Your Child in the Hospital

A Practical Guide for Parents

Childhood Cancer Guides

Contents

Before You Go

"Never look back unless you are planning to go that way."

— Henry David Thoreau

Most parents would be glad never to have to take their child to the hospital. Hospitals can be noisy, overwhelming, frightening places for children as well as parents. However, being prepared and getting the information you need before taking your child to the hospital can make the experience much easier for you, your child, and the rest of your family.

Is hospitalization necessary?

In emergencies, you may not have time to ask the doctor questions about your child's hospitalization. But, in most circumstances, you can discuss the reasons for hospitalization with your child's doctor in advance. Here are a few important questions to ask when your child's doctor recommends hospitalization:

• Why is hospitalization necessary?

• Which hospital is best for my child?

• Are there any alternatives such as outpatient surgery?

• Who will perform the procedure or surgery?

• Would you explain the procedure or surgery in detail and in language that I understand?

• Are books, pamphlets, or videos available that describe the procedure or surgery?

• Is there a child life specialist on staff who will discuss the hospitalization with my child and answer his questions in advance?

• Will our insurance cover it?

Try to get enough information to help you and your child prepare for medical treatments and procedures. Knowing what to expect will lower your anxiety level as well as your child's.

When Claire had her tonsils out, they did it as an outpatient surgery. At first I was shocked that they were going to send my daughter home after just a few hours, but now I'm so glad they did. I think it's almost always better to be at home if you can be. It's more cost effective and your child can benefit from a familiar environment and the comforts of home.

Get a second opinion

Most doctors welcome consultations and encourage second opinions. There are many gray areas in medicine where judgment and experience are as important as knowledge. In addition, many insurance companies require a second opinion. If, after discussions with the doctor, you are still uneasy about any aspect of your child's medical care, do not hesitate to seek another opinion.

There are two ways to get a second opinion: see another specialist, or ask your child's doctor to arrange a multidisciplinary second opinion. Many parents get a second opinion before moving ahead with any but the most routine or emergency treatment. You do not need to do this in secret. Explain to your child's doctor that, before proceeding, you would like a second opinion.

Try to find an independent doctor to provide the second opinion because it may be tough for doctors who share a practice or regularly give each other referrals to provide entirely objective opinions. To allow for a thorough analysis, arrange to have copies of all records sent ahead to the doctor who will give the second opinion.

Sometimes, with complex illnesses or injuries, a group of specialists will meet to review the case. Ask your doctor about this type of multidisciplinary review if you believe your child needs one.

Parents often hesitate to ask for a second opinion because they are afraid of offending their child's doctor. Your child's doctor should not resent it if you seek a second opinion. If she does resist, explain that you need a second opinion to feel comfortable proceeding with the proposed treatment.

When Ian's doctor recommended surgery to correct his eyes, which were starting to turn in, I was very reluctant to agree because Ian was so young. The doctor told me that without surgery, his eyes could get worse and would not be able to be treated in the future. I talked to a lot of other people and got a second opinion. At that point, we felt much more comfortable going ahead with the surgery.

Find a specialist

Often a hospitalized child will need a specialist to perform surgery, give anesthesia, or provide other treatment. Your choice of specialists may be limited by the hospital, location, time constraints, or insurance restrictions. Usually, your child's pediatrician will recommend an appropriate specialist (e.g., a pediatric surgeon). Make sure that your insurance will cover the specialist you choose.

The following list may help you feel more comfortable with the recommended specialist. If you have time, make sure that your child's specialist:

• Is board-certified. This means that the doctor has passed rigorous written and oral tests given by a board of examiners in his or her specialty. You can call the American Board of Medical Specialties at (866) ASK-ABMS (275-2267) or visit https://www.certificationmatters.org/is-your-doctor-board-certified search-now.aspx to find out if your child's specialist is board certified.

• Establishes a good rapport with your child

• Communicates clearly and compassionately

• Answers all questions in a way that is easy to understand

• Consults with other doctors about complex problems

• Makes all test results available

• Is willing to let you participate in the decision-making process

• Respects your values

Often the specialist your child's doctor recommends is a good match and the family finds him easy to communicate with, competent, and caring. If you don't develop a good rapport with the first specialist recommended to you, ask for or locate another doctor.

We had a wonderful relationship with the specialist at the children's hospital. He perfectly blended the science and art of medicine. His manner was warm, he was extremely qualified professionally, and he was very easy to talk with. He welcomed discussions with us about our daughter's treatment. Although he was busy, we never felt rushed. I laughed when I saw that he had written in the chart, "Mother asks innumerable appropriate questions."

Make a plan

Begin planning your child's hospitalization as soon as you find out that it is necessary. Even a brief hospital stay can be physically draining and emotionally difficult, so take time before the visit to prepare your child and the rest of your family.

• Arrange care for your other children. This should be with someone they know and like who can help the siblings carry on with their normal routine (school, music lessons, sports). Also, child care should be flexible in case you need to stay longer than planned at the hospital.

• Plan how you will keep your household functioning. Find a friend or neighbor to feed animals, water the plants, and pick up mail.

• Take time off work and notify your child's school. If the hospitalization might be lengthy, read Chapter 15 for ways to work with your child's school.

• Make a list of the names and telephone numbers of people you can call on for help. Consider designating one person to call family members and friends to share news, coordinate food, or baby-sit.

• Pack ahead of time. Your child might want to help choose which clothes, toys, and books to take to the hospital. You can use the Packing List in the back of this book to figure out what to bring.

• Plan how you will prepare your child and her siblings for the visit. Consider whether your child might be comforted by a hospital tour, a talk with the doctor, or a chat with other children who have undergone similar treatment. You might visit your local library or the hospital library to find books about your child's illness or injury or about hospital stays. The Resources section in the back of this book contains suggested reading.

My daughter has been hospitalized twice to control her seizures. To prepare, I went to the library and took out every book they had on seizure disorders. I asked the neurologist if he had any books to recommend. Then I went to the school nurse and asked her to give other parents of children who had seizures my name and telephone number. I contacted the Epilepsy Foundation and they sent loads of literature plus a list of people to contact. Talking to the other parents and reading books really helped us plan for hospitalizations.

The Emergency Room

"The best way out is always through."

— Robert Frost

Doctors and nurses in emergency rooms treat serious trauma and illnesses every day. They work under stressful conditions and may not have time to explain what is going on or make your visit comfortable. Often, especially on Friday and Saturday nights, the emergency room is full. During very busy times, you'll probably wait for a long time if your child's condition isn't life-threatening.

Avoid the emergency room if possible

Try to avoid the emergency room whenever possible. Your child's pediatrician or a walk-in clinic often will treat your child more quickly and efficiently than an emergency room. In addition, the pediatrician is more familiar with your child and less expensive than the emergency room.

Many parents also try to avoid taking their child to the hospital in an ambulance. In some areas, public ambulance service is free; in other regions, the shortest of ambulance rides can cost hundreds of dollars. However, do not drive if the emergency is life-threatening, if your child may require treatment during transport, or if you are too worried to drive safely. When in doubt, call an ambulance.

When my teenaged daughter tore a ligament in her knee early one Saturday morning, we called our doctor, and he said to go to the emergency room to get a diagnosis and then call the orthopedic surgeon to make an appointment for further treatment and follow-up. We knew we might have to wait a long time, so we each brought a book and practiced being patient.

If you have time, call the pediatrician before you go to the emergency room. She may be able to suggest a treatment option that helps you avoid the emergency room altogether. If you must go, your child's pediatrician may be able to meet you there. In addition to a comforting presence, your child's doctor can provide a second opinion, a referral, or pertinent information about your child's medical history.

It can also help to bring your spouse or another adult who acts as an advocate while you comfort your child. The advocate can call family or employers, fill out paperwork, and ask questions. Having another adult present allows you to stay at your child's side so that you can attend to her needs.

Bring something to do

Emergency rooms pick the most urgent cases to treat first. Depending on the emergency room's patient load and your child's needs, you may wait hours for treatment.

One evening my 3-year-old, Gylany, fell off the couch, hit her head on the floor, and passed out for a few seconds. I scooped her up, grabbed my 5-year-old, and went to the emergency room. We checked in, then waited for over 2 hours. My kids were exhausted from crying. Whenever I asked the receptionist how long it would be, she said, "They will be right with you." Gylany threw up, and we still waited a half hour before they finally saw us. We were there until one thirty in the morning.

Even if you have just a moment before bringing your child in, try to grab something to comfort and distract your child: a stuffed animal, a familiar book, some crayons, or a computer game. If you don't have time to bring something, ask at the emergency room desk. Many emergency rooms keep some toys on hand for such occasions.

You should also try to explain to your child what will happen during the visit. Even if you don't know the details, you can explain that the doctor will ask lots of questions, do an examination, and help her feel better. Reassure her that you will stay with her the whole time.

Stay with your child

Whenever your child goes to the emergency room, he should have a reassuring parent present if possible. At times, staff members may try to keep you out of treatment areas. Doctors and nurses might worry that you will get in their way or further agitate your child. If you are very emotional, these may be valid concerns. However, you usually can insist on staying with your child if you are calm. Use your judgment — if your child is unconscious or has suffered severe trauma — it may be best to wait outside.

Most injuries and illnesses are not severe, and your child will probably draw more comfort from having you present than anyone else. You can provide great reassurance by holding your child's hand, singing, or quietly explaining what's happening.

While the doctor manipulated the broken bone, I kept bodily contact with Aurora. I stroked what I could. At one point, I held her foot. It helped her be calm and feel connected. I stood at her foot when they were working by her head. I stayed where they weren't.

When you arrive in an emergency room, you must fill out paperwork, including medical history and insurance information. This can be time- consuming and, if your child is seriously ill or injured, hospital staff will want to begin treatment immediately. You can ask your spouse or a friend to handle the paperwork, or take it into the exam room.

Work with the staff

It's a good idea to establish rapport with emergency room staff right away. That means staying calm, providing accurate information, and gently but regularly making them aware of your presence. Prior to giving permission for medications, make sure you tell the doctor or nurse about any prescription or over-the-counter drugs that your child takes, for example, an asthma inhaler or an antihistamine.

Politely ask the doctors what they are doing and why. Try to understand the treatment plan for your child's illness or injury. If you are uneasy about the proposed treatment, ask for another opinion. In large teaching hospitals, the first doctor you see usually is a resident. Ask to see a chief resident or attending physician if you feel another opinion is necessary (the different types of doctors in teaching hospitals are explained in Chapter 5, The Staff).

One night, we took our 18-month-old daughter, who has diabetes, to the emergency room because of a sudden, severe ear infection. I had already checked her blood sugar and it was fine. But when they heard "diabetes," they immediately began to draw blood and put a urine bag on her. I said, "Stop for a moment and listen to me." After I explained, they just dealt with the infection.

If your child will be going home with you, ask for all instructions in writing — you may not remember later. You might also ask about:

• Possible complications related to medication

• Side effects, such as swelling or fevers, that might occur later and when you should call about such symptoms

• Special care for stitches, bandages, or casts

• Whether you should call your pediatrician or a specialist to arrange for follow-up care

Do not hesitate to call the pediatrician if something appears wrong with your child after you go home.

Be a role model

Your child looks to you for clues about how to act. If you are emotionally distraught or squeamish, your child will be more likely to get upset in the emergency room. Do your best to remain calm. If the sight of blood disturbs you, look away. If you feel faint, put your head between your knees or leave the room.

My daughter broke her right wrist, and it caused what they call significant deformation. It was really gross. But while the doctor worked on it, I tried to not register alarm or shock. I kept real impassive features so if she were trying to read my face, I would be more or less inscrutable. When it's my child and I don't want to scare her, I click into warrior mom.

Many parents can hold their emotions in check until their child is out of danger. But don't be surprised if you feel the need to cry when it's all over.

Staying in the hospital

Sometimes a child is too ill or injured to go home after an emergency room visit. Doctors then will recommend that your child be admitted to the hospital. Your child will be moved to another floor and placed in a room, sometimes alone, sometimes with other children. If you wish, you can ask if a private room is available. You might check with your insurance company to find out whether a private room will be covered if it's not considered to be medically necessary.

Again, try to remain with your child if she is admitted. Use the telephone in the room or your cell phone to notify your family, friends, and workplace. If you left the house without clothes, toys, games, or books for your child, ask a family member or friend to collect these items and bring them to the hospital. Also, have them bring a change of clothes and toothbrush for you.

When your child settles in, a nurse will probably come into the room, introduce herself, and take vital signs (blood pressure, heart rate, breathing rate). The nurse may ask you to repeat information that you already gave to the emergency room staff. This may seem repetitive, but you may have forgotten an important detail in the emergency room. It's important for you to provide complete information and answer questions.

The nurse should explain what will happen that night. For example, if your child has a concussion, the nurse may need to wake her up every hour. If the nurse doesn't explain the first night's plan, do not hesitate to ask.

My 7-year-old daughter had a lengthy, complicated seizure, and was admitted to the hospital through the emergency room. I assured her that I would stay with her and take care of her. I told her it might be stressful in the hospital, but we would make time for fun. I talked about how cool it would be to watch TV in bed all day. We found a computer to play with (a big treat) and had my husband bring in games and coloring books. The fun things really helped her cope.