Navigating the Hospital
If you have a seriously ill child, you may spend quite a bit of time in the hospital. The hospital is a good place to be as your child will be safe and cared for. But it is also a difficult place to be because you are away from your home and the rest of your family. It is also a really busy place with lots of people in different roles who are going to talk to you about your child’s care, and there are usually, at some point, communication issues. Here is a guide with some tips we’ve put together based on interviews with a parent advocate, a pediatric hospital chaplain, and multiple parents.
The hospital feels like a foreign land. You may feel disoriented.
Most parents who aren’t medical providers haven’t spent a lot of time in the hospital, especially with their child. So when you enter a hospital for the first few times with your child, it can feel like a very foreign place. It looks big. People are moving quickly. People talk quickly, and they use medical language that may be new to you. You also don’t really want to be there because it means there is something wrong with your child’s health. Being in this strange place because your child is unwell can make you feel stressed and anxious. This is a natural response.
Your child may have multiple doctors and it may be hard to know which doctor is in charge. If you aren’t sure, Ask.
If your child is hospitalized overnight and for more than a day, you will meet many providers who come to talk to you about your child, especially if your child is being cared for at a teaching hospital with attending physicians and residents and specialists (see the attached Term sheet). Everyone wants to help. But it is hard to know who is in charge and to whom you should ask questions.
If you aren’t sure who is who, you can ask: “Please tell me what your role is? Are you on my child’s primary team?”
Your child’s care team will change over the course of the Day or Week or Month. These transitions can be hard.
Who is on your child’s care team and who is in charge is complicated by the fact that over the course of 24-hours, the medical team will shift between the day team and the night team. And often there is a rotation schedule and the team will change daily or weekly or by the month. It can be helpful to say to the nurse, “Please help me understand the flow of the day and when different people change schedules and rotate.” If you are in the hospital with your child for more than a few days, you will observe the flow of the day and learn how it all works.
Hospital rounds are an important time to ask the doctors questions. Usually once a day, the primary team caring for your child will visit to see how things are going. This is called Rounds. Most rounds happen in the morning. But then some specialists may come in the afternoons. It is good to know when Rounds and specialist visits happen so that you can be sure to be in the room–And also so you can know when it is fine to leave and take a break (for exercise, food, a home visit) because you won’t be missing anything.
So many specialists are going to come into your child’s room. This can feel exhausting.
It is good that there are so many medical professionals whose job it is to help take care of your child. But it can feel exhausting to have all these people come through your child’s room each day. They may even ask similar questions. They do this so they can make sure they hear everything themselves, but it can get tiring to repeat yourself and to have so many people in and out of the room. You can ask for some quiet time. Here is a suggestion from one Courageous Parent: “We put a little sign on the door that said, “Hi, my name is Jack. There are so many people who are helping take care of me. But if you don’t really really need to see me today, can I ask you to please come back tomorrow so I can have some quiet in my room.”
Sometimes it seems like the specialists are contradicting each other. You can ask them to talk to each other and then talk to you to explain what the plan is.
If your child has a complex illness, the medical team probably includes multiple doctors with different specialties, known as sub-specialists (e.g. Cardiologist, Pulmonologist, Neurologist, Gastroenterologist). Each of these doctors will give you lots of medical information and have suggestions for how to proceed with your child’s care, which is wonderful. But sometimes it may seem like their plans don’t fit together. This can be very stressful for you. But it does not mean the doctors don’t know what they are doing. It just means that medicine is complex. You can ask for help. You can say to one of the doctors, “Please help me out, because I am getting mixed messages from all of the doctors. I am confused. Can you please communicate with each other and then come back to me to explain what the plan is.” If you have a palliative care specialist on your child’s team (a palliative care doctor, nurse or social worker), this person can coordinate the care between the other specialists. (You can also request a family meeting, which is an opportunity for you to sit down for a discussion with your child’s health care providers. During a family meeting you can ask questions about your child’s care plan and request updates and recommendations from the various providers.)
Doctors want to hear what your concerns are.
Your child’s medical team really wants to help you and your child. They want to have good communication with you and to hear what your worries are. It is appropriate for you to ask questions whenever you have them and to share your feelings with them. If they don’t begin the conversation themselves, you can say to them, “This is what we understand is going on. Are we correct? This is our major concern. Should we be worried about this?”
If you feel angry or upset, ask for help. There is a whole chain of people you can speak with.
If you feel that things are not going well with your child’s care and you are feeling angry or upset, you can ask for help. Nurses are especially good to talk to. If you are upset with your child’s nurse, ask to talk with the Charge Nurse. If that is not enough, ask to talk with the Nursing Director. Or talk with your child’s social worker.
It is natural to worry about whether your child’s medical team thinks you are a good parent or likes you. But providers are not there to judge you.
When you are in the hospital, you will probably feel like many people are watching you and judging you. It is natural to want them to like you and think you are a smart parent. This can make you hesitate to ask questions or express your concerns. However, providers are not there to judge you. They are there to provide the best care possible for your child. They know you are the child’s #1 advocate and they want to hear what it is you have to say. They also know you are worried and stressed and they will understand if you are having a hard day. It can help them if you tell them how you are feeling. It is OK to say, “I’m having a bad day. I’m in a bad mood. Can we talk later.”
It is important to take a break … for Self-care.
No parent wants to leave their child in the hospital room but it is really important to get out of the room at least once a day. The hospital may feel the same 24 hours a day and it is easy to lose track of when it’s day and when it’s night or even what season it is. This doesn’t help your mental or spiritual state of mind and it doesn’t help you take the best care of your child. If you need someone to come into the room so you can leave, ask the nurse if they can come in or if there are volunteers. Over time, you will find the people who you trust to be with your child so you can take a break.
Many hospitals have special programs to help family members take care of themselves, such as massage, meditation rooms, gym memberships. Ask your social worker or nurse what is available for you.
It is important to get some sleep.
When you are first in the hospital with your child, especially if it is a crisis, you will not want to or be able to sleep. Hospitals are noisy, people are coming in to the room, and machines are beeping. And you will feel you need to be alert at all times. But you will need sleep to be able to function well for your child and to communicate with the medical team. Nurses will encourage you to get sleep and also to eat. They are taking care of you.