Planning for Your Child's Surgery: What Parents Need to Know Before, During, and After Their Child is in the Hospital
Some surgeries are planned and allow the family time to get all of their questions answered ahead of time. Other times an emergency requires immediate surgery. This fact sheet is designed to offer suggestions to help parents prepare for both kinds of surgery. The goal is to make the child’s experience with hospitalization, surgery and recovery as smooth as possible. This can benefit not only the child who has OI, but the entire family as well.
Before Surgery: Planning
Use child-friendly and simple language to explain hospital procedures and the operation to your child. Many hospitals now have child life specialists on staff. They are available to help answer the child’s questions and often have special dolls and other toys to demonstrate medical procedures in a comfortable manner. Siblings often benefit from appropriate explanations as well. Information can help decrease anxiety. Many parents believe it is best not to lie to their child, but also caution against telling the child more than he/she can handle. Older children, in particular, may benefit from the opportunity to talk about an upcoming surgery with someone who has already had the same experience.
A pre-admission tour of the hospital can help both you and your child feel more at ease. This can be a good time to get questions answered about hospital rules for parents and visitors, and to learn which comfort items to bring from home.
Explaining OI to hospital staff members as well as other patients and their parents is an important part of being your child’s advocate. The OI Foundation’s resources including the fact sheet Surgical Considerations and the Fragile: Handle Me with Care poster are available. Some parents laminate extra copies of the poster or a similar warning sign and tape it to their child’s hospital gown when they leave the room. If possible, distribute information about OI during the pre-admission tour, so the staff is prepared before your child’s admission.
Other items to discuss with your child’s doctor and with the hospital staff before the surgery include the following:
Packing. When you pack a bag for your child to take to the hospital, it’s a good idea to pack one for yourself. Bring comfortable clothes to wear overnight, slippers, shower items, a toothbrush, hairbrush, and a box of soft tissues.
After Surgery: Coping
Stay calm. Your child needs your calm and reassuring presence. Hold hands, sing softly, or, if your child can be out of bed, sit in a rocking chair. Deep breathing together can help your child relax tense muscles. Be positive and reassuring about how your child’s incision looks. The swelling will go down, and the discoloration will fade.
Provide comfort measures. It can be a challenge to keep a child who is uncomfortable or in pain calm and entertained. A familiar blanket, pillow or pillowcase, stuffed animal or other small toy can help your child feel more at ease. Choose toys that are easy to play with in bed. Videos are a popular diversion. Bring in old favorites as well as some new, never before seen titles. Books for reading out loud to your child, puzzles and simple games, drawing pictures together, and even blowing bubbles also are entertaining. Many children enjoy listening to music through headphones.
As your child begins to feel better, family visits can be very comforting and entertaining. Knowing that a sibling or grandparent will arrive at a certain time gives your child something to look forward to.
Be alert for behavioral changes. Every child develops his or her own way of dealing with pain or stress. It is normal to be afraid when something hurts. Common reactions to pain include anger, whining, uncooperativeness, regression to babyish behavior previously outgrown, being “too brave” and hiding pain or worry, or becoming sassy and rude. Indicators of pain can be behavioral and/or physiological.
Behavioral indicators of pain include:
Physiological indicators of pain include:
Pain Management is a major area of concern. It is very difficult for parents to see their child in pain. You should expect that your child will be in severe pain during the first 24 hours and decreasing pain for at least several days after that. You can explain to your child that the pain will decrease and that medicine is available to help control the pain but doesn’t always work quickly enough. Be emotionally prepared to distract your child while waiting for the medication to take effect.
Children show their pain in a number of ways both verbally and non-verbally. Pain intensity scales are used in hospitals to rate pain from “no pain” to “the worst possible pain.” When discussing the use of pain medications, be sure to ask about possible side effects including suppression of respiration, disoriented mental state, or constipation. Some parents advise keeping a list of all medications that the child receives while in the hospital. This kind of log will help you keep track of when a dose was given and when the next dose is due.
You can inform the nurse if your child’s pain level has changed. You can ask for a cold or heat pack. You also can help with pain management by informing the hospital staff about how your child has reacted to pain in the past and what worked to relieve it.
Medication can be given to children in a number of different ways. Liquids, pills or intravenous medications are the most common methods of pain control. Medication is often given intravenously at first and later changed to medicine given by mouth.
Treating Different Types of Pain
Side Effects: All pain medications can have some side effects, but not every child will experience them. The most common side effects of pain control medication include nausea and vomiting, constipation, itching, sleepiness, and slowed breathing. These can be treated, and any questions should be discussed with your child’s doctor or nurse.
Pain Medication Prior to Discharge: Discuss the timing of the discharge and travel plan with your child’s nurse and pain specialist. Arrange to time the discharge soon after a dose of pain medication to minimize discomfort on the trip home, which often involves more movement and positions than the child has experienced in the hospital. If you have a long trip, fill any prescriptions ahead of time so you have all medication on hand when needed.
Additional Post-Operative Suggestions
Going Home: Being released from the hospital usually involves meeting with a discharge planner from the hospital, your child’s surgeon and often a nurse practitioner. This is the time to review all instructions regarding home care, transportation, medications, physical therapy and follow-up appointments. At the end of this fact sheet a one-page outline is included as a tool to help parents make sure that all of their questions are answered. Even if your child has had many surgeries, do not assume that all of the instructions will be exactly the same. It is important to have a phone number for someone at the doctor’s office who will answer questions as they arise once your child is home.
Before your child is sent home, be sure you are comfortable with all areas of home nursing your child will need. Sometimes this involves learning a new skill or becoming emotionally prepared to deal with unfamiliar tasks that cause your child discomfort. Know how to reach the doctor day or night, what to watch for, and what to do if you have questions or if there is a worrisome change in your child’s condition, dressings or cast before the scheduled post-operative checkup.
Pain management usually continues at home. Parents need to be absolutely certain about dose and schedule and what to do if a dose is missed or delayed. Keep a written schedule that lists the name of each medicine, what it is for and how often it can be given as well as the dosage. List the times your child actually takes each medicine. This is useful when you have “shift changes” at home between parents and caregivers and provides a useful record of the pain level over time.
Children in a cast, especially those in a spica cast, often have difficulty sleeping. Depending on age, and size, your child may be more comfortable sleeping propped up in a recliner or bean bag chair than in bed.
Managing dressings placed over a wound requires some special instruction. Parents can practice changing the dressing, with nurse supervision, before their child is discharged from the hospital. It is particularly important to learn how to remove any adhesive without damaging already fragile skin. Before discharge, assemble ample supplies at home
Cast Care Do’s
Cast Care Don’ts
Cast Complication Warning Signs
Preventing Complications of Immobility
Managing Activities of Daily Life
Toileting issues and the Spica Cast:
Bathing and hair washing: Some of the new waterless products available through many drug stores offer an alternative for washing hair and bathing. If you have difficulty locating these products, ask the druggist to order them. A sponge bath often will be necessary when your child can’t be moved. Covering the cast with plastic wrap or a plastic bag will protect it near water, especially once you can give your child a shower or bath. Placing your child on the kitchen counter, or in a chair with phone books and pillows, and using the sink can make hair washing possible if this is done safely. Some beauty parlors or barbershops may be willing to place your child on pillows to reach the sink level for hair washing.
Eating: A healthy diet will promote healing. Immediately after surgery, many children lose their appetite due to pain and the effects of anesthesia. If the child will be significantly immobilized for a long period of time, consult with your doctor and/or a dietician for advice about nutrition. Weight gain after surgery can reduce mobility and put added stress on already fragile bones.
Dressing: After surgery or a serious fracture, children often have to re-learn previously mastered skills for dressing, undressing, toileting and walking. Provide encouragement and the opportunity to regain these skills. Additional adaptive equipment may be necessary for a short while. Clothing may need to be altered to accommodate the cast. Opening seams and using Velcro-type fasteners, athletic pants that zip up the sides, going to a larger size and using extra large socks (to protect swollen feet and ankles) may be helpful.
Schedules: Every household has its own rhythm of daily and weekly activities. As soon as possible, return to a normal schedule. Allow visits from your child’s friends as early as recuperation allows. It can provide a real lift to everyone’s spirits. As your child heals, return to your usual expectations for age-appropriate behavior. Encourage your child to return to school and resume time with playmates and friends as soon as possible. Plan for your own return to work and other activities too.
School: It is important to keep in close contact with your child’s school. Be sure to know the procedures for getting schoolwork, arranging for home instruction and, if necessary, hiring a part time aide for the return to school. If your child will be receiving home instruction, talk with the teacher about how to keep the child connected to classmates. Ideas from students and parents include conference calls, contributing to a class project or sending e-mails to the class. Many schools have web sites or telephone systems where teachers post assignments and other useful information.
Spica Cast Concerns: When a spica cast is necessary, parents will need to take special precautions when lifting and moving their child both to protect their own backs and to protect the child from additional injury. Many parents recommend using bean bag chairs to help comfortably position the child. Because of the nature of a spica cast, keeping it clean, dry and odor free is especially difficult. See information in the section on “toileting.”
Physical Therapy: PT is part of the recovery process for children with all types of OI. Often it begins with activities at home. Maintaining strength in the limbs that are not in a cast and regaining strength after the cast is removed are important goals.
Other Family Issues
Siblings also feel the stress of having a brother or sister in the hospital or at home recuperating. It is not uncommon for siblings to experience many strong, even conflicting feelings, such as anger, jealousy, anxiety, deep concern for the hospitalized brother or sister, and resentment about being ignored. Having a relative such as a grandparent, aunt, uncle, or other adult friend provide some attention, listen to concerns, and help keep the siblings’ routine somewhat on schedule can help them cope in a healthy manner.
Parents are encouraged to keep siblings informed of progress directly. Let them know that they are important players in the entire process. Call them from the hospital regularly, be honest and positive, and provide age-appropriate information about what their brother or sister is experiencing.
Keeping a healthy perspective can help the healing process. Recovery from a surgery can be hard work and can take a long time. It is easy to get bogged down in the work and seriousness of the experience. Many parents who are experienced with the surgeries that are part of managing osteogenesis imperfecta suggest looking for opportunities to share a special moment with your child. Seek ways to have fun together. Keep laughter on the agenda as part of post-operative care.
For additional information about surgery see the OI Foundation fact sheet, Surgical Concerns,and the book Growing Up with OI: A Guide for Families and Caregivers, Chapter 5.
The National Institutes of Health
Revised May 2006
Preparing to go Home from the Hospital: A Tool for Parents
Signs of Complications to Immediately Report to Surgeon:
Care of Cast or Splint:
Care of Sutures or External Pins:
Weight Bearing and Physical Activity Guidelines:
Physical or Occupational Therapy Appointment:
Return to School:
Emergency Contact Phone Numbers
Next Appointment with the Surgeon: