Before Your Stay in the CCU
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We understand that having a sick child can be extremely stressful. Our CCU team wants you to know that we are here to partner with you, to promote healing, and to help you and your child through this difficult time.
As you prepare for your child's stay in the CCU, here is important information to note.
Preparing Your Child for Surgery
An upcoming medical procedure or time in the hospital can bring about feelings of anxiety among children and teens. Preparing children in advance of the surgery and hospital experience will reduce stress and promote an environment of trust between the child and hospital staff.
Tips to Help You Talk to Your Child about Surgery
As a parent, you play a crucial role in helping your child or teenager cope with having surgery and being in the hospital. It is important for you to talk with your child, in a way that they understand, about their upcoming surgery. Be sure to tell them the reasons the surgery is needed. Review the steps of what will happen before and after surgery with your child. Ask your child if they have any questions, this will help them feel less afraid.
Tips for Caregivers
Before talking with your child about an upcoming surgery, speak with your medical team to better understand your child’s condition and scheduled surgery. Even infants can sense a parent’s anxiety and will look to you for how to react to a new situation such as surgery. The more information you have about the tests, treatments or procedures your child will need, the better prepared you will be to support your child while they are in the hospital. Children respond to new experiences in their own unique way; however here are some general age-based reactions.
You know what is stressful to your infant. Keep these things in mind while you help to prepare your child for surgery. Common stressors for infants include the following:
- Being separated from parents
- Having different caregivers
- Being unable to drink or eat
- Unfamiliar sights, sounds or smells
- A change in their “normal” routine
- Interrupted sleep
- Confusion of day and night
The best way to prepare your infant is to prepare yourself. Take care of yourself -- eat, drink and get good sleep. Ask questions to help you feel more comfortable. Simplify your routine the day before surgery as much as possible. Avoid unneeded activity and allow friends and loved ones to help with odd jobs or extra tasks. For the day of surgery, bring your baby’s favorite comfort item—blanket, toy, stuffed animal, etc.—to help them feel comfortable in the new environment. Suggestions for helping your infant cope include:
- Soft singing/talking
You know what is stressful to your toddler. Keep these things in mind while you help prepare your child for surgery. Common stressors for toddlers include the following:
- Being away from caregivers
- Thinking that they are being punished
- New sensations/painful sensations
- Medical equipment that looks or sounds scary
- Staying in a strange space
- Being away from familiar people, places or things
- Meeting unfamiliar people
- Limited mobility/freedom
A day or so before the surgery is a good time to discuss what will happen and why it has to happen. Too much time can produce more anxiety and toddlers don’t understand the concept of time just yet. Be open and honest; use simple words to talk about the surgery and what part of the body it will be on. For example, “make your heart better.” Reading books about going to the hospital and introducing medical-themed toys can help your child become familiar with what is happening. Let them bring their favorite comfort item with them to surgery as well. Their favorite toy or blanket will be able to stay with them throughout their experience, even in the operating room.
After surgery, your touch and voice will comfort your child the most. Sticking to normal routines as much as possible will also help your child with the healing process. Allow your child realistic choices that will help them to feel a sense of control. For example, let them choose which toy to bring or how they’d like to take their medicine (spoon, cup or syringe). Reassure your child that surgery is not a punishment and that you will be with them as much as possible. Above all, be patient. It is expected that your toddler will “act out.” Caring for yourself will in turn help you care for them.
You know what can be stressful to your preschooler. Keep these things in mind as you help prepare your child for surgery. Common stressors for preschoolers include the following:
- Being away from caregivers
- Thinking they are being punished
- New sensations/painful sensations
- Fearing damage to their body
- “Magical Thinking” or powerful imaginations may cause them to think things are worse than they are
The hospital environment can limit a child’s ability to make choices. The environment may change often and is full of new faces. Talk with your child about being in the hospital 3-5 days before the scheduled surgery. Read books about hospitals to your child and use pretend play to practice what the hospital will be like. For example, present your child with their favorite toy, explaining that the toy needs to have his heart fixed, have his heartbeat checked, etc. Using a toy medical kit, your child can take the toy’s temperature and listen to its heart and breathing. This type of play gives your child a sense of control. It can also help you understand what they are most afraid of based on how they treat the toy.
Use simple explanations. Preschoolers have a hard time understanding “double-meaning” words and phrases. For example, you can explain anesthesia by telling them something like, “The doctor has special sleepy medicine to give you so that you sleep through your surgery. You will not feel anything that hurts you.” We urge you to avoid terms like “putting to sleep” as they can connect that to thinks like a pet that has been put to sleep. We also suggest exchanging words like “cut” with “small opening” and using “poke” instead of “shot”. Reassure your child that surgery is not a punishment but is something that lots of kids need to help them be healthy and strong. Encourage them to express how they’re feeling and let them know it’s normal to feel scared or need to cry. You can assure them that you will be with them as much as possible.
You know what can be stressful to your school-age child. Keep these things in mind when you help prepare your child for surgery. Common stressors for school-age children include the following:
- Fear of “looking different” afterwards and fear of injury
- Fear of loss of “normal” body functions
- Desire to be independent while still needing a lot of care from caregivers
- Anxiety about illness, possible complications and the effects of the medical treatment
- Feeling a loss of control and doing something “embarrassing”
- Feelings of helplessness, loss of respect and love
- Fear of pain, fear of waking up during surgery
- Concerns about privacy and modesty
- Being away from “normal” life, like school and friends
School-age children can understand a lot of information so it is important that they are involved in open, honest talks about their care. When your child feels that they are included, they feel a greater sense of control over the situation. Begin the conversation with your child at least 1-2 weeks before surgery. Make sure your child knows why the surgery is needed in words that they can understand. Having them explain it back to you can be a great way to assess what they understand. Assure your child that no matter how old they are it is okay to cry, feel scared or be nervous. Encourage them to ask questions of you and the medical staff and remind them that everyone wants them to feel better, not worse. It may also be helpful for them to know how the surgery helps them. For example, helping them to breathe better, having more energy to play sports, etc.
While in the hospital, it is good to arrange to have a trusted family member or friend with your child. If you have to leave tell your child when you are leaving, why you are leaving and when you will return. We encourage you to explain each step to help them feel a sense of control and understanding.
Encourage them to bring comfort items from home as well, including favorite blankets, stuffed animals, books, etc. Praise and encouragement can help lessen some of the stresses of being in the hospital. Connecting your child with their friends and loved ones after surgery via telephone, cards, etc. can be a great way to focus their minds on recovery and healing. Being supportive, honest and treating your child as normally as possible is very important. They may behave like a younger child. Such outbursts of anger or sadness are all normal. Remind your child that you are there to listen and encourage them to talk about how they’re feeling.
You will be better able to prepare your teenager for surgery if you know what she or he is worried about and how you can help. While teens can be very independent, they still need your support during stressful times. One of the most important parts of caring for your teen before, during and after surgery is making sure they are an active participant in their care. This helps them to feel a sense of control and encourages them to follow doctor’s orders. It can also support better overall coping and a general belief in themselves.
Common fears include the following:
- Loss of control and privacy
- Being away from their “normal” life and their friends
- Concerns about how they may be thought of within their social network
- Fear of surgery, fear of the risks
- Fear of waking up during surgery
- Having a part of his/her body damaged in function or appearance
- Fear of dying during surgery
- Fear of pain, fear of the unknown
Teenagers benefit most from clear, honest communication from you and the medical staff about what will happen and why it needs to happen. Teenagers have the right to know what is wrong with their bodies and what will be done to help them heal. They are capable of playing a key role in their own healthcare decisions, such as making choices on their own behalf when it is appropriate. The way you give them the information is just as important as what information you share with them. Encourage them to ask questions for their own knowledge and for clarification if things don’t make sense. Assure them that becoming emotional is common, normal and appropriate. Allow them an outlet for thoughts and feelings.
Also consider giving them privacy when appropriate to help your teenager cope with hospitalization. Have a discussion with them about if and how they would like to share news of their surgery with people outside of the family. If you are comfortable, involve your child’s friends and family members in providing support to your child before and after the procedure. Finally, remember to be patient with your teen. They may go through mood swings throughout the process and may not want to talk or answer questions but may become interested later. Your child may need to be alone, but conversely, may need more attention. Remember that this is temporary and that at the end of the day, you are a main source of comfort to your child.
Preparing for Your Stay
- Please leave all valuables (like jewelry or money) at home.
- The hospital has linens and pillows available, but if you or your child has a favorite pillow or blanket you can bring those to help make you more comfortable and help the room feel more like home.
- Hospital gowns are available for your child to wear. It is usually easier to wear the hospital gown the first day after surgery but after that, your child might feel more comfortable in their own clothes or pajamas. Choose clothes that are loose fitting, that button or snap, and are easy to get on and off. Slippers are also helpful for getting out of bed after surgery. Also bring a pair of shoes that are easy to walk in as we will want your child up and moving as soon as possible.
- Please bring the personal bathroom items your child uses on a daily basis (toothbrush, toothpaste, brush, deodorant, lotions, hair dryer, etc.). The hospital will provide some of these items; however, most people feel more comfortable with their own personal belongings. It is especially important for teenagers to be able to feel like themselves and feel good about their appearance, just as if they were at home.
- You do not need to bring diapers, wipes, formula or baby food for younger children; these items are all provided by the hospital. If your infant or toddler has a special bottle or cup they like to use, please bring those as it can help encourage drinking after the surgery. If your child requires a specific brand of a product for their care (i.e. a specific type of diapers or wipes), please bring it with you.
- Feel free to bring iPads, cell phones, head phones, hand-held games, and laptop computers. The hospital has wi-fi, so laptops are easy to use and can help you and your child keep up with work or school and communicate easily with family and friends. These items are a great distraction for both you and your child while your child is recovering. Don’t forget to bring your chargers.
- Bring toys, books, Sudoku/word find/word puzzle books, journals and anything your child might like to keep them occupied and distracted. We also have a lot of toys at the hospital, just ask the child life specialist or volunteers.
- You might want to pack a few snacks to have in the room for easy access.
- We have dedicated refrigerators and freezers where we can store your breast milk. We have lactation rooms available and there are Medela pumps in each patient room for your convenience. We have supplies for this pump, but if you prefer to use your own pump, you may bring your pump and all of your supplies with you.
- Parents/Guardians: Don’t forget to pack for yourself. The hospital provides linens and towels, but you will need to bring your own toiletry items, comfortable clothes, sleepwear and slippers. The day of surgery, it is best to leave belongings in your car/hotel room/RMH room until after your child is out of surgery and in their room.
Several area hotels offer special rates to families with children staying at the hospital.
In addition, Ronald McDonald House near Lurie Children’s is located at 211 E. Grand Avenue, a short walk south from the hospital. The House, which is currently the largest in the nation, offers 15-stories of care & comfort for families of hospitalized children and includes 86 guest rooms, a rooftop healing deck and a kitchen filled with home-cooked meals and supportive conversation. There are 15 transplant-only rooms located on 2 upper floors.