Understanding and anticipating the hospital environment will help you feel more in control and better able to support your child. Your initial priority will be to build and establish a working relationship with the medical team to get the best care possible. To do this effectively you will need to advocate for your child–and for yourself.
 
To be an effective advocate in the hospital you will need to learn the routines and schedules. You will need to voice any questions you have, though you may not know whom to ask about what. It is very appropriate to ask; after all, you know your child best and are there as their voice and protector. It is also appropriate and helpful to share your concerns and feelings, including those of confusion or fear. Over time you may develop close relationships with certain members of the care team, perhaps nurses and nurse practitioners who usually do not rotate. They and everyone else wants to help and will try to direct you if they can’t address your concerns.
 
You will find yourself experiencing a lot of overlap which feel inefficient and bring feelings of frustration. Sometimes you will hear the similar questions from different people, or even from the same people. It can be exhausting and annoying to repeat yourself and to have to be “on” for so many people. You may have questions about how (or if) their plans fit together, or about how to decide between different options they offer. You can ask the specialists directly, or someone else on the team, such as a palliative specialist, to assist you in putting the pieces together.
 
The section on Advocating and the CPN guide “A Framework for Sharing Decision-Making with Your Child’s Clinicians” are helpful resources for families and clinicians working together.
 
Focusing on your child is a natural impulse, especially in the hospital. No caregiver wants to leave their child alone in a hospital room, but taking care of yourself will help you take the best possible care of your child. Ask for help in making a schedule for yourself and family members who may visit. You will want to know when clinicians will be visiting (“Rounds”) so that you can be at the bedside as your schedule allows. You will also want to know if and when others, like family members, are allowed to visit.
 
It goes without saying that you will need nourishment and sleep to be able to function well for your child and to communicate with the medical team. When you are first in the hospital, especially if there is a crisis, you will not want or be able to sleep. You will feel the need to be alert at all times. This is natural. But depriving yourself of food and sleep is not heroic. It does not help you be strong for your child or your family.
 
The CPN guide “Navigating the Hospital” includes information on hospital protocols and roles of the clinicians you may meet.