"We were discharged from the hospital and went to our little apartment, we were nervous but we were really happy. We always had a printout from the nurse of what to do in certain situations and we could always get a hold of the doctor or nurses if we had a question or if we were unsure whether to bring him in or not."
—Jill, Mother of Pediatric Patient
Leaving the hospital after transplant is a wonderful milestone in your child’s treatment with many emotions. Your child’s health care team is available to answer all of your questions and provide ongoing care to your child. Be The Match®patient service coordinators will also be available to answer your questions and provide resources to help with this transition.
Planning ahead for questions and emergencies will help you feel more confident at home. Know what symptoms to watch for and who to call during office hours, at night and on the weekends. Keep the phone numbers handy. Ask your transplant center what you should do when you have questions or your child needs medical care.
Other ways to plan and prepare for your child’s return from the hospital may include:
- Getting your home ready. This will require making changes in your household and daily routines to minimize infection risks.
- Planning who will care for your child at home if you or other caregivers need to return to work.
- Planning a routine for your child of taking medications, self-care, schoolwork and play. Planning a schedule that includes a clear medication timetable can make it easier to share caregiving responsibilities.
- Talking with siblings about their feelings and questions.
Helping your child’s recovery at home
While your child may expect to feel well as soon as he/she gets home, it may be weeks or months before your child can be fully active in everyday activities. Your child will still need medical care, such as help taking medications at the right times and caring for a central line. Your child may also have frequent visits to the hospital or clinic to check his/her progress.
Once you return home you will need to watch for signs of infection. Your child will be at an increased risk of infection after transplant. You and your child’s doctor will watch for signs and symptoms of graft-versus-host disease (GVHD). GVHD is a common side effect of allogeneic transplant (which uses cells from a family member, unrelated donor, or umbilical cord blood unit) and can range from mild to life-threatening. Your transplant doctor will give you instructions on who to contact for questions and follow-up care.
Creating a new normal
For months your child’s health was the focus of attention in your family. Family life likely has changed while your child was in the hospital. It may take some time and effort for everyone to adjust to these changes.
Your child will also need time to adjust and gradually return to daily activities and school. At first there will be limits on what your child can do because of infection risks. In time, these risks will grow smaller and your child’s doctor will ease up on these limits. Regaining independence is an important part of your child’s recovery.