I never imagined what a hospital stay would be like for my child with a disability and was not mentally prepared for it. I knew that there would be at least one or two possible stays because she has complex medical needs. So when the day came to admit her, I felt so unprepared and helpless. Here is what I learned from the experience.
Anytime you take your child to the ER, take an overnight bag in case your child is admitted. Pack an extra outfit, toothbrush, hair brush and deodorant for you and your child and their favorite comfort items. Also, pack any medications that you or your child take.
Be prepared to advocate for your child. When my daughter was admitted for an extended period of time, the most frustrating part of the visit was feeling like I was not being heard. I had to repeat myself constantly. Do not give up, keep repeating whatever information you want them to know. Having your child’s doctor(s) send your child’s records to the hospital can help.
Make sure that your child is getting their medication as prescribed and on time. The hospital will not let you use the meds you bring from home, but having the labeled bottles will show what they are taking and when.
If your child gets transferred to another floor at the hospital, sometimes information is lost or changed. The doctor from one floor may tell you one plan and then when you move to another floor or see another doctor, their plans or information might be different. Keep asking questions.
Nurses can be our best friends. Your child will have a nurse assigned to them for each hospital shift. Each floor and shift also has a charge nurse. If your child’s nurse cannot answer your questions or concerns, then ask for the charge nurse. The charge nurse will get the doctor if necessary.
You can also ask for a care conference if there is more than one doctor involved so all the doctors will be together, at the same time, discussing your child’s case. The nurses can help get that set up.
Each day, the medical team will do rounds and discuss each patient. Ask to be included when the team is discussing your child. If something does not seem right or you were told something different, say so. You are your child’s advocate. Make sure you understand what is being said and ask any questions you need to. You are the parent and you know your child best.
Having a child in the hospital can be scary and overwhelming. Your child may not be able to speak for themselves. Some days will be very frustrating and you will feel helpless. Find ways and places to make some time for yourself and help ease the stress. There are usually parent resource or break rooms, and a chapel or meditation room. Walk the halls, go outside for some fresh air, or visit the cafeteria. Taking care of yourself will help you through this time.
I feel a little more prepared for the next time we have to visit the hospital. There are additional resources on this website such as How to Talk to Your Doctor, Organizing Medical Records, and What is a Patient-Centered Medical Home for Children.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.