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Managing Home Health Care_KH_Parent

Managing Home Health Care

Intensive Health Care at Home

Kids need intensive health care at home after they have been in the hospital for many different reasons. Medical equipment and devices can:

  • function as a monitor
  • provide foods and oxygen when kids can't eat or breathe on their own
  • perform some of the vital functions of the kidneys, heart, and lungs

In each case, it's vital that parents, siblings, and other family members learn about the medical devices and equipment that the kids they love depend on.

During the transition from the hospital to home health care families will have a support network to lean on, including a team of medical professionals — doctors, nurses, therapists, home health aides, and equipment suppliers. At many hospitals, a staff social worker can help coordinate this team. The social worker also may be able to help arrange home nursing and respiratory services, public health nurse support, medical follow-up, and emotional support.

The process of getting comfortable with your child's home health care begins at the hospital. Learn from the medical staff by closely observing how they take care of your child, and how they operate and maintain the necessary equipment. Be sure to ask questions about anything you don't understand. Consider talking with families whose children require similar medical equipment or levels of care.

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Planning Ahead

Family caregivers should be prepared for and well-informed about the care a child requires. Caregivers will need to know how each machine works, how to troubleshoot, and how to perform preventive maintenance and any backup procedures.

Here are some factors to consider as you prepare for home health care:

  • You may need to make changes to your home to make it accessible for a walker or wheelchair.
  • 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 may provide reimbursement.)
  • It can be helpful if a bathroom or source of water is near the child's room for bathing.
  • 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 medical condition before any situation comes up where you need one.
  • Devise a plan on how you'll handle all types of emergencies, such as natural disasters, to handle getting the child and any life-sustaining equipment out of harm's way.

Training Your Family

Family members should learn how to use and maintain all medical equipment. They also should:

  • understand the child's medical condition
  • know how to detect problems
  • know what to do in emergencies
  • learn CPR
  • know what to do if other emergencies arise — such as handling dislodged equipment
  • understand which situations are emergencies that require medical care

The specific skills needed will depend on your child's condition. The nurses and doctors can help you understand what you may need to know, and may even have training dolls to help you practice different procedures.

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Home Health Care Assistance

The hospital social worker can help families arrange for nurses and aides to come into the home to assist with care, if necessary. They also can help determine any special qualifications home-care workers might need to have.

In general, home caregivers should understand how to:

  • spot the slightest change in the child's behavior or appearance and communicate those changes to other caregivers
  • administer medications
  • monitor medication schedules
  • assist with exercise and other therapies

Keeping Notes

You may want to prepare notes on your child's status and require each nursing shift to do the same. That way, early signs of trouble can be recognized and medical help summoned quickly. Consider keeping a patient journal near your child's bed so that nurses and family members can communicate about various issues.

Types of Medical Equipment

Multitudes of medical equipment can be required for different medical conditions, but there is some commonly used equipment for when kids need assistance to breathe, eat, and perform vital bodily functions, like voiding (urinating and defecating). Everyone involved in caregiving should know how to use and maintain the equipment and what to do if something goes wrong.

Breathing

  • Tracheostomy. A tracheostomy, often referred to as just a "trach" (say: "trake"), is a procedure in which a tube is inserted directly into the airway through an opening made in the neck, often done when a child cannot be weaned off of a ventilator. Breathing equipment may be attached to the tube. The term "trach" can refer to both the procedure and the piece of equipment itself. All caregivers will have to remove, change, and clean the tube on a regular basis.
  • 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) to meet the child’s needs. All caregivers must learn how and when to adjust the settings on the machine.
  • Manual resuscitation bag. This breathing device is used as a backup for a ventilator or in an emergency. It allows a caregiver to provide breaths for the patient by squeezing a bag. It should be on hand in case the ventilator fails.
  • Suction machine. If a child can't cough to clear the airway, a suction machine may be needed. Suctioning is done via a tiny tube inserted into the airway (or trach opening). A variety of factors, such as the child's condition and the humidity level in the home, will determine how often suctioning needs to be done. Anyone providing care should learn how to use the suctioning machine. Both a bedside and a portable machine may be needed.
  • Pulse oximeter. This small monitoring device measures heart rate and the amount of oxygen in the blood. It can be attached to a finger or toe. A wire leading to a monitor shows the readings and sounds an alarm if they're abnormal. All caregivers need to know what the child's normal readings are and how to recognize a false alarm, which may occur if the device isn'’t properly attached or the child is moving the finger or toe.

Feeding

Sometimes kids cannot swallow food or need nutrition assistance. To get this nutrition into the body, some systems use the child's gastrointestinal (GI) tract (these are called enteral feeds) and some go directly into the bloodstream (these are called parenteral feeds).

The health care team will provide specific information about how to handle different situations involving the equipment, such as displacement or clogging of tubes.

  • Nasogastric tube (NG tube). An NG tube is inserted through the nose and down the throat into the stomach. It is used to provide formula when children need help getting nourishment for a short period of time, such as a few weeks. Some medications also can be given through an NG tube.
  • Feeding tube. When longer-term support is needed, a tube can be placed through the skin into the GI tract. A feeding pump sends formula into the tubes and controls the rate and amount given. Some medications also can be given through these tubes. Two commonly used tubes are:
    • gastrostomy tube (G-tube) goes directly into the stomach
    • jejunostomy tube goes directly into the small intestine
  • Parenteral feeds. When the GI tract isn't working properly, nutrition can be given directly into the bloodstream. This can be done using a central line, which is inserted through a large vessel in the chest, neck, or groin. The central line, and the area surrounding where it enters the body, must be kept very clean to prevent infection. Formula cannot be given directly through a central line; a special mixture of nutrients must be given, based on the child's needs. Parenteral feeds require an intravenous (IV) pump to control the rate and amount of nutrition given.
  • Nasogastric tube (NG tube). An NG tube is inserted through the nose and down the throat into the stomach. It is used to provide formula when children need help getting nourishment for a short period of time, such as a few weeks. Some medications also can be given through an NG tube.
  • Feeding tube. When longer-term support is needed, a tube can be placed through the skin into the GI tract. A feeding pump sends formula into the tubes and controls the rate and amount given. Some medications also can be given through these tubes. Two commonly used tubes are:
    • gastrostomy tube (G-tube) goes directly into the stomach
    • jejunostomy tube goes directly into the small intestine
  • Parenteral feeds. When the GI tract isn't working properly, nutrition can be given directly into the bloodstream. This can be done using a central line, which is inserted through a large vessel in the chest, neck, or groin. The central line, and the area surrounding where it enters the body, must be kept very clean to prevent infection. Formula cannot be given directly through a central line; a special mixture of nutrients must be given, based on the child's needs. Parenteral feeds require an intravenous (IV) pump to control the rate and amount of nutrition given.

Voiding

  • Diapers. Older kids with conditions that make them unable to control their excretions may urinate and defecate uncontrollably These kids may need to wear diapers made especially for bigger children. It is important for parents or caregivers to change the diapers frequently so that a child is not wearing a soiled diaper for an extended period of time. That can be uncomfortable and lead to skin infections.
  • Catheter. Children who need help urinating may have a tube that goes through their urethra into the bladder, called a catheter. This tube may stay in and continuously drain into a bag or may be inserted several times a day to empty the bladder. Sometimes, through surgery, a special pathway is made through the skin into the bladder for easier catheterization. Whenever a catheter is placed, it must be done according to the doctor's instructions so that bacteria do not get into the bladder and cause an infection.
  • Colostomy bag. A colostomy is an operation in which the colon is rerouted to empty through an artificial opening, bypassing the anus. Instead, wastes are eliminated directly into a pouch worn over a surgical opening on the abdomen. This bag must be changed frequently.

Support for Parents

It's important to be able to reach out for help and support, whether it's from the medical professionals involved in your child's care, or friends, family, or peers in similar situations.

The medical care responsibilities of home health care can feel overwhelming. And the demands of home care can easily make parents feel isolated.

Whether you need emotional support or help managing the household duties, don't hesitate to consult your doctor or hospital about resources in your community.

Reviewed by: Larissa Hirsch, MD
Date reviewed: May 2007


Related Sites

Family Voices
Family Village
National Dissemination Center for Children with Disabilities (NICHCY)
DisabilityResources.org
WheelchairNet
Office of Special Education and Rehabilitative Services, U.S. Department of Education
KidNeeds.com
Emergency Information Form for Children with Special Needs

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