Planning for discharge will begin when your child’s new stem cells have engrafted, he/she is free of signs of infection, he/she is able to take the oral medicines and he/she has no evidence of other major problems. Transition from the hospital unit to the outside world is a giant step, which can bring excitement and anxiety. The SCT team will help prepare you to care for your child so that you will feel confident at home. As discharge day approaches, you will learn the procedures needed to care for your child. Often a home care company is needed to help with care for a period of time at home A home care company will be arranged for your child if needed.
Choosing a Temporary Home
Transplant patients must remain in the Houston area for the first 100 days after transplant. Our social worker will assist in locating housing in the Houston area that are suitable as temporary living quarters. When choosing a place to stay, it is most important that it is clean and you can isolate your child from crowds.
Cleaning your Home
If returning to your home after transplant, a complete general cleaning of your home must be done before the patient arrives home. The kitchen and bathroom areas should be cleaned with a weak mixture of bleach and water. Also wash your child’s towels and bed linens including any blankets and comforters. Change all air filters (furnace or air conditioner) before your child returns home and then change them every month for one year. Be certain all curtains and carpets have been dusted and vacuumed or if needed are professionally cleaned. Also wipe down all hard surfaces with a bleach based cleanser. Do not have your child do any cleaning until approved by your doctor.
Setting up a New Schedule
You will need to consider developing a new schedule for your family after transplant. Medically oriented tasks such as medicines, appointments, and treatments can be time consuming and will be added to other household job demands. Each person in the family may need time and encouragement to communicate their feelings regarding their new roles within the family. The demands of transplant on patients and their families are great, and we encourage you to seek help with others such as friends, relatives and neighbors who are more than happy to be called upon to help. The SCT team members are also always available to assist you and you should not hesitate to ask for help. You may also contact your social worker with any concerns or questions.
After the transplant, your child will come to clinic as often as three times a week for check ups. As your child begins to feel better and recovers from the transplant clinic visits will spread further apart. The SCT team will review these topics with you in clinic:
- Medicines: Please bring your medicines to each clinic visit after transplant. The purpose for each medicine, side effects, and schedule for taking them will be reviewed with you.
- Preventing infection: Hand washing, social isolation (restrict contact with other people who may have an infection) and food preparation will be reviewed with you. Call the SCT clinic or inpatient charge nurse’s station immediately for any signs of illness or fever of 100.5F or higher.
- Contact phone numbers will be reviewed. On holidays, weekends or at night, please call the inpatient charge nurse at 832-826-0860. During clinic hours, the SCT team can be reached in the clinic at 832-826-0870.
- Blood pressure readings: Some patients need to have their blood pressure checked at home. If you have been asked to check your child’s blood pressure, please bring the blood pressure record to clinic. Any needed change in your child’s medicines will be based on these readings.
- Blood counts: Blood will be drawn at each clinic visit. The need for a red blood cell or platelet transfusion, or a dose of GCSF (granulocyte colony stimulating factor) to increase his/her white blood cell count is based on blood counts. We will also check drug levels and virus levels in the blood.
- Homecare Medicines/IV fluids/TPN: Your child may need IV Ganciclovir/or Foscarnet, IV fluids, and/or TPN at home. You will be taught how to give these medicines or fluids. Medicines and supplies will be sent to your home by your home care company. Changes in your child’s IV fluids or medicines will be made based on blood tests done in clinic. Your home care company will be informed by clinic staff of the necessary changes.
- Bone marrow aspirations: Bone marrow aspirations will be done only as needed to check your child’s engraftment. Your doctor or nurse practitioner will inform you of any bone marrow aspirations that must be done. They will discuss any sedation that your child may need for tests.
- Illness/Readmissions to the hospital: Your child will be watched for side effects of the conditioning regimen and infections. Most children are readmitted to the hospital to treat these problems. You should come to the clinic prepared for an admission to the hospital if your child is ill or has a fever.