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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.
Planning Ahead
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 [see In Case of An Emergency form].
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.
Education
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. |
