what are we supposed to do in this situation.... my wife and i had a child that has short bowel syndrome, she requires 14 hrs of tpn through a central line, has a gtube for feeds, and an ostomy. we have become experts in her care and not even current nursing professionals at a children's hospital can provide a better level of care for her, not to mention understand her medical history. the level of care our daughter needs has forced my wife to stay home to care for her. she cannot go to a daycare, to have a trained nurse come to the home would cost way more than the hours we are getting from the ccc+. in our case what would we do, if my wife cannot be the caregiver and she cannot receive compensation to care for our daughter?