Today we entered into a program that is meant to help us facilitate the entire team of doctors that our daughter has to see on a regular basis. There is quite a few of them. 

Pediatric Palliative Care, CHOICES Program, is a consultative service (therefore continues to work with the patient's current medical team) and is available to any child or family suffering from a life threatening or life altering illness. The services provided include assistance with medical decision making, goal setting, communication, providing ongoing support and coordination of care (including with community agencies) as well as expertise in pain and symptom management in order to improve quality of life.

Pediatric Palliative Care should not be confused with end of life care. Currently two-thirds of patients seen by a pediatric Palliative Care team are alive a year later and the CHOICES team works with medically complex children throughout their journey. This program also initiates care with families of infants diagnosed prenatally with medically complex conditions at the time of diagnosis.