR effort should she go really far south. To do heroic measures is looked down upon for terminal cases as prolonging the inevitable but how selfish are we to ask parents who were talking to their child days before to DECIDE that she should die.

It hit me like a thunderclap. WE are the difficult ones, the demanding and the unrealsitic at times. In our desire to avoid the pain of others, our own mortality and our inability to fix everything we are the ones who are high maintenence. Now this is not always the case. There are many examples of families and doctors not being able to let go when they should. I am glad this girl came to me and I am learning how to cry again which sounds so maudlin but its true and thats the goal.

I want to get her home as hard as her parents do. I am being realistic but I think it can happen.