What is really needed in monitoring children on Long Term Ventilation

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What is really needed in monitoring children on
Long Term Ventilation?

• Peter Fleming
• May 2004

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Monitoring children on LTV Purpose of monitoring

• Prevent complications of treatment or the
  underlying condition
• Optimise ventilatory support as the child grows
  and develops
• Maintain as normal a life as possible
• Support and facilitate the family and carers
• Minimise hospital admissions

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Monitoring Children on LTV

• Children on LTV are first and foremost
  CHILDREN.
• - i.e. The support and monitoring should aim to
  give them and their families as positive and
  normal an experience of life as possible.

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Monitoring children on LTV

• Depends on the nature of the underlying
  condition
• Airway problems - e.g. tracheobronchomalacia
• Neuromuscular- e.g DMD, SMA, Myopathy
• Respiratory control disorder- e.g. CCHS, Rett,
  PWS, Joubert
• Pulmonary - e.g. BPD, CF,
• Other -e.g. complex cardiac, metabolic.

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Monitoring children on LTV

• Multiprofessional
• Home-based
• General
• Specific to LTV
• Specific to underlying condition
• Hospital based

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Monitoring children on LTV Multiprofessional
reviews

• Led by community paediatrician
• Involves family and carers
• Attended by hospital based staff also
• Every 6-12 months
• Structured care plan reviewed and restated.

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Monitoring children on LTVHome based monitoring

• Adequacy of ventilatory support record SpO2 and
  ETCO2 every 3-6 months when well more
  frequently when unwell e.g. capnocheck
• oxygen monitoring alone is NOT adequate, as
  significant under- or over- ventilation will be
  missed.
• Monitoring without recording will also
  potentially miss significant problems

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Monitoring children on LTVGeneral

• Growth
• Development
• Underlying condition
• Effectiveness/safety of support people and
  equipment.

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Monitoring children on LTVSpecific to LTV

• Adequacy of ventilatory support
• ECG
• Echocardiogram
• Blood pressure
• (Chest Xray)
• Lung function

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Monitoring children on LTV Specific to the
underlying condition

• CCHS other autonomic problems e.g.
  Hirschsprungs, temperature, fluid balance,
  hormonal,arrhythmias, tumours,
• Neuromuscular muscle tone power, mobility,
  deformity, swallowing, secretions

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Monitoring children on LTV Hospital based
monitoring I

• Review progress of underlying condition
• Assess continuing need for support
• Assess adequacy of current support, and modify
  ventilator settings
• Non-invasive assessment of cardiorespiratory
  status e.g. ECG, Echocardiogram, Lung function

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Monitoring children on LTV Hospital based
monitoring II

• Assess spontaneous ventilation Vt, f, Ve,
  awake, in REM and in Non-REM sleep direct
  measurement plus measurement of SPO2 and ETCO2.
• NB ventilation is generally worse in REM in
  neuromuscular disorders or in airway obstruction,
  whilst in CCHS it is worse in Non-REM sleep.

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Monitoring children on LTV Hospital based
monitoring III

• Assess residual hypoxic respiratory drive
  safest by giving inhaled oxygen and monitoring
  effect on VT, frequency and Ve or by monitoring
  ETCO2.
• Children with depressed CO2 responses e.g.
  CCHS, or chronic neuromuscular disorders may
  rely on hypoxic drive, and develop severe
  respiratory failure if given inhaled oxygen.

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Monitoring children on LTV Hospital based
monitoring IV

• ? Assess response to inhaled CO2.- less important
  technical difficulties - ? Steady state (i.e.
  central chemoreceptor) or immediate (i.e airway
  /- peripheral chemoreceptor).
• - Predominantly a research tool at present.

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Monitoring children on LTV Hospital based
monitoring VI

• Assess adequacy of current support, and modify
  ventilator settings may involve use of invasive
  blood gas measurements though seldom needed.
• Non-invasive assessment of cardiorespiratory
  status e.g. ECG, Echocardiogram, Lung function

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Monitoring children on LTV Problems I.

• Non-invasive ventilation very difficult to
  record ETCO2 capnocheck is promising, but not
  fully validated need to view and check the wave
  form to assess accuracy
• All ETCO2 monitors tend to under-read in
  Non-invasive ventilation

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Monitoring children on LTV Problems II.

• No commercially available suitable equipment to
  measure VT or Ve in children.
• Extreme difficulty of measuring VT or Ve in
  Non-invasively ventilated children

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Monitoring children on LTV Problems III.

• Children seldom sleep normally when in hospital
  need a combination of home and hospital studies
  to assess condition and care.

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Monitoring children on LTV Problems IV.

• Deciding when to switch from invasive to
  non-invasive respiratory support
• Risks/benefits of two modes
• Childs cooperation invasive ventilation may be
  more comfortable child must want to change!
• Risk of mid-facial injury from face mask -? Up to
  what age

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Monitoring children on LTV Purpose of monitoring

• Prevent complications of treatment or the
  underlying condition
• Optimise ventilatory support as the child grows
  and develops
• Maintain as normal a life as possible
• Support and facilitate the family and carers
• Minimise hospital admissions

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Monitoring children on LTV

• Thanks to all the children and their families.