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Nurses must be flexible to deal with young patients, families
Caring for young ventilator-dependent patients can be a taxing endeavor, both for home health nurses and the caregivers with whom they work so closely.
Tailoring an inservice to help nurses meet the technical and personal aspects of such care is important, says Anissa Falmier, RN, BSN, director of pediatric services for Preferred Health Care in Marion IL. Often, she says, the nurses she works with have the necessary technical experience, but they have worked only with ventilators in a hospital setting and need to understand the special requirements of home care.
"It’s not like a hospital, where the nursing and medical staff control how the day goes, the schedule, and routine, when the meds come, when the meals come," Falmier says. "When you get in the home, you can’t plan some of that. We try to work around what the patient wants for their day so they control their care."
Even the equipment is different, smaller and more portable, without the steady stream of paper printouts. That portability has helped enable patients with decreased lung capacity — babies whose airways are not yet stable, quadriplegics, patients with cerebral palsy — to live at home.
"Usually, in order for a patient to end up in home care with a trach, we see that it’s because of muscle weakness in the lungs. We have no two patients with the same diagnosis.
"The alternative to home for most ventilator-dependent patients is the hospital," Falmier says. "The fact that they can’t breathe doesn’t mean they don’t want to be home and doing what they would normally do. Being at home, [patients] can still be with their families for holidays and having a normal life." For children, that normal life can even include school, as long as a nurse is available throughout the day to monitor breathing and deal with any problems that arise.
Falmier starts her inservices by introducing students to all the necessary equipment:
• Tracheostomy tube: This is the artificial airway inserted into a stoma, or opening in the patient’s trachea. Falmier shows different types of trach tubes, including cuffed versions, which have an inflatable ball attached, and uncuffed tubes.
"With some patients, their stoma gets widened and air will pass around the trach instead of through the trach apparatus," she says. "With the vent-dependent patient, a cuffed trach helps maintain the patient’s [air] pressure."
Some patients can’t tolerate the pressure of the cuff and use an uncuffed version instead. Most tubes are plastic, although metal trachs are available for those with sensitivities to plastic. The trach is inserted for the first time in the hospital before a patient goes home, but nurses are required to change trachs anywhere from monthly to weekly, depending upon the age of the stoma and the patient’s health status, Falmier says.
"It’s a two-man process — one person pulls out the old trach and one person inserts the new one," she says.
Changing trach tubes is another aspect of care that many nurses in a hospital setting haven’t performed in a long time, if ever, because of the division of duties there, Falmier says.
Throughout the trach change, the patient wears a pulse oximeter, which measures the blood’s oxygen saturation. One hundred percent oxygen is given beforehand and afterward, as needed.
Falmier says every patient responds differently, based on his or her own capabilities and any internal scar tissue that may interfere with insertion. To help prepare students, she provides a child-sized doll with a tracheostomy they can practice on.
• Ventilators: Falmier next shows the ventilator, noting the differences from the apparatus hospital nurses are used to dealing with. She goes over the gauges, buttons, and settings, showing how the machine monitors every aspect of a patient’s breathing cycle:
— low pressure, which sets the minimally allowable pressure for each breath. If two consecutive breaths don’t meet the limit, an alarm sounds and a light flashes;
— high pressure, which sets the maximum pressure for an inspired breath;
— volume, or the amount of air to be delivered in each breath;
— breath rate, or the number of breaths to be delivered in one minute;
— inspiratory time, or how long the vent should take to deliver a breath;
— breathing effort, which adjusts the vent’s sensitivity to the patient’s efforts to breathe;
— Positive End Expiratory Pressure (PEEP), or the pressure maintained in the tubing and therefore in the lungs after expiration.
• Settings: In her inservice, Falmier goes over all the settings specific to a patient and explains why the ventilator is set the way it is. Settings for a patient’s pressure depend on how much lung muscle capacity the patient has, she says. Settings are adjusted in the hospital based on blood gas tests so before the patient is discharged, the physician has chosen the appropriate settings. The goal is to let patients do as much as they can to breathe on their own.
"Two patients who are the exact same size may not have the same settings," she says. "It’s because of their diagnosis and their own effort — whatever the patients are able to do themselves."
• Circuit: Falmier goes over the entire circuit of tubing that attaches to the machine and the trach. She again uses the doll, setting up the circuit and explaining all its parts. "And then we go through and turn it on."
Once the nurses have had a chance to see the entire system, she demonstrates the many alarms that can sound, what they mean, and what to do. (See box, p. 83.) "We go through what each alarm sounds like, how the vent flashes, and then we troubleshoot — if your low alarm is going off, what do you need to look for? I can tell what they understand by what they tell me."
Those alarms can go off 15 times a day, she says. One young patient continually sets off his high-pressure alarm when he laughs. The alarms can sound alike, but a nurse can figure out what the problem is by watching the flashing lights and, more importantly, by listening to the patient’s breathing.
"Because you hear the air going through the circuit, usually before you even look at the panel, you instinctively know whether it’s low pressure or high pressure," she says. "So much of ventilator care is auditory, because you hear the sounds long before you ever see what’s going on. That’s particularly true when a nurse is caring for a patient at night.
"We try to put patients in a normal setting, so they sleep in their own beds and the lights are out," she says. "So the nurse comes in, and with very little light she can tell what’s going on because she can hear the air, she can hear the patient’s lung sounds, she can tell if there are secretions, things like that."
Preferred Health Care can be assigned to care for pediatric patients round-the-clock, depending on the payer. Nurses come into the home in shifts and usually handle nearly all the care. However, families are trained in how to care for the patient before the child is discharged, in case they’re needed or in case the payer won’t authorize 24-hour care.
"Most of our patients can’t work an alarm system, so they require 24-hour observation," she says.
They also require lots of prep work before coming home to ensure their health isn’t compromised by outside issues such as power availability. The family must keep a backup supply of car batteries for trips out of the house and in case of power failure. The power company must be notified to put the home on its priority list to restore electricity after storms or other power failures.
The city or county must put the street on its priority list as well, so roads are cleared after snowfalls or ice storms in case an ambulance needs to get through.
"You have to call the local ambulance department and give explicit directions and instructions as to what’s wrong with the patient and that there’s a strong possibility at some point in time they’re going to need your assistance," she says. "Also, we make sure there’s stickers on the windows to let the fire department know there’s a vent-dependent person inside."
Nurses train the family in the necessary cleaning procedures, although Falmier says the staff usually do most of the cleaning. All of the equipment is cleaned multiple times per week. Tubing must be cleaned and dried carefully to inhibit the growth of bacteria and to keep condensed moisture from interfering with breathing.
"One of the first jobs we do is set up a cleaning routine — who cleans what, what day — and to make sure everything gets dry and is in a clean environment," she says.
During her inservice, Falmier instructs nurses on the application of medications, which are converted to aerosol liquids and administered through a port in the circuit.
Before administering medications, nurses must clear the patient’s chest of excess mucus by performing chest physiotherapy. Although older percussive methods still are used (clapping a cupped hand on the chest), new technology has led to advances such as an inflatable vest that does chest percussion.
Prepare for changes
Falmier also explains how to help families cope with the physical and financial strains of this intensive form of home care. She says insurance companies often won’t pay for the significantly increased power and water bills brought on by the use of high-voltage ventilators and other needs.
"A lot of vent-dependent patients have to have climate control, so that means air conditioning or heat year-round," she says. "Patients and family complain about increased water bills because you have more to clean more frequently. You have more people using the microwave. You use more paper towels, more laundry detergent, more cleaning supplies, that kind of thing. That’s something the families really notice."
They also must cope with the number of strangers in their home at all hours — nurses, therapists, medical supply companies, and social workers. When children are involved, state agencies provide much-needed early intervention or educational resources, but also more visitors.
"They’re all wonderful resources, but sometimes it ends up being so many people it’s overwhelming," she says. "[Families] have this revolving door that seems to stress a lot of them."
A nurse needs to take care to give the family as much control as possible over daily life in the home. It’s also important to tap the family as a resource for information, she says. "They know their child better than anyone," she says. "If a patient is doing something you’re not used to clinically seeing, usually the parents are the best ones to tell you what’s going on."
Caring for vent-dependent children often comes with its own set of hazards. A baby’s pudgy chin, for example, creates an obstacle to inserting and maintaining a trach tube. And small children often try to pull their apparatuses out once they figure out how to undo the ties.
"Also, [be aware of] siblings of kids with trachs — those 2-year-olds like to put stuff in holes. So you’ve really got to watch and make sure that they don’t put stuff in it," she says. "You never think of these things."
Thanks to recent court interpretations of the Americans with Disabilities Act, older children can attend school, accompanied by a nurse, using a specially rigged wheelchair that carries the vent and a backup battery.
Other backup equipment, including an oxygen tank, is kept at the school, and patients travel with manually operated AMBU bags and other precautionary equipment.
Many of Preferred Health Care’s small patients remain vent-dependent throughout their lives. Others gradually are weaned from the machine as their own airways mature. Often, those children haven’t had a chance to learn to speak. Falmier says one of the most rewarding aspects of a nurse’s job comes when the trach tube has been removed and the child can make noises for the first time.
"The best thing in the world is whenever the child finally gets the trach either capped or [decannulated], and they hear their voice and they realize they can make sound. When we have families who have been with us for three or four years, and then they’re finally flying on their own, that’s wonderful." n
• Anissa Falmier, Director of Pediatric Services, Preferred Health Care, 1107 W. DeYoung St., Suite 70, Marion IL, 62959. Phone: (618) 993-4081. Fax: (618) 993-0842.