Preparing Yourself for Your Child's Hospital Stay

When you or your child requires a hospital stay and procedure, your medical team can help them to find the best facility for their child's treatment. You can always ask for a second opinion from a different doctor, program, or hospital until you feel confident that you have found the right treatment and location for your family.

Sometimes, you may return to a hospital you know well. Other times, you may plan to stay at a hospital you have never visited before. It is a good idea to learn about a hospital before being admitting.

You can:

• Call the hospital and schedule a tour of the cardiac intensive care unit (CICU), cardiac step-down unit, and/or any other space where your family will stay

• Ask to meet with the care team who will provide for your family during their stay

• Check online for videos showing the cardiac unit and other sections of the hospital, and watch the videos linked below

• Discuss hospital visiting policies, including when and how parents can stay overnight

• Ask about staff in the hospital who may be able to support families emotionally during the admission, and consider meeting with them, including:

  • social workers

  • hospital chaplains/ spiritual care providers

  • palliative care providers

  • cardiac neurodevelopment staff

  • psychologists

  • Child Life Specialists

Usually, families feel better when they know what to expect during a hospital stay. When you learn your child will be admitted, you can ask your medical team to describe what to expect during the stay. Sometimes the staff can accurately predict exactly what will happen. Other times, treatment plans may change, or the plans may be open or uncertain. However, you can usually get a good sense of the range of options, and how decisions will be made. You may want to ask:

• Where will your child be?

• Who will be in the room?

• What will your child look like at different stages of the admission?

• When will you be able to hold, touch, and feed your child?

• What choices may you and the doctors need to make?

• Will you be separated from your child at any point?

• What medical interventions may be necessary, and when?

• What developmental services will be provided to your child, and who will arrange them?

Talking to other families can help you to know what to expect. You can ask doctors to connect you with parent and patient groups affiliated with your hospital, and you can also connect with the groups linked below.

Before an admission, you may want to ask your doctors how long they expect the child to be admitted. They doctors may not know, and there may be a lot of uncertainty about the length of admission. If you plan for the longest likely stay, then you will be prepared no matter what happens.

In preparing for the hospital stay, you can talk with your family, friends, neighbors, medical team, and broader support network. You can make a plan to lean on these people to help you through this time. You will want to consider questions such as:

• Who will take care of siblings? When, and how?

• Who will feed and walk the pets?

• Who will cook, clean, and manage the household?

• Who will pay bills?

• Which family members will stay in the hospital, and when?

• When and how will caregivers spend time with other siblings?

• Will anyone need temporary housing near the hospital?

• How will family members travel to and from the hospital, including parking?

• Will caregivers take a leave from their jobs? If so, how will your family manage finances?

• How will all caregivers get respite time?

• How will all family members take care of their physical and emotional health?

These questions can be overwhelming. Hospital staff such as social workers, Child Life staff, and the palliative care team can often help.

Many families have many loved ones who are eager to visit the hospitalized child. Some families love as many visits as possible, and other families find visits stressful. You should take time to consider what is right for you and your family, and leave open the possibility that your situation and your feelings may change.

You may want to talk with your family, friends, and medical team, and consider:

• What is the hospital visiting policy?

• What kinds of visits might feel good, and what kinds might feel stressful?

• Do you need to be concerned about infection from people coming into the hospital?

• Are there people you want to come visit, and people you do not want to come visit?

• How does your child feel about having visitors?

• Do you want siblings to visit?

• What circumstances could affect your feelings about visits, and how would they affect them?

The priority is for your child to stay safe and healthy, both physically and emotionally. You can decide on a visiting policy that works for you and their child, and communicate it to your loved ones. You can tell them that your decisions may change, and if so, that you will let them know.

Now is a good time to pack a bag for everyone who will need to stay overnight in the hospital.

In adult bags, consider packing:

• comfy clothes for varying temperatures

• distracting activities (books, videos, puzzles, knitting, crafts, audiobooks)

• a computer or tablet

• all phone numbers and addresses you might needed

• chargers for all devices

• warm grip socks

• slippers with solid soles

• flip-flops for the shower

• sound-protecting earmuffs or ear plugs

• headphones

• playlists of music

• a sleeping eye mask

• eye drops, lip balm, and moisturizer

• coffee or tea

• your own toothbrush and toothpaste

• your preferred body care: face wash, soap or shower gel, shampoo, conditioner

• moisturizer and lip balm

• a hat (for bad hair days!)

• dry shampoo

• a twin size foam mattress topper for your sleeping space (sometimes twin XL is best: ask your Child Life team)

• twin (or twin XL) size sheets

• your own pillow and pillowcase

• a favorite blanket

• nourishing snacks

• a water bottle

• a bath towel

• any prescription medications in original packaging

• common over-the-counter medicines such as pain relief, a sleep aid, a nasal moisturizer, a stool softener, diarrhea medication, and treatment for nausea, if your doctor agrees these treatments are safe

Packing for a child depends a great deal on their age, and the expected length of their admission. Babies do not need to bring much, and older children may want to bring many items to make their room feel homey. You can talk with your Child Life team and nurses to make decisions about what to bring.

Depending on your child's needs, you may consider packing:

• loose and comfy clothes for varying temperatures, including clothes that allow easy access for wires or tubes (snap-front outfits may be best for babies)

• a favorite blanket and pillow

• comfort items such as stuffed animals

• distracting activities (books, videos, puzzles, knitting, crafts, games, audiobooks)

• a computer or tablet

• chargers for all devices

• warm socks with grippy bottoms

• slippers with solid soles

• flip-flops for the shower

• sound-protecting earmuffs or ear plugs

• headphones

• playlists of music

• a sleeping eye mask

• eye drops, lip balm, and moisturizer

• their own toothbrush and toothpaste

• dry shampoo

• a water bottle

• pictures to decorate their space

Preparing for a hospitalization can bring up many big feelings. Family members are often worried, but they may also be relieved that a child is receiving a necessary treatment. It can help to remember that many other parents have been through exactly this process, and have come out the other side.

You may feel better if you connect with other parents who have children with heart defects, and they can help you to know what to expect, and how to get through this time as comfortably as possible.

At any point, you can reach out to your medical team or your neurodevelopmental team to ask for help. Many people are standing by, ready to take your hand and walk with you on this journey.

This content was reviewed by a psychologist at Boston Children's Hospital.

Developmental care is best when it is local. Families local to Boston can receive support from the Cardiac Neurodevelopmental Program, Child Life, Spiritual Care, Social Work, and/or the PACT team. Families from other regions can use the link below to find their care team.