Good nutrition is an important part of your child’s treatment. Try to deviate as little as possible from your child’s normal diet. Your child’s body needs to heal and gain strength in order to resume normal activities and undergo any treatments that may be planned.
“Back to normal” means “back to school” for most older children. When your child returns to school, you want him or her to be treated as normally as possible. You will need the cooperation of both the school and the health care professionals working with your child. It is important to update your child’s teachers and the school nurse with whatever medical information will help them help your child in school.
Bills add up rapidly. Even if you have good insurance coverage, there will be nonmedical expenses such as phone calls, extra gas, tolls, meals away from home, child care, and lost wages. (Keep receipts—some of these expenses may be tax deductible.) It will be important that you receive all the financial aid and insurance benefits that you are entitled to.
It will help if you discuss ahead of time with your child’s doctors (and write down in your notebook) what signs and symptoms you might normally expect to see during your child’s recovery period. Collect prescriptions for all medicines you might possibly need. Ask the doctor what complications may occur. Discuss ahead of time what constitutes an emergency and where to take your child if an emergency occurs.
Going home can be exciting and joyous for the whole family. It can also be a hectic, fearful, and anxiety-filled period. Both you and your child may feel apprehensive when leaving the security of familiar doctors and nurses, even though they are only a phone call away. All of these emotions are normal responses to being discharged from the hospital.
Initially, you or your child will be making regularly scheduled visits to the neurosurgeon or other specialists to follow up on his or her progress. Professionals affiliated with support services may be monitoring you at home to provide help, but there are still other experts who may have to be consulted. The following people may continue to be part of the treatment team or may be added as needed.