If you end up in the hospital with your child unexpectedly, there are certain steps you can take to make sure your child receives the absolute best medical care. Here are a few words of wisdom from friends who’ve come before you:
1. Before you go to the hospital, create a binder with all the information you will need to give the physicians and nurses. You should most definitely include your child’s medications (including PRN or as-needed medications, supplements, and over-the-counter medications), feeding schedule, list of supplies used with sizes and styles, list of diagnoses, list of doctors with contact information, and insurance information. It is also helpful to have a standard list of what personal and medical supplies you need to pack to go to the hospital, and a list of people to notify when your child is admitted, such as the child’s school, bus company, and supply companies.
2. Make doctors and nurses explain things to your satisfaction. Do not be intimidated by medical speak. If you can’t explain what they’ve said in your own words in a way that makes sense to you, they haven’t adequately communicated what’s going on. This will give you peace of mind. More importantly, it will require the care provider to think things through.
3. Get a notebook or a journal. Write down your questions, new terms, observations about your child, and anything else you think you may be important. So much happens in the hospital over the course of the day. Without writing it down, there is no way to remember it all. Often you’ll be surprised what matters and how valuable your input is.
4. Ask for child life services or a social worker. These people are hugely valuable resources. They can provide you with toys and books for your child, palliative care options (massages, therapy dogs, music therapy), and other hospital and community resources (including a place to sleep, meal vouchers, a toothbrush). If you don’t ask, you may not be told what is available to you.
5. You are needed at rounds. Be there. Take notes and participate. Ask questions. You are entitled to raise concerns or suggest alternatives. You are not a passive member of your child’s medical team. You are the MVP. If you feel you are being ignored or undervalued, tell the charge nurse or social worker.
6. Make sure you know what meds/fluids are running at all times. Ask what things are, why they are running, and what their purpose is.
7. Double check the Medication Administration Record to make sure that all of your child’s medications are listed correctly. Then, make sure the medication syringes dispensed for your child are labeled so your child is getting the correct medications at the correct time in the proper quantities. This is especially true for children who receive medications enterally. Tell the nurses never to give any med/fluid without talking first to a parent/guardian.
8. Use the white board or make signs (you can ask the nurse for a pen and paper). Write down your name and contact information. Write down information about your child, including his or her age, weight, allergies, and diagnoses. Tape signs to the door, the bed, or the IV pole. Don’t expect that everyone is paying as much attention to your child’s chart as you are. If there is something doctors and nurses need to know, write it down and make sure it is conspicuously posted.
9. Recruit primary nurses to care for your child in the hospital who you love and trust. These will be your most important advocates and best friends. If you have a nurse you think is wonderful, ask him or her to be your child’s primary. You can have multiple primaries. Two day nurses and two night nurses is ideal.
10. You are always entitled to a second opinion. It is not rude to ask for one. It’s okay to want to be doubly sure. In fact, it’s smart, especially if the first opinion came from a resident early in his or her career.
11. If you are uncomfortable with anyone taking care of your child–doctor, nurse, therapist, tech–you are not obligated to keep that person on your team. Talk to the charge nurse or social worker. Do not be shy and follow your instincts. Most people in hospitals are wonderful. However, if someone does or says something that makes you uncomfortable, it’s okay to exclude that person from your team. It’s more than okay. Do it, and do not feel badly.
12. You have the right to refuse treatment. If you believe someone is about to do something harmful to your child, simply say, “I refuse treatment and would like to speak with the physician who ordered it now.” Explain your concerns to the doctor and talk it through. You will likely reach a mutually agreeable solution. If you’re still uncomfortable, ask for a second opinion.
13. Do your research. PubMed is great resource, and if you need a password to access an article you think may be relevant, ask the charge nurse to get you one. Ask the doctors and nurses for other informational materials. Google is useful, but it has its limits and pitfalls. You know them. Avoid them.
14. Before you’re discharged, ask for all inpatient records, including any images and lab reports, on a CD. It will be a huge hassle trying to get these later and you will likely need them. Make sure you get multiple copies of your child’s discharge summary. Before going home, make sure the medication list that is included in the discharge summary is accurate and includes all PRN and over-the-counter medications your child will need at home. Also, make sure all orders for nursing procedures and care are included so the transition to home care is as smooth as possible.
Thanks to the MFTD Waiver Families for the tips!