Effective Strategies to Prepare Infants and Families for Home Tracheostomy Care
From Advances in Neonatal Care
Official Journal of the National Association of Neonatal Nurses
by Elizabeth Fiske, RNC, MSN, NNP
Abstract and Introduction
In neonates tracheostomies are most often indicated to provide a stable airway for infants with congenital or acquired airway obstructions and to provide long-term mechanical ventilation. Learning to care for an infant with a tracheostomy can be challenging for both professionals and families. This article provides an overview of tracheostomy care and the essential elements of family teaching. The surgical procedure and basic anatomical changes are reviewed. Complications such as accidental decannulation, mucus plugging, infection, bleeding, and granulation tissue formation are discussed. Humidification is critical for the infant with a tracheostomy and humidification delivery methods are discussed. Further, an overview of the impact of the tracheostomy on normal development, such as swallowing and language development, is provided.
Teaching parents to safely care for the infant with a tracheostomy at home requires careful planning and systematic education. The parents must acquire a unique set of technical skills demonstrating competence and comfort in providing stoma care, suctioning, and tube changes. Parents must be prepared to initiate cariopulmonary resuscitation (CPR) and need to understand alterations in CPR techniques in infants with a tracheostomy. They also need to develop critical thinking skills to handle emergency situations. A safe transition to the home can be accomplished by using a multidisciplinary approach to coordinate all facets of care.
Improvements in neonatal care have resulted in increased survival rates for infants born prematurely and those with congenital anomalies. Concurrently, the incidence of tracheostomies in infants has increased. Of all pediatric tracheostomies performed in 1972, only 30% were in children under one year of age; by 1996, 70% were in children under one year of age.
Care of the infant with a tracheostomy can be challenging for families as well as nurses. The neonatal nurse has an important role in preparing these infants and families for discharge. Parents are often overwhelmed with the idea of bringing home an infant with a tracheostomy and are concerned about their ability to provide the necessary care for their child (Fig 1). In addition, they are concerned about the underlying condition that required the tracheostomy and the long-term implications of the tracheostomy.
Several factors are associated with successful transition to home management of a tracheostomy. The way the family functions, including their maturity level, resources, and emotional stability, will determine how well they will adapt to caring for the infant. Open communication and a strong relationship with the health care team will aid in the psychosocial adaptation of the family. An educational program, including all aspects of tracheostomy care, is essential to a successful transition home. Developing a comprehensive discharge plan is important to support the family, to familiarize them with tracheostomy care, and to link them with resources available after they are discharged.
Figure 1. Parents are often overwhelmed when their child requires a tracheostomy. Open communication with the health care team and a comprehensive discharge plan, including a structured educational program, can help the family adapt.
Instruction regarding tracheostomy care begins as soon as the need for a tracheostomy is identified. Reviewing basic information about the indications, terminology, and airway physiology of a tracheostomy allows the nurse to teach parents how to care for their infant's airway at home.
What is a Tracheostomy?
A tracheostomy is a surgically created airway, or stoma, in the neck that bypasses upper airway structures. The stoma allows a tracheostomy tube to be inserted into the trachea. The tracheostomy tube maintains the patency of the stoma and serves as a device to connect equipment such as ventilators and resuscitation bags. It allows inspiration and exhalation to occur from the tracheostomy tube to the trachea, bypassing the upper airway. Depending on the size and fit of the tracheostomy tube, some airflow may still be present around the tube, through the vocal cords, and through the upper airway.
Under most circumstances, tracheostomies are performed in the operating room under general anesthesia. The incision in the skin is made between the thyroid isthmus and the sternal notch, the fascia is dissected, and a vertical incision is made in the trachea. The tracheal incision is made at the level of the second to fifth tracheal rings and requires incision through one to three tracheal rings (Fig 2). Stay sutures are often placed through the tracheal wall on either side of the tracheal incision. These are used to aid in identifying the incision in the event of a problem requiring reinsertion of the tube before healing of the tract. The tracheostomy tube is inserted in the opening under direct visualization and sutures and/or a tracheostomy tie is used to secure the tube in place.
Figure 2. The tracheostomy tube is inserted at the level of the second to fifth tracheal rings.
Indications for a Tracheostomy and Tracheostomy Complications
Indications for a Tracheostomy
Tracheostomies are indicated for a variety of reasons, including structural airway problems, and in infants who require prolonged mechanical ventilation. In the past, acute infectious upper airway obstruction was a common reason for performing a tracheostomy, particularly as an emergent procedure. Currently, long-term intubation and congenital airway anomalies necessitating trachestomy are more common. The most prevalent indications for a tracheostomy include congenital or acquired airway obstructions, such as Pierre Robin Sequence, tracheomalacia and subglottic stenosis, problems associated with prematurity, neuromuscular diseases, and congenital anomalies.[6–10]
Rates of tracheostomy complications for children <1 year of age vary widely between studies. Complications have been reported in as few as 29% to as high as 64% of children with tracheostomies.[9,11]
Reports of early postoperative complications range from 11% to 19%.[6,12] Accidental decannulation and tube plugging are more concerning in the early postoperative period, when reinsertion of the tube may be difficult due to an immature stoma. Long-term complications are more frequent; rates from 46% to 63% have been reported.[12,13] Mortality rates associated directly with tracheostomies range from 0.5% to 2.8%.[6,10,13]
Stoma Complications. Potential complications seen with tracheostomies include granulation tissue formation, infection of the stoma site, and bleeding. The most frequently reported complication is the development of granulation tissue. Formation of fragile, highly vascular granulation tissue around the stoma is relatively common and sometimes resolves with antibiotic ointment.
Indications of infection include erythema, skin breakdown, and drainage at the stoma. Infections at the stoma site are often managed by increasing the frequency of stoma care and use of topical antibiotic ointment. Most commonly, bleeding of the tracheal mucosa occurs at the stoma and at the distal tip of the tracheostomy tube. Inadequate humidification or deep and/or aggressive suctioning may initiate or exacerbate bleeding. Strict attention to suctioning technique and use of adequate humidity can decrease the potential for bleeding.
Cannulation Complications. During routine tracheostomy tube changes or when the tube becomes dislodged, the tracheocutaneous fistula may constrict, prohibiting passage of the tube. If this occurs, reposition the infant and reattempt tube insertion. If the second attempt is not successful, insert a tracheostomy tube that is one size smaller. If the smaller tube cannot be inserted, insert a suction catheter or endotracheal tube into the stoma to maintain patency. If all attempts to cannulate the stoma fail and the infant is not adequately ventilated, attempt ventilation using a bag and mask over the upper airway while occluding the stoma. Alternatively if the upper airway is obstructed, attempt ventilation via the stoma.
Associated Anatomical and Developmental Changes
Normally the upper airway warms and humidifies inspired air and has a significant role in the sensory processes of taste, smell, and speech. The nose and cilia serve as a filter for foreign material. Once air bypasses the upper airway, inspired air is no longer humidified or filtered. Breathing unhumidified air can thicken secretions and increase the risk of mucus plugging. In addition, airway changes such as damage to mucous glands and epithelium, loss of ciliary action, and cellular desquamation can occur.
Once a tracheostomy is in place, humidity must be provided in an effort to match the humidity con tent of air inspired via the tracheostomy with air inspired under normal conditions. A heated, humidified tracheostomy collar is an excellent method to deliver humidity. The humidifier warms the gas and adds water vapor from a heated water reservoir. Condensation can occur in the tubing; this is a potential source for bacterial growth. Special attention must be paid to the height of the tubing in relation to the tracheostomy; condensate can inadvertently be emptied into the tracheostomy causing an airway obstruction. The tracheostomy collar limits the infant's mobility and is best used during sleep and as needed throughout the day (Fig 3).
Figure 3. A heated, humidified tracheostomy collar can help to prevent drying of the airway and mucus plugging.
Heat moisture exchangers (HME), also known as "artificial noses," contain a hydrophilic material that retains the infant's exhaled heat and moisture. They can be placed on the end of the tracheostomy tube (Fig 4). Using an HME, the infant is able to recycle the retained heat and humidification during subsequent breaths. These devices are inexpensive, simple to use, and do not require tubing, water, or electricity. HMEs are useful when the infant is out of bed and for transport. The caregiver must be aware that airway obstruction can occur when coughed secretions become clogged in the HME.
Figure 4. A heat moisture exchanger helps prevent heat and humidity loss while promoting mobility.
Speech and Language Development
Infants use vocalization and crying, as well as facial expressions and eye contact, as forms of communication and social interaction. Because the majority of airflow bypasses the vocal cords, infants with tracheostomies will have a limited ability to vocalize. Infants with tracheostomies must rely on nonverbal signals to express their needs; caregivers must learn to interpret these signals. The critical period for acquiring language skills is generally considered to be from birth through 5 years of age. Interventions and follow-up by speech therapists are essential to promote normal speech and language development.
Some infants may be able to use a one-way flow valve to promote a more normalized developmental pattern of vocal exploration that will aid in speech and language acquisition. These valves fit on the tracheostomy tube and have a thin silicone membrane that opens on inspiration, allowing air to flow into the trachea via the tracheostomy tube. On expiration, the valve closes forcing air to flow around the tracheostomy tube, upward past the vocal cords and out via the upper airway passages (Fig 5).
Figure 5. A one-way valve promotes vocalization.
One-way valves have been used in infants as early as two weeks of age. Prior to use of a unidirectional valve, the infant must be assessed for adequacy of airflow around the tracheostomy tube. Without adequate airflow around the tracheostomy tube, there is a risk of overinflation of the lungs and potential lung injury with the use of a unidirectional valve. If the infant has a cuffed tracheostomy tube, the cuff must be deflated to use a one-way valve. These valves are generally not disposable and should be cleaned and dried daily.
Contraindications for the use of a valve include severe tracheal stenosis, excessive granulation tissue, severe tracheomalacia, tracheal edema, medical instability, copious thick secretions, bilateral vocal cord paralysis (adducted position), severely reduced lung compliance, or a foam cuffed tracheostomy tube.
Swallowing and Eating
Many of the same problems that necessitated the tracheostomy can also interfere with feeding and swallowing. A team approach to the feeding challenges, utilizing oral-motor interventions, should be based on the source of the problem. Select interventions may include use of a one-way valve during feeding, use of different nipples to better control milk flow, and use of smaller, more frequent feedings. In addition, desensitization programs may be needed to combat hypersensitivity to touch and taste. Outpatient follow-up with speech and/or occupational therapists is often very helpful.
Understanding Tracheostomy Devices
Types of Tracheostomy Tubes
There are several types of tracheostomy tubes available for infants; each meets a variety of needs. Most commercially manufactured tubes are made of silicone or polyvinyl chloride (PVC). Silicone tubes are softer and more flexible than PVC tubes and are potentially less irritating and damaging to tracheal tissue. PVC products contain diethylhexyl phthalate (DEHP), a chemical that can leach out of the tube and convert to a more toxic metabolite. Deposition in the tissue is linked with adverse effects in the liver, kidneys, lungs, heart, and reproductive tract. Use of products without PVC is preferable whenever substitutes are available.
Most commonly in infants, simple single lumen, noncuffed tubes are used (Fig 6). The neonatal airway narrows at the level of the cricoid cartilage serving as a functional cuff. In rare circumstances, a cuffed tube may be needed to minimize air leak if the infant requires mechanical ventilation. Risks of using cuffed tubes include potential damage to the trachea, development of tracheomalacia, and erosion into the innominate artery.
Figure 6. Neonatal tracheostomy tubes are usually uncuffed, single lumen tubes.
Assuring Proper Tracheostomy Size and Placement
Tube selection can be confusing because of the variety of types and sizes of tracheostomy tubes available. The three measurements that determine proper fit and sizing of the tracheostomy tube are:
- Inner diameter
- Outer diameter
- Tube length
The inner diameter is the actual airway diameter, and this measurement is usually imprinted on the neck plate of the tracheostomy tube. Size numbers and product codes of most neonatal and pediatric tubes are based on the inner diameter measurement.
Selecting an appropriate inner diameter size is important for several reasons. Infants with conditions requiring mechanical ventilation or frequent suctioning will benefit from having the largest diameter tube that will fit correctly without risking pressure damage to the surrounding developing tracheal tissue. Smaller tubes will allow more airflow around the tube aiding in phonation but can also become occluded more easily from secretions. Common tube dimensions are provided in Table 1.
The outer diameter and tube length are not standardized and can vary between manufacturers. The outer diameter reflects tube thickness and will vary depending on the type of material from which the tube is composed.
Proper tube length will depend on the infant's airway length. The tracheal length for a term newborn is 5 to 6 centimeters. The main difference between neonatal tubes and pediatric tubes is that the neonatal tubes are shorter in length than pediatric tubes (Fig 7).  Most commercial neonatal tracheostomy tubes are at least 3 cm long. A small preterm infant may need a shorter tube length than is available in a standard size. A tube that is too long can irritate the carina and precipitate a bronchospasm.
Figure 7. The primary difference between neonatal and pediatric tracheostomy tubes is usually the tube length. The tube on the left is a neonatal tube and the tube on the right is a pediatric tube. Both tubes have identical inner and outer diameters, but vary in length.
Tracheostomy tubes can be custom ordered to fit the specific anatomic requirements of an infant or child. Customized tubes are more expensive and require extra time to be manufactured and processed. The inner diameter, outer diameter, and length should be evaluated for the appropriate fit prior to patient use.
Tracheostomy ties are used to secure the tube and should be tight enough to secure the tracheostomy tube while allowing one finger between the tie and the infant's neck. Ties are changed with each tracheostomy tube change and between tube changes when they become soiled. Cotton/polyester twill tape comes packaged with some tracheostomy tubes and can be secured in a variety of ways.
A simple method of securing this type of tie between tube changes is to thread an end of the tie through one of the neck plate holes while the tracheostomy tube is being held in place. Pull the tie through the hole, bringing both ends of the tie together. Place both ends of the tie around the back of the infant's neck. Thread an end of the tie through the neck plate hole on the opposite side and tie securely in a triple square knot to the other end of the tie.
For convenience, ties that attach using Velcro are also available. These ties are easy to thread, easy to secure, are available in small sizes, and adjust to fit most infants. Tracheostomy ties should be made of durable material that will not fray. Stainless steel chains are sometimes customized to the precise length needed and used as tracheostomy ties. Use of ribbons should be discouraged because they can be irritating to the skin, potentially causing breakdown.
Teaching Families to Provide Tracheostomy Care in the Home
Goals and Objectives
One of the primary goals of an education program is to promote positive adaptation to the tracheostomy. Nurses can foster positive interactions and participation with the infant. The family must develop the skills needed to competently and independently provide tracheostomy care. Specifically parents need to be able to:
- Articulate the reason for tracheostomy tube placement.
- Describe airway anatomy, tube location, and accompanying airway changes.
- Recognize the signs of breathing difficulty and how to respond to these problems.
- Demonstrate how to respond to an emergency.
- Identify postdischarge resources for questions and ongoing support in the community.
Effective Teaching Methods and Resources
A variety of methods can be employed to teach families; carefully assess each family's learning preferences and teach them in the manner in which they learn best. Preoperatively teach the family the reason for the tracheostomy and review the basic anatomy and physiology of the airway. Systematically outline and discuss the risks, benefits, and alternative options for care. Describe how their infant will look after surgery and what to expect postoperatively. Encourage parents to verbalize their fears and concerns so that they can be addressed prior to surgery and throughout the patient's course. Anxiety may be decreased if parents can see a tracheostomy tube and supplies before surgery. Table 2 provides a host of excellent resources that are useful tools for family teaching.
Postoperatively, an overview of airway anatomy, implications of bypassing the upper airway, and basic tracheostomy care can be introduced using individual instruction, written material, and videotapes. Care givers should be able to competently perform the skills of stoma care, suctioning, and tracheostomy tube change before they are discharged.
Technical skills can be developed through individualized one-on-one training using a doll. This type of practice will help families gain confidence and decrease anxiety before performing these skills on their infant. Once the parents become comfortable with the basic techniques, they can begin to provide tracheostomy care for their infant with coaching and assistance from the staff as needed. Provide families with an opportunity to practice skills in a nonthreatening environment. Foster ongoing discussions to address any issues or concerns and help the family self-identify specific learning and skill acquisition needs.
After the basic technical skills are mastered, the focus should shift to appropriate decision making. Help parents to identify their infant's cues; this is the foundation for competent caregiving. Teach parents how to assess their infants, to identify findings that require intervention, to formulate an action plan, and ultimately, to independently perform the appropriate skills. Involve parents at the bedside on a daily basis. Provide written instructions and contact numbers for questions after discharge and to reinforce bedside teaching. Utilizing structured discharge teaching and refining the discharge process can decrease the length of stay, benefiting the infant, the family, and the institution.
Suctioning Concepts and Techniques
Increased secretions are commonly seen in the presence of an artificial airway. Parents must be able to both verbalize and recognize signs and symptoms that indicate suctioning is needed. Reasons to suction include desaturation, increased anxiety, restlessness, visible secretions in the tube, inability to cough up secretions, increasing respiratory distress, noisy respirations, color change, tachycardia, and tachypnea.
Suctioning should only be done as needed. Careful suctioning practices will help to avoid complications such as hypoxemia, hypotension, hypertension, bronchospasm, increased intracranial pressure, vasovagal responses, and trauma to the airway.[2,14]
In the immediate postoperative period, sterile technique is used to suction the tracheostomy tube. Once at home, suctioning often becomes a clean rather than a sterile procedure.[21,25] One study reported that 96.7% of families used clean technique for suctioning and 50% of families reused suction catheters.
Parents must be trained in proper suctioning technique and must have suctioning equipment consistently available and ready for use. Precautions required for suctioning a tracheostomy include attention to the suction pressure, limiting the amount of time for a suction pass, and proper depth of suctioning. Suction pressure should not exceed 80 to 100 mm Hg (3–4 inches Hg).[16,26] To prevent complications, limit the amount of time for catheter insertion, application of suction, and withdrawal of the catheter to approximately 5 seconds or less.
Removal of secretions is facilitated by using a rotating motion as the catheter is withdrawn, maximizing contact between the tube and the side holes of the catheter.
Determine a premeasured suctioning depth so that the catheter is not inserted more than 0.5 cm beyond the end of the tracheostomy tube.[6,14,26] This depth can be determined by measuring the tube, including the connector, and adding 0.5 cm to that number. Table 3 provides appropriate suction depths and catheter sizes. Use of an airway information card listing tracheostomy tube size, suction catheter size, and suction depth with a ruler helps to promote good practice in the hospital and serves as a good teaching aid for families and caregivers in the home (Table 4).
Parents need a battery-operated suction machine for emergency power outages and for transporting the child. DeLee suction traps are helpful as a backup for emergencies. Additional suction catheters or devices may be required for suctioning the nose and mouth and to remove secretions that are coughed out of the tracheostomy tube. Larger bore suction devices, such as suction tip yankeurs and bulb syringes, may be used for these purposes but should not be inserted into the tracheostomy tube.
Tube Changes and Stabilization Techniques
The surgeon ordinarily changes the first tracheostomy tube 5 to 7 days after insertion. The patient's needs as well as physician preferences will determine the frequency of tube changes. Infants have smaller diameter tracheostomy tubes, placing them at increased risk for occlusion by secretions.
Parents must demonstrate that they can comfortably and independently change the tube prior to dis charge. Planned tracheostomy tube changes are best performed by two people, one person to remove the tube and the second person to insert the clean tube. To perform a tube change, gather all of the necessary supplies. Prepare the clean tube by inserting the obturator, the rigid curved-shaped piece that fits inside the tracheostomy tube. The obturator helps maintain the appropriate curvature for insertion and also provides a rounded end for the tracheostomy tube, decreasing the risk of tissue damage during insertion. Attach one end of the tracheostomy tie to the neck plate of the clean tube. Lubricate the tip of the tube lightly with a water-soluble lubricant. Prepare suction and oxygen equipment.
Place a rolled blanket underneath the infant's shoulders to help to slightly extend the neck, allowing for better visualization of the stoma and ease of insertion. One person loosens the tracheostomy tie on one side while manually holding the tracheostomy tube in place. Remove the tracheostomy ties from behind the neck and then remove the tracheostomy tube. The second person inserts the clean tracheostomy tube using a downward, curving motion. Remove the obturator immediately when the tracheostomy tube is in place. Place the clean tracheostomy tie behind the neck and attach it to the other side of the neck plate. Once completed assess the infant's work of breathing and overall comfort.
Tracheostomy Tube Cleaning and Reuse
Some institutions recommend using sterile tracheostomy tubes, whereas others recommend cleaning and reusing tubes. As many as 55% of families clean and reuse tracheostomy tubes. An increased risk of pneumonia may be associated with reuse. Of patients who cleaned and reused tracheostomy tubes, 60% reported pneumonia in the previous year compared with a reported rate of 25% in patients who used sterile tubes for each change.
Refer to the manufacturer's recommendations for cleaning; cleaning recommendations vary depending on the brand and composition of the tube. Commercial cleaning kits are available and include items such as cotton covered wire cleaners, gauze, wire brushes, and basins. PVC tubes can become progressively stiffer over 3 to 4 months of use and may develop splits or cracks. Inspect tubes for cracks or tears before insertion. Families often rotate the use of several tubes so an individual tube may last for 6 months to 1 year of intermittent use without problems.
Good stoma care is important to maintain skin integrity and to help prevent infection. Clean the area twice a day and as needed using gauze or cotton-tipped applicators. Avoid using any products that contain lint, small fibers, or other small particles that could inadvertently enter the stoma. Water, soap with a neutral pH, or other products preferred by the physician can be used for stoma care. When providing stoma care, start at the stoma and wipe or roll the applicator outward away from the stoma to make sure that no dried or crusted secretions enter the stoma. Clean under the neck plate, taking care not to dislodge the tube, assess the skin, and then thoroughly dry the area.
Equipment and Supplies
Assist parents in identifying the equipment and disposable supplies that will be needed (Table 5). Have these ordered and delivered prior to discharge. Parents will need to be trained to use the home equipment; pay particular attention to differences between hospital and home equipment.
Some precautions are necessary for an infant with a tracheostomy. Handwashing prior to providing any care is extremely important. Teach parents how to properly clean and store all equipment. Exposure to cigarette smoke, aerosol sprays, dust, pet hair, powder, or any other inhaled irritants must be avoided. Water is particularly hazardous for the infant with a tracheostomy. Sponge baths or shallow tub baths may be taken with strict caregiver attention. The infant can wear regular clothing with the exception of high necklines that can occlude the tracheostomy tube (Fig 8). Clothing should not be made of material that frays easily or has fine, furry, or fuzzy fibers. Play areas with fine material that may enter the tracheostomy, such as sand boxes, must be avoided.
Figure 8. Clothing that buttons or snaps in the front without high necklines is preferable for the infant with a tracheostomy.
Planning for Medical Emergencies in the Home
Training in management of tracheostomy emergencies, including a CPR class, is essential before discharge. Parents must be able to quickly recognize and treat respiratory distress, airway obstruction, cyanosis, increased respiratory effort, and extreme anxiety. Most pediatric arrests at home start with hypoxia and hypercarbia and progress to respiratory arrest with eventual cardiac arrest.
Focus parent teaching on differences in CPR for infants with a tracheostomy. Additional emphasis on and interventions related to the airway are imperative; teach parents to use a logical and systematic approach. The first step in resuscitation is to assess and establish a patent airway. Using the head tilt, chin lift method of positioning, or placing a small roll under the shoulders, the tracheostomy site can be visualized quickly alleviating any apparent problems. If secretions are visible, suction the tracheostomy tube. Attempt manual ventilation using a resuscitation bag attached to the tracheostomy tube; if the chest does not rise, change the tube immediately. If a clean tube is unavailable, mouth to mouth and nose, if the infant's upper airway is patent, or mouth to stoma ventilation can be provided. Once ventilation is established, typically no further adaptations are needed and the standard resuscitation sequence can be followed.
Children with tracheostomies must always have special emergency supplies accessible. Prepare an emergency bag, such as a backpack or tackle box, with everything that may be needed for both routine and emergent care. Items that should accompany the infant at all times are listed in Table 6.
Additionally, encourage and assist parents in contacting emergency medical providers in their area and provide clear directions to their home for use in the event of an emergency. Supplying a detailed protocol to local emergency first responders and emergency rooms is recommended for complex infants who are at high risk for events in the community setting.
Parents need to recognize and respond to emergency situations expediently. They need to recognize signs of distress in their infant such as increased work of breathing, retractions, and restlessness. They need to know specifically how to intervene for desaturations, tachypnea and tachycardia. Use mock scenarios to allow the parents to practice skills and problem solve specific situations.
Parents must be able to respond to an accidental decannulation or a plugged tube. Signs of a plugged tube include pale or blue color, retractions, and in ability to ventilate. Having supplies for a trache ostomy tube change available at all times is essential. In an emergency, if the same size tube cannot be inserted, a size smaller tube should be used. If the size smaller tube cannot be inserted, a suction catheter may be used to keep the stoma patent until emergency help arrives.
Parents must be taught when to activate the 911 system. Emergency help will be needed anytime a tracheostomy tube cannot be reinserted, particularly if the infant cannot adequately ventilate without the tracheostomy tube in place. An airway obstruction that is not relieved by suctioning and/or a tube change is also an emergency situation. A tube change may be needed because of accidental decannulation or mucus plugging. Pulsing of the tracheostomy tube may indicate impending erosion into the innominate artery.
Parents need to recognize signs of illness and pulmonary exacerbation and report these changes to their health care provider. Fever and changes in secretions, such as yellow or green color, foul odor, or change in consistency, may be indicative of an infection. Fever, erythema, swelling, or drainage around the stoma are also signs of infection that should be reported urgently. Increased respiratory distress that is not relieved by suctioning or a tube change requires further treatment. The physician should be notified of any difficulties associated with tube change, particularly if a smaller tracheostomy tube had to be inserted.
Planning for a Safe Transition Home
Anticipatory Teaching and Guidance
A multidisciplinary effort is required to successfully transition the infant with a new tracheostomy to the home. A multitude of needs must be met, including education of the parents, identification and education of respite caregivers, obtaining home equipment and disposable supplies, identifying financial and support resources, and arranging follow-up care. Detailed discharge planning checklists, focused on discharge of the complex infant, may be useful tools to organize the steps needed for a smooth transition.
Patient care conferences, including representatives from all disciplines, can help facilitate the discharge planning process and can help integrate and clarify goals. They also provide an opportunity for the family to meet home care and follow-up providers. They allow open communication between team members and an opportunity for parents and team members to voice any questions or concerns. The conferences should include nurses, respiratory therapists, neonatologists, the otolaryngologist, speech therapists, social workers, child life specialists, and home health providers.
Parent education starts prior to surgery. Provide information about anatomical changes and general care of the tracheostomy. Postoperatively, teaching can focus on acquisition of basic skills and then advance to critical thinking and decision-making skills. Mock scenarios provide parents with an opportunity to problem solve and to practice CPR techniques and emergency skills. A comprehensive teaching plan is useful to ensure that parents are taught all the skills they will need and can competently perform these skills (Table 7).
Develop a schedule of teaching and implement the plan early to provide the needed content and to assure ample time for practice and acquisition of skills.[23,30] Arrange for a rooming-in period prior to discharge: this provides a transition from the intensive care unit to the home setting. Independent caregiving is fostered while backup assistance and coaching are available. This helps to promote parental confidence in their caregiving abilities.
Prior to discharge, provide an overview of long-term issues, such as the typical timelines for decannulation. Most children are able to decannulate within approximately 2 years.[6,9,12,13] Typically, a bronchoscopy is performed to evaluate the airway for granulation tissue, suprastomal collapse, or other anatomic problems. The tracheostomy tube is serially downsized and if the child tolerates downsizing, the tube is capped. The child is monitored on an inpatient basis before removing the tracheostomy. The time interval required for this process will vary based on the child's history and tolerance of the procedure. In addition, a sleep study may be performed while the tracheostomy tube is capped. The stoma usually closes within a few hours once the tracheostomy tube is removed. Surgical closure is required if the stoma fails to close spontaneously.
Planning for Follow-Up
Most infants with a new tracheostomy will require several follow-up appointments; coordination of care is key. Parents will need to identify a pediatrician who is comfortable with caring for an infant with a tracheostomy. Good communication with the pediatrician before discharge is essential. In addition, the infant will need to follow up with the otolaryngologist and other specialists, depending on the underlying problem that necessitated the tracheostomy. The infant will need to be followed by a speech therapist and may need services of an occupational and physical therapist.
Nursing visits and/or home nursing care are generally very helpful to provide added support at home. The home care nurse can often identify unanticipated challenges in the home environment, can reassess the infant's ongoing stability, and can reinforce important principles of care. Parents can use this time to rest, take a break outside the home, or take care of other issues while nurses are present. As parents gain confidence with tracheostomy care, home nursing hours can be decreased.
Caring for a child with a tracheostomy can be draining for home caregivers. Early in the infant's course, ask parents to identify additional respite caregivers, such as extended family or friends, who may be willing to assist. Include this extended caregiving network in teaching sessions. Parents may benefit from referral to support groups or linking with families who have successfully cared for an infant with a tracheostomy. Additionally, a number of excellent Internet resources are available for parents (Table 8).
Refer parents to any applicable community resources that provide financial assistance or psychosocial support. In addition, contact utility providers to place the infant's home on the priority list for repair in the event of a power outage or service interruption.
A comprehensive education program for families can ease the transition from the hospital to home. Families must adapt to the infant's airway alteration and must successfully master a series of technical skills. Additionally, critical thinking skills must be developed and applied in response to the infant's needs. Continuity of care can be maintained by arranging home visits, follow-up, and provision of home equipment and supplies. Nurses can turn a crisis situation into a time of growth for families through anticipation of needs and comprehensive discharge planning.
Reprinted with permission
Reprint Address: Address reprint requests to Elizabeth Fiske, RNC, MSN, NNP, East Tennessee Children's Hospital, P.O. Box 15010, Knoxville, TN 37916 USA; Email: firstname.lastname@example.org