Let your family and friends know what is happening. Help them to understand that your child may go into crisis - repeatedly - for the next few weeks or months. This helps to minimize the frustration if you have to cancel a trip or meeting, abandon weekend plans or suddenly need help with a sibling at home.

Obviously, parents can become very focused on their sick child. Siblings at home are probably being handed off to friends or relatives are not seeing much of their parents. When they do see their parents, the adults are likely to be exhausted. Siblings may feel resentment, anxiety, fear and they may act out as they try to cope with confusing, conflicting feelings.

Medical staff care about your child and will do the best they can, but they approach your child with a goal - "We need to get this IV started."  You may need to ask them to slow down, or to explain something to your child.  If your child has developed a routine that helps them cope with needle sticks or other procedures, communicate that to the nurse before he/she starts the process. Our daughter liked to do a “countdown” before a needle stick. If your child is in pain, ask for pain medication. If it takes more than 20 minutes, ask again. If you still don't have a response, go to the nurses station and demand that someone see your child. Your child is depending on you. Seeing you in this role will also reassure your child that someone they trust is controlling the situation, which will make it less scary for them.

Write down your questions for doctors as you think of them rather than trying to remember them all during visits.  Take notes when you speak with doctors. If you are in the hospital, you can ask if you can see the same doctors at rounds each day in order to provide continuity of care (different hospitals handle this differently).  If you feel you are getting conflicting advise from different specialists, ask for a discussion with all doctors present so they can hear each other's points of view. Don't be afraid to respectfully disagree with a doctor, or to provide your opinion.  Tell you doctors about your observations and "hunches" about your child - good doctors value input from the parents because no one knows your child better than you.

You need to have one point of access for questions that arise, and there needs to be one person coordinating the medical care provided by all specialists.

This one's important, and easy to forget. But considering the number of doctors, nurses, and possibly insurance company people you'll be speaking with at odd hours, it's very important to keep such a list, including dosage and delivery method (oral liquid, IV etc.). Make sure all doctors are aware of this before prescribing additional medications to avoid any drug interactions. We have provided a downloadable meds log here.

It is vitally important that you not neglect your own needs for rest, nutrition, exercise if you can and as much relaxation as you can get.