Modern medical technology is constantly evolving and advancing. What we would consider today a relatively minor infection or disability sometimes led to death or a life of poor quality in the past. Treatments that are now routine, such as respiratory assistance or the closure of a spinal defect, can improve the outlook for children with conditions that were once hopeless. The list of treatable conditions continues to grow.
Recent medical advances are the result of increased knowledge and application of physiology, molecular biology, and anatomy; improvements in medications and intravenous fluids; and the development of sophisticated medical devices.
These devices can be as simple as a fluid pump or soft, flexible feeding tube, or as complex as a ventilator that mechanically assists breathing. Machines can monitor children with life-threatening conditions, sustain them with food and oxygen when they cannot eat or breathe on their own, and even perform some of the vital functions of the kidneys, heart, and lungs.
In some cases, children return home with some of this supportive technology. Families must then learn about and master the new technologies, making significant adaptations to their daily lives. The very machines that make a child's survival possible provide challenges and difficulties. Caring for a child dependent on technology is not always easy, but the role of the parents and siblings is crucial for the child's health and happiness.
Caring for the Hospitalized Child
For many parents, the introduction to medical technology comes at a time of family crisis: an accident, a severe illness, or the discovery of a birth defect. Your child may be admitted to a pediatric (PICU) or newborn (NICU) intensive care unit. If your child is in an intensive care unit, the professional staff is responsible for managing your child's medical condition and life-support machines. You may find the tubes, monitors, lights, and noises intimidating. It may be a challenge just to find a place to sit at your child's bedside. Although you may feel unimportant at such a time, you are vital to your child's welfare.
Here are some positive things you can do while your child is hospitalized:
- Visit as often as you can. Your child needs to see you, hear your voice, and feel your presence, even if the visits are brief. Ask for permission to bring siblings to visit during a quiet time.
- Observe how your child communicates and reacts, and pass this information along to the medical staff.
- Cooperate with the medical staff. Follow their instructions about washing hands or any other intensive care unit requirements.
- Ask questions. Learn as much as you can about your child's condition and progress.
- Observe how the staff takes care of your child.
- Study the machinery. Learn the purpose and use of every device.
- Talk with other families in similar situations. You can learn a great deal from each other.
- Take breaks to allow yourself to recharge.
Most children will not remain on life-support equipment for very long. They may need this intensive care for only a few days or a few months. Extensive testing will be done before the medical staff can determine whether your child will be permanently dependent upon technology.
The Decision to Come Home
If your child remains dependent on technology, after a time you may feel that you could provide better physical and emotional care at home - and you may be right. Today, hospitals recognize and support families, when appropriate, who want their children to return home along with their life-sustaining equipment. The Committee on Children with Disabilities of the American Academy of Pediatrics has concluded that home care for children dependent on technology "may offer the advantages of supporting the child's growth and development in a more nurturing family environment without compromising comprehensive health care delivered in a cost-effective manner."
There are many medical conditions with treatments that require technology. Some conditions require the use of technology for only a short time, while others require lifelong support on more than one device. Technology varies in complexity, and there may be many procedures for operating the technology.
Some machines are merely monitors attached to the skin, while others have tubes inserted in the body and may require special care. A premature infant at risk for sudden infant death syndrome (SIDS) may be discharged from the hospital with a device that monitors breathing during sleep. After a few months, the doctor may determine that the monitor is no longer necessary. Another child with brain damage may be permanently attached to multiple machines with tubes inserted into the child's body for respiration and nutrition.
Despite a family's best intentions, home care for the child dependent on technology is not always appropriate. For a medical condition that requires complex equipment, each home care situation must be carefully evaluated by a multidisciplinary team that should include parents, the primary doctor, physician specialists, nurses, therapists, nutritionists, social workers, home health aides, equipment suppliers, a case manager, and the insurer. This team evaluates many interrelated factors. If there are any weak links in the support network for the child, the child's life may be at risk.
Home Care for a Child Dependent on Technology
When a child dependent on technology is cared for at home, family members and caregivers must master many skills.
The most important factor in providing quality home care for a child dependent on technology is that the family caregivers and their backup team must be ready, willing, and well-informed about the necessary care. Families must become very good at planning ahead and organization. Whether ensuring an adequate supply of clean catheters or scheduling delivery of a special generator, planning is essential.
For a complex technology, such as a ventilator, your home must be prepared for the technology as well. For the child's sake, family members become master technicians. Caregivers will need a thorough understanding of machine function, troubleshooting, preventive maintenance, and backup procedures.
Here are the major considerations for quality home care:
- The child's room will need the proper equipment, sufficient electrical outlets, and a backup power supply from a battery or generator. Some insurance companies will reimburse for a generator.
- Water for bathing must be close at hand.
- You must have a telephone. Tell your phone company that your child is on life support. Keep a list of emergency numbers by the phone.
- Emergency medical assistance and transportation should be nearby. Inform your local ambulance company of your child's problems before you come home from the hospital. Arrangements for home nursing and respiratory services, public health nurse support, medical follow-up, and emotional support are also important, and should be made well in advance of your child's return home.
- Because your child may need round-the-clock attention, you may have nurses in your home from 8 to 24 hours a day so you can sleep, do household chores, and work. Your family will have to adjust to a considerable loss of privacy.
Training the Caregiver
Before your child can come home, each family caregiver must be thoroughly trained. Instruction for the families of children sent home on ventilators will be required. In addition to knowledge about the child's medical condition, detection of medical problems, and emergency procedures, caregivers must learn every aspect of the home equipment.
This training may include the suctioning and humidification systems, resuscitation bag, monitor, intercom, respiratory therapy equipment, and different types of supplies. Caregivers must demonstrate their knowledge and skill in every training area, including special CPR techniques and machinery maintenance. Other caregivers may need to be trained to provide backup support.
Supervision of In-home Help
Family caregivers must set clear expectations for nurses and aides who come into the home to assist with round-the-clock care. Issues will arise such as use of the home telephone, discipline of other children in the home, responsibilities for household management, and communication between nursing shifts about the patient's status. Many details must be addressed to avoid conflict and ensure a smoothly operating team.
Family members should be able to spot the slightest change in the child's behavior or appearance and should learn to communicate about these conditions with other caregivers. They should learn to administer medications, monitor the child's medication schedules, and assist with exercise and other activities.
One helpful technique to enhance communication is to prepare written notes on patient status and require each nursing shift do the same. Using this method, early signs of trouble can be recognized and timely medical help can be obtained. Also, a patient journal provides a way for nurses and family to communicate about various issues.
Families should work with educators to develop appropriate activities according to the child's abilities and needs. Children who progress to portable equipment should be able to attend school with some support. Most state early intervention programs provide a home-based educational and therapy program for infants and children.
Types of Medical Technology
If your child is dependent on technology, you may have to learn to use and monitor the following devices:
- Tracheostomy - A tracheostomy ("trach") permits the insertion of an artificial airway, essentially a tube, through an opening made in a child's neck. This tube allows the ventilator equipment to be easily attached. It is not usually inserted until a child has been on a ventilator for more than 14 to 30 days. The tube must be removed and changed regularly, a highly skilled procedure that every parent must learn in case of emergency. Many parents want to do it themselves, because they feel they do it with the least discomfort to their child. It is essential that a clear airway be maintained at all times.
- Ventilator - The ventilator, which attaches to the tracheostomy, performs mechanical breathing for the child. Valves on the ventilator are set to combine air and oxygen (if needed) from a separate tank into a precise mix at a pressure level and rate that is adjusted for each patient.
- Manual resuscitation bag - Used as a backup, this is a breathing device that can be worked manually (like a small bellows). It should be on hand in case of ventilator failure.
- Suction machine - If a child cannot cough to clear his own airway, a suction machine is needed to clear the tracheostomy tube. Suctioning is done by inserting a tiny tube, about 1/8 inch in diameter, into the trach opening. Both a bedside machine and a portable machine may be on hand. The tubes, of course, must be kept clean, although they do not normally need to be sterilized. The frequency of suctioning depends on the child's condition, status, and environmental factors such as humidity level. Suctioning may be done as often as every 30 minutes for a child who has a lot of secretions in the throat or trach tube, or as infrequently as every 8 hours. Caregivers should learn to observe the child carefully to see how frequently suctioning is needed.
- Respiratory therapy equipment - Some children on ventilator therapy may also require respiratory therapy with medications that are mixed in a compressor attached to the ventilator and "misted" into the trach. This equipment must be cleaned and maintained, and precise dosage and medication schedules must be followed.
- Monitoring system - A small monitoring device to measure a child's heart rate and the amount of oxygen in the blood may be attached to a finger or toe. No bigger than a plastic bandage, this pulse oximeter (a device that measures the oxygen in the blood) has a tiny wire leading to a monitor that shows the readings on an LED panel and sounds an alarm when the readings are abnormal. The device may be able to store the readings in a computer as well. Caregivers need to know what the normal readings should be for their child. They may need to recognize a false alarm, such as when the device is not properly attached.
- Feeding equipment - Some children lack the upper-body strength to hold themselves upright for eating and may require special equipment that supports their bodies. Children who cannot take food orally may require feeding tubes inserted into their bodies. A gastrostomy tube goes directly into the stomach; a nasogastric tube is inserted through the nose and down the throat into the stomach. Another option is a central line, which goes directly into the bloodstream through a large vessel in the chest, neck, or groin. Internal feeding requires special care, particularly with a central line, which must be kept very clean because of the risk of infection entering the bloodstream.
- Colostomy bag - A colostomy is an operation in which the colon is rerouted to empty through an artificial opening, bypassing the anus. Since this is not the normal route for elimination of wastes, wastes are eliminated directly into a pouch worn over a surgical opening on the abdomen. This bag must be changed frequently.
- Wheelchairs and other devices - Several devices may be required for mobility, including specially adapted wheelchairs that include space for carrying a breathing apparatus, ramps, or lifts. A van may be needed for transportation.
- Communication devices - As a child matures, communication becomes increasingly important. Special equipment may be needed to allow the child to vocalize, especially if the child has a trach. A speaking valve may be attached to the trach. If natural speech is not functional for communication, computerized devices and speech output devices are available. Sign language can be taught at an early age, and many children also become comfortable with a picture communication board.
Support for Parents
If you feel overwhelmed by medical care responsibilities and isolated from other people because of the demands of home care, your case manager or hospital social worker can help you locate appropriate help. Help may include support groups or other community resources.
Many caretakers find it difficult to leave the home to attend meetings, and they find the most support from other family members, neighbors, friends, and relatives. They may rely on this network for many small things, such as grocery shopping, errands, household help, and companionship. Your region may provide nursing care for your child to allow you some personal time.
All successful home care arrangements are dependent on the family's ability to be adaptable, resourceful, and resilient. Professionals observe that often it is not the type or severity of the child's condition that is the determining factor in a successful home care situation. Many times success has more to do with the family's spirit, faith, and ability to work together as a supportive team.
Updated and reviewed by: Kim Rutherford, MD
Date reviewed: June 2001
Originally reviewed by: Steven Dowshen, MD, and Laura Inselman, MD
Source: KidsHealth www.KidsHealth.com is a project of The Nemours Foundation which is dedicated to improving the health and spirit of children. Today, as part of its continuing mission, the Foundation supports the operation of a number of renowned children's health facilities throughout the nation, including the Alfred I. duPont Hospital for Children in Wilmington, Delaware, and the Nemours Children's Clinics throughout Florida. Visit The Nemours Foundation to find out more about them and its health facilities for children http://www.nemours.org/no/