In a previous article, I mentioned that a hospital stay is another chapter in the ongoing care of a very ill child. The truth is that hospital stays may represent a turning point in the life of these children. You need to be sensitive to the additional concern that each hospital visit carries for the parents of extremely ill children. As awful as things can be at home, at least things are generally stable. Each hospital stay represents the very real possibility of things getting worse.

September 9, 2001
Faith was released from the hospital today, after a stay of nine days. Her condition is certainly different than ten days ago. She is now completely bed-ridden. All food and medicine is administered through a NG (nasal-gastric) tube. As she cannot use the commode, she must wear diapers. Her left arm is no longer working; none of her limbs is under her control. Her only way of communicating with us is by blinking her eyes.