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LIFE AFTER A TRACHEOSTOMY: Caring for your child before and after the trach. RICHARD M. KRAVITZ, MD PEDIATRIC PULMONARY AND SLEEP MEDICINE DUKE UNIVERSITY MEDICAL CENTER. WORKSHOP OVERVIEW. SMA background Respiratory care Non-invasive ventilation Tracheostomy Invasive ventilation

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life after a tracheostomy caring for your child before and after the trach

LIFE AFTER A TRACHEOSTOMY:Caring for your child before and after the trach

RICHARD M. KRAVITZ, MD

PEDIATRIC PULMONARY AND SLEEP MEDICINE

DUKE UNIVERSITY MEDICAL CENTER

workshop overview
WORKSHOP OVERVIEW
  • SMA background
  • Respiratory care
  • Non-invasive ventilation
  • Tracheostomy
  • Invasive ventilation
  • Ongoing care
  • Your child’s future
sma myths especially sma type 1
SMA MYTHS(especially SMA Type 1)
  • You have no hope
  • You have no choices
  • There is nothing you can do
  • Your child is going to die
  • You have no support
  • A tracheostomy is a sign of failure
sma facts
SMA FACTS
  • Treatment options are available (though they may be labor intensive and are more supportive, not curative)
  • Children with SMA of all types are doing better than ever before
  • There is currently no cure, but research is underway and therapies might yet be on the horizon
  • A tracheostomy represents just another a treatment modality
treatment options for sma type 1 the big picture
TREATMENT OPTIONS FOR SMA TYPE 1:The Big Picture
  • Take your child home and love them…
  • Aggressive respiratory support
    • NIPPV
    • Airway clearance and cough augmentation
  • Tracheostomy
    • Mechanical ventilation
    • Airway clearance and cough augmentation
  • Some combination of treatments
treatment options for sma type 2 the big picture
TREATMENT OPTIONS FOR SMA TYPE 2:The Big Picture
  • Supportive care is very similar to that used in Duchenne Muscular Dystrophy
  • Aggressive respiratory support
    • Airway clearance
    • Cough augmentation
    • NIPPV versus tracheostomy
  • Some combination of treatments
  • Good long-term outcomes
spinal muscle atrophy background
SPINAL MUSCLE ATROPHY BACKGROUND
  • For SMA Type 1:
    • left untreated, 90% die before 1 yo
  • Typical respiratory symptoms:
    • paradoxical breathing
    • pectus excavatum
    • (development of pulmonary hypoplasia)
  • Respiratory impairment (Bach data):
    • 10% develop respiratory failure < 6 mo
    • 70% develop respiratory failure with acute illness
      • undergo recurrent intubation
      • failure to be extubated is main cause for trachesotomy
    • 20% have symptoms between these 2 extremes
impact of neuromuscular weakness
Scoliosis

Restrictive lung disease

Impaired mucociliary clearance

Diminished cough

Increased risk of aspiration/reflux

Atelectasis

Pneumonia

Ventilation/perfusion mismatch

Hypoventilation (asleep/awake)

Obstructive sleep apnea

IMPACT OFNEUROMUSCULAR WEAKNESS
methods to assess respiratory muscle function
Pulmonary function testing

Spirometry

Lung volumes

O2/CO2 analysis

Blood gas (arterial, venous, capillary)

Pulse oximetry (SaO2)

Capnography (EtCO2)

Maximal respiratory pressures

MEP and MIP

Cough Peak Flow

Chest radiograph

Overnight oximetry/capnography

Polysomnogram

METHODS TO ASSESS RESPIRATORY MUSCLE FUNCTION
causes of respiratory morbidity and mortality
Inadequate cough

Retained secretions

Mucus plugging

Atelectasis

Hypoxia

Respiratory distress

Respiratory failure

Inadequate airway clearance

Quantity of secretions

Quality of secretions

Inadequate ventilation

Hypoxia

Hypoventilation

Respiratory distress

Respiratory failure

Cough and Ventilation Worsen With Respiratory Illnesses!

CAUSES OF RESPIRATORYMORBIDITY AND MORTALITY
interventions to aid airway clearance
INTERVENTIONS TO AIDAIRWAY CLEARANCE
  • Mucociliary clearance (non-pharmacologic)
    • Manuel chest physiotherapy
    • Intrapulmonary percussive ventilation (IPV)
    • High frequency chest wall oscillation (The Vest)
    • (bronchoscopy)
  • Mucociliary clearance (pharmacologic)
    • Albuterol; Pulmozyme; Mucomyst
  • Cough augmentation
    • Inspiratory phase; contraction phase; expiratory phase
cough augmentation
COUGH AUGMENTATION
  • Inspiratory component

Glossopharyngeal breathing (air stacking)

Positive pressure assist (ambu bag)

Intermittent positive pressure ventilation (IPPV)

Mechanical ventilator

  • Expiratory component

Abdominal/chest wall thrust (less effective with scoliosis)

  • Combined

Mechanical in-exsufflator (Cough Assist)

respiratory symptom progression
RESPIRATORY SYMPTOM PROGRESSION
  • Normal (asymptomatic)
  • Weakened cough

Usually adequate when well

Problems develop with infections

Can lead to (recurrent) pneumonia/bronchitis

  • Nocturnal symptoms
  • Daytime symptoms
respiratory intervention progression
RESPIRATORY INTERVENTION PROGRESSION
  • Normal (asymptomatic)
    • No treatment needed
  • Weakened cough
    • Assist in airway clearance (required with viral illnesses)
      • Assisted cough
      • Chest physiotherapy
    • May require NIPPV (if hypoxic or in respiratory distress)
  • Nocturnal symptoms
    • Nocturnal BiPAP or volume ventilator when asleep
  • Daytime symptoms
    • Continuous ventilation
    • Non-invasive versus tracheostomy (in select patients)
assisted ventilation
ASSISTED VENTILATION
  • Negative pressure ventilation

Iron lung/Portalung

Cuirass

Pneumowrap (Poncho)

  • Positive pressure ventilation

BiPAP or volume ventilator

Non-invasive versus invasive route

postitive pressure ventilation advantages of the non invasive route
Advantages

Non-invasive

Reversible

Safe

Effective

Preserves (natural) airway protection mechanisms

Decreased risk of infection

Comfort

Preserves speech

Less swallowing issues

Disadvantages

Lack of access to airway for deep suctioning

Aerophagia

(worsened reflux)

Facial injury

Facial bone remodeling from tight fitting mask

Increased oral secretions

Requires cooperation of the patient

POSTITIVE PRESSURE VENTILATION:Advantages of the Non-Invasive Route
nippv complications
Nasal/oral dryness

Epitaxis

Nasal congestion

Sneezing

Rhinorrhea

Sinusitis

Claustrophobia

Mask irritation

Nasal abrasions

Aerophagy

Mouth leak

Facial deformities

(Decreased cardiac output)

NIPPV COMPLICATIONS
tracheostomy indications
TRACHEOSTOMYIndications
  • NIPPV no longer effective at treating hypoventilation
  • NIPPV not tolerated by the patient
  • Excessive oral secretions puts patient at risk for aspiration
  • Care for patient with NIPPV beyond the capabilities of the family
  • Resources for outpatient management with NIPPV not available in the community
  • Failure to extubate patient who has been intubated (for what ever reason). This assumes proper methods of extubation were employed
tracheostomy advantages for patient
TRACHEOSTOMY:Advantages for Patient
  • Allows for assisted ventilation
  • Airway is protected from aspiration
  • Increased ease in suctioning excessive secretions (if needed)
  • No NIPPV mask pressure sores or facial remodeling
  • Treats obstructive sleep apnea (if present)
  • In select cases, may be a temporizing measure until extubation is possible
tracheostomy advantages for family
TRACHEOSTOMY:Advantages for Family
  • Freedom
    • night out for the parents
    • more mobility
      • getting to doctor’s office/hospital
      • shopping
      • vacations
  • Increased support in the home
    • more skilled nursing care
    • more nursing aid hours
    • (make sure you have a good case manager)
tracheostomy disadvantages
Unsightly

Diminished cough

Risk of infection

Secretions

Speech problems

trouble understanding child

never develop speech

loose ability to speak

Dysphagia

Bradycardia

Desaturations

Ventilator dependency

Loss of airway (if the tube comes out)

Increased hospitalizations

Suprastomal damage

granulation tissue

airway collapse

Subglottic damage

granulation tissue

tracheomalacia

tracheomegaly

tracheal erosions

fistula formation

Subglottic stenosis

Bleeding

suction catheter trauma

arterial erosion

TRACHEOSTOMY:Disadvantages
hospitalization rates bach data
Tracheostomy

< 3 years old

0.58 admissions/year

> 3 years old

0.21 admissions/year

NIPPV

< 3 year old

1.52 admissions/year

> 3 years old

0.2 admissions/year

> 5 years old

0 admissions/year

HOSPITALIZATION RATES(Bach Data)
tracheostomy infections
TRACHEOSTOMY:Infections
  • Keeping the tracheostomy site clean
  • Colonization versus infection (tracheitis versus bronchitis versus pneumonia)
    • Pseudomonas
    • Other organisms
  • Use of antibiotics
    • Topical versus oral versus IV versus inhaled
  • Changing out the tracheotomy tube
    • How frequently (usually weekly)
    • Indications
tracheostomy mechanical considerations
TRACHEOSTOMY:Mechanical Considerations
  • Indication for tracheostomy will help determine choice
    • airway protection
    • assisted ventilation
  • Size of tracheostomy tube
    • small enough to allow for speech
    • large enough to allow for adequate ventilation
  • Cuffed or uncuffed (or fenestrated)
    • uncuffed preferred for children
    • cuffed with deflated cuff is another option
  • Humidification
    • humidifier
    • artificial nose (HME)
  • Speaking valve (Passy-Muir Valve)
  • Swallowing function
    • speech therapy needs to be involved
tracheostomy ventilation
TRACHEOSTOMY:Ventilation
  • Duration of ventilation
    • Nocturnal (capping tracheostomy tube during the day)
    • On demand daytime ventilation
    • Continuous daytime ventilation
  • Portability of ventilator
    • Easily attaches to the wheelchair
tracheostomy ongoing care
TRACHEOSTOMY:Ongoing care
  • Continue airway clearance (as before)
  • Continue cough augmentation (as before)
  • Continued aggressive care with URIs (as before)
  • Continue aiding ventilation
    • Supplemental O2 is (in general) still not to be used
  • Routine ENT follow up
    • Follow up every 6-12 months
    • Routine bronchoscopy
tracheostomy decannulation
TRACHEOSTOMY:Decannulation???
  • More likely to occur in SMA Type 2
  • Close ENT follow up required
  • Two methods of decannulation:
    • gradual tracheostomy tube downsizing
    • bronchoscopy and one-step decannulation
  • Closure of stoma
  • Acute versus late onset airway obstruction
tracheostomy quality of life issues
TRACHEOSTOMY:Quality of Life Issues
  • The family unit
    • limited data (especially with children)
    • the perspective varies:
      • the patient
      • the parents
      • the siblings
  • The medical team
    • health care providers ≠ the family
    • health care providers frequently underestimate the patient’s quality of life!
equipment needed for the home
EQUIPMENT NEEDED FOR THE HOME
  • Mechanical in-exsufflator (Cough Assist)
  • Pulse oximeter
  • (Airway clearance):

Chest PT or The Vest or IPV

  • BiPAP or volume ventilator (when needed)
  • Suctioning equipment
  • Tracheal supplies
  • (nebulizer)
tracheostomy required home equipment
TRACHEOSTOMY:Required Home Equipment
  • Extra tracheostomy tubes
    • current size and smaller
  • Humidification
  • Suctioning (pre-measured catheters)
  • (Monitor)
    • apnea-bradycardia monitor
    • pulse oximeter
  • Caregiver education
    • basic tracheostomy care
    • CPR
tracheostomy long term follow up
TRACHEOSTOMY:Long-term follow up
  • Otolaryngology
    • airway care
    • bronchoscopy
  • Pulmonary Medicine
  • Speech Therapy
    • speech
    • swallowing function
  • Respiratory Therapy
    • equipment review
  • (Home) Nursing
  • Social Work
multidisciplinary health care team
Pulmonologist

Neurologist

Orthopedist

Sleep physician

1o Care physician

Nursing

Nutritionist

Respiratory therapist

Physical therapist

Occupational Therapist

Speech Therapist

Social work

(Palliative care)

MULTIDISCIPLINARYHEALTH CARE TEAM
key points regarding a trach
KEY POINTS REGARDING A TRACH
  • Elective tracheostomy is better than emergency tracheostomy
  • Long-term treatment plan is best determined in times of health. The middle of an acute decompensation (especially one which was predictable) is not the best time to be making these types of decisions
things to remember
THINGS TO REMEMBER
  • Every child is unique
  • You are your child’s best advocate
  • The decisions you make regarding your child’s care are the correct ones for your family
  • You are part of team caring for your child (actually, you are the captain, so the call is yours), but don’t be afraid to ask for input and be open to your health care team’s recommendations
  • You are not alone. There are many support groups out there to help you. Get involved!