PHS understands what a whirlwind life becomes when preparing to leave the hospital with a medically-fragile child. We met with a few of our experts, PHS Medical Director, Dr. Roy Maynard and PHS family mom and Infusion nurse, Jill Wall, RN, BSN, CRNI as well as included input from the entire clinical team to compile a list of tips for families to consider when getting ready to leave the hospital. Once the process is in place for a patient to leave the hospital and they are stable and ready to go, things can move rather quickly. The tips below will help get you organized and ensure you have necessary information from the hospital staff before you leave, ensuring you won’t have to make extra phone calls to track down information later.
What to consider before leaving the hospital:
- All contact info on one piece of paper. Ask the hospital for one single piece of paper that has the contact information for your primary care doctor and all the different specialists who will be following your child after discharge, and when to call them. The hospital may give you individual cards, but a single sheet with all relevant contact information is much handier.
- Interview to find good a good fit. Interview both a DME company and nursing agency before making selections. Find a company you feel comfortable working with. If you know your child is chronically ill and will need long-term nursing care, be sure to ask the agency if they will stay with you over the long term.
- Train family/friends that will care for the child. Encourage family members and friends to go through hospital training to provide suitable backup when needed. Better yet, identify KEY people who will be in the home consistently staying up-to-date on the care your child needs and how to administer each care.
- Organize vaccinations. Make sure vaccinations are up-to-date before going home and ask for a copy of the schedule to keep in your personal records.
- Learn about your coverage. Learn to work within insurance limits or find other payment options. At-home insurance coverage will be different than in the hospital and there will likely be extra expenses not covered by insurance. Contact your insurance provider before discharge for specifics about in-home care for your plan.
- Learn as much as you can while in hospital. Build your confidence by spending as much time as possible, including overnights, with “care by parent” under hospital staff guidance at the hospital.
- Get as much sleep as possible the night before discharge. Although we mention spending overnights at the hospital in the point above, try to go home early the night before discharge and get a FULL, restful night’s sleep. Your child is safe in the hospital for one night and you will need and appreciate that uninterrupted night after bringing your child home.
- Adjust medication schedules to home schedule. If the doctor has not suggested it already, ask if medication/feeding schedules can be safely rearranged to simplify the workload at home (for example, could an infant on electrolyte supplementation go from 4x/day to 3x/day or 2x/day?). While still in the hospital ask to adjust the schedules to the way it will be done at home at least one week before discharge. This will give you and your child time to acclimate.
- Have your home set up prior to discharge. PHS helps families with high-tech patients sort through equipment and supplies so that you don’t come home to boxes full of unfamiliar products.
And lastly, never feel alone. PHS and the hospital staff are always there to help you through the process of transitioning to home. You can see a full list of tips like the ones above here, where we cover tips for you after you’ve arrived at home, as well as tips to reduce stress and strain on you, and your family. Do you have any other tips or thoughts that you’d like to add to the list? We know the families who have already been through the process are the real experts and we’d love to hear from you!
