Tips for the ICU

Dixie Coskie is the mother of a child who lived through both a traumatic brain injury and cancer. In this chapter from her book, Unthinkable! A Caregiver’s Companion, Dixie shares her experience helping her son while in the ICU.

In the ICU

• Be patient; pray if praying is a part of your belief system.
• Don’t be ashamed to cry or to ask more and more questions.
• Talk to your child, hold his or her hand, and believe that he or she can hear you. Ask him or her to please give you a sign that he or she can hear you. Let your child know you are there and that you will not leave him or her. Reassure your child that he or she is receiving good care.
• Get to know the surroundings. Ask about the equipment and monitors in the room, such as how to read information such as heart rate, pulse, and oxygen levels. Ask a nurse to explain the purpose of each tube. Ask how to operate the hospital bed.
• Ask for the names, purposes, and possible side effects of medications that are being administered. Ask about the time intervals of dosages. Write down this information as well as any procedures being done and any questions you have.
• Find the locations of the light switches, the coffee machine, the time-out areas, the bathroom and waiting area for visitors, and cots for parents.
• Find a private area in the hospital where you can meet your spouse or significant other to talk and cry in private.
• Ask and demand that you can spend the days and nights with your child.
• Get to know the nurses; you’ll soon learn which ones are the most helpful and which ones are less so.
• When any medication is being administered, check and double-check the name of the drug and the dosage.
• Realize that nurses work in shifts and are not “on” every day. They could not possibly always be up-to-date with changes being made in procedures or with all medication changes; you need to be aware to watch and help if you can.
• Seek out a social worker. He or she can help during this tremendously emotional time and can also help you with your insurance company to retain a case worker to follow your medical case and work with you on financial coverage.
• If your child is about to turn eighteen, many states require that families notify the insurance carrier of the child’s disability for the health insurance to continue under the family’s plan.
• Government programs such as Medicaid and/or Medicare may help with medical costs.
• The department of insurance in your state may help with problems such as being uninsured or underinsured.
• If your child is eighteen or older, he or she is a legal adult and has the power to make all medical decisions. If your child is impaired and not able to make decisions, you may consider becoming his or her legal guardian.
• Allow yourself time to feel what you are feeling and to express those feelings. Anger, extreme sadness, and grief are normal.
• If you have not been very religious in the past, perhaps you will feel your spiritual life awakening or past religious beliefs surfacing.
• Call your employer, let them know the situation and that you will not be coming to work.
• Take time to bring other family members up to date; regularly call your contact person to relay information.
• Make sure you have put someone you trust in charge of taking care of your other children so that you and your spouse/partner can focus on your injured child.
• If you are not married or don’t have a good relationship with your spouse/partner, ask a friend to stay with you at the ICU.
• Search for hope; ask to talk to a social worker or spiritual director, or seek out other parents who have gone through a severe head injury in a child. Learn of their experience…and their recovery.
• Be awake and ready to talk to doctors early in the morning when they make their rounds. Have your questions ready. For example, is my child stable? Responding to the medications? What can we expect? When — or will — he or she awaken? What can we do?
• Trust the nurses when they ask you to take a walk, go to the café, get some sleep, go home, take a nap, talk to your spouse. Be patient.
• Don’t try to project what will happen in the next two weeks or two years — live and deal in the moment.
• Set a schedule. Try to have one parent home for your other kids, and one at the hospital for the injured child. If you are divorced, try to put differences aside. If one parent is not available, enlist another family member or friend.
• Don’t forget about your other children at home. Check on them by phone, text messaging or e-mail. Reassure them and allow them to cry, vent, and show their fears. Try to best answer their questions, and when words cannot console…pray.
• Seek out someone other than your spouse/partner to express your fears and frustrations. Find someone who will listen and not judge.
• Try to understand the situation is not caused by you or God — get rid of guilt.
• Know the difference between coma, induced coma, and persistent vegetative state.
• Consult the ethics personnel at the hospital so that you become informed on how the hospital deals with issues such as continuing life supports or allowing one to die.
• Continue to ask questions and know everyone involved in your child’s treatment; this will include numerous health care personnel, including the ICU personnel, trauma doctors, neurosurgeons, plastic surgeons, respiratory nurses, physical therapists, occupational therapists, speech therapists, social workers, financial advisors, and more.
• Realize that your emotions, which are likely to be many, strong, and swing frequently, are normal: anger, denial, forgetfulness, disorganization, confusion, feeling disconnected and alone.
• Having arguments and disagreements with your spouse/partner is normal; you are both under tremendous stress.
• Forgive quickly and move on so as not to add even more stress to the situation.
• Vent your anger alone, perhaps while driving to and from the hospital, or just have time to cry in private.
• Think and visualize positive thoughts. Be conscious of your breathing and think positive in any way you can.

Advocate for Your Child

• Make sure your child receives his or her medications and is treated with dignity. This includes having appropriate undergarments; having catheters, IV lines, or diapers changed in a reasonable timeframe; and having daily sponge baths.
• Always discuss pressing issues outside of your child’s room; always try to instill hope in your child’s presence, as if he or she can hear you (and maybe he or she can).

• Know that your child’s response to pain, though heartbreaking, can be a positive sign.
• Try not to get involved with other families’ or patients’ drama in the ICU.
• Know key words such as tracheotomy, ventilator, respirator, skull fractures, contusions, concussion, storming, etc.
• Educate yourself on brain injury and related medical issues. Ask for books, magazines…anything that will help you better understand words such as acnosia, agraphia, anomia, anosmia, alexia, ambulate, etc.
• Understand that a brain injury can ultimately cause problems with how a person moves, thinks, communicates, feels, and behaves.
• Know that you cannot give what you do not have.
• Know your limits and what you can and cannot do. For example, can I watch a bloody procedure? Can I stay here one more night?
• It’s normal for siblings to have conflict; they may resist going to school or studying, or act out. Let teachers know what happened and seek out school counselors to help with the new terrain, because your priority at this time must be with your injured child.
• Keep up to date with your child’s medical issues—talk hourly with the doctors and nurses — and never stop talking and asking questions.
• Never stop talking to your child and reassuring him or her that he or she is going to get better. No one knows for certain if people in comas can hear, so it’s best to assume they can and act accordingly.
• Know who the doctor is who is ultimately in charge of your child’s case. This doctor is your child’s health care team leader. Like nurses, doctors work different shifts, and the specific doctor who looked at your child today may not be back for several more days.
• If you have any problems or personality conflicts with any nurse, let the head nurse know the problem.
• If you have any problems with a particular doctor, consult with the ICU supervisor.

Preparing Your Other Children and Grandparents for a Visit to the ICU

• Ask friends and acquaintances to not visit the ICU at this crucial time; let them know they are important to you and that you will need them later in recovery.
• Call home daily to give age-appropriate answers to your children’s questions, but do not get caught in details.
• Help children understand why and how the injury happened. Younger children often blame themselves for the incident, while older children may question if they could have prevented the injury; reassure them there was nothing they could have done.
• Give reassurance that the injured child is getting good care.
• When you feel the need to bring your other children to the hospital, talk to the hospital’s child life department, which helps siblings and grandparents cope with the situation and prepare for their visit.
• Never force your other children to visit; wait for them to ask, and wait until they are ready to arrange the visit. Help prepare children by giving them age-appropriate written and verbal information on brain injury. Give them time to absorb the information and the situation.
• Encourage your other children to write cards or send pictures to help decorate the hospital room.
• If siblings have become “quiet,” do not assume that they are okay or have accepted the situation; often, they do not want to add to your burden.
• Have someone else bring your other children to the hospital to visit their brother or sister. Make sure you have described the situation to prepare them; show them a picture of the injured child lying in bed, surrounded by the machines, and try to explain how the monitors and doctors are helping.
• Be truthful. Explain what the doctors are doing and hope to accomplish, but also let children (in age-appropriate terms) and grandparents know the reality of life and possible death. Ask everyone to trust in God.
• Give children and grandparents permission to cry and to talk about their feelings.

What Friends Can Do

• Ask a friend to pack and bring a small suitcase for the parents to the ICU: toiletries, change of clothes, sweats, sweatshirts, comfortable t-shirts, small blanket, small medical dictionary, important phone numbers and e-mail addresses, pocket book, camera, gum, small snacks, a blank notebook and pen, a copy of Unthinkable, etc.
• Listen, be patient, give hope.
• If you are new to your community and do not know many people, contact your nearest neighbors, local organizations, or your church for assistance,
• Ask a good friend to take charge of scheduling other friends and neighbors to help with cleaning, yard work, childcare carpooling, and grocery shopping.
• Organize a food schedule with kid-friendly meals for the other children. Tell the cooks of any allergies the children may have. Keep all containers disposable. Set a consistent time of day to drop off the meals. Paper cups, towels, and plates are helpful.
• Buy gift cards: coffee, gas, fast food, and for any restaurants near the hospital.
• Put together an e-mail and phone list to keep others up to date.
• Think about organizing a fundraiser for the future.
• Hold on to hope.
• Pray.

What Friends Should Not Do

• Don’t try to avoid the parents, but give them their space when needed.
• Don’t offer advice, pity phrases, or quick solutions, such as “I know what you’re going through,” “You should _______,” “Time heals all wounds,” or “You’ll be okay.”
• Don’t pry into personal matters, but be there to listen whenever your friend wants to talk or tell you something.

Read book excerpt from Unthinkable.
See Tips: The Rehabilitation Hospital