After Treatment & Long-Term Care
The day your child leaves the inpatient unit after a blood or marrow transplant is usually a happy one. Everybody is glad you are able to return home or to temporary housing if home is far from University of MInnesota Children's Hospital. Even so, your child will continue to need frequent medical follow-up with the healthcare team. They will also continue to take medications to prevent or treat complications of transplant.
Planning for Your Child's Return
Leaving the constant care provided by the transplant center hospital and clinic staff can be both exciting and overwhelming. Planning ahead may help you feel more organized and confident about handling questions and emergencies. It is important to know what symptoms to watch for. We will help answer any question you might have about caring for your child's medical care.
Your plans for your child's return from the hospital may include:
- Preparing your home for your child's return and making changes in your household routines to avoid infection risks.
- Returning to your doctor for your child's follow-up health care.
- Supporting your child's recovery by encouraging healthy practices, such as washing hands to avoid infections, eating healthy foods, and getting exercise.
- Planning for child care at home if you or other caregivers need to return to work.
- Planning for your child's education by developing an education plan and maybe a home tutor.
- Planning a routine for your child of medications, self-care, schoolwork and play. Posting a schedule that includes a clear medication timetable can make it easier to share caregiving.
If you have other children, think about how the new routine will affect them and how they can be part of it.
Leaving the Hospital and Care of the Transplant Center
Your child may expect to feel well as soon as he or she gets home or to your temporary housing, but the healing process can take a long time. It may be weeks or months before your child has his or her energy back. Your child will still need medical care, such as help taking many medications at the right times and caring for a central line if it is still needed. Your hospital will offer a class to teach you the skills you need, or the nurses will teach you. Encourage your child to play an active role in self-care, depending on age and energy level.
Your child will also have frequent visits to the hospital or clinic to check his or her progress. For about the first 100 days after transplant, your child will be cared for by transplant doctors. In time, your child will most likely return to the doctor who treated him or her before transplant. It will be important for your child's pediatrician or primary care doctor to stay in close contact with the transplant doctor. Your child will receive the best care when you and your child's regular doctor and the transplant doctor work as a team.
Your child may need to take a lot of medications when they get out of the hospital. It is very important to give their medications as prescribed. Before you leave the hospital, nurses will give you written instructions and a schedule of your child's medications. Medications should not be stopped without checking with your child's doctor.
Consider these tips for dealing with medications:
- Learn the names of your child's medications, their appearance, and the reason for taking them.
- Keep a list of known allergies and current medications with you in your wallet or purse.
- Get prescriptions refilled five to seven days before running out of a medication.
- Store medications in their original containers in a cool, dry place away from bright light.
- If you have trouble remembering when to give your child medications, a doctor or nurse can offer ideas on the best way to schedule them. A pill box with different compartments for different times of the day, for example, may help. A medication schedule or chart is also useful.
Children may require special assistance in taking their medications, such as the use of an oral syringe.
- It is important to tell your child's healthcare team about every medication your child takes, including over-the-counter medications, vitamins, and herbal remedies. Do not allow them to take herbal remedies without first asking your child's physician, as some contain substances that can cause infection. Always bring a list of the medications your child is taking to their clinic appointments.
Teens may have difficulty with taking their medications correctly or on time. Their sleep schedules may vary. They may want some independence and responsibility in taking their medications and participating in their post-transplant recovery. They will benefit from your assistance in being as independent as possible, but also your attention to monitoring that they are, indeed, taking all medications correctly and on time.
Returning to Normal
Family life has changed while your child was away for transplant. For months your child's health was the focus of attention. Now your family can return to more balance and other family needs can be addressed. It may take some time and effort for everyone to adjust. Things will never be exactly the same as they were. This is your family's chance to create a new "normal."
Your child will adjust and gradually return to activities as well. At first there will be limits on what he or she can do because of infection or bleeding risks. In time these risks grow smaller and you can relax these limits. Regaining independence is an important part of your child's recovery. Try not to protect your child more than is really needed and to give your child the independence he or she is ready to handle.
Getting back into normal routines will take time and patience for your child and the rest of the family. The timing of return to school depends on the type of transplant your child had and the recovery of your child's immune system. While some children may be medically ready to return to school about three months after transplant, others may need to continue their studies with a tutor for six or more months post transplant. Consider a part-time schedule when returning to school, household chores, and hobbies. It is important for your child to pace themselves and set limits when reconnecting with loved ones, but don't isolate them by avoiding friends and family. Improvement occurs gradually as strength and endurance return.