By Janice Williams and Susie Mantilla-Lage
Almost all children who have been hospitalized with a serious disease would like to spend the holidays at home.
Being able to celebrate the seasonal festivities with parents, siblings, aunts, uncles and grandparents can be a dramatic morale booster for the ailing child and everyone else in the family. It’s also far more convenient for the parents, who can plan their activities without daily hospital visits.
But parents should consider a number of factors in weighing whether to bring a young hospital patient home. After all, no one wants to jeopardize the child’s recovery.
Since every child – and every family- is different, the first thing parents should do is sit down with the child’s physician and a hospital staffer to learn whether the appropriate ongoing care can be provided at home.
For instance, a nurse may be able to give intravenous (IV) medications to a child with leukemia either at home or in the hospital setting. However, a child suffering from brain trauma may need round-the-clock monitoring in a hospital’s intensive care unit.
Once it has been determined that a child can come home for the holidays, the next step is to draw up a plan of care that outlines the child’s needs and the responsibilities of family members and home care professionals. Often children need skilled nursing as well as occupational and physical therapy. These services can all be provided in the home. A hospital social worker or discharge planner can assist to be sure nothing important falls through the cracks.
One of the important decisions for families is who will provide daily medications, wound care or other medically related services for the child. Some parents can handle these tasks with some training, while others prefer to have a professional take on such responsibilities.
Recently, we provided home care to a 12-month-old child who was failing to thrive. It took our nurse several weeks to teach the mother to feel confident she could use a tube to feed her daughter. On the other hand, we assisted a 14-year-old boy with cystic fibrosis who had developed an infection and needed IV antibiotics. Both the parents were more than willing to learn the processes needed to help their child. However, the grandparents needed reassurance that their loved one would be all right.
Once the child is home, parents and other family members should think about that child’s needs when making holiday plans. For instance, a large crowd may make the child uncomfortable and increase the youngster’s risk of catching a cold, sore throat or the flu. Generally, it’s not a good idea to have 50 people over for Thanksgiving or to host a New Year’s party for 100 of your closest friends in such cases. Save those big celebrations for another year, when the child is healthy again.
Gift-giving plans may also need to change to accommodate an ill child. A boy or girl who will be in bed throughout the holidays will be more likely to appreciate a TV to watch movies, a new board game or art supplies, rather than a bicycle, scooter or soccer ball. Those types of active gifts should be put on hold until the child can enjoy them.
Holiday menus may be another concern. Some children may be content with smaller portions than usual. Others may find themselves wanting different types of foods – a milkshake or hamburger probably would taste good after a month of hospital meals. Parents should also talk with their pediatrician or a nurse about timing – when foods or drinks should be consumed in relation to a child’s medications.
It’s essential for parents to remain focused on ensuring the health of the child, despite the many holiday distractions. For example, parents and siblings should wash their hands frequently to reduce the risk of passing along germs. They may also need to turn down the volume of an iPod or home theater system so the child can take naps or sleep through the night.
Finally, parents should be sure they have complete contact information for their pediatrician and home care agency in case a problem arises during the holidays. That provides peace of mind for parents and continuity of care for the child.
Janice Williams is an experienced heath care manager and an advocate for the aged. Susie Mantilla-Lage, RN-BSN, serves as director of nursing for Matrix Home Care in Palm Beach County and the Treasure Coast region. Matrix provides a complete array of health care services, serving Southwest, Southeast and Central Florida. For more information, www.matrixhomecare.com.
