Nursing Care of the Child with Congenital Heart Disease

Chapter 22

Nursing Care of the Child with Congenital Heart Disease PATRICIA A. KANE, MSN, CPNP, COLEEN ELIZABETH MILLER, RN, MS, PNP, JUDITH A. ASCENZI, RN, MSN, and DOROTHY G. LAPPE, RN, MS, MBA

INTRODUCTION PEDIATRIC CARDIAC NURSING SKILLS AND KNOWLEDGE Development of Advanced Pediatric Cardiovascular Curriculum The Nurse’s Role: Preoperative Care The Nurse’s Role: Admission of the Child to the ICU Following Surgery The Nurse’s Role: Routine Postoperative ICU Nursing Care for the Child after Cardiac Surgery Hemodynamic Stability Monitoring Lines Arrhythmias Excessive Bleeding and Cardiac Tamponade Extracorporeal Membrane Oxygenation Delayed Sternal Closure Respiratory Status and Pleural Effusions Electrolyte Imbalances Altered Neurologic Status Infection Acute Renal Failure Pain Management and Sedation Transfer to the General Care Unit The Nurse’s Role: Preparation for Discharge Home Diet Medications Oxygen Wound Care Home Care The Pediatric Nurse Practitioner’s Role in the Care of the Child with Congenital Heart Disease PSYCHOSOCIAL IMPACT OF CONGENITAL HEART DISEASE IN THE CHILD Initial Presentation and Diagnosis Medical-Surgical Plan Developmental Needs of Children FAMILY-CENTERED CARE

INTRODUCTION Nurses play a critical role in the life of the child with congenital heart disease (CHD) and their families. This chapter describes the advanced skills and knowledge needed by nurses who care for the child with congenital heart disease, discusses the various complex and challenging roles and responsibilities of the pediatric cardiac nurse, explores the psychosocial impact of congenital heart disease on children and families, and discusses the nurse’s role in assisting family adaptation at each phase of the illness and treatment.

PEDIATRIC CARDIAC NURSING SKILLS AND KNOWLEDGE Development of Advanced Pediatric Cardiovascular Curriculum The care of infants and children with congenital heart disease is complex and challenging. A solid knowledge base facilitates the delivery of quality care by the pediatric critical care nurse. The bedside nurse needs to demonstrate advanced clinical judgment and reasoning skills to provide care for these complex, critically ill children. A systematic, comprehensive curriculum addressing issues specific to the child with congenital heart disease enhances the skills and competency of an experienced intensive care unit (ICU) nurse. The curriculum is presented in various formats including lectures, workshops, self-learning activities, and one-to-one preceptor opportunities. The goals of the program are for the learner to be able to: (1) describe common congenital heart defects and surgical interventions, (2) perform a safe admission of a child to the intensive care unit after cardiac surgery, (3) identify potential postoperative complications, and (4) demonstrate appropriate nursing interventions (Table 22-1). Educational activities are also extended to the nurses who will continue the plan of care after transfer from the ICU. In addition to general information on congenital heart

545

546

PART THREE

Table 22-1

EQUIPMENT AND TECHNIQUES

Advanced Pediatric Cardiac Core

Curriculum Congenital Heart Defects and Surgical Interventions Atrial septal defect Ventricular septal defect Atrioventricular septal defects Pulmonary stenosis Aortic stenosis Coarctation of the aorta Tetralogy of Fallot Transposition of the great arteries Tricuspid atresia Total anomalous pulmonary venous return Truncus arteriosus Hypoplastic left heart syndrome Cardiopulmonary Bypass Routine Postoperative Care Pharmacology Complications Low cardiac output Excessive bleeding/tamponade Acute renal failure Electrolyte imbalances Arrhythmias Pulmonary hypertension Neurologic deficits Infection Advanced Technical Skills Cardioversion/defibrillation Open thoracotomy tray Pacemakers

disease and surgical procedures, other topics include routine postoperative care, common late complications, and routine discharge instructions. Early recognition and prompt treatment of potential complications greatly affect outcome and length of hospital stay.

The Nurse’s Role: Preoperative Care In the current health care era, most children receive preoperative evaluations in the outpatient setting. However, neonates with ductal dependent cardiac defects require immediate care in an ICU. As congenital cardiac diagnoses are increasingly made in utero, the delivery of a child with a ductal dependent cardiac lesion can be planned prior to the baby’s birth. Arrangements for the infant to be delivered in the hospital where the baby’s cardiac care will be delivered eliminate potentially dangerous transfers and separation from parents. Early diagnosis allows the parents to inform family members and make arrangements for the child’s hospitalization. Unfortunately, some infants are not diagnosed until after birth and therefore require emergent transfer to an ICU. This may create a great deal of anxiety for the family and require extensive communication and planning if the mother is hospitalized elsewhere. The goals for preoperative ICU care consist of maintaining hemodynamic stability and preventing infection. Most children needing an ICU as a neonate require prostaglandins to maintain ductal patency prior to surgery or hemodynamic support in the form of inotropes and mechanical ventilation due to severe cardiorespiratory compromise. The ICU nurse

Table 22-2

Basic Intensive Care Unit Bedside

Equipment Cardiac monitor Noninvasive blood pressure monitor Resuscitation bag and appropriate-sized mask Suction equipment and catheters Infusion pumps, syringe pumps External pacemaker Diapers, personal care items

plays a pivotal role in providing family-centered care during this extremely stressful time.

The Nurse’s Role: Admission of the Child to the ICU Following Surgery The ICU nurse makes preparations to ensure the delivery of safe, efficient, individualized care to the child and family while the child is in the operating room (OR). By reviewing clinical data and the proposed surgical plan,26 the nurse can anticipate the postoperative care and potential complications. The ICU bedside should be prepared with necessary equipment to allow the nurse to deliver care without leaving the bedside; this preparation should be done while the child is in the operating room. Table 22-2 provides a list of routine bedside supplies. Emergency equipment listed in Table 22-3 should be immediately available in the unit and brought to the child’s bedside as needed. The admitting ICU nurse and the circulating nurse in the operating room will communicate during the procedure and prior to the child’s arrival to the ICU. This communication includes information about the surgical procedure performed, cardiopulmonary bypass (CPB) time, aortic cross-clamp time, circulatory arrest time, hemodynamic status after separation from bypass, monitoring lines and tubes, vasoactive infusions, as well as any complications. After receiving this report, the admitting nurse makes final preparations for admission of the child to the ICU. For example, a long CPB or aortic cross-clamp time may indicate that the patient will require important hemodynamic support while the heart recovers, usually in the form of inotropic agents (which require infusion pumps to be available) and possibly the need for postoperative extracorporeal membrane oxygenation (ECMO), for which the nurse can prepare by alerting the ICU staff to this possibility. The use of circulatory arrest may make it less likely that the patient will be extubated early and the nurse can prepare

Table 22-3

Emergency Equipment

Electrocardiogram machine Defibrillator with internal and external paddles in neonatal, pediatric, and adult sizes Thoracotomy tray with infant-, child-, and adult-sized rib spreaders Chest tube insertion tray Transcutaneous, transthoracic, and transmyocardial pacing catheters Atrioventricular sequential pacemaker Emergency medications

Chapter 22—Nursing Care of the Child with Congenital Heart Disease

for more prolonged mechanical ventilation. In all cases, the practice patterns of each institution help predict the types of care that will be needed for specific patients. The cardiac OR, ICU nurses, or the cardiovascular nurse practitioner will provide periodic updates to the family while the child is in the operating room. Communication during the procedure has been demonstrated to significantly relieve parental anxiety. The goal of the admission process to the ICU is to ensure safe transfer of care from the cardiac anesthesiology team to the ICU postoperative team. An admission protocol is useful to guarantee a safe, efficient admission each time, regardless of individual personnel involved in the process. The priorities for admission are listed in the Table 22-4. The personnel at the bedside should be limited to those required for direct patient care responsibilities, including the cardiac anesthesiologist, surgeon, intensive care physician, respiratory therapist, and two ICU nurses. The anesthesiologist is responsible for overseeing care during the transition from the OR to the ICU. A minimum of two nurses is required to admit a post– cardiopulmonary bypass patient to the intensive care unit. Each ICU nurse assumes a predetermined role in order for the child’s arrival and admission to the critical care unit to be accomplished smoothly and safely.15 The first nurse, usually the nurse assigned to care for the patient, performs a baseline physical assessment. The second nurse is responsible for managing drainage tubes and hemodynamic monitors. A respiratory therapist and the critical care physicians are also present at the time of the patient’s arrival at the intensive care unit. When the child returns from the operating room, the priorities of assessment for the bedside nurse follow the ABC’s—airway, breathing, and circulation. Initial assessment of the child who is intubated and receiving hand ventilation includes determining if endotracheal tube is patent and appropriately positioned, and ventilation is adequate. In collaboration with the anesthesiologist, the respiratory therapist establishes appropriate ventilator setting and attaches the patient to the ventilator. If the child is extubated, assessment focuses on the patency of the airway and the child’s spontaneous respiratory effort. Once adequate ventilation has been established, the primary nurse assesses the child’s cardiovascular function. This provides a baseline to guide the delivery of care throughout the postoperative recovery period. The nurse at the bedside performs a full cardiovascular assessment every 15 minutes until the child is hemodynamically stable. Once stability has been Table 22-4

Pediatric Cardiac Surgical Admission

Protocol 1. Mechanical ventilation and/or oxygen therapy initiated 2. Monitoring transferred to PICU monitor 3. Chest tube(s) attached to suction 4. Infusion lines transferred, regulated, labeled 5. Pacemaker checked 6. Foley drained 7. Nasogastric tube inserted and attached to drainage system 8. Admission blood work obtained 9. Chest radiograph ordered

547

achieved, the nurse should perform a cardiovascular assessment every hour. The cardiovascular assessment includes measuring vital signs, assessing cardiac rhythm, evaluating peripheral pulses and perfusion, calculating accurate intake and output assessment, and monitoing the child’s neurologic status. The second nurse at the bedside transfers monitoring lines from the transport monitor to the ICU monitor. The use of a transport monitor compatible with the ICU monitors simplifies this procedure and eliminates interruption of monitoring vital signs. This nurse also regulates and labels intravascular infusion lines and drainage systems including chest tubes, urinary catheters, and nasogastric tube. This nurse then obtains admission blood work consisting of complete blood count, chemistry panel, arterial blood gas, and coagulation panel. Performing these tasks in a sequential fashion promotes order during the admission process and allows completion of these vital tasks in an expeditious fashion. Parameters for acceptable vital signs are identified and care is transferred to the ICU team. Additional discussions with the ICU staff before the surgical team departs include plans for extubation and plans for pain management. A chest radiograph is obtained on admission to document endotracheal tube position and lung expansion as well as to record position of monitoring lines and drainage tubes. The bedside nurse plays an important role in monitoring the child’s airway and protecting against accidental extubation while positioning the child for the chest x-ray. Positioning the child in a consistent, supine position and moving wires and tubing out of the x-ray field facilitates the interpretation of the film and decreases the need to repeat x-rays. Specific unit procedures aid this process so that a change in caregivers does not affect the quality of the chest x-ray.

The Nurse’s Role: Routine Postoperative ICU Nursing Care for the Child after Cardiac Surgery Immediate postoperative care of the child recovering from cardiovascular surgery is aimed at monitoring vital signs and identifying and treating potential life-threatening complications.11 The ICU bedside nurse is the most consistent caregiver during this time.19 Ongoing serial nursing assessments identify subtle changes in the child’s condition. The nurse needs to be capable of distinguishing between normal convalescent changes requiring only further monitoring and abnormal changes requiring increased support, monitoring, and additional therapy. Rapid, effective responses to changes influence the treatment and recovery of the child. The bedside ICU nurse actively participates in clinical rounds to review the child’s surgical repair (definitive or palliative procedure) and establish the plan of care. The type of cardiac defect, surgical procedure, and the child’s age and weight influence the postoperative course. Healthy children admitted to the hospital for elective surgical repair have a more predictable, shorter hospital course than does a critically ill neonate undergoing urgent surgery. Most centers utilize critical pathways to streamline care for predictable patients after cardiac surgery.29 Critical pathways along with nursing care plans (Table 22-5) aid in delivering consistent, costeffective care.

548

PART THREE

Table 22-5

EQUIPMENT AND TECHNIQUES

Interventions for Postoperative Care after Cardiac Surgery

Problem

Patient-specific Intervention

Hypoxia

1. 2. 3. 4. 5. 6. 1. 2. 3. 1. 2. 3. 4. 5. 6. 7. 8. 1. 2. 3. 4. 1. 2. 3. 4. 1. 2. 3. 1. 2. 3. 4. 1. 2. 3. 4. 5. 1. 2. 3.

Respiratory distress Decreased cardiac output

Neurologic deficit

Decreased urine output

Pain Infection

Parental stress

Child/parent education

Assess respiratory status every 15 min until stable, then q1 hrs Monitor rate and depth of respirations Monitor presence and quality of breath sounds Assess color of mucous membranes and lips Obtain arterial blood gases as ordered and prn with changes in patient’s condition Turn every 2 hrs unless contraindicated by hemodynamic instability Assess breath sounds before and after suctioning Maintain patency of artificial airway Two-person suctioning for patient with pulmonary hypertension or hemodynamic instability Cardiovascular assessment every hour and with changes Vital signs every 15 min until stable Measure four-extremity blood pressure on admission Record accurate intake and output Measure chest tube drainage every hour, replace output as ordered Check external pacemaker settings Six-lead ECG on admission and every morning Laboratory studies as ordered Assess neurologic status q4 hrs and with changes Provide age-appropriate diversional activity as tolerated Plan care to allow uninterrupted periods of rest Minimize noxious effects of PICU environment Record accurate intake and output every hour Obtain electrolytes as ordered Institute peritoneal dialysis or continuous arteriovenous hemofiltration as ordered Daily weights on same scale, with same clothing Pain management per pain service Provide incisional site splinting as necessary Provide diversional activities Suture line care every day and as needed Invasive site care every day Monitor temperature every hour for 24 hrs, then every 2 hrs, if afebrile Get patient out of bed as soon as possible Encourage parents to express feelings related to child’s illness, hospital experience, and current fears Provide information to assist parents in their basic needs Encourage parents to establish their parent role in PICU through participation in child’s care Invite participation in parent support group Provide parents with information about stress, adjustment, and parenting roles* Arrange preoperative PICU tour Provide information about child’s condition Prepare parent for child’s transition from PICU

ECG, electrocardiogram; PICU, pediatric intensive care unit. *Visconti KJ, Sandino KJ, Rappaport LA, et al: Influence of parental stress on the behavioral adjustment of children with transposition of the great arteries. J Dev Behav Pediatr 23:314–321, 2002.

Hemodynamic Stability Monitoring the child for signs and symptoms of adequate cardiac output is a primary objective during the first 24 to 48 hours after surgery. Perfusion that is inadequate to meet the body’s oxygen demands will usually present with acidosis. However, perfusion that meets oxygen demands in a sedated patient can still be impaired and it is important to recognize the patients whose cardiac output is marginal and in whom a slight increase in systemic oxygen demand (such as by fever, work of breathing, or sepsis) might create a scenario of inadequate perfusion. Adequate systemic perfusion requires an age-appropriate heart rate for the child’s clinical condition, adequate preload or intravascular volume, good myocardial function, and appropriate afterload.11 Residual cardiac disease, decreased cardiac contractility, and alteration of preload and afterload may alter these parameters, resulting in poor cardiac output. Vital signs including oxygen saturation, intracardiac pressure, toe temperature, chest tube drainage, and urine output are carefully monitored and recorded at least every hour for the first 24 hours after surgery.

Unexpected residual cardiac disease has become rare in the era of intraoperative transesophageal echocardiography (TEE).2 Intraoperative TEE after the surgical repair gives the surgeon information regarding cardiac function and anatomy before separation from cardiopulmonary bypass. If significant residual lesions (intracardiac shunts, obstruction to flow,valve regurgitation) exist, the surgeon corrects the remaining problem before leaving the operating room. The use of TEE has significantly decreased the need to return to the operating room for reoperation in the immediate postoperative period. Inadequate intravascular volume as measured by right atrial pressure, left atrial pressure, and blood pressure can result from hemorrhage, inadequate fluid administration, fluid leaking into the third space, and excessive diuresis. Postoperative bleeding can occur from cannulation sites, suture lines, or postbypass coagulopathy. A long cardiopulmonary bypass run leads to platelet dysfunction and diffuse capillary leak. Packed red blood cells, platelets, and fresh frozen plasma should be readily available for replacement due to grossly abnormal coagulation laboratory values or prolonged and excessive bleeding.

Chapter 22—Nursing Care of the Child with Congenital Heart Disease

Despite ongoing improvements in perfusion techniques, the use of cardiopulmonary bypass continues to be associated with postoperative morbidity. Cardiopulmonary bypass affects both intravascular volume and cardiac contractility. The use of an external circuit for circulation and oxygenation has been shown to result in the stimulation of an inflammatory response and subsequent capillary leak. This inflammatory response syndrome results in injury to multiple body systems including the lungs, systemic vasculature, and myocardium. The systemic effects of the CPB inflammatory syndrome may result in substantial increase in intravascular permeability with fluid moving into the tissues, resulting in decreased intravascular volume. The use of methylprednisolone at 6 hours and 12 hours before surgery may reduce the inflammatory injury seen after cardiopulmonary bypass.20 Close monitoring of the child’s vital signs, perfusion, and urine output is essential to ensure that fluid shifting into the third space is not resulting in hypotension and poor end organ perfusion. Decreased cardiac output in the postoperative period may be due to the surgical procedure, hypoxemia, acidosis, electrolyte imbalances, prolonged bypass time, or arrhythmias. Treatment options include fluid boluses, vasoactive infusions, temporary pacing and/or mechanical support (see Chapters 7, 8, and 21). Hypoxemia and acidosis are identified by routine arterial blood gas monitoring. Knowledge of the surgical procedure performed is essential to determine the expected oxygen saturation for a patient. Patients with uncorrected single ventricle physiology (e.g., those with shunts or Glenn anastomoses) will be hypoxemic because they have mixing lesions and oxygen saturations in the 80% range may be normal and expected, whereas patients with corrected circulation and normal lungs should be expected to have saturations above 90%. Inadequate cardiac output will result in poor oxygen delivery to tissues and metabolic acidosis. Serial lactic acid measurement provides information regarding the adequacy of perfusion.16 Persistently elevated lactic acid levels are a marker for poor outcome after cardiac surgery. Mixed venous saturation (SvO2) monitoring also provides information regarding oxygen delivery and utilization. Low mixed venous saturations may indicate a residual right-to-left cardiac shunt or decreased cardiac output. Continuous noninvasive monitoring provides trends in the patient’s perfusion. Commonly, patients have continuous pulse oximetry and cerebral infrared spectroscopy monitoring in the early postoperative period. Analyzing laboratory data and monitoring trends must be done in conjunction with physical examinations. Monitoring Lines Intracardiac monitoring lines placed either percutaneously or transthoracically, provide valuable information regarding cardiac function, intravascular volume, and afterload in the immediate postoperative period. Left atrial catheters are placed at the junction of the left atria and upper pulmonary vein, and pulmonary catheters are placed in the main pulmonary artery.9 The surgeon places transthoracic lines in the operating room based on protocol, the child’s physiology, and anticipated postoperative course. Right-sided lines may be used for infusions in the absence of other central lines and any residual right-to-left shunt. Left-sided transthoracic lines are not used routinely to infuse fluids or medications due to increased risk of introducing air or particulate matter emboli into the arterial circulation.

549

If the child has had obstruction to pulmonary blood flow, as in tetralogy of Fallot or pulmonic stenosis, the ICU nurse can anticipate a right-sided pressure line to assess preload and adequacy of right ventricular function. Conversely, with left-sided obstructive lesions, as with aortic stenosis and hypoplastic left heart syndrome, the ICU nurse can anticipate a left atrial line to assess mitral valve and left ventricular function after repair. Chest tubes generally remain in place until transthoracic lines are removed, due to potential bleeding after catheter removal. Arterial lines are utilized in the postoperative period for direct blood pressure monitoring and easy blood gas sampling. Common sites for arterial lines in children include the radial, femoral, and umbilical arteries. Left radial arterial lines are not used for infants undergoing subclavian flap repair for coarctation of the aorta, due to the surgical repair. Arterial blood pressures are correlated with noninvasive blood pressure monitoring whenever there is a question regarding the accuracy of the arterial line. A poor waveform on the monitor or the inability to withdraw blood from the catheter may give false recordings. The ICU nurse troubleshoots the monitoring issues to determine accurate patient data. Nonfunctioning arterial lines are rewired, replaced, or removed. Depending on ICU protocols, umbilical artery catheters are removed before initiating feeding, to ensure stable gastrointestinal perfusion. Central venous pressures are measured and recorded in the postoperative period. Common cannulation sites include internal and external jugular veins, femoral veins, and umbilical veins. Central venous lines often have several lumens that allow for the administration of multiple medications and fluids while monitoring venous pressures. Central venous pressure readings provide valuable information regarding intravascular volume and right ventricular compliance. Careful assembly of the transducers, tubing, and stopcocks is essential to prevent contamination and incomplete priming of the tubing resulting in entrapped air. Air within the closed system will alter the accuracy of the monitoring system and may result in an embolic event. Ensuring that precise information is obtained from the transducers depends on the accuracy of leveling and calibrating the system. The ICU nurse routinely calibrates and levels the transducers at change of shift and after a change in the patient’s position. Arrhythmias After open-heart surgery, all patients have temporary pacing wires, which were placed in the operating room. Both atrial and ventricular pacing wires are placed to allow for atrioventricular (AV) sequential pacing if needed. Ideally, the wires are tested in the operating room. The ICU nurse should be knowledgeable about the temporary pacing equipment and be able to troubleshoot problems. Any child with documented or high probability of a conduction disturbance is automatically connected to the temporary pacemaker. Dysrhythmias in the immediate postoperative period may have a significant impact on cardiac output due to loss of atrioventricular synchrony (junctional ectopic tachycardia, heart block) or inadequate filling time (supraventricular tachycardia). These dysrhythmias may result from electrolyte imbalances, intracardiac monitoring lines, tissue swelling, or surgical injury to the conduction system. Less commonly, they result from congenital abnormalities of the conduction system associated with structural defects and myocardial disease secondary to poor postoperative perfusion.17 The most

550

PART THREE

EQUIPMENT AND TECHNIQUES

common types of difficult rhythm problems after open-heart surgery include supraventricular tachycardia (SVT), junctional ectopic tachycardia (JET), and atrioventricular block. SVT usually occurs as junctional ectopic tachycardia (JET), which can produce heart rates in infants in excess of 180 (and as high as 240) beats per minute. Suspicion for JET should be entertained whenever an infant exhibits this degree of tachycardia. JET is particularly frequent after repair of tetralogy of Fallot and repair of atrioventricular septal defects, and extreme tachycardia following these procedures should raise concern for JET. The diagnosis is often easy to make by looking at the tracing of the atrial lines and observing the presence of cannon A waves—which would not be present in sinus tachycardia. A cardiologist can assist in the diagnosis by evaluating an atrial electrogram, which can be obtained from the atrial pacing leads. If the patient is hemodynamically stable, treatment can be provided by gently cooling the patient (with an ambient temperature blanket) to 35 degrees centigrade, which will slow the junctional rate and allow atrial pacing at a slightly faster rate to restore atrioventricular synchrony. If the patient is hemodynamically unstable, cooling may increase afterload and exacerbate the hemodynamic instability. In these cases, pharmacologic intervention (currently, amiodarone is the recommended agent) may be necessary. In extreme cases, the infant may need mechanical circulatory assist (ECMO) to support the hemodynamics until the heart rate stabilizes. JET is usually selflimited and will resolve in 1 to 3 days. Surgically induced permanent atrioventricular block occurs in up to 3% of postoperative patients. Surgical repairs with the highest risk of trauma to the atrioventricular node include resection of subaortic stenosis, aortic valve replacement procedures, VSD closure especially in patients with atrioventricular discordance (L-TGA), mitral valve replacement and repair of atrioventricular septal defects. Surgical heart block is usually observed in the operating room, however, it may not present until the postoperative period.17 Patients require the use of a temporary pacemaker until normal sinus rhythm returns or a permanent pacemaker is placed. The recovery waiting time before proceeding to permanent pacemaker is broadly accepted as 7 to 14 days. Children who have recovery from complete heart block are at risk for late atrioventricular conduction abnormalities.35 Excessive Bleeding and Cardiac Tamponade After surgery, chest tubes are placed in the pleural and mediastinal spaces. Chest tubes facilitate drainage of blood and serous fluid and are assessed frequently for patency and amount of drainage. Heparin used during cardiopulmonary bypass is partially reversed with protamine in the operating room. The process of returning to a noncoagulopathic state may take longer than 8 hours, particularly in the neonate with immature liver function. Drainage in excess of 5mL/kg/hour is reported to the surgical team. Drainage from the chest tubes typically changes from bloody to serosanguinous in the first few hours after surgery. Once the chest drainage has diminished, the chest tubes are removed. A sudden cessation of drainage from previously draining chest tubes coupled with decreasing systemic perfusion and rising right or left atrial (RA, LA) pressures is regarded with a high degree of suspicion for cardiac tamponade. Blocked chest tubes prevent adequate drainage of fluid from

the pericardial space. Cardiac output is impaired due to fluid accumulation around the heart, which interferes with diastolic filling and systolic ejection. Signs of cardiac tamponade include hypotension, tachycardia, narrowing pulse pressure, and elevated right atrial and left atrial filling pressures. Pulses paradoxus, a fall in systolic blood pressure by 8 to 10 mm Hg during inspiration, is a classic sign but may be difficult to appreciate in a child with tachycardia and hypotension. Other signs may include muffled heart sounds and decreased voltage on the surface electrocardiogram (ECG). Echocardiography in the ICU can demonstrate whether or not there is substantial fluid around the heart and can even, in some cases, show compression of cardiac chambers by the fluid—which would be very suggestive of tamponade. Clearing occluded chest tubes or opening the chest will rapidly restore hemodynamic stability. Extracorporeal Membrane Oxygenation When a child’s cardiac function is inadequate to sustain sufficient cardiac output after surgery, extracorporeal membrane oxygenation (ECMO) or ventricular assist device may be required. If unable to wean from cardiopulmonary bypass in the operating room, the child may be placed on mechanical assistance in the operating room or during the first hours after surgery in the ICU. Indications for the use of ECMO after cardiac surgery include poor systemic perfusion despite high-dose vasoactive infusions, hypotension, cardiac index less than 2.0 L/m2/minute for 3 hours, base deficit greater than 5 mEq/L for 3 hours, or oliguria less than 0.5 mL/kg/hour.6 The bedside ICU nurse plays a crucial role in the early identification and communication of alarming hemodynamic trends. Delayed Sternal Closure Complicated surgical procedures associated with long cardiopulmonary bypass times may result in myocardial swelling that prohibits immediate sternal closure. The child’s sternum is left open to facilitate maximal myocardial function. When the sternum is left open, a surgical material is sewn to the skin and creates a continuous barrier with the skin. The risk of infection is increased and sterile technique must be followed for procedures done near the surgical incision. Caution is taken to avoid any pressure to the open chest. A sign placed at the child’s bedside warning that the sternum is open helps inform all members of the health care team. In the event of cardiac arrest, the eshmark can be removed to facilitate internal cardiac massage using sterile gloves. As long as the sternum is open, the child remains intubated and ventilated and either heavily sedated or paralyzed and sedated with vecuronium (0.1 mg/kg/dose) and continuous fentanyl infusion (1 to 2 mcg/kg/hour) to prevent movement. The surgeon will attempt sternal closure as soon as the child is hemodynamically stable and has achieved successful diuresis. This is commonly performed in the ICU and does not always require a return transport to the operating room. The anesthesiologist delivers adequate pain medication, monitors vital signs and arterial blood gases, and adjusts the ventilator to maintain adequate oxygenation throughout the procedure. Closing the sternum may create changes in the patient’s ventilatory management due to alteration in pulmonary compliance.22 When sternal closure results in elevation of the central venous pressure (CVP), it is sometimes necessary to leave the chest open for a short while longer to allow for more diuresis. Closing the sternum in these circumstances can inhibit fluid mobilization and diuresis. It is

Chapter 22—Nursing Care of the Child with Congenital Heart Disease

helpful for the nursing staff to point out hemodynamic changes (such as elevation in the CVP or decreases in the blood pressure) to the surgeon when the sternum is closed in the ICU so that these alterations can be included in the decision-making process regarding whether to proceed with the procedure. After successful sternal closure, plans focus on weaning ventilatory support, extubating, and monitoring for signs of sternal wound infection.

551

muscle mass, therefore making it less of a postoperative problem in older children. Hypocalcemia may also result from multiple blood transfusions. Hypomagnesia may occur after bypass and intense diuresis. Cardiovascular effects of decreased magnesium include depressed myocardial contractility, arrhythmias, and increased sensitivity to digoxin. Low magnesium levels have been shown to be associated with an increased incidence of junctional ectopic tachycardia in the immediate postoperative period.8

Respiratory Status and Pleural Effusions Many postoperative cardiovascular patients remain intubated and mechanically ventilated after surgery. Meticulous attention to maintaining airway patency is essential to prevent hypoxemia. A subset of postoperative patients poses a significant challenge in maintaining adequate oxygenation, normal pulmonary artery pressures, and systemic perfusion during routine endotracheal suctioning. Children with elevated pulmonary artery pressures are at risk for developing an acute pulmonary hypertensive crisis during endotracheal tube (ETT) suctioning if adequate oxygenation is not maintained. Suctioning strategies for children at risk for developing pulmonary hypertension should include sedation, hyperoxygenation before suctioning, and suctioning conducted by two care providers to minimize time off the ventilator. Pleural effusions may interfere with weaning from ventilatory support or necessitate reintubation in the previously extubated child. Small to moderate pleural effusions can be treated with aggressive diuresis; however, large effusions, and especially large effusions that result in hemodynamic changes, require drainage. Children with elevated venous pressures are at higher risk for developing pleural effusions. Serial respiratory assessments and chest x-rays are needed to monitor the size of pleural effusions and response to therapy. Chest tubes are commonly removed within 24 to 48 hours after surgery. It is essential to provide adequate pain management before chest tube removal. The use of narcotics, nonnarcotic analgesia, and distraction techniques are efficacious and synergistic. After chest tube removal, the ICU nurse assesses the child’s respiratory status and effort. Potential problems associated with removal of chest tubes include pneumothorax and lung collapse. Chest tube sutures are commonly left in situ for 5 to 7 days and are often removed at the first follow-up visit after the site has adequately healed. Electrolyte Imbalances Normal levels of sodium, potassium, calcium, and magnesium are essential for excitable membrane function and effective myocardial contraction. A full serum chemistry blood panel including magnesium should be obtained with the postoperative admission blood work. Hypokalemia resulting from an increase in intravascular water, treatment of acidosis, and use of diuretic therapy may result in conduction and rhythm disturbances. Hyperkalemia resulting from impaired renal function (acute tubular necrosis) or administering excessive doses of potassium chloride is also detrimental to the cardiac system. Calcium is essential for adequate cardiac contractility. A decreased ionized calcium level has been demonstrated after CPB. In young infants, hypocalcemia is more likely to develop due to the lack of adequate calcium reserves in the sarcoplasmic reticulum. Calcium stores increase with age and

Altered Neurologic Status There is potential for serious neurologic complications after CPB. The ICU nurse performs a comprehensive neurologic examination soon after admission to assess pupillary response and movement of all extremities. As the child emerges from anesthesia, the neurologic examination includes the child’s responses. Cerebral protection during cardiopulmonary bypass has become very sophisticated during the past decade resulting in few adverse neurologic events.12 Repair of coarctation of the aorta requires special attention to the movement of the lower extremities due to the risk of interrupted perfusion to the spinal cord subsequent to clamping of the aorta. An extremely small percentage (0.4%, or 1/250) of these patients can have lower extremity paralysis following surgery and although this cannot be altered by postoperative ICU care, recognition of this possibility (or more often, elimination of this as a possibility by observing movement in the lower extremities as the child recovers) provides important information to the other members of the health care team as well as to anxious family members. Infants and children undergoing surgery that requires circulatory arrest warrant extra attention to monitor their neurologic status. The presence of seizures in the postoperative period following neonatal CPB can be a harbinger of brain injury, and should be rapidly investigated and treated with anticonvulsant therapy. The occurrence of major, hemispheric stroke is uncommon following infant cardiac surgery, but should be considered if the child demonstrates major focal findings suggestive of this diagnosis. Infection Broad-spectrum antibiotics are started intraoperatively to prevent infection. Antibiotics are continued during the immediate ICU recovery phase until central lines and drainage tubes are removed. Early signs of infection including fever, elevated white blood cell count, thrombocytopenia, elevated CRP, and wound drainage warrant careful monitoring and cultures. Good hand washing and timely removal of central monitoring lines and tubes decrease the incidence of infection. Acute Renal Failure Impaired renal function after cardiac surgery results in decreased urine output, increased water weight gain, and elevated serum creatinine, blood urea nitrogen, and potassium values. Urine output is closely monitored during the immediate postoperative period with expected urine output equal to 1 mL/kg/hour. Decreased urine output associated with low filling pressures (left atrial and central venous pressures) is challenged with 5 to 10 mL/kg fluid boluses. Decreased urine

552

PART THREE

EQUIPMENT AND TECHNIQUES

output associated with normal or elevated filling pressures is treated with intravenous diuretics. Because excessive fluid overload delays extubation, increases the risk of infection, and prolongs the ICU recovery time, more aggressive therapy including peritoneal dialysis is pursued. Critically ill newborns and infants undergoing complex surgery may have temporary peritoneal dialysis catheters placed in the OR during surgery; if not used during the first 24 hours, they are promptly removed. Accurate intake and output records are calculated and children are weighed daily to assess weight gain or loss compared to their preoperative weight. Diuretics are used until the child returns to his or her baseline weight. Pain Management and Sedation Pediatric pain teams assist in the management of pain and sedation after surgery. Infants and children who will remain intubated overnight receive a combination of intravenous narcotics (fentanyl, morphine, hydromorphone) and sedatives (midazolam hydrochloride, lorazepam) to keep them comfortable. Sedation medicines are held before extubation to facilitate wakefulness and adequate respiratory effort. To gain cooperation and alleviate the pain and discomfort associated with chest tube, transthoracic line, and pacemaker wire removal, patients are treated with fentanyl (1 to 2 mcg/kg/dose). Pain medications are titrated to attain an adequate level of pain management and alertness with acceptable hemodynamic parameters. Infants and children who have required extensive use of narcotics and benzodiazepines may experience withdrawal if medications are abruptly discontinued. Signs and symptoms include jitteriness, insomnia, seizures, diarrhea, diaphoresis, agitation, nausea and vomiting, tachycardia, and hypertension. A slow wean over 5 to 10 days by decreasing the total daily dose by 10% to 20% and increasing the time intervals between doses will alleviate trouble with withdrawal behaviors.

Transfer to the General Care Unit Transfer of the child from the ICU to the general pediatric care unit is a milestone in the child’s physical recovery from surgery. Older children undergoing relatively simple procedures spend 1 night in the ICU. Most monitoring lines and drainage tubes are removed the morning after surgery and the child encouraged to ambulate with assistance. Transfer to an intermediate care unit or less intensive care setting is appropriate. Neonates and infants undergoing complex procedures typically have longer ICU stays. Transfer orders include instructions to monitor vital signs every 4 hours, wean supplemental oxygen, record intake and output measurements and daily weights, advance the diet as tolerated, and encourage activity out of bed.

The Nurse’s Role: Preparation for Discharge Home Discharge plans and needs depend on the age of the child, the congenital heart defect, and surgical procedure, as well as consideration of any coexisting medical problems.

Routine discharge instructions include information about bathing, activity restrictions, diet, medications, suture line care, and follow-up appointments. Children can usually resume their usual bathing or showering routine 1 week after surgery. Newborns are generally ready for tub bathing after the umbilical cord has fallen off. If there is delayed wound-healing, parents are instructed to sponge-bathe the child until the wound is healed. Babies and young children generally do not need formal activity restrictions. They move around freely and rest when they feel tired or hurt. Caregivers are instructed not to pick babies up by grabbing them under the arms but rather to provide support under the buttocks and the back of the baby’s head when lifting. Many infants and toddlers are ready to return to a day care setting about 2 to 3 weeks after surgery. School-age children and adolescents need more structured information. Median sternotomy incisions require 6 to 8 weeks for complete bone healing. During this time, children are instructed to avoid strenuous activities including bike riding, roller-blading, skateboarding, diving, climbing, weightlifting, and any activity likely to result in chest wall trauma. They are usually ready to return to school starting with half days and gradually working up to full days about 3 weeks after surgery. They should not participate in sports or physical education classes for 6 to 8 weeks. With these general guidelines, parents work with personnel in the school system to institute home schooling or tutoring to keep the children current with their school activities. A small group of children who require a lengthier recovery period will need individualized activity restrictions and guidelines on when to return to school. Diet Before discharge, children need to tolerate a sufficient amount of oral fluids. Many children do not regain their “usual” appetite for 1 to 2 weeks after surgery. Narcotics can alter wakefulness and interest in eating as well as interfere with the gastrointestinal system, causing nausea, vomiting, and constipation. A balance between pain control and comfort needs to be established before most children are interested in eating. For children who are picky eaters, families are encouraged to bring in food and treats from home. Most children will not have dietary restrictions. Pediatric nutritionists follow and meet with children and families who require special dietary instructions. Children taking warfarin (Coumadin) are given information regarding foods high or low in vitamin K that interact with bloodthinning medication. Children who have been treated for a chylothorax will be instructed on a low- or no-fat diet to prevent the reaccumulation of pleural fluid. Fatty foods are slowly reintroduced into the diet while monitoring serial chest x-rays to observe for pleural effusions. Critically ill newborns and infants who have had a prolonged or difficult postoperative period may have trouble nipple feeding. Newborns denied oral feeds for weeks after birth need time and encouragement to learn to coordinate their suck and swallow before they are successful oral feeders. These infants may need temporary supplemental or complete nasogastric tube feeding and high calorie formula to demonstrate weight gain. Because high calorie formula may lead to

Chapter 22—Nursing Care of the Child with Congenital Heart Disease

feeding intolerance including emesis and/or diarrhea, infants are observed for 24 to 48 hours on specialty formula before discharge. Increased calorie formula other than 24 calories per ounce is not commercially available; therefore the family is given the recipe to prepare the formula at home. Pediatric nutritionists and occupational therapists work with the team to develop a feeding regimen that may include a combination of bottle-feeding and tube feeding. A typical regimen may include four bolus feeds during the day with orders to allow the baby to attempt bottle-feeding for 15 to 20 minutes and then to gavage feed the remainder of the feeding. At nighttime, the baby may receive continuous nasogastric feeds for 8 to 10 hours. As the baby recovers from surgery and with continued help from occupational therapy, the baby is eventually weaned off tube feedings. The caloric density of the formula is decreased and the volume of feeds increased as the baby makes appropriate weight gain. Injury to the recurrent laryngeal nerve during surgery resulting in temporary vocal cord paresis puts the infant at risk for aspiration with oral feeds. Any infant with a hoarse or inaudible cry, coughing, or oxygen desaturations during nipple feeding is evaluated before discharge by an otolaryngologist. If the evaluation demonstrates decreased vocal cord movement, the infant is either reassessed with thickened oral feeds or started on nasogastric tube feeds until recovery occurs. Medications In the immediate postoperative period, children are given intravenous (IV) narcotics for pain management. As recovery progresses, the IV medication is converted to an oral form (liquid or pill). By the time of discharge, many children have transitioned to acetaminophen or ibuprofen for pain control. Older children and adolescents may need extra days of oral narcotics such as oxycodone or codeine. Diuretics are used in the postoperative period to remove excess fluid. Many children are discharged home on daily or twice-daily diuretics (furosemide [Lasix], spironolactone [Aldactone], chlorothiazide [Diuril]). Diuretics are not given immediately before bedtime to avoid bedwetting accidents or frequent trips to the bathroom throughout the night. Other medications that may be needed after surgery include digoxin, ACE (angiotensin converting enzyme) inhibitors, beta-blockers, anticoagulants, and antiarrhythmia agents. Attention is given to the scheduling of medications. While in the hospital a 24-hour awake caregiver is routine. A home medication schedule should allow the parent and child to sleep through the night. When feasible, children should be on daily or twice-daily medication dosing so they do not need to take medication to school or day care. Parents who need to give multiple medications benefit from a printed schedule to post in a convenient area in the house (refrigerator, bathroom) to remind them when and what medications to give to their child. Oxygen Before discharge, most children are weaned off supplemental oxygen. A small group of children require oxygen beyond the immediate postoperative period. If the child has met all other discharge criteria except for weaning to room air with

553

acceptable oxygen saturations, arrangements are made for home oxygen therapy. A portable oxygen unit is delivered to the hospital to accompany the child home and a larger oxygen unit setup in the home. Depending on the situation, some children are sent home on a constant level of oxygen and are weaned off oxygen during a routine clinic visit 1 to 2 weeks after discharge. For the more fragile child requiring home oxygen, a pulse oximeter is used in the home to regulate the amount of oxygen needed to maintain a target saturation. Respiratory therapists and pediatric nurses providing home care assist the family in the use of the home oxygen system. Wound Care In most cases, postoperative dressings are removed the second day after surgery. Most incisions require little care. While in the hospital, the wound is painted daily with a povidoneiodine liquid or covered with a topical skin adhesive. For the wound with minimal drainage or partial separation, care consists of twice-daily cleaning with sterile saline solution and covering with a dry sterile gauze dressing. For significant wound dehiscence or superficial infection, the area may require twice-daily wet-to-dry dressing changes and oral antibiotics. Treatment for extensive wound infection or dehiscence requires IV antibiotics, surgical debridement, and closure in the operating room. Most incisional sutures are absorbable and do not require removal. Sternal wires rarely create problems necessitating removal. Chest tube stitches are ready for removal 5 to 7 days after chest tube removal. Home Care With shorter hospital stays, home care nurses are vital to the ongoing recovery process. They assess the child and reinforce teaching started in the hospital. Skilled pediatric home care nurses monitor the child’s cardiopulmonary status, measure oxygen saturations, check weight gain, review medications, and watch for signs of potential postoperative complications. Home care nurses help the family to problem-solve issues in setting up the house to meet the needs of the recovering child. They communicate their findings either to the primary caregiver or the pediatric cardiology team as indicated in the home care discharge orders. At the time of discharge, family members are instructed to monitor their child for signs of potential complications. Low-grade fevers (less than 101° F) can be treated with acetaminophen or ibuprofen. A reoccurring low-grade fever or temperature higher than 101° F requires physician screening for possible signs of infection. Any redness, swelling, drainage, or opening of the wound should also prompt the parent to call the physician. Other general indications to notify a physician may include persistent vomiting, nausea, diarrhea, belly pain, difficulty breathing, or irritability. Families and pediatricians are instructed to defer routine immunizations to 4 to 6 weeks after cardiac surgery. On the day of discharge, an appointment is made for the child to be seen by the primary caregiver within 2 to 3 days after discharge. A telephone report is given to the primary care physician and/or a copy of the hospital discharge summary is

554

PART THREE

EQUIPMENT AND TECHNIQUES

faxed to the office. An appointment is made for the child to be seen in the pediatric cardiology clinic 10 to 14 days or sooner after discharge, depending on individual needs. For infants and young children with ongoing medical needs beyond the typical postoperative phase, an early intervention program may be beneficial to assist with their recovery and development.

The Pediatric Nurse Practitioner’s Role in the Care of the Child with Congenital Heart Disease Nursing is vital to the care of the child with congenital heart defect; there are multiple roles and responsibilities to be fulfilled. The educational preparation of the nurse intervening varies between institutions. The most critical factor is that the institution considers the unique talents of the nurse and develops a team so that the members complement each other in providing comprehensive care. Depending on the institution and the size of the pediatric cardiac program, the roles and responsibilities of pediatric cardiac nurses vary. The pediatric nurse practitioner (PNP) is an essential member of the inpatient team. She meets with the child and family during the initial phase of diagnosis and assessment and facilitates the scheduling of tests (ECG, echocardiogram, cardiac catheterization, magnetic resonance imaging [MRI]). With the pediatric cardiologist and cardiac surgeon, the PNP prepares and educates the family and health care team for the upcoming surgery. Since most children are admitted to the hospital on the same day as their surgery, the PNP may see the child a few days before surgery to evaluate for any intercurrent illness, to perform the history and physical and to provide eating and drinking instructions to the parents. On the day of surgery, the PNP writes the postoperative orders, communicates with the admitting ICU nurse and physician team, and monitors the child’s admission from the OR to the ICU. During the child’s ICU stay, the PNP monitors the child’s progress, identifies potential problems, and prepares for transfer to the general care unit. Once the child has been transferred out of the ICU, the PNP works with the cardiology team to ready the child and family for discharge. Under the guidance of the PNP, the bedside nurse teaches the family about home care needs and reviews discharge instructions and medications. The PNP communicates with the primary care physician, arranges for home care nursing, and orders medical equipment as needed. In addition to daily clinical rounds, the PNP conducts informal bedside and formal classroom/conference teaching, mentors graduate nursing students, and participates in the nursing department committee activities.

PSYCHOSOCIAL IMPACT OF CONGENITAL HEART DISEASE IN THE CHILD Initial Presentation and Diagnosis The diagnosis of congenital heart disease imposes significant changes and adjustments to family life.1 Parental expectations and hopes for a healthy child are altered by the presence of heart disease. The severity of illness, the timing of the diagnosis, the presentation leading to the diagnosis, previous experiences with illness, and individual and family adaptation

skills affect the family’s responses to the child. The nurse plays an important role in the family’s adaptation through each stage of the child’s care by providing education, educational material, and support dependent on the family’s needs. Advances in medical technology have increased the prenatal diagnosis of CHD. If a prenatal diagnosis is made describing a critical congenital heart defect, the pregnancy is closely monitored and plans made to deliver at an institution where appropriate support is available for the baby. Maternal anxiety is typically increased when the diagnosis of CHD is made by fetal echocardiography.28 Support and information provided to the parents is crucial at this point. If not diagnosed prenatally, serious CHD is usually detected during the first few weeks to months of life. Presentation in the neonatal period varies greatly. Symptoms that may lead to diagnosis include tachypnea with feeding intolerance, a murmur noted on a routine well-baby examination, cyanosis, and/or complete cardiovascular collapse. These differences in symptoms may influence the severity of the child’s physiologic state but have little influence on parental reactions to the diagnosis. Three issues typically confront the family of an ill infant: (1) fear of loss and the unknown, (2) grief, and (3) guilt. Each family member individually prepares for what is to come. Frequently, parents do not communicate their feelings with each other and may need help acknowledging and communicating their feelings. During the initial workup, denial is the strongest coping mechanism. The final diagnosis of the child’s heart defect presents a new reality and summons the family’s previous coping mechanisms. At this time, parents experience grief for the loss of their expected normal child. This mourning is necessary for them to accept the imperfect child. The family will cope only as well as each of its members do. Each family member needs to express individual feelings before the family unit is able to cope. Mothers often express guilt as an overwhelming emotion, whereas fathers frequently suffer loss of self-esteem over the birth of an imperfect child.11 The family’s ability to cope at this time is related to other factors, including the severity of illness; the suddenness of diagnosis and treatment; the meaning of the diagnosis to each individual member; the effect of the diagnosis on the family, including financial and lifestyle changes; and the presence and effect of support systems. Staff interventions that aid coping at the time of diagnosis include provision of honest information about the child’s condition and plan of care, establishment of support systems, and permission to establish and maintain the parenting role. At this time, parents typically seek general knowledge about CHD and specific details about their child with CHD. General questions parents need to have answered, whether they verbalize the questions or are afraid to ask, include: What causes CHD? What did I do wrong? What is our risk for having another child with CHD? Will our child survive? Specific questions parents may ask about their child include: What medical care will be provided to my child, including the need for doctor’s appointments, medications, and additional testing? What signs do I look for in my child at home? Will my child be restricted in activities? Does my child need surgery? What can we expect now and in the future for my child? Answers to these questions need to be reiterated frequently to provide reassurance to family members. Another potential source of parental stress is the financial burden resulting from hospitalization, future health care costs, missed work days,

Chapter 22—Nursing Care of the Child with Congenital Heart Disease

and potential change in day care needs. Health insurance coverage should be examined to ensure optimal coverage. After diagnosis, anger is a common parental response. This anger may be expressed toward God for letting this happen to their child, society for creating an imperfect world, the medical staff for making the diagnosis, themselves for giving birth to an impaired child, and the child for not being perfect. Guilt often accompanies this anger. Interventions by the health care team need to focus on the implications of these feelings. Time spent understanding the parents’ perceptions of the child’s illness is imperative for proper family functioning. Successful coping is contingent on parents’ beliefs of what is wrong and the resultant consequences of their perceived diagnosis. Open, honest communication about the child’s condition needs to be repeated to allow absorption and acceptance of facts in the face of stress. Parent groups can be an additional source of support for families.4,11,18 Parents who share similar experiences and solutions are able to help others. These groups allow family members to validate their thoughts and feelings in attempts to adjust to changes resulting from caring for their child with CHD. Parent support groups aid families through individual meetings during particularly stressful times. A parent is called on to help families at the time of a child’s diagnosis, before diagnostic testing, before surgical treatment, at the time of discharge from the hospital, and during times of need after hospitalization. The supporting parents, drawing on their own experiences, are sensitive to other families faced with similar, familiar concerns. In addition to individual meetings with families, group support meetings provide ongoing discussion of issues that confront families over time. Parents find these meetings worthwhile at significant times in the child’s life. Meetings usually concentrate on life experiences rather than focus on medical details. Typical discussions concentrate on children playing with other children, starting school, and engaging in sport activities; sibling reactions; and acceptance by family members, teachers, friends, and neighbors. By participating in these groups, parents benefit from receiving guidance and support in addition to the rewards gained by helping others.23 If CHD is not detected during early childhood, a preschool or pre-sports physical examination is another period when it is identified. Typically, cardiac lesions diagnosed at this time are usually not life threatening. However, CHD diagnosed at this time needs to be evaluated and treated in order to maintain good future health. Since the age of the child at the time of elective cardiac surgery or catheter intervention does not influence the course of psychological distress of parents or the styles of coping used by the parents, nursing interventions should be aimed at education and support of the child and family.30

Medical-Surgical Plan After diagnosis, a strategy is proposed by a multidisciplinary group, including pediatric cardiac surgeons, pediatric cardiologists, anesthesiologists, nurses, and social workers outlining the medical and surgical care plan. The decision to perform surgery presents another crisis point for the child and family. A host of emotions accompany this time, including relief that the decision is made, fear of the unknown, anxiety over the outcome of surgery, and anticipation of changes in family life after surgery. At this time an enormous amount of information

555

is presented to the family. Despite efforts to answer all parental questions, there are topics that parents find difficult to discuss.5 The staff must be aware of these issues and willing to explore them with family members. Surgery on a child’s heart inflicts fear and apprehension in family members.14 Parents of a critically ill infant will be absorbed with thoughts of their child’s survival,24 whereas parents of an asymptomatic, healthy child may actually have a more difficult time accepting the diagnosis and surgical plan. Nursing interventions at this time need to focus on each family individually. The team should take cues from the family regarding the timing for preparation and the depth of information given at this time. Honest information about what to expect during and after surgery should be the central theme of interventions.

Developmental Needs of Children The developmental characteristics of children must be taken into account by staff members as they respond to their physical needs (Table 22-6).3,21 The essential task during infancy involves the development of a trusting relationship,21 and the infant and parents must participate in the bonding process. Denial and disappointment over the birth of a child with a congenital defect may affect this process. Infants with CHD may be less securely attached to their mothers than those without a major health problem.18 Therefore efforts to enhance mother-child bonding will influence the infant’s relationship with the mother. Fathers are essential to the child’s sense of trust and must be included in the process of care and recovery. Staff should encourage parents to interact in the care of their infant by wiping away tears, talking, singing, soothing, rocking, changing diapers, or holding the baby. Appropriate sensory experiences are fulfilled when familiar toys are placed within the infant’s view or reach, musical toys are used, and the child is touched or cuddled. Noxious stimuli should be controlled if possible. Sufficient lighting in the ICU allows adequate observation and assessment of the child; however, glaring lights should be avoided. Nursing care should be planned to provide uninterrupted sleep periods; a day-night sequence is useful. Reduction of loud noises as much as possible fosters the short sleep cycles in the ICU. Quiet, gentle, loving care at the bedside should focus on the child. The staff should avoid conversations about their personal or social lives, work schedules, or work operations at the child’s bedside. Toddlers’ developmental needs include autonomy, exploration, and security.3 During times of stress, they demonstrate signs of regression. Their relationship with parents is intense; separation anxiety occurs in their absence. Nursing interventions for toddlers in the ICU include promotion of the parentchild relationship. Parents are encouraged to visit often and participate in the child’s care, including bathing, holding, and soothing during and after painful procedures. During the parents’ absence, family pictures and tape recordings maintain the child’s family contact. Routine care delivered by consistent caregivers adds to the toddler’s sense of security. Choices should not be offered if there are none. The child should be encouraged to participate in care activities, and allowed to express fear and anger by crying during painful procedures. Children should not be told that “it does not hurt,” because it usually does; that “it is okay,” because to them it is not; and “just once” because, most often, this is not the case.

556

PART THREE

Table 22-6

EQUIPMENT AND TECHNIQUES

Interventions to Care for Developmental Needs of Hospitalized Children

Age

Developmental Task

Effects of Hospitalization

Nursing Interventions

Infant

Develop sense of trust

Separation from parents is stressful. Hospital’s strange environment, including sights, sounds, and smells, produces anxiety. Disruption of routines results in distrust.

Toddler

Develop autonomy

Frightened by strange environment Perceives illness and hospitalization as punishment for bad behavior

Preschool age

Develop initiative and autonomy

Difficulty separating reality from fantasy Fears unknown Frightened of bodily injury Threatened by procedures

School-age

Develop sense of industry and accomplishment

Loss of control produces anxiety. Concerned with privacy and modesty Fears of bodily mutilation and injury are prevalent.

Adolescent

Develop sense of identity

Fears loss of control Anxious about loss of identity, separation from peer group Apprehensive about changes in body image

Provide consistent caregivers. Decrease separation from parents. Tape family pictures to child’s crib. Provide comforting, familiar environment, including blankets and toys from home. Promote uninterrupted periods of rest while avoiding overstimulation by performing all tasks at one time. Minimize separation from parents. Involve family in procedures. Provide consistent caregivers to decrease number of people toddler must adapt to, thereby increasing child’s sense of trust. Allow as much movement as possible, using loose restraints only if necessary. Encourage hospital play. Acknowledge child’s feelings while providing appropriate means to deal with them. Include familiar toys at bedside. Provide constant reassurance. Provide reassurance about healing and getting better. Provide appropriate choices in care. Support family if child engages in regressive behavior. Encourage hospital play for child to act out aggressions; allow child to assume role of nurse or doctor. Tell child what is going to occur. Provide time for explanations about procedures.* Repeat explanations frequently. Reduce stimuli. Provide periods of undisturbed sleep. Respect child’s privacy. Provide realistic choices that children can make, i.e., do not ask if they want blood drawn, but allow them to choose from which finger or site to have blood drawn. Provide privacy to teenager. With teen’s approval, facilitate contact with peers. Involve adolescent in decision making. Verify understanding of perceptions of illness, procedures, and hospitalization.† Provide time for favorite activities.

*Purcell C: Preparation of school-age children and their parents for intensive care following cardiac surgery. Intensive Crit Care Nurs 6:218–225, 1996. †Velldtman GR, Matley SL, Kendall L, et al: Illness understanding in children and adolescents with heart disease. Heart 84:395–397, 2000.

Preschool children are involved with discovery and initiative.26 They are egocentric, seeing the world from their viewpoint. The preschool child interprets events in response to good or bad behavior; illness and surgery are therefore seen as punishments.21 Staff should reassure the child by saying “this is not your fault.” Strategies to promote preschoolers’ sense of psychological well-being include preparing them for procedures shortly before carrying them out; explaining who you are, what you are going to do, what the purpose of the procedure is, and what it will feel like, and providing opportunities for them to make choices. Engaging children in therapeutic play allows expressions of aggression and fear.26 Preschoolers should be given permission to scream or cry during painful procedures, and again be assured that what is happening is not their fault. School-age children are achieving a sense of industry.3 The socialization process associated with attending school aids in this accomplishment. This is an age when peer approval and acceptance is essential. Separation from family members is easier.21 Interventions guided toward school-age children in the ICU include encouragement of visitors, provision of

privacy, and honest explanations regarding procedures, including what will be done, the effects on body parts, and associated pain. The school-age child is inquisitive about the environment, and should if possible be protected from scenes involving other patients. The major developmental task of adolescence is to develop a sense of identity.31 The importance of body image to the teenager contributes to self-conscious behavior related to appearance, and the imperfections imposed by CHD and cardiac surgical repair. Relationships with and acceptance by peers are critical. Privacy is important to the teenager and should be provided in the ICU. Honest communication regarding the physical consequences of surgery, a forum to express fears, and contact with peers during the hospitalization will aid the adolescent patient in recovery after surgery for repair of CHD.

FAMILY-CENTERED CARE Medical and surgical treatments of CHD have been addressed throughout this textbook. The child with CHD must be viewed

Chapter 22—Nursing Care of the Child with Congenital Heart Disease

as an individual as well as a member of a family unit, whose illness affects all members. Knowledgeable, trusting, calm, and secure parents are the child’s best support. Therefore the care of the child must extend to include care of all family members. In addition to delivering high technological care, the ICU staff must understand and respond to the psychological needs of the child and family, and deliver care to meet those needs.7 Involving families in the care of children is the underpinning of quality pediatric health care.27 Parents’ participation in the postoperative care of the child in the ICU is an essential part of recovery. A tour of the ICU before the child’s admission introduces the family to the environment. It is helpful for the child and parents to see the ICU milieu before they experience these sights with the child in the ICU bed. The nurse conducting the tour should take cues from the family and offer information that they want to hear. Explanations about why the child will be in the ICU and what will happen during this hospital stay are the highlights of this preoperative education. The family should be introduced to familiar ICU sights and sounds, and reassured that a nurse will be present at all times and will provide explanations about the care delivered. Despite preoperative preparation, the family experiences a wide array of emotions during their first visit to their child in the ICU. A combination of emotions are present and often displayed, including, but not limited to, relief, joy, anxiety, caring, distrust, hostility, and fear. This first visit should take place as soon as possible after admission, and usually can happen within the first hour after surgery. Before this first visit, the child should be clean and covered and the bedside organized. Ideally, the ICU nurse should greet the family outside the child’s room, provide a brief description of the child’s appearance, and enter the room with the family. Brief explanations of the use and purpose of each device aid parents’ adjustment to the sight of their pale, motionless, seemingly lifeless child surrounded by a maze of monitors, wires, and tubes. The family may be overwhelmed at first by the appearance of their child, but should be encouraged and assisted in touching and speaking to the child in an effort to restore their parenting roles. Parents cope with this visit by proceeding at their own pace; the nurse should respond to the family member’s reactions and encourage a short first visit. The ICU nurse plays a pivotal role in identifying and alleviating parental fears at this time by encouraging parents to ask questions and express their fears and anxieties. A liberal visiting policy for the parents is crucial. Subsequent visits become less difficult as the family becomes more familiar with the ICU environment and staff. Parents should be encouraged to visit frequently.13 However, personal needs must be considered despite the parents’ desire to stay at their child’s bedside 24 hours per day. The staff influence parental decisions through the development of a trusting and caring relationship. Parents are more willing and able to leave their child if they know they will be contacted when changes occur in their child’s condition and are encouraged to call whenever they wish.34 It is important that parents receive the staff’s approval and support in considering their own needs. The staff should encourage parents to eat, rest, shower, and talk to each other and other children during their child’s hospital stay. When the parents’ daily living needs are included

557

as part of the total orientation to the intensive care environment, the message about care of the family unit is delivered. Parental involvement in the child’s care benefits both child and parents. The extent of involvement depends on the child’s condition. A critically ill child profits from the presence of the family through emotional and physical support. Through touching, holding, talking, and reading, family members provide emotional support. Encouragement by the staff to join in these activities allows the family to take an active role in the child’s recovery. Parents may take part in their child’s physical care by bathing, dressing, and feeding him or her. Participation in these tasks maintains the parenting role in the ICU setting. Parents’ responses to their child’s stay in the ICU are influenced by communication with staff members. Honest, current, and accurate communication strengthens the relationship between family and staff. Parental adaptation to their child’s ICU admission contributes to the recovery of both child and family. Transfer of the child from the ICU to the general pediatric care unit is usually accompanied by various parental responses. Although excited and relieved that their child is well enough to leave the ICU, many families feel frightened for their child and themselves. The child now requires less intense nursing care, and the nursing, medical, and surgical teams once always near the child’s bedside are now less visible. Preparing and reassuring the child and family that these factors are positive signs will help abate parental fear and anxiety. This transition is smoother when explanations about the child’s condition, needs for care on the general care unit, and expectations for care on the pediatric floor are made. For children who had an extended ICU stay, a visit to the general care unit may ease transition from the ICU to the floor. The staff’s awareness of these characteristic responses and willingness to discuss the parents’ feelings will facilitate the transfer process. The impact of CHD on the child and family continues after surgical correction of the lesion. Adjustments must be made to accept the “new” child into the family. A second mourning period often accompanies this change. Families experience grief over the loss of a perfect child after the diagnosis of CHD. In order to accept the child with repaired CHD, family members must mourn the loss of their previously imperfect child. Difficulties with acceptance of the child after corrective surgery lead to continued overprotection of the child by family members and result in problems of psychological adjustment and adaptation. Strategies to assist parents during this time include: (1) providing information about the child’s recovery and restrictions, (2) acknowledgment of the second mourning phase, (3) referral to parent groups, and (4) attention to the family’s emotional support. At first, families may find it difficult to allow the child whom they regarded as ill with cardiac problems before surgical correction to assume the role of a healthy, normal child. Children are often best able to gauge their own abilities and limitations. Encouraging family members to allow the child to adapt to new or familiar activities is crucial.5 Most children recover rapidly from heart surgery and are ready to return to active play, day care, or school in just a few weeks. The family’s ability to encourage normal activities and to allow the child to participate at his or her own pace will enhance the child’s recovery and adjustment after surgical repair of the CHD.

558

PART THREE

EQUIPMENT AND TECHNIQUES

References 1. Apley J, Barbour RF, Westmacott I: Impact of congenital heart disease on the family: Preliminary report. BMJ 1:103–105, 1967. 2. Bengur AR, Li JS, Herlong JR, et al: Intraoperative transesophageal echocardiography in congenital heart disease. Semin Thorac Cardiovasc Surg 10:255–264, 1998. 3. Bowen J: Helping children and their families cope with congenital heart disease. Crit Care Quart 8:65–70, 1985. 4. Brown DG, Glazer H, Higgins M: Group intervention: A psychosocial and educational approach to open heart surgery patients and their families. Soc Work Health Care 9:47–59, 1983. 5. Carey LK, Nicholson BC, Fox RA: Maternal factors related to parenting young children with congenital heart disease. J Pediatr Nurs 17: 174–183, 2002. 6. Delius RE, Caldarone C: Mechanical support of the pediatric cardiac patient. Semin Thorac Cardiovasc Surg Pediatr Card Surg Ann 3:179–185, 2000. 7. DeMaso DR, Beardslee WR, Silbert AR, Fyler DC: Psychological functioning in children with cyanotic heart defects. J Dev Behav Pediatr 11:289–294, 1990. 8. Dorman BH, Sade RM, Burnette JS, et al: Magnesium supplementation in the prevention of arrhythmias in pediatric patients undergoing surgery for congenital heart defects. Am Heart J 139:522–528, 2000. 9. Flori HR, Johnson LD, Hanley FL, Fineman JR: Transthoracic intracardiac catheters in pediatric patients recovering from congenital heart defect surgery: Associated complications and outcomes. Crit Care Med 28:2997–3001, 2000. 10. Goldberg S, Simmons RJ, Newman J, et al: Congenital heart disease, parental stress, and infant-mother relationships. J Pediatr 119:661–666, 1991. 11. Hazinski MF: Cardiovascular disorders. In Hazinski MF (ed): Nursing Care of the Critically Ill Child. St Louis, Mosby-Year Book, 1992, pp 117–394. 12. Jaggers J, Ungerleider RM: Cardiopulmonary bypass in infants and children. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 3:82–109, 2000. 13. Jensen CA: Nursing care of a child following an arterial switch procedure for transposition of the great arteries. Crit Care Nurse 12:51–57, 1992. 14. Kashani IA, Higgins SS: Counseling strategies for families of children with heart disease. Pediatr Nurs 12:38–40, 1986. 15. Lappe DG, Beers MC, Hesterberg M: Pediatric intensive care nursing. In Rogers MC (ed): Textbook of Pediatric Intensive Care. Baltimore, Williams and Wilkins, 1992, pp 1588–1610. 16. Laussen P: Neonates with congenital heart disease. Curr Opin Pediatr 13:220–226, 2001. 17. LeRoy S: Clinical dysrhythmias after surgical repair of congenital heart disease. AACN Clin Issues 12:87–99, 2001.

18. Linde LM: Psychiatric aspects of congenital heart disease. Psychiatr Clin North Am 5:399–406, 1982. 19. Lloyd P: Postoperative nursing care following open heart surgery in children. Nurs Clin North Am 5:399–401, 1970. 20. Lodge AJ, Chai PJ, Daggett CW, et al: Methylprednisolone reduces the inflammatory response to cardiopulmonary bypass in neonatal piglets: Timing of dose is important. J Thorac Cardiovasc Surg 117:515–522, 1999. 21. Loeffel M: Developmental considerations of infants and children with congenital heart disease. Heart Lung 14:214–217, 1985. 22. Main E, Elliott MJ, Schindler M, Stocks J: Effect of delayed sternal closure after cardiac surgery on respiratory function in ventilated infants. Crit Care Med 29:1798–1802, 2001. 23. Maurer S, Kramer GF: A Parent’s Guide to Children’s Congenital Heart Defects: What They Are, How to Treat Them, How to Cope with Them. Three Rivers, Mich.,Three Rivers Press, 2001. 24. Miles MS, Mattioli L, Diehl AM: Parent counseling: Psychological support of parents of children with critical heart disease. J Kans Med Soc 78: 134–136, 151, 1977. 25. Purcell C: Preparation of school-age children and their parents for intensive care following cardiac surgery. Intensive Crit Care Nurs 12:218–225, 1996. 26. Rushton CH: Preparing children and families for cardiac surgery: Nursing interventions. Issues Compr Pediatr Nurs 6:235–248, 1983. 27. Rushton CH: Family-centered care in the critical care setting: Myth or reality? Child Health Care 19:68–78, 1990. 28. Sklansky M, Tang A, Levy D, et al: Maternal psychological impact of fetal echocardiography. J Am Soc Echocardiogr 15:159–166, 2002. 29. Turley K, Tyndall M, Turley K, et al: Radical outcome method: A new approach to critical pathways in congenital heart disease. Circulation 92:II245–249, 1995. 30. Utens EM, Versluis-Den Bieman HJ, et al: Does age at the time of elective cardiac surgery or catheter intervention in children influence the longitudinal development of psychological distress and styles of coping of parents? Cardiol Young 12:524–530, 2002. 31. Uzark K: Counseling adolescents with congenital heart disease. J Cardiovasc Nurs 6:65–73, 1992. 32. Veldtman GR, Matley SL, Kendall L, et al: Illness understanding in children and adolescents with heart disease. Heart 84:395–397, 2000. 33. Visconti KJ, Saudino KJ, Rappaport LA, et al: Influence of parental stress and social support on the behavioral adjustment of children with transposition of the great arteries. J Dev Behav Pediatr 23:314–321, 2002. 34. Ward CR, Constancia PE, Kern L: Nursing interventions for families of cardiac surgery patients. J Cardiovasc Nurs 5:34–42, 1990. 35. Weindling SN, Saul JP, Gamble WJ, et al: Duration of complete atrioventricularblock after congenital heart surgery. Am J Cardiol 82:525–527, 1998.