Preparing for a Hospital Stay

A family's medical team can help them to find the best facility for their child's treatment. Families can always ask for a second opinion if they are wondering which hospital would be the best fit for their child.

Sometimes, families return to a hospital they know well. Other times, they are planning to stay at a hospital they have never visited before. It is a good idea to learn about a hospital before being admitting. Families 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 their child will stay.

• Ask to meet with the care team who will provide for the child during their stay.

• Check online for videos showing the cardiac unit and other sections of the hospital.

• Discuss 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 these people:

  • social worker?

  • hospital chaplain?

  • palliative care provider?

  • cardiac neurodevelopment staff?

  • psychologist?

  • Child Life?

• Ask the medical team to describe exactly what to expect during the stay (while knowing that these plans may have to change):

  • Where will the child be?

  • Who will be in the room?

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

  • When will parents be able to hold, touch, and feed their child?

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

  • Will parents be separated from their child at any point?

  • What medical interventions may be necessary, and when?

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

• Ask doctors to connect the family with parent patient groups affiliated with their hospital.

Before an admissions, families should ask their 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 families plan for the longest likely stay, then they will be prepared no matter what happens.

In planning for the hospital stay, families should talk with their family, friends, neighbors, medical team, and broader support network. They should plan to lean on these people to help them through this time. They 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 the 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.

Families probably 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.

Families should talk with their 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 they need to be concerned about infection from people coming into the hospital?

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

• How does the child feel about having visitors?

• Does the family want older siblings to visit?

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

The priority is for the child to stay safe and healthy, both physically and emotionally. Families should decide on a visiting policy that works for them and their child, and communicate it to their loved ones. They should let them know that their decisions may change, and if so, they will let them know.

Now is a good time to pack a bag for everyone who will need to stay overnight in the hospital. This usually includes the child, plus one or two parents or caregivers.

In adult bags, consider packing:

• comfy clothes for varying temperatures

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

• a computer or tablet

• chargers for all devices

• warm 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

• a hat (for bad hair days!)

• dry shampoo

• a twin size foam mattress topper for your sleeping space

• twin size sheets

• your own pillow and pillowcase

• a favorite blanket

• nourishing snacks

• a water bottle

• 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 the child's 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. Families can talk with their Child Life team and nurses to make decisions about what to bring.

Depending on the child's needs, families may consider packing:

• 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, audiobooks)

• a computer or tablet

• chargers for all devices

• warm 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

• 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.