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					   Impact of Chronic Illness,
disability, or death on the child
           and family
       scope of the problem
      changing trends in care
       •reactions of families
   – shock and denial, disbelief
   – adjustment
       benevolent over reaction

 developmental concepts of death
   – toddler
   – school age
   – adolescent
     •Provide support at time of
    –   assess available support systems
    –   assess perception of the illness/disability
    –   assess coping mechanisms
    –   assess available resources
   strategies for intervention for survivors
    of children who have died
             Mental Retardation
 Introduction
 Definition
 Classifications
    –   Mild 55-70
    –   Moderate 40-55
    –   Severe 24-40
    –   Profound <25
        Signs and Symptoms
  – Motor delay
  – Cognitive delay
  – Delayed vision, language and hearing
 Nursing Care
  – Nursing Implementation
         Down’s Syndrome
 Definition
 Pathophysiology
      Signs and symptoms
– mental retardation from mild to severe
– congenital heart defects
– altered immune function
– distinctive facial appearance
    microcephaly with flat occiput

    oblique palpebral fissures (upward,
     outward slant)
    inner epicanthal folds
Nursing Care of Down syndrome
 – Assist with prenatal diagnosis of Downs
   syndrome; aminocentesis
 – Support family at time of diagnosis
 – Assist family in preventing physical
   problems/ enroll in EIP (Early
   intervention program)
 – Prevent respiratory infections
     Conductive loss-disorder in
      auditory canal; eardrum
 Physiology - external ear; middle ear, inner
 Conductive loss - results from interference
  of transmission of sound to the middle ear
    – causes= most common cause of hearing loss
      in children is chronic otitis media
                Otitis Media
   Pathophysiology
     – Causative organisms are Haemophilus
       influenzae and Streptococcus
     – short, horizontally positioned Eustachian
     – accumulation of secretions in the middle
       ear, Eustachian tube dysfunction allows
       bacterial invasion of the middle ear and
      Signs and Symptoms
– pain from accumulation of purulent fluid
– malaise; irritability;
– infants are irritable, tug at ears, or roll
  head from side to side
– fever varies greatly; but may go as high
  as 104
– rhinorrhea, cough, loss of appetite, v/d
– post auricular and cervical adenopathy
  (enlarged lymph tissue can obstruct
  Eustachian tubes)
– otoscope shows bulging tympanic
  membrane with no visible landmarks or
  light reflex; tympanic membrane may be
  red, and bulging
– purulent discharge
              Nursing Care
   – antibiotics as ordered amoxicillin or
     ampicillin for 10-14 days; analgesics;
   – encourage fluid intake
   – pt teaching re: bottle with bedtime
 Myringotomy with insertion of P/E
  (pressure equalizing) tubes
          Visual Impairment
 Definition: a problem with visual acuity that
  may or may not be correctable with
  prescriptive lesions
 Assessment findings
         Refractive errors
– myopia- the refractive error that occurs
  when light is focused anterior to the
– excessive tearing, rubbing or blinking,
  complaints of blurred or double vision,
  headaches, eye pain
– squinting or holding books close to the
  face, difficulty reading blackboard
– hyperopia
         structural anomalies
  – strabismus (cross eyes) a normal
    occurrence until age 4 months
      cover/uncover test

  – amblyopia or lazy eye
 Corrective therapy - refer to opthamologist
  – Rx glasses, contacts
  – eye muscle exercises, patching,
  – eye muscle surgery
             Croup syndromes
   Acute Laryngotracheobronchitis (LTB)
       viral infection causes: parainfluenza virus,
        adenovirus, RSV
       affects more boys than girls; age 6months- 8 years

       incidence peaks in winter months

    – Pathophysiology
       starts as an URI
       inflammation of the larynx, trachea, and major
       larynx is flexible and is susceptible to spasm, may
        cause complete airway obstruction
 inspiratory  stridor; rales, rhonchi,
  expiratory wheeze
 substernal and suprasternal
 barking cough, hoarseness,sore
 pallor; restlessness, irritability
 low grade fever
   Diagnosis is based on symptoms of the
    child; LTB is distinguished from epiglottis
    by a lateral neck xray showing a normal
       Nursing Care
 Assessment  of Airway should include:
  –changes in mental status
  –activity level and complaints of
  –skin color changes, particularly
  –respiratory rate and pattern,
   presence of apnea
  –intracostal retraction
  –adventitious lung sounds
        Nursing Care
give aerosol epinephrine a/o via
 nebulizer to increase
 vasoconstriction and to reduce
 airway swelling
give corticosteroids to reduce
 inflammation a/o
reduce child’s anxiety
  Epiglottitis most life
H influenzae type B
peak years 3-6year old

preceded by an URI, but
 progresses rapidly
 may   lead to complete upper airway
 hypoxia, hypercapnia and acidosis

 ET tube is performed to maintain an
  airway. swelling usually decreases
  after 24 hours, and the child is usually
  extubated by the third day.
 tx: antibiotics for 7 to 10 days

sudden   onset of symptoms,
 preceded by an URI
sore throat, pain on
 swallowing, refuses to eat;
high fever> 102.2

 characteristic  positioning:
 sitting upright, leaning forward,
 chin outthrust, mouth open and
 tongue protruding (tripod
wheezy, inspiratory stridor and
 froglike croaking sound on
suprasternal and substernal
tachycardia, thready pulse
   on inspection, throat appears red and
    inflamed with a large, cherry-red
    edematous epiglottis. throat inspection
    should only be done by a trained person
    with equipment ready for endotracheal
    intubation or tracheostomy since exam
    may precipitate complete airway
    lateral neck film showing epiglottal
    elevated white blood cell count and
    increased bands and neutrophils on diff
    identification of causative bacteria through
    blood cultures
   Chronic, episoic, obstructive disorder
    characterized by airway narrowing due to
    bronchospasms, increased mucous
    secretion, and mucosal edema
– commonly results from allergic
  hyperresponsiveness of the trachea and
  bronchi to irritants
– familial tendency is seen
– tends to be more severe in younger
  children, improvement seen in
– Bronchospasm
– accumulation of bronchial secretions
– edema of bronchial mucosa
– dyspnea, air hunger, nasal flaring
– anxiety
– hacking non productive cough
– wheeze (expiratory)
– fatigue
– c/o chest tight
– tachypnea
– substernal, suprasternal and
  intercostal retractions
– diaphoresis
             Nursing care
– Long term control medications
    Long acting beta-adrenergics, to promote
    Low dose inhaled corticosteroid- to reduce
      – risk for death from asthma reduced =20%
    Leukotrienemodifiers
    Methylxanthines
    Cromolyn sodium
                Nursing care
– Quick relief medications

– Antichlinergics (atropine and Atrovent)

– Beta Adrenergic agonists (short acting)
      Albuterol, xopenex, terbutaline
          Nursing care
– Peak flow meter
– Meter Dose Inhaler with spacers
– perform CPT and suctioning as needed
– promote rest. schedule activities to
  prevent fatigue
Teaching about diagnosis
 diagnosis; sign and symptoms of acute
  attacks and treatment
 ways to identify and eliminate specific
 promote overall physical and
  psychological well being
Teaching about diagnosis
  keep hydration to keep secretions from
  physical activities equal to child’s
  breathing exercises, inhalation therapy,
   and chest physiotherapy
  drug administration and side effects
               Cystic fibrosis
   a chronic inherited disorder of the exocrine
    glands characterized by abnormally thick
    respiratory secretions and other multisystem
– inherited autosomal recessive
– defect is related to protein or enzyme alteration
– increased viscosity of bronchial mucous leading
  to obstruction and bacterial growth
– chronic progressive pulmonary fibrosis
– disturbed absorption of fat and protein, leads to
  excessive fat and protein in stool
– pancreatic deficiency of digestive enzymes
– elevation in sweat electrolytes
        respiratory system
 has wheezing and dry, nonproductive
 progressive obstruction with secondary
 increased dyspnea and cough

 repeated episodes of bronchitis and
 obstructive emphysema; barrel shaped
  chest, cyanosis, clubbing of fingers
gastrointestinal dysfunction
 meconium   ileus in newborns; small
 obstruction of pancreatic ducts and
  absence of pancreatic enzymes
  (trypsin, amylase, and lipase)
 decreased intestinal absorption of fats
  and protein with increased stool
 chronic  diarrhea with large, frothy,
  foul-smelling stools steatorrhea
 abd cramps, weight loss despite
  increased appetite
 overall malnourished and vitamin
  deficient state
 obstruction of bile ducts manifested as
  cirrhosis, leading to portal
  hypertension with splenomegaly and
  esophageal varices
salivary and sweat glands
 increased   sodium and chloride
 child tastes salty when kissed
– elevated sodium and chloride levels on
  sweat test
– absence of pancreatic enzyme activity
– steatorrhea bulky and frothy
– xray show obstructive emphysema
           Nursing care
– respiratory:
    encourage pulmonary measures to aid
     sputum expectoration;
    chest physiotherapy, postural
     drainage, aerosol treatment with
     bronchodilator and breathing exercises,
    aggressive treatment of respiratory
     infection with antibiotics
            Nursing care
– nutrition:
    diet is high calories and high protein
     with fats as tolerated and increased salt
     intake during hot weather or febrile
    pancreatic enzymes with food
     (pancrease and Cotazym-S)
    encourage adequate fluid intake
 Acute inflammation of the lungs
  (bronchioles, alveolar ducts, alveolar sacs
  and alveoli) that impairs gas exchange
 viral, bacterial, mycoplasma or foreign body
    – viral: RSV, H. influenza and parinfluenza
    – bacterial: pneumococci, strepticocci,
classified according to location
           and extent
– lobar pneumonia- involves a large
  segment of one or more lung lobes
– bronchopneumonia- begins in terminal
  bronchioles and involves nearby lobules
– interstitial pneumonia- involves alveolar
  walls and peribronchial and interlobular
   Assessment/Lab Data
   diminished   breath sounds, rales,
    subcostal and sternal retractions

– elevated white blood cell count
– blood cultures show causative agent
           Nursing care
– assess for respiratory distress
– ease respiratory efforts
– Promote rest by maintaining bedrest and
  organizing nursing care to minimize
– anti pyretics for fever
    Tuberculosis causative agent =
     mycobacterium tuberculosis
 transmitted by droplet
 s/s - initially causes few if any symptoms
 additional symptoms may be fatigue,
  persistent cough, anorexia, wt loss and
 mantoux skin test/ CXR/gastric washings
 nursing care is aimed at preventing the
  spread and preventing complications
 chemotherapy
   Defn: significant loss of water and
    electrolytes from decreased fluid intake or
    vomiting, diarrhea. fluid output>fluid
    – expressed as a % of body weight lost
    – ISOTONIC- deficiency of fluid and electrolytes
      in approximately equal proprotions; most
      common type, linked to 70% of the cases
– urine output
– weight
– I/O
– skin turgor, fontanels in the infant,
– tears, eyeballs, thirts, mucous membranes
– assess lethargy, irritability, feeding
      Rehydration measures
– oral rehydration solutions such as
     Pedialyte
– fluid replacements such as pedialyte,
– do not give solutions with a high sodium
  content, like milk or broth
– IV fluids if child is hospitalized
   Defn: return of gastric contents into the
    esophagus from an incompetent or poorly
    developed esophageal sphincter
    – occurs almost immediately after eating and
      typically affects premature infants and young
      children with spastic cerebral palsy due to
      decreased muscle tone
   pathophysiology - area of lower esophageal
    sphincters (LES) relax
       categories of GER
– physiologic reflux- emesis occurs
– functional reflux = emesis more frequent;
  not associated with other symptoms such
  as FTT, pulmonary problems or pain
– pathologic reflux= physical problems as
  result; aspiration pneumonia, FTT,
  recurrent pulmonary problems, apnea
– look at the vomiting in relation to
  feeding, (amount and frequency of
– type of feeding?
– Positioning during and after feeding?
  Burping? and the activity level after
– pattern of emesis? Frequency and
– Upper gi series; esophageal ph probe
– feed the child in upright position
– provide thickened formula (1tbs cereal/ 1
  oz formula)
– administer medication 30 minutes before
– give small frequent feedings
– Reglan
– surgical intervention Nissen
        Cleft lip and cleft palate
   Defn
    – Cleft lip and cleft palate is a congenital
      failure of the bone and tissue of the upper
      jaw and palate to fuse completely
    – may be partial or complete, unilateral or
      bilateral, and may just involve the lip,
      palate or both
    Cleft lip and cleft palate
– cleft lip can vary from slight notch to a
  complete separation from the floor of the
  palate to the nose
– cleft palate can include nasal distortion,
  midline or bilateral cleft, with variable
  extensions into the uvula and soft and
  hard palate
– Causes include genetic, hereditary, and
  environmental factors
– assess the ability to suck, swallow and
– assess ability to handle normal secretions
 Implementations of nursing
– Modify feeding techniques to facilitate
  growth: ESSR method of feeding
    ENLARGE the nipple to allow food to
     be delivered to back of throat without
    STIMULATE sucking by rubbing the
     nipple on the lower lip

    REST
      Implementation of nursing
   Use specialized feeding techniques, and
    special nipples and feeders for the child
    unable to suck on a standard nipple
     – hold the child in an upright position and
       direct the formula to the side and back of
       the mouth to prevent aspiration
     – feed small amounts gradually
     – burp frequently
     – increased risk of aspiration, and upper
       respiratory infection and otitis media
      Surgical intervention
– cleft lip is usually repaired around age 4
  weeks; may be done earlier with cosmetic
– cleft palate repair is done between 6
  months and 2 years
– long term my require EIP; address speech
  defects, dental, nasal defects and hearing
  problems and orthodontic problems; may
  cause shock and guilt and grief for the
  parents and may block parental bonding
             Celiac disease
 Defn: an inability to tolerate foods
  containing gluten
 result from an inborn error or metabolism or
  an abnormal immunologic response
– inability to digest gluten found in wheat,
  barley, rye and oats
– results in accumulation of the amino acid
  glutamine which is toxic to intestinal
  mucosal cells
– intestinal villi atrophy = reduces
  absorptive surface of small intestine and
  affects absorption of ingested nutrients
– frequent bulky, greasy , malodorous
  stools with frothy appearance due to fat,
  protein and carbohydrates
– abd distention, vomiting, abd pain
– characterized by flare ups of symptoms
  caused by infections, fasting, ingestion of
– Promote optimal nutrition through
  education and support of dietary
    gluten free diet

    supplemental vitamin, calcium, iron
     and folate
    foods prohibited:

      –milk, grains, like bread, cookies,
        cakes, crackers, cereals, spaghetti,
       Hirschsprung’s disease
       (congenital aganglionic
 Defn: a congenital anomaly resulting in
  mechanical intestinal obstruction due to
  inadequate motility in an intestinal segment
 4X more common in males, associated with
  Down syndrome
– absence of autonomic parasympathetic
  ganglion in one segment of colon causes
  lack of innervation in that segment
– absence of propulsive movements, causes
  accumulation of intestine contents and
  distention of bowel(Megacolon)
– Newborns= failure to pass meconium,
  reluctant to ingest fluids, abd distention
– infants= FTT constipation, abd distention,
  vomiting, diarrhea
– toddlers/older children= chronic
  constipation, foul smelling stools, abd
  distention, visible peristalsis, palpable
  fecal mass, malnourishment,anemia
– children with mild symptoms may be
  managed conservatively, with enemas,
  stool softeners and a low residue diet
– manual dilatation of the anus, enemas,
  diet, then surgery to remove the
  aganglionic segment of the colon and
  temporary colostomy
   Defn: invagination of one portion of the
    intestine into adjacent distal portion,
    causing obstruction
    – invagination commonly begins with
      hyperactive peristalsis in an intestinal segment,
      often at the ileocecal valve
 Tx: barium enema, surgery
 if left untreated, bowel strangulation may
      Abdominal wall defects
 hernia= protrusion of the bowel through an
  abnormal opening in the abd wall; most
  commonly at the umbilicus and the inguinal
 umbilical hernia, incomplete closure of the
  umbilical ring results in protrusion of
  portions of the omentum and intestine.
  defect usually closes spontaneously by the
  age of 3 to 4 years surgical correction is
           Pyloric Stenosis
 Defn: narrowing of the pyloric sphincter at
  the outlet of the stomach
 hypertrophy and hyperplasia of the circular
  pyloric muscle. the muscle may grow to
  twice its normal size
 obstruction of the pyloric sphincter with
  gastric distention, dilatation,and
– increasing force and frequency of vomiting;
  leading to projectile vomiting
– ferocious appetite and no evidence of pain
– weight loss
– palpable olive shaped mass in the epigastrium
  just to the right of the umbilicus
– visible gastric peristaltic waves moving from
  left to right
TX: surgery; pyloromyotomy
   Hockenberry, M. (2009). Wong’s essentials
    of pediatric nursing. 8th ed. Mosby Elsevier,
    St. Louis, MO.

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