Intensive Health Care at Home

Kids may need intensive health care at home for many different reasons. Medical equipment and devices can:

• monitor the health condition
• provide nutrition
• give oxygen
• help with breathing
• give certain medicines

Parents, caregivers, and other family members will learn about the medical devices and equipment that the kids they love depend on.

During the move from the hospital to home health care, families will have a support network to lean on, including a team of medical professionals — such as doctors, nurses, therapists, home health aides, and equipment suppliers.

At many hospitals, a staff social worker or care coordinator will help coordinate home care. They also will help arrange home nursing and respiratory services, medical follow-up, and emotional support.

Getting comfortable with your child's home health care begins at the hospital. Learn from the medical staff by watching how they take care of your child and how they operate the equipment. The team will teach you what you need to know to care for your child at home.

Ask questions about anything you don't understand. Start practicing in the hospital so you are comfortable by the time you go home. Consider talking with families whose children need similar medical equipment or levels of care.

Planning Ahead

Family caregivers should be prepared to give the care their child needs. Caregivers will learn how each machine works, how to troubleshoot, how to do preventive maintenance and any backup procedures, and where to call with any problems.

Here are some things 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, wheelchair, or equipment.
• Your child's room may need special 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.
• Keep a list of emergency numbers by the phone. Consider keeping a phone in the child’s bedroom so that someone can call for help without leaving the bedside.
• Have medical information ready in case of emergency, including medical problems, medicines, allergies, and special instructions.
• Let your utility companies know that you have a child requiring medical equipment at home so that you are a priority in case of an outage.
• Make a plan for all types of emergencies, such as fires and natural disasters, that would mean getting your 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 when to call the health care provider

The specific skills needed will depend on your child's condition. The nurses, doctors, therapists, and home caregivers will teach you what you need to know.

Home Health Care Assistance

The hospital care coordinator can help families arrange for nurses or aides to come into the home to help with care, if needed.

Home caregivers should understand your child’s medical condition and regularly communicate with your child’s doctor. They should know how to:

• give medicines
• monitor equipment 
• care for surgical incisions, wounds, or injuries
• help with exercise and other therapies
• recognize problems, and know how to handle emergencies and when to call for help

Keeping Notes

Home care providers will keep progress notes. You may also want to keep track of your child's status. Consider keeping a journal near your child's bed so that caregivers can communicate about issues or concerns.

Types of Medical Equipment

Different medical conditions will require a variety of home medical equipment. Here are some of the most commonly used:

Breathing

• Oxygen. Some kids breathe fine on their own, but need some extra oxygen, either all the time or intermittently. These children may get oxygen from a face mask or prongs in the nose. Oxygen should be kept away from smoking, open flames, heat sources, and flammable products, such as rubbing alcohol, petroleum jelly, and spray cans.
• 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. Breathing equipment may be attached to the tube. A tracheostomy is often done when a child can’t breathe because the airway is blocked or a child needs a breathing machine (ventilator) for a long period of time. The term "trach" can refer to the procedure, the opening, or the tube itself. All caregivers will have to learn to care for, change, and clean the tracheostomy tube.
• Ventilator. The ventilator, or breathing machine, attaches to the tracheostomy tube and provides breathing support for the child. The doctor will decide the settings for the ventilator. Settings include breathing rate, size of breath, and amount of oxygen. All caregivers need to know the settings. The home care team will adjust the settings when ordered by the doctor.
• Resuscitation bag. This is used as a backup for a ventilator or in an emergency. It lets a caregiver give breaths to the patient by squeezing a bag attached to the tracheostomy tube. It should be on hand in case the ventilator fails, as well as for times during routine care that the ventilator is disconnected (such as suctioning).
• 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.
• Pulse oximeter. This small monitoring device measures heart rate and the amount of oxygen in the blood. It's often worn on a finger or toe. A wire leading to a monitor shows the readings and sounds an alarm if the oxygen level is low. All caregivers need to know what the child's normal readings are and how to recognize a false alarm, which may happen if the device isn't properly attached or the child is moving the finger or toe.

Feeding

Sometimes kids cannot swallow food or need extra nutrition. They may get enteral feeds (also called tube feeding), where food is given through a tube directly into the stomach or intestines. When nutrition is given through a vein directly into the bloodstream it is called parenteral feeds.

• 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. Some medications can be given through an NG tube.
• Feeding tube. A tube can be placed through the skin directly into the stomach or intestines. A feeding pump can control the rate and amount of formula given. Some medications also can be given through these tubes. Two commonly used tubes are:
  • gastrostomy tube (G-tube) that goes directly into the stomach
  • jejunostomy tube that goes directly into the small intestine
• Parenteral feeds. When the digestive system isn't working properly, a child can get nutrition directly into their bloodstream. Doctors place a special intravenous (IV) line, usually in the chest or arm. A special mixture of liquid nutrients is given through an IV pump that controls the rate and amount given. The line and the surrounding area must be kept clean to prevent infection.

Toileting

• Diapers. Older kids sometimes have conditions that make it difficult to control when they urinate (pee) or stool (poop). These kids may need to wear diapers made especially for bigger children. It is important for parents and caregivers to change the diapers often so that a child is not wearing a soiled diaper for a long time. That can be uncomfortable and can cause rashes, sores, and skin infections.
• Catheter. Children who need help peeing might need a catheter, a special tube that goes through the urethra into the bladder. 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.
• Colostomy bag. A colostomy is an operation in which one end of the large intestine is brought out through an opening in the abdomen. After a colostomy, poop goes directly into a colostomy bag worn over the opening. This bag must be changed often.

Support for Parents

The responsibilities of home health care can feel overwhelming at times, and can make some parents feel isolated.

Whether you need emotional support or help managing household duties, don't hesitate to ask your child's doctor or the hospital team about resources in your community. It's important to find help and support, whether it's from the medical professionals involved in your child's care, or friends, family, or other parents in similar situations. Try to make some time for yourself — even if it's just an hour for coffee with a friend or going for a walk. When you take care of yourself, you’ll be better able to take care of your family.