Parent pointers: Coping with a new diagnosis

Parent's perspective:"After the 10th provider left my daughter’s room, I couldn’t remember any of their names, let alone what they did. Business cards were stuffed in my purse. Papers were scattered all over the tray table. It was time for lunch. I was overwhelmed and I felt so out of control!"

Steps to take throughout treatment:

Your child's care team is here to help and may include many new faces. Learn who’s who in the hospital.

• Ask for business cards.
• Use our website to learn more about our services.
• Browse our patient guides to get to know our hospitals:
• Park Ridge patient guide [PDF]
• Oak Lawn patient guide [PDF]
• Take notes whenever you speak with members of your child's care team. Write down questions when you think of them. See more tips for talking to your child's doctor.
• Speak up if you don't understand something. It's easy to get overwhelmed by medical terms.

Parent's perspective:“Soon we had a pile of papers to keep track of. I had no idea how to organize them. I panicked when the doctor asked me a simple question about my son’s health history. I just couldn’t remember and I wasn’t able to find the right paperwork! I felt frustrated and flustered.”

Ways to keep track of information:

Your child's care will most likely come with a pile of papers that must stay organized. Everyone has their own methods, but there are some tips many people find useful.

• Create a three-ring binder. Dividers, pockets and business card holders can really help you keep important papers in order.
• Save your records on a secure flash drive if you prefer electronic storage. Many online apps can also help you stay organized.
• Ask your child's care team for a disk with results of procedures they have had.
• Keep vital information, such as allergies and medicines, where you can find it quickly.

Parent's perspective: "When our child developed diabetes, we didn’t know where to start. We had no idea how to give shots or check blood sugar levels. Counting carbs seemed so difficult at first."

Learn about your child's condition:

Knowledge is power. It really helps to understand what's going on with your child, so gather as much information as you can.

• Consult their care team, which is your best source of information. They are experts, and they know the most about your child’s particular situation.
• Check out our Children’s Health Resource Centers. Both our hospital campuses in Park Ridge and Oak Lawn have lending libraries. Not at either location? See our online resources or contact us for more information. We can help you find reliable information.
  • Park Ridge: 847-723-9484
  • Oak Lawn: 708-684-3225
• Find out if there is a research study (clinical trial) that may be right for your child. The Advocate Center for Pediatric Research may be able to help.

Parent's perspective: "When we learned that our son had cystic fibrosis, it was so hard for me to call our family with the news. Every phone call brought tears. After a while, we just didn’t want to talk to anyone anymore."

Easy ways to share:

Giving updates about your child's condition to your family and friends can be overwhelming at times, but there are ways you can make it less stressful.

• Think about starting an online blog to update a lot of loved ones at once. Then you won’t have to repeat your story over and over. Some websites will allow you to create a password-protected site, including:
• Caringbridge.org
• Posthope.org
• Appoint a spokesperson you trust to tell others what is going on when you just don’t feel like talking.

Remember to use your judgment about how much to share with others, especially online. How will your child feel about what you tell others? Once the crisis has passed, how will you feel about others knowing the information you shared? Everything you post online becomes a part of your digital footprint for good. Learn more about online safety.

Parent's perspective: "After my daughter suffered a brain injury, there were lonely times and dark thoughts. Each day brought its own up and downs. When she improved with therapy, I felt pride, joy and a need to move forward. At times, it was hard to deal with conflicting feelings."

How to get the support you need:

Your child’s care team is made up of many people who can support you and your child. Chaplains, psychologists and social workers can help you find ways to cope. Sharing your fears with a favorite nurse can also be helpful. Child Life specialists, art therapists, and music therapists can help your child deal with feelings about being in the hospital. They can teach your child about their care in kid-friendly terms. Family and friends will likely want to be there for you.

• Let family and friends know when your child is ready for visitors. You may spend a lot of time waiting in the hospital. A friendly visit can help pass the time.
• Request meals. If you're going back and forth to the hospital, find someone who can organize a meal schedule for your family at home.
• Ask for gift cards to local restaurants close to the hospital.
• Accept help, and be willing to provide suggestions.
• If you are part of a faith-based community, you may find spiritual, emotional and practical support there.

Parent's perspective: "When our baby was in intensive care, we were so tired! We had no energy for even the simplest of tasks. Our friends said, 'Let us know if you need anything.' Everyone means well, but asking for help is awkward. Someone gave us a gift card for a cleaning service. That was a big help because who cares about cobwebs when your baby is in the hospital."

Simple tasks that go a long way:

• Prioritize your time. Decide what's most important and what can wait.
• Take a break. Step away from the hospital for a few minutes. Clear your head. Even a short walk may help. Some hospitals have fitness centers that offer discounts to family members of patients. Play a game or watch a movie with your child. Child Life specialists can give you board games and Wii games to share.
• Eat regular meals, stay hydrated (water is best), and get some sleep. This may be hard to do, but it’s so important for you to stay healthy for your child.
• Start a diary. Writing a journal about your experiences and feelings can be very therapeutic.
• Ask your care team about support groups, peer mentorship and other support programs for families.

Parent's perspective: "After my son was diagnosed with leukemia, I noticed my daughter’s grades started to slip."

Show your other kids love:

Having your child in the hospital is stressful for your whole family, including their siblings. Your other children also need attention.

• Spend time with them, even if it’s through a call, a text or FaceTime.
• Answer their questions. Use words each child can understand. Don’t over-explain, but be honest. It's OK to say “I don’t know” when you don’t have answers.
• Keep as many scheduled routines as possible. Routines are very important to children. Keeping those routines can help your kids feel in control and relieve their anxiety.
• Ask our Child Life specialists for help. They can help you find ways to keep your other children informed about their hospitalized sibling and how to cope.
• Seek out sibling support groups. We have support groups to help kids cope with having a sibling with special needs. We also have a medical play program for children with siblings in the NICU. For more information about these programs, contact the Children’s Health Resource Centers.
• Communicate with your children’s teachers about the illness in your family. Remind them that your children may need extra attention or help to focus.

Parent's perspective: "I was so scared I wouldn’t be able to handle my child’s disability when she left the hospital."

What you need before discharge:

Your child’s care team starts planning for discharge well in advance to make sure you and your child have everything you need when you go home. Your child’s care manager will stop by your child's room to discuss discharge needs with you. Nurses, therapists and other team members may teach you to provide some of your child’s care at home. Be sure to ask questions. Your team will want to address your concerns before discharge. Please be assured, your child’s care manager will work with you and their care team to create a safe discharge plan.

Consider asking:

• Any questions you may have about your child's symptoms, health problems or medicines.
• Whether your child will need special equipment or nursing care at home.
• If your child will need more treatment or therapies after discharge.
• Any questions you may have about your child returning to school or day care.