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A Critical Analysis of a Patients Journey - Essay Example

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The paper "A Critical Analysis of a Patients Journey " highlights that the advancement in the field of medicine and technology and the refinement of the surgical techniques have improved the mortality of children born with cardiac defects including HLHS…
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A Critical Analysis of a Patients Journey
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A critical analysis of a patients journey through Pediatric Intensive Care Unit from a nursing perspective Introduction: This is a case analysis of atwo months old infant who suffered from congenital heart disease. This congenital heart disease translates in many heart defects and circulatory system’s deficiencies. It is said to affect more infants than any other birth defects. Statistically it affects 1 child in every 115 (Hoffman, 2000). The range of the defect varies from child to child. It can be extremely severe to mild but in any case it usually requires intervention within the first year of birth which was the case with the said infant. Since the 1950’s it has become possible to surgically repair and palliation of the congenital heart defect. Even with the children who suffer the extreme form of this heart defect. The success rate has been very encouraging. The said infant suffered from Hypoplastic left heart syndrome (HLHS) which is an extension of congenital heart disease. It is the fourth most common type of congenital cardiac defect. It basically is a functional signal ventricle due to the congenital heart. HLHS is characterized by a multiple abnormalities related to heart including steosis or atresia of ventricular inflow and outflow tracts of both the left side (Report of the New England Regional Infant Cardiac Program, 1980). In the 1980’s most of the infants died within the first month of their birth but since then due to various medical advancements and the advent of Norwood procedure, the survival rate has risen a great deal (Kirklin et al. 1980). The two treatments of the congenital heart being currently offered are either multi stages surgical palliation or the orthotopic cardiac transplantation. The mortality rate of the HLHS is considerably higher than other defects occurring due to the congenital heart disease. Additionally there is not much knowledge and information about the long-term follow-up related to the HLHS survivors (Caplan et al. 1996). The infants who are born with this disease are usually born on time and have relatively normal birth weight. It has also been researched that extra cardiac and malformationsare is present in about 2.3% of them (Report of the New England Regional Infant Cardiac Program). It has also been noticed that its occurrence is more in boys than in girls. Fortunately the chances of this disease being present in the siblings are only 0.5% of the times and only 2.2% for other extension of congenital heart disease (Wernovsky, Bove, 1998). The chances of survival post the cardinal surgery has been increased to 95% now. Unfortunately the exact cause of the HLHS has yet to be fully comprehended. It can however easily be stated that the many developmental abnormalities occurring at the time of the development of the fetus limits the inflow and outflow of blood in the left ventricular and causes this syndrome. The staged surgical palliation has become the preferred choice of procedure because there are hardly any infant heart donors (Tweddell et al. 2002). The systematic oxygen delivery has been continuously improved during preoperative, intra-operative, and postoperative management. The understanding of the physiological changes associated with the infants with HLHS has been enhanced. The survival rate has also raised remarkably post the improvement of the Norwood procedure. In this article the journey of a two months old infant through admission in to the PICU is followed from a nurse’s perspective. Additionally many management strategies used right from the diagnosis and the recovery with the help of the management and staff of the paediatric ward is discussed. The experience and the ordeal of the family going through this have also been amply illustrated and the help of the nurses in this regard has been outlined and appreciated. Discussion: Patient Presentation: On the January 15th 2010 two months days old boy was admitted in the PICU with the symptoms of respiratory distress and cyanosis. Additionally tachypnea and poor feeding were also the characteristic symptoms of the infant. The infant was early on diagnosed with HLHS. The symptoms quite amply indicated towards the HLHS. The doctors were able to associate the increased respiratory effort with the increase in the pulmonary blood flow and pulmonary congestion. The mild cyanosis was associated with the integration of pulmonary venous blood and systemic venous blood at the atrial level. The infant was the first and the only child of the parents. It was no doubt a crisis for the parents and the family. The head surgeon broke the news of the family. They were initially given time to absorb the shock and grief of such drastic and significant diagnosis. There is an urgent need to treat the infants with HLHS but the family was given the support and time to process such enormous news and make an informed decision. It was ensured that the family gets multiple opportunities and sources of information about their infant’s heart disease. The parents of the infant were provided with two options to either go for surgical palliation with Norwood procedure and its following surgical stages or a complete cardiac transplantation. The family was provided the necessary information about the facts and figures related to both the treatment option. The children with this disease are now living to the age of adolescent (Mahle, et al. 2000). The parents were also informed about the potential delay in the neuro-development especially in communication and gross motor skills in children with HLHS (Kern, et al. 1998). It however does not mean that the child will have a poor quality of life; the parents of children with Norwood procedure have reported that they led quite a full life with good health (Williams, Gelijns, Mmoskowitz, 2000). The family was also extended a helping hand by the nurses, staff and the management by giving them the information related to the anatomy, surgical procedures and the outcome of the HLHS. Additionally they were referred to the support group of the families who have had gone through the same ordeal. The contact numbers of the families who have had precious encounters with HLHS were also given to the parents of the infant. They were also given information related to congenital heart online via informational web sites by the nurses. Preoperative Management The family of the infant chose to go forward with the surgical palliation. So a Norwood procedure was scheduled for 2 days after the diagnosis was confirmed. The dilemma with the HLHS patients is that they are at a risk preoperatively, intra-operatively and especially the postoperatively. The procedure is largely dependent on the intuition and perception of the health care professionals because of countless intricacies involved which includes but are not limited to; the partial reserve of the single right ventricle, consequent inefficiency of parallel pulmonary and systematic circulation. The health professional have a deep understanding and insight related of the function of pulmonary and systemic confrontation in determining blood flow and systemic arterial and venous oxygen saturations. This deep understanding and the insight is crucial for the best clinical management of infants from the process of diagnosis to discharge (Williams, et al. 2000). Preoperative Care by the Nurses Although the role of the nurses was central all through this case but the in preoperative management of the infant was to a large degree dependent on the provision and standard of the health care given by the nurses. The nurses consistently kept a watch on the subtle changes in the infant’s condition. The fact that little changes in the vital signs and the appearance can tell in advance the potential complications involved in the case made the role of the nurses altogether more important. The risks of a congestive heart failure and low cardiac output made the nurses to keep an eye on the infant’s stats more diligently. The early detection of such a scenario can help the doctors to intervene and safeguard the infant to the stress of low cardiac output. The said infant however fortunately was not detected for any such malfunctions. The duty nurse was also well aware of the appropriate medications such as prostaglandin E1 to stop any complication from manifesting. The care of the infants with HLHS is a very complex and technical matter which requires the help of multiple specialists. The up to mark condition was over looked by the nurses because it has a direct link with the infant’s intra operation and post palliation surgery course. The coordination of the nurses ensured an easy flow of communication between the infant’s family and the doctors. The nurse supported the family all through the two days that the family awaited their baby’s surgery. The parents were understandably much stressed and were intimidated by the hospital setting, the nurse made sure that they were well informed in these stressful times. The stress and anxiety level of the parents were tried to be relieved to the best of the nurse’s capability. They provided the guidance and information and helped the family in finding many coping strategies and mechanism. The family also relied on the nurses to provide the support resources like social work and chaplaincy services. Intra-operative Management: The infants who are only as old as two months like the said patient usually have to be subjected to the stage 1 surgical palliation. Fortunately the survival rate of this procedure is 96-99%. The timing of the surgery was determined by sufficient input from the cardiology, cardiovascular surgery, and critical care staff. The goal of the surgery was to un-obstruct and facilitate the blood flow, ensure the flow of blood from the left to right atrium and finally create a source of adequate pulmonary blood flow. The other strategies that were made use of were modified ultra-filtration and after-load reduction. These strategies were made use of, so to reduce the systemic inflammatory response and enhance the performance of single ventricle post the cardiopulmonary bypass. In this way the workload of the single ventricle immediately after the surgery is significantly reduced (Mussatto 2004). After the surgery the infant was transferred to the pediatric intensive care unit. The blood pressure, oxygen saturation, heart rate and rhythm were monitored all through the process of the transfer as was in the post operation. The critical care nurse was given an ample understanding of the intra-operative course. The reports and first hand information by the medical practitioners and the anesthesiologist were given to the nurse on duty. The information imparted on the nurse varied from the colloid/crystalloid fluid balance of the infant, the duration of cardiopulmonary bypass and any complication in the process, circulatory arrest and the length of the shunt placed during the surgery. The nurse was basically informed about all the events that took place in the operating room. The wealth of knowledge about the infant’s journey in the surgery room made the nurse on duty to anticipate any risks that the infant may come across in the post operative period. There is one particular incident worth mentioning in which the mother of an infant lost control and was quite vocal about her perceived mismanagement and complaints with the hospital in the waiting room. She also complained of not knowing if her baby’s going to live. It has been found that it is very likely that the conflicts might break out at PICU. It has been found through various studies that the conflicts amongst the adults who have had prolonged stay at the ICU is 50% more in both team family and intra-team (Studdert, Mello, Burns, 2003). A number of strategies were adopted by the nurses to reduce the harmful effects of disputes in the PICU. Ethic consultation, mediation and innovative communication were made use of by the nurses to tackle the situation at hand (Bowman, 2000). Communication has been after all regarded vital in building a relationship of trust in the pediatric intensive care unit (DeLemos, Chen et al, 2010).  Postoperative Management: The post operative management starts during the preoperative period. The recovery from any additional indication of defect indicated with the help of care of the nurses ensures that the post operative course is smooth and without any complications. The optimal timings and efficient management of the hemo-dynamics all works to smooth things out for the post operative management. The postoperative care also included preparing the family of the infant by informing them about the potential risks and complications in the case of their baby boy. Even post the surgery the infant had inefficient circulation and incomplete reserve of a single functional ventricle. A neo-aorta was created by making use of the main pulmonary artery and systemic circulation. The fatal postoperative circumstances included excessive pulmonary blood flow and insufficient cardiac output (Tweddell, Hoffman, 2002). The fact that the post operative mortality is as high as 25% for infants made the things a little stressful for the parents, fellow nurses and the doctors alike. However the experience with the Norwood procedure, acceptance of neonatal intervention for HLHS and up to mark care provided by the nurses kept the matter hopeful and encouraging (Gaynor et al. 2002). The infant was put under strict observation of the nurses and the doctors also took regular rounds of the PICU after the surgery. The first 48 hours are regarded the crucial after the surgery. The myocardium of the infant diagnosed with HLHS is already compromised when it comes to stroke volume but it is further compromised after the cardiac surgery. The limited cardiac output also further puts the myocardium to more risks and vulnerabilities. The vascular responses are also altered post the surgery. Other physiological changes occurring in the infant after the surgery included; high metabolic demands, the systemic inflammatory response, the fluctuating body temperature and the discharge of catecholamines. These physiological changes took place right after the surgery when the oxygen delivery to the whole body was also malfunctioning. The risk of the multiple organ malfunctioning was also highest at this time and it was a time of systematic inflammatory response syndrome and the risks of the death were also high at this time (Tweddell, Hoffman, Mussatoo, 2002). Post operation and Nursing Care: The risks identified by the doctors for our patient were low cardiac output, hypoxemia, excessive internal bleeding or infection and side effects of the medications. The consistent watch of the nurses prevented any such risks from manifestation and overall positively impacted the postoperative course. The nurses were knowledgeable about the exact range and extent of the physiological changes taking place in the little patient. They also had the insight in to the potential side effects of the medications and drugs the infant was put under. The nurses basically time to time performed a physical assessment of the said infant to consistently monitor the response of the infant to medication. The cardiac output was also strictly monitored by the nurses. The indirect indication of the cardiac output of our patient found by the nurses were quite adequate with pink colour, less than 2 seconds time of capillary refill and urine output of 1ml per hour and lack of metabolic acidosis. The nurses also monitored and observed more direct parameters of change in the physiological status of the infant. The nurses were taught to notify the medical staff in case any discrepancy from the normal stats is observed. The successful recovery of our patient was only made possible due to the dedication of the nurses in all the three stages of surgery. The nurses also bear the responsibility of intra-cardiac catheters which is used for monitoring. The data obtained from catheters basically provided the instant by instant hemodynamic information of the patient. The leveling and zeroing of the transducers were also taken over by the nurses. The comparable monitoring of the SVO2 was also done by the nurses by comparing the values obtained from the monitor with that if the laboratory. The shunt in the heart put the infant at the risk of air embolism if the air enters the blood stream through the shortcoming in the consistent monitoring of the catheter. The care of the critically ill children is a very emotional, stressful ordeal for the parents and the family. These times are very prone to conflict since the families have to make life changing and very risky treatment decisions (Fischer, Calame, Dettling, Zeier, 2000). The stress and the grief level of the young couple were also very high which translated in their somewhat non-conductive and obtrusive behavior. The clinicians along with nurses made sure the family members get the assistance in coping and dealing of care of their infant. The family had come from the Kuwait- a Middle Eastern country. The impact of the cultural shock coupled with non-fluent English can also be associated with conflict. A research carried out by Studdert, et al. (2003) proved the fact that access to care, race, acuity and the lack of medical insurance increases the risks of conflict. The inability of the couple to anticipate the outcome and the prognostic information associated with the cardiac patients also contributed to the restlessness and the frustration of the family. The nurses and the staff tried to make the conflict resolving interventions timely and effective through their efforts. It is pertinent for the provision of high quality medical care that there is effective flow of communication. The said family from Kuwait varied significantly when it came to language, beliefs related to illness and other medical care expectations. These cross cultural variation led to much communication related problems and would have had dire consequences had it not been for the nurses to intervene and play mediators. The nurses also helped in the coordination with the family members as they did in the preoperative stage. A network of communication was formed between the healthcare service providers and the infant’s family. The support to the family was also provided by the postoperative team of nurses. The provision of the accurate information consistently was also the responsibility of the nurses. Discharge from the Pediatric Intensive Care Unit:  The infant was transferred out of pediatric intensive care unit after about one week when he was breathing in his own without the mechanical ventilation. The 75% to 85% of oxygen saturation was maintained. The hemodynamic status of the infant was also stable and the all the intra cardiac and the arterial catheters were removed. The intravenous medication were also discontinued when the infant was transferred the cardiac step down unit. The oral treatment of was however continued. The risks of thrombosis were also significantly reduced with the help of aspirin. The feeding of the infant becomes a dire problem after the cardiac surgery (Rudd, Gibson, 2002; Pillo, Miles, Beghetti, 1998). Our infant patient was provided the nutrition and feeding consultation. The ideal energy intake of infant at this stage is 460-540 kJ/kg. It was also recommended to give additive with the standard formulas and the breast feed to the infant. The infant was fortunately able to adequate intake oral feeding, so the need to add a gastrostomy tube was largely reduced. The accommodation for the parents was also available before the infant could be discharged. They were constantly educated about the medical care of the child. The medicines were once reviewed with the parents before the infant was sent home. The prescription of the child included; digoxin which helped to support the sole function of the ventricle, captopril to limit the work load of the single ventricle. Additionally aspirin was continued to decrease the thrombotic complications. It was also made sure that the parents had ample understanding of scale and the oximeter before they could take the infant home (Ghanayem, Hoffman, Mussatto, 2003). They were also advised by the nurses to keep a record of their child’s daily weight and oxygen saturation. The infant was provided follow-up by both the pediatric cardiologist and a pediatrician. The neurological and the physical development were also to be closely observed. Even after the discharge from the hospital our infant patient who underwent first stage surgical palliation was monitored closely. The decreased cardiac output as a result of parallel circulation and cardiac anatomy can be found in the children. The 15% of the infants who survive the first palliation dies at home after their surgery (Mosca, Kulik, Goldberg, 2000). The parents of the said infant were asked to observe the behavior of their infant and get accustomed to their normal appearance and behavior. The infant is to see a cardiologist and pediatrician when he goes back to Kuwait every 2 to 4 weeks. Conclusion: This case illustrates the nursing care plan undertaken to facilitate an infant undergoing the cardiac surgery. This article highlights the importance and significance of the nursing staff in the healthy consequences of the surgery. It is not possible without the help of the nursing staff to give the sufficient medical care to the patient. The said infant who was born with the HLHS presented challenges to the whole of the management team at the hospital. The nurses played a pivotal role in every stage of the surgery. The parents of the infant were also supported and provided the information they needed by the critical care nurses. They had a deep understanding of the physiological consequence of single ventricle anatomy. A comprehensive counseling was made available by the whole health care team. It was made sure that the child and the family both receive adequate care. A review of the recent cases of surgical intervention and other researches highlighting the neurological and developmental outcomes were presented to the parents to help them to make an informed decision regarding their choice of treatment. The parents of the said infant decided to go for surgical intervention. It was also taken in to account that the parents get the services of a multidisciplinary team of specialists. They were also made aware about their options of seeking financial help and sustaining this financial burden. The nurses played a pivotal role to direct the families towards the support group available for parents to turn to and seek guidance from. Additionally online resources were also amply used to get information about the congenital cardiac disease. The nursing care also includes the educational programs for the parents regarding the medication that the infant will need to intake, they also help to reduce the stress of the parents by recommending support groups, information about the activity restriction of the child, knowledge and understanding of the future surgery needs of the child and promotion of the infant development stimulation. The parents are instructed to notify the doctors if they notice any change in the behavior of the child or even minute variation from the norm. The infant to a large degree survived due to the constant monitoring of the nurses in PICU. The infant was consistently monitored for the venous oxygenation, stabilization of the SVR and finally the reduction in the postoperative inflammatory response. The critical care nurses kept a close eye on these integrating factors and it was through their monitoring and recognition of problems early on that the infant was out of PICU and on the road to recovery. It would not be wrong to say that the nursing care resulted in increasing the survival of infants with HLHS by double fold. The advancement in the field of medicine and technology and the refinement of the surgical techniques has improved the mortality of the children born with cardiac defects including HLHS. HLHS is still however considered one of the most complex and difficult congenital cardiac malformation to manage. There are still many unresolved questions and issues regarding the complications in this disease. There is a need for further research in this arena. The need of more information is also needed to help guide the families to opt for treatment, long term survival with the best quality of life. References American Heart Association. Congenital heart defects in children fact sheet. Bowman KW. Communication, negotiation, and mediation: dealing with conflict in end-of-life decisions. J Palliat Care.2000; 16 :S17 –S23 Caplan WD, Cooper TR, Garcia-Prats JA, Brody BA. Diffusion of innovative approaches to managing hypoplastic left heart syndrome. Arch Pediatr Adolesc Med. 1996;150:487–490. Congenital Heart Information Network. Online support. Available at: http://www.tchin.org/support/index.htm. Gaynor JW, Mahle WT, Cohen MI, et al. Risk factors for mortality after the Norwood procedure. Eur J Cardiothorac Surg. 2002;22: 82–89. DeLemos, Destinee, Chen, Minna, Romer, Amy, Brydon, Kyla, Kastner, Kathleen,Anthony, Benjamin, Hoehn, K. Sarah MD, (2010). Building trust through communication in the intensive care unit. Pediatric Critical Care Medicine, Vol. 11.3. pp: 378-384 Fischer JE, Calame A, Dettling AC, Zeier H, Fanconi S. Experience and endocrine stress responses in neonatal and pediatric critical care nurses and physicians. Crit Care Med.2000; 28:3281 –3288 Gutgesell HP, Gibson J. Management of hypoplastic left heart syndrome in the 1990s. Am J Cardiol. 2002;89:842–846. Ghanayem N, Hoffman, GM, Mussatto, KA, et al. Home surveillance program prevents interstage mortality after the Norwood procedure. J Thorac Cardiovasc Surg. 2003;126: 1367–1377. Hoffman J. Incidence, prevalence, and inheritance of congenital heart disease. In: Moller J, ed. Pediatric Cardiovascular Medicine. Philadelphia, Pa: Churchill Livingstone; 2000:257–262. Hoffman GM, Ghanayem NS, Kampine JM, et al. Venous saturation and the anaerobic threshold in neonates after the Norwood procedure for hypoplastic left heart syndrome. Ann Thorac Surg. 2000;70:1515–1521. Kern JH, Hinton VJ, Nereo NE, Hayes CJ, Gersony WM. Early developmental outcome after the Norwood procedure for hypoplastic left heart syndrome. Pediatrics. 1998;102:1148–1152. Mosca RS, Kulik TJ, Goldberg CS, et al. Early results of the fontan procedure in one hundred consecutive patients with hypoplastic left heart syndrome. J Thorac Cardiovasc Surg. 2000;119:1110–1118. Mahle WT, Clancy RR, Moss EM, Gerdes M, Jobes DR, Wernovsky G. Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome.Pediatrics. 2000;105:1082–1089. Norwood WI, Kirklin JK, Sanders SP. Hypoplastic left heart syndrome: experience with palliative surgery. Am J Cardiol. 1980;45:87–91. Pillo-Blocka F, Miles C, Beghetti M. Nutrition after surgery for hypoplastic left heart syndrome. Nutr Clin Pract. 1998;12:81–83. Report of the New England Regional Infant Cardiac Program. Pediatrics. 1980;65(2 pt 2): 375–461. Rudd NA, Zlotocha JR, Mussatto KA, Frisbee SJ, Pelech AN, Frommelt PC. Growth velocity of infants with hypoplastic left heart syndrome: a comparison of enteral feeding strategies [abstract]. Cardiol Young. 2001;11(suppl 1):149. Studdert DM, Mello MM, Burns JP, et al. Conflict in care of patients with prolonged stay in the ICU: types, sources, and predictors. Intens Care Med.2003. Soetenga, Mussatto (2004). Management of Infants with Hypoplastic left heart syndrome; Integrating Research in to nursing practice. American Association of Critical Nurses. Tweddell JS, Hoffman GM, Mussatto KA, et al. Improved survival of patients undergoing palliation of hypoplastic left heart syndrome: lessons learned from 115 consecutive patients. Circulation. 2002;106(12 suppl 1):I82–I89. Tweddell JS, Hoffman GM, Fedderly RT, et al. Patients at risk for low systemic oxygen delivery after the Norwood procedure. Ann Thorac Surg. 2000;69:1893–1899. Tweddell J, Hoffman, GM. Postoperative management in patients with complex congenital heart disease. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2002;5:187–205. Williams DL, Gelijns AC, Moskowitz AJ, et al. Hypoplastic left heart syndrome: valuing the survival. J Thorac Cardiovasc Surg. 2000;119(4 pt 1):720–731. Williams DL, Gelijns AC, Moskowitz AJ, et al. Hypoplastic left heart syndrome: valuing the survival. J Thorac Cardiovasc Surg. 2000;119(4 pt 1):720–731. Wernovsky G, Bove EL. Single ventricle lesions. In: Wessel D, ed. Pediatric Cardiac Intensive Care. Baltimore, Md: Williams & Wilkins; 1998:271–288. Read More
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