1. Monitoring on LTV Martin Samuels Bristol Course on Long Term Ventilation in Children

2. Objectives understand monitoring of the child on LTV know the methods available and when to apply them develop a framework for assessment & monitoring of children and young people on established LTV

3. Workshop Content devise a proforma for assessing the child on LTV discuss components of assessment, including physiological monitoring discuss follow-up discuss home monitoring

4. Devise a Proforma for Assessment You’re away when the following child attends your unit. A junior member of your team needs help on what needs review... 3 year oldRTCtrach ventilated 9 year old SMA pillows 15 year oldDMDmask ventilated 10 year old SLD & SDBmask Now decide on follow-up arrangements...

5. Assessment 1.Clinical progress 2.Equipment 3.Care package 4.Examination 5.Investigations 6.Communications & follow-up

6. 1. Clinical Progress Appetite & nutrition Feeding & swallowing Mobility Sleep RTI’s Use of antibiotics Hospital admissions School attendance / progress Ventilator use Disturbances: –alarms –leaks –disconnections Secretions / suction Parental coping Carers’ charts

7. 2. Equipment Ventilator: Settings Servicing Hour meter Dowload –Tidal volume –Minute ventilation –Leaks –Usage Interfaces –Check fit –Cleanliness –Complications Monitors Suction Tubing Humidity Oxygen

8. 3. Care Package Carers Nocturnal disturbances Supplies Respite Community team Social care & support Finance

9. 4. Examination Growth Nutrition Skin / stoma care Nose Chest Cardiac, incl PHT Spine Posture

10. 5. Investigations SaO2 Spirometry: –FVC / VC –FEV1 / MEF Sleep study: –SaO2 –tcPCO2 / ET-CO2 –P mask –synchrony

11. 5. Investigations SaO2 Spirometry: –FVC / VC –FEV1 / MEF Sleep study: –SaO2 –tcPCO2 / ET-CO2 –P mask –synchrony + consider: sputum MC&S CXR ECG peak cough flow nasal sniff pressure max Pi & Pe mouth occlusion P P 0.1 / P i-max

12. 6. Communications Check reviews: Physiotherapy SALT Dietician OT Psychology Neuromuscular Cardiology Spinal Community paed Immunisation –Flu –Pneumovax Emergency care plan Prescription check –Ventilator –Medicines Follow-up Transition

13. Adequacy of Gas Exchange O/P v I/P home invasive v non- invasive duration Measure SaO2 tcPCO2 end-tidal CO2 ? bicarbonate

14. Normal Short period of low baseline Whole night low baseline SaO2 Frequency Curves

15. 10 minute page mask pressure at patient

16. 30 second page mask pressure synchrony

17. mask pressure asynchrony

18. whole night trend SaO2 tcPCO2 heart rate

19. ATS Guidelines for DMD visit 4-6 years old & before loss of ambulation 6 monthly resp OP: –non-ambulant –FVC <80% –>11y old 3 monthly resp OP: –NIV –Cough Assist Review before surgery

20. ATS Guidelines for DMD At each visit: SaO2 awake CO2 FVC, FEV1, MEF Max Pi & Pe Peak cough flow FBC Bicarbonate CXR

21. Follow-up: Personal Practice referrals to respiratory OP Annual sleep study (DMD 12y) 6 monthly SS if SDB present Initiate LTV when symptomatic SS 3-6 months later Annual review

22. Reasons for Home Monitoring Recognition of: airway obstruction failure of respiratory support interruption of O2 prevention of sudden death cyanotic-apnoeic episodes worsening respiratory failure

23. Tracheostomy Related Death AuthorYearnSUDs% Wetmore8242082 Gerson8212310.8 MacRae849322 Freezer9014221.4 Puhakka923313 Simma9410800 Donnelly962900 Shinkwin965611.8 Dubey994012.5 Midwinter0214342.8 Total118720 (1 in 60) 1.7

24. Reasons for Home Monitoring Recognition of: airway obstruction failure of respiratory support interruption of O2 prevention of sudden death cyanotic-apnoeic episodes worsening respiratory failure

25. Oximetry – Motion Artefact Pulsatile component is 1 – 5% of absorbances Movement seriously affects measurement Results in frequent false alarms

26. Motion Resistant SaO2 – Masimo SET small, portable battery operable few false alarms Rad5 Oximeter Radical Pulse Oximeter

27. Suggested Home Monitoring Respiratory support: –none Life support: –SaO2 CCHS: –SaO2 & CO2 SenTec SaO2 & tcPCO2 Capnocheck SaO2 & ET-CO2

28. Investigations & Monitoring Varies between individual condition Individuals centres Limit in palliative care to symptom relief

29. Summary understand monitoring of child on LTV know the monitoring methods available and when to apply them develop a framework for assessment of children and young people on established LTV