My name is Casey Burritt and a nursing student who cared for this patient on November 16th and 17th. This is not this patients real name, but I chose to give her an alternate name instead of using her initials. Dahlia means innocence and Is the name of a flower, just as her real name.
I cared for Dahlia on days 62 & 63 of her hospitalization. She had been in TCU for the majority of her stay in the hospital – she transferred from the PICU in September. He primary nurses told me that she was expected to be transferred to a long-term care facility that could adequately care for her in her current condition in approximately 3 weeks – the week of December 6, 2010. We spent these two days constantly monitoring her respiratory status, mostly via her pulse oximetery readings. I also spent much of the day interacting with her trying to help her meet the developmental goals that had been set forth for her by her therapy teens.
He was born with encephalopathy which involves a wide array of disorders of the brain. Some are degenerative and progressive and others are not. Dahlia’s encephalopathy is manifested by bulbar palsy. Her history includes central and obstructive sleep apnea that had been previously managed at home. Her medical team believes that these are manifestations of her specific palsy. She was admitted on September 16, 2010 because she was suddenly having problems with desaturations while asleep. She was being seen by her primary physician who diagnosed her with an upper respiratory infection. The infection seemed to have a large impact on her ability to have adequate amounts of oxygen in her system while she was asleep. Admittance occurred because of the drastic desaturations that occurred while she was sleeping. Once in the hospital, a tracheostomy surgery occurred to relieve Dahlia’s obstructive apnea to help reduce desaturations. Her bulbar palsy has lead to her developmental delays. Dahlia is chronologically 2 years old, but developmentally, she is very much below this, ranging between 2 and 8 months depending on which skills are being discussed.
Bulbar palsy is a syndrome that affects the lower motor neurons (cranial nerves 9-12). The problems that result from the lesions present in the neurons are manifested throughout the face and neck. These locations can become partially or totally paralyzed resulting in problems with articulation especially with consonants. Dahlia can also have problems when it comes to eating, chewing and swallowing. This is a progressive disease that eventually leads to malnutrition caused by dehydration and an inability to properly eat. Aspiration is also a common problem because the patient still needs to breathe while eating but cannot swallow the food already in the mouth.
Dahlia’s family only speaks Spanish. This requires that a translator be present whenever the parents and siblings are present. Educating parents is a difficult tasks as it is, and with the additional language barrier, it becomes an even more difficult task. Dahlia is a fraternal twin opposite a little boy. This brother has no related health complications. She also has an older brother. He does not have any significant health issues either. The family lives on the Eastern Shore which makes it exceptionally difficult to travel to Norfolk very often. The staff says that they visit almost every weekend and they come during the week a couple of times a month. This family requires a lot of attention when they come to the unit to visit. However, they have been very active in her care whenever they are present. Because of the building that this family lives in, it is not feasible for Dahlia to be discharged back to her home. She will require a lot of equipment and resources that her family is currently unable to provide.
Within a week of being diagnosed with the upper respiratory infection, she was admitted to the hospital for worsening desaturations while she sleeps. This makes her primary medical diagnosis the infection. The initial treatment involved preventing desaturations as the infection was suspected to be viral. Reports indicate that she was also treated with antibiotics initially. As the drops continued, they made an attempt at eliminating the obstructive apnea she experienced through a tracheostomy, which seems to have reduced the obstructive apnea leaving only the central apnea to cause desaturations. Her secondary diagnoses include the sleep apnea previously mentioned and the bulbar palsy that initiates much of her problems.
Psychosocial: She should be at the autonomy vs. shame & doubt, but she remains in the trust vs. mistrust phase. Her needs must be met with minimal delay of gratification in order to ensure that she can gain trust in her caregivers which may help her to progress. Cognitive: She should be preoperational meaning that helps to connect the behavior of infancy that is only self-satisfying, and that of the elementary socialized behavior older children. The sensorimotor phase includes when children begin to progress from only reflexive behaviors to easy repetitive acts to true imitation of behaviors. She definitely seemed to be in this stage as she didn’t seem to have very purposeful movements or behaviors. Psychosexual: The nursing staff explained that she had a HUGE oral fixation, even had a rubber “chewy” that was attached to hair-ties & kept on her arm for her to chew on. Language: She shows a social smile when her name is called, when she is tickled or actively played with which usually initiates between 3 and 4 months. She is also completely nonverbal which usually stops at about two months. Gross & Fine Motor: She should be able to run, mostly without falling, throw a ball without losing her balance, she should be able to build a small block tower (4 high) and scribble on paper. Dahlia has head lag that is not mild which is appropriate at 2 months of age. She is able to lift her head momentarily when prone by pushing up with her arms which should be accomplished at 2 months. She can grasp objects with both hands and put them in her mouth which happens at 4 and 5 months respectively. Play: this order is usually performed by children from four to eight months.
A typical 2-year-old would be able to help with ADLs such as brushing her hair, oral hygiene, changing her clothes and even helping while in her bath. While I did not observe any bathing activities during the afternoons I spent with her, she was unable to participate at all in anything productive. She required complete care in all of these areas of care. She is not able to eat or be potty trained. She cannot crawl or walk. She also cannot dress herself so she requires help whenever she changes. Communication cannot be carried out in a typical way with this patient. She is nonverbal and doesn’t seem to truly comprehend anything we say to her. She did seem to respond to me and the other nurses when her name was called. She also rolled over to whichever side I was on. She must communicate with us via nonverbal, physical cues. She seemed to grab at her diaper more often when it was wet.
Cardiovascular: No issues noted; heart rate remained within range of 145-155; no extra sounds noted upon auscultation; peripheral pulses are equally palpable bilaterallyGenitourinary: WDL except that she is 2 ½ years old & not potty trained; Urinary output remained 1-2mg/kg/hr Gastrointestinal: G-tube in RUQ , dressing is intact but it must remain thoroughly covered (so she doesn’t mess with it); Musculoskeletal: Significant head lag; Unable to crawl or walk, but can roll over on her own; moves all extremities well Neurological: Sleeps frequently but is easily aroused; nonverbal; plays with rattle with encouragement; responds occasionally to her name; significant head lagPsychosocial: Alone – family doesn’t live close by; Limited interactions with family, children her own age, even nurses; Respiratory: Sleep apnea – central; tracheostoma with heated trach collar – 4.0 pediatric Bivona, 21% FiO2; requires ventilation overnight; desaturations throughout the day while sleeping but not drastic or difficult to reverseSkin: reddening around the neck; healing G-tube stoma
#1: Respiratory R/T alveolar-capillary membrane changes & sleep apneaRequires mechanical ventilation at night/when sleepingBiPAP that previously worked to control apnea no longer doesTracheostoma placed on 9/23/2010Chest physical therapyAlbuterol – bronchodilatorPulmicort – anti-inflammatory#2: Risk for injuryR/T seizure disorderConstant “flapping” aroundRequires careful observationsStraps should be used when in chairs (tumble form, wheelchair, etc.)Ativan – antianxietyTegretol – antiseizureKlonopin – antiseizure#3: Developmental DelayShould be able to crawl, walk, run but her goals are set way behind this levelGoals include: localizing auditory stimuli, attending to speaker when name is called, reaching for objects presented at midline, attend to self in mirrorOccupational, physical & speech therapies visit her once a week
RespiratoryHer condition caused the family’s compromised coping, her risk for nutrition imbalance, surely influences her verbal communication abilities. It’s also possible that the developmental delay (and bulbar palsy, for that matter) was caused by or at least influenced by her respiratory status if there had been an anoxic episode in the perinatal periodRisk for injuryDahlia’s seizure disorder definitely is the reason for her injury risk. This additional disorder relates to the family’s ability to cope. Developmental delayThe palsy has affected ability to develop normally and could also have caused or added to the development of her seizure disorders & therefore her risk for injury. Her delays make her unable to properly communicate, or to verbally communicate at all. Impaired communicationDahlia’s inability to communicate with anyone, especially her family, causes them further reasons to cope ineffectively as they cannot hear her voice or think that she understands when they speak to herNutritionIf Dahlia does not receive the proper nutrition she may not be able to provide adequate nourishment to her body’s organs and a lack of necessary nutrients to her brain may further her developmental delay.
Impaired airwaysQ4h & PRN, respiratory rate, breath sounds, oxygen saturation levels should be assessed. CPT should be performed regularly as scheduled and any respiratory medications should be given at proper intervals in relation to Dahlia’s CPT. After each incidence of CPT, effectiveness should be assessed and recorded in her chart. Upon entering Dahlia’s room, color changes should be watched for that would indicate decreased gas exchange. Also, Dahlia’s trach and heated trach collar settings should be monitored throughout the day.Risk for injuryAll of Dahlia’s antiepileptic medications must be given to her on time to prevent any seizures. Her temperature gets monitored with each vital sign check which is q4h & PRN. Whenever she was out of her bed and in her wheelchair or tumble form chair, chest straps were used to ensure her safety so she doesn’t fall out. Crib rails also remain completely raised so she cannot roll over and fall out. Sharp and small objects must be kept away from her to prevent punctures, bruises or skin breakdown. We continuously monitored Dahlia for seizure activity. Developmental delayEach day, throughout the shift, I worked with Dahlia to accomplish her goals. Every time I went into her room, I would call her name and rewarded her with much praise each time she would show a response. One of her toys had a mirror one side and I tried to use that interest her. Both days, I also worked with her on meeting her already met milestones – localizing auditory stimuli, social smiles, etc. I gave her a rattle periodically throughout the day and she played with it for about five minutes before she threw it on the floor. I also tried to encourage mimicking of non-speech mouth movements to encourage her to begin speaking. Impaired verbal communicationDahlia’s best interactions with her caregivers should be evaluated to determine the way that she is able to communicate. I tried to anticipate her needs by paying attention to the nonverbal cues she gives out. When I tried to do something with her, I would give concrete and specific instructions to her in hopes she might show signs of understanding. I also tried to support her speech therapy by encouraging practice throughout the day. Compromised family copingMany of the required interventions for this would require that her parents be present, but since they were not, many of these could not be followed through with. Each family member’s perception of Dahlia’s illness should be identified and her healthcare team should encourage them to question and express their concerns. We should discuss ways in which they can be involved in Dahlia’s care. Her condition should be thoroughly discussed with Dahlia’s family so that they are able to understand. The nurse, assisted by a translator, should refer the family to resources they may need to provide adequate care once she has been discharged from the hospital, and hopefully, the long-term care unit. NutritionWe must keep accurate records of her intake and output to monitor her hydration status. We assess and record any signs and symptoms of imbalanced nutrition such as vomiting, diarrhea, etc. We also organize her daily care in a way as to conserve her energy, preventing excessive calorie usage and intake need.
Hand hygiene must be performed and exam gloves worn before handling any part of the feeding system. A mask must be worn if the handler is experiencing a cold or respiratory infection. Feeding sets should be assembled on a surface that has been disinfected with alcohol. Alcohol should also be used to clean the tops of formula cans and allowed to dry before opening as well as each port before and after use, preventing decontamination. 4-hour expiration: breast milk feeding sets for all patients, syringe pump feedings sets (syringes and tubing), and formula feeding sets for NICU and immunocompromised patients, those with diarrhea and neonates less than 28 days old. 24-hour expiration: feeding sets for all other patient populationsFresh formula or milk should never be added to existing formula in a single feeding bag.
Educating Dahlia’s parents requires the presence of a translator. So far, they have learned the cues that she needs to be suctioned and how to perform it. Their next goal is that they learn how to properly clean and change her trach ties. Dahlia’s family needs to be able to recognize the signs and symptoms of desaturations and respiratory distress. Also, communication methods between Dahlia and her family should be addressed. Dahlia’s family home is currently unable to support the ventilators and other equipment that she requires so a facility with adequate resources needs to be identified and an open bed found for the present time. Dahlia should have been transferred to a long-term care unit this week.
Aims: to showcase the need for a written protocol for this procedure & contribute to knowledge of closed suctioning systems
Grand Rounds – Dahlia<br />Casey Burritt<br />Name changed*<br />
Introduction<br />Dahlia is a 2 year old girl who I cared for during my two days in the Transitional Care Unit (TCU)<br />She is expected to be discharged from TCU around the week of December 6 to a long-term care facility<br />During these days our focuses of care included monitoring her respiratory status and helping her meet her developmental milestones<br />This presentation will focus on these same goals of care for Dahlia<br />
History<br />Dahlia’s health history and assessment<br />
Dahlia’s Health History<br />Congenital encephalopathy manifested by bulbar palsy <br />History of both central and obstructive sleep apnea with manageable desaturations when sleeping<br />Admitted on September 16 for upper respiratory tract infection which complicated the sleep apnea causing more drastic desaturations<br />Tracheotomy performed on September 23 to relieve the obstructive apnea<br />Developmentally delayed – developmental age ranges between 2 and 8 months depending on the task<br />
Bulbar Palsy<br />Lower motor neuron syndrome <br />Partial or total paralysis of jaw, face, pharynx and tongue muscles<br />Effects articulation, especially consonants <br />Chewing and swallowing difficulties<br />Progressive disease that leads to aspiration, malnutrition, dehydration and inability to verbally communicate<br />McCance & Huether, 2006<br />
Family, Psychosocial, and Cultural Considerations<br />Dahlia’s family is Spanish-speaking only<br />This makes educating the parents about her care much more difficult and an interpreter is required on the unit whenever they visit<br />Dahlia is a twin, her brother was born with no health complications<br />She also has another brother who is older and who also has not had any major health problems<br />Her family lives on the Eastern Shore, making it difficult to travel to Norfolk very often.<br />They do visit nearly every weekend<br />They occasionally visit during the week if their work and family schedules allow.<br />
Hospitalization<br />Progressive desaturations while sleeping<br />Worsened by infection<br />Primary medical diagnoses<br />Infection<br />Treatment plan<br />Secondary diagnoses <br />Sleep Apnea<br />Bulbar Palsy<br />
Developmental Level & Care<br />A typical 2-year-old would be able to participate in activities in daily living and doing lots of talking<br />Adaptation of ADLs based on development<br />Complete dressing<br />G-tube feedings<br />Diaper changes<br />Adaptation of communication<br />Nonverbal and responded minimally to direction<br />Physical cues<br />
Nursing Care<br />Nursing Diagnoses and Plan of Care for Dahlia<br />
Systems Within Normal Limits<br />Cardiovascular<br />Genitourinary<br />Exceptions to the Normal Limits<br />Gastrointestinal<br />Musculoskeletal<br />Neurological<br />Psychosocial<br />Respiratory<br />Skin<br />Physical Assessment<br />
Concept Map<br />#1: Respiratory<br />Ineffective Airway Clearance / Impaired Gas Exchange<br />Membrane changes Sleep apnea<br />Mechanical ventilation BiPAPTrach<br />Dahlia will have adequate airway clearance and gas exchange as evidenced by maintaining O2 saturations>90% and clear lungs<br />#2:Risk for Injury<br />R/T seizure disorder<br />Constant “flapping” around<br />Dahlia will remain free of physical injury if she experiences any seizure activity<br />#5: Compromised Family Coping<br />Illness Social isolation<br />Parents aren’t close<br />Dahlia’s family will actively participate in caring for her<br />#6:Risk for Altered Nutrition: Less than Body Requirements<br />Tube feeding Increased kcal Decreased digestion<br />Dahlia will continue to receive adequate nutrition as evidenced by remaining between 40% and 60% on the weight/age growth chart<br />#4:Impaired Verbal Communications<br />Trach Doesn’t make sounds<br />Dahlia will be able to use some form of communication to relate effectively with her environment<br />#3: Developmental Delay<br />Not meeting proper milestones<br />Current goals are drastically regressed<br />Dahlia will meet the developmental goals set forth by her occupational therapy team,<br />
Respiratory<br />Risk for Injury<br />Compromised Family Coping<br />Impaired Verbal Communication<br />Developmental Delay<br />Risk for Altered Nutrition: <br />Less than Body Requirements<br />
Interventions<br />Impaired Airways Clearance/Impaired Gas Exchange<br />Careful assessment <br />Risk for Injury<br />Close monitoring of safety measures<br />Developmental Delay<br />Encouragement to meet goals<br />Impaired Verbal Communication<br />Learn her nonverbal cues<br />Compromised Family Coping<br />Encourage interactions and understanding<br />Risk for Altered Nutrition<br />Monitor I&O<br />Gulanick & Myers, 2007<br />
Institutional Policies<br />Policy 105-04-NF.06.7: Enteral Feeding<br />Hand hygiene, gloves and a mask (signs of cold) when handling feeding system<br />Allow all alcohol-cleaned surfaces to dry first<br />4 hour expiration <br />24 hours expiration<br />
Teaching<br />Discharge Planning<br />Translator<br />Suctioning<br />Clean & change trach ties<br />Desaturations<br />Respiratory distress<br />Communication methods <br />Home cannot support her<br />Adequate facility with open bed needed<br />Long-term care unit 12/6<br />
Research<br />100% Oxygenation – Yes or No?<br />
Research<br />Experimental self-controlled design with 30 participants<br />Aims: determine if 100% pre- and post-oxygenation is required to prevent hypoxemia<br />Inclusion by: 18+ years old, requiring mechanical ventilation, had an arterial line and hospitalized between September & December 2002<br />Determined that while helpful in increasing oxygenation levels, it wasn’t found to be exceptionally necessary in this population <br />
References<br />McCance, K. and Huether, S. (2006). Pathophysiology: The biologic basis for disease in adults and children (5th ed.). St. Louis: Elsevier Mosby.<br />Demir, F. and Dramali, A. (2004). Requirement for 100% oxygen before and after closed suction. Journal of Advanced Nursing 51(3): 245-251.<br />