Download - INITIATING long term ventilation
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Martin Samuels
University Hospital of
North Staffordshire
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why?
when ?
how ?
where?
what with?
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Failure of
resp pacemaker
nerve conduction
muscle contraction
airway patency
gas exchange
combination
CCHS
infection, trauma
DMD, SMA
severe TBM
CLD of prem, CF
neurodisability,
obesity
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at presentation:
birth
after trauma
after infection
with acute
respiratory illness
eg
CCHS, CLD
operative, RTC
myelitis
myopathy, CF
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Conditions Presenting with
Progressive Respiratory
Failure
myopathy
neurodisability
obesity
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Hereditarymuscular dystrophiesmyopathiesspinal muscular atrophyhereditary sensory nmyotonic dystrophy
Work with colleagues in muscle disorders
AcquiredpolioGuillain-Barrepolymyositismyasthenia gravis
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Dubowitz et al (from JTSMA)
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myotonic dystrophy
spinal muscular atrophy
II
neuropathy
nemaline rod myopathy
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Duchene MD
- median fall FVC 0.18L/y
- median survival 3.1y
- 5y survival 8%
Phillips et al, 2001
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early recognition
symptoms
LFT’s
SaO2 & CO2 monitoring
awareness of treatment options
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SenTecSaO2 & tcPCO2
Capnocheck SaO2 & ET-CO2
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Apr 2002 - 14y - DMD care plan for terminal care: no CPR,
intubation or ‘active’ intervention referral for respiratory assessment
May 2002 Found unresponsive at home… A&E CO2 found to be 11.6 kPa
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May 2002
admitted for sleep study
would not wake: pCO2 27 pH 7.0
bagged: pCO2 19
nPPV no better – agreed not for ETT
family counselled
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Intubated for 3/7
Prednisolone
Extubated
Discharged nPPV
Cough Assist
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Insidious onsetpatients appear normal when awake
REMsleep
all sleep awake
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• Nocturnal arousals
• Behavioural and cognitive problems
• Daytime drowsiness / poor concentration
• Failure to thrive
• Morning headaches
• Recurrent / severe LRTI’s
• Cor pulmonale (late)
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Fall in VC hypoxaemic-apnoeic episodes rise in CO2 & fall in SpO2 in REM sleep first lastly, during day
Overnight record of SaO2 & CO2 ? age 10 – 12y ? VC <30%, 50%, 60% …
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SaO2
Whole night: 8h
Heart rate
Transcutaneous pCO2
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Mail questionnaire: Canadian physicians
Response rate 45/60
25% do not discuss mech vent with all
patients & families
Most frequently cited reason for advising
against / withholding ventilation was
poor quality of life (52.6%)
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progressive respiratory failure quality of life reduced:
symptoms repeat / severe LRTI hospitalisation
compliance likely
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improves symptoms
keep out of hospital
ease care by parents
reduce complications
use in overall care
plan
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“No purpose” situation: degree of physical or mental impairment will be so great that it is unreasonable to expect them to bear it
“Unbearable” situation: child and/or family feel that in the face of progressive and irreversible illness further treatment is more than can be borne
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Assessment Consult Discuss with family “Decisions must
never be rushed and must always be made by the team with all evidence available.”
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Hospital v Home
training
troubleshooting
adjustments
PICU v HDU v ward
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Breas Vivo
Respironics Synchrony
Resmed VPAP
B&D Nippy
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Face v nasal mask v prongs
Sizing Humidity Complications Monitoring
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Mask intolerance
Skin sores
Dry eyes
Rhinitis
Air swallowing
? Facial deformity
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30 second page
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physiotherapy
immunisation
antibiotics
nutrition
Rx of GORD
in-exsufflator
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Why are we initiating this?
Have we consulted / discussed?
How are we going to do it?
Where are we doing this?
What are we going to monitor?
What about discharge?