Challenging Cases - Discussions with PCCN

By

Fatima Zahir

Consultant Paediatrician

Sandwell and West Birmingham NHS Trust

Four different children who presented to our hospitals

Interactions within our own team

Interactions between specialties

Complexities of managing unique situations

Guidance, support and feedback from the network.

Introduction

Case 1 A series of referrals

18/12 girl SMA type 1 / 2

5 critical care presentations over 2017-2018

September 2017 – admitted with respiratory illness in extremis – placed onto AIRVO then intubated 2 weeks later

October 2018 Admitted onto AIRVO then intubated a week later

Admitted onto AIRVO and transferred out to Heartlands for induction of BIPAP

Background

Induction on BIPAP

Home BIPAP machine given for overnight use

Attendance less frequent. – next referral Aug 2018 – HDU transfer with paramedic and Nurse on BIPAP

September 2018 – HDU transfer on BIPAP with paramedic and nurse

Heartlands Journey

Patient Journey

Pre-BIPAP

Lingered on AIRVO for weeks

Waiting for her to deteriorate

Unneccessary suffering for a child

At the mercy of a stretched DGH and network in winter

Disengaged angry mum who refused to come in until child in extremis

Post BIPAP

Child more stable when she comes in

Earlier presentation with calm mum

More comfortable quick transfer on BIPAP

Heartlands expects her / knows her

Not being sent to PICU that mum cannot travel to

Winters – the pressure is on us – without the safety of knowing if there will be a place for HDU level 2 children

More children with SMA – where will they go? BIPAP training BIPAP machines Visiting other units How can KIDS and the network help?

Guidance on courses Guidance on nurses Recommendations on nursing and medical training / numbers / support Drop in support when we are desperate KIDS occasionally has a second team in case of multiple referrals

Our Unit Journey and KIDS discussions

Case 2 A difficult airway

Presentation

18/12 boy

Ambulance call

Acute respiratory distress and marked stridor

Background

Ex-37/40 BW 1.7 kg

First 7 weeks on NICU

Diabetes Insipidus

Undescended Testes

Hypospadius

Single Umbilical Artery

Sacral dimple

Failure to thrive

Tracheal stenosis

Tracheal balloon dilatation 24/11/17

Slide tracheoplasty 22/05/18 at GOSH

Recurrent respiratory exacerbations

Severe gastro-oesophageal reflux disease

Unsafe swallow

Naso-gastric feeds discontinued by mother since July 2018

Assessment

Respiratory

Marked inspiratory stridor

See-saw breathing

Saturations with mid 90s with oxygen from ambulance crew

Kyphoscoliosis and tracheoplasty mid sternal scar

Systemic

CVS – tachycardic, normal CRT / Normal BP

Abdominal examination Normal

Management

Immediate

ABC / monitoring

Nebulised adrenaline and budesonide

NGT dexamethasone

ENT team BCH contacted

ENT and paediatric teams SWBH contacted

Subsequent

Repeat adrenaline nebulisation

IV Access attempted when calmed down

Conference call KIDs / BCH ENT / Paeds SWBH – urgent transfer required – KIDS coming

Outcome

Local ENT team felt this was out of their remit

Joint decision for un-intubated transfer

Reviewed in A&E at BCH

Went up to theatre for videoscope and granuloma found and managed.

Safe monitored extubation in PICU.

Discussion

Went well

Rapid intervention by ED/ Anaesthetic / Paed staff – adrenaline neb, crash call to Paeds and contacted the BCH services

Excellent joint working – ED / Paeds / local anaesthetist / KIDS / ENT BCH to provide safe outcome for child

We are improving

ENT felt the child was too complex to attend

Difficult airway policy now drafted and

Awareness of supporting colleagues in complex situations which are arising more often

CASE 3 Where should this child go?

Background

Wolf-Hirschorn syndrome

Epilepsy

Global developmental delay

NG fed

3 previous PICU admissions (last 2017)

Presentation

Known to BCH/ Community Paediatrics

Status Epilepticus

Intubation and Ventilation

Very difficult access/ failed I.O

NO PICU bed in UK

Retrieval team not available for several hours

Discussion KIDS- ITU bed locally, trial extubation locally. Aware may fail extubation/recurrence of seizures.

Difficult interactions

ITU feel complex background of child/history of epilepsy/ busy ITU –do NOT want to admit.

Further discussions with KIDS/Paeds , child admitted to Theatres. Anaesthetic Reg/Paed Consultant/later Paed Reg.

Successful Extubation, admission to Paed HDU.

ISSUES: Difficult access/Disagreement on where child should be admitted/disagreement on whether child still fitting/support for team members

Winter pressure mean straightforward seizures may need to be extubated locally

Discussions and policies need to be arranged locally

Kids will support extubations

Difficulties in communication within the Multidisciplinary team affect patient care

Discussions with Network

Case 4 A ‘stable’ child requiring KIDS

Background

13year old morbidly obese Severe Learning Disability (non-verbal), mental age

18months old Known to be placid and gentle usually Autistic Spectrum disorder PICA Recurrent vomiting/haematemesis Tear /Ulcer lower oesophagus-swallowed a pen nib Significant Weight Loss 20% of body weight Difficult to manage NGT pulled out, on-going vomiting

Complex needs plan

Admitted to BCH

Prolonged admission on PICU/HDU/Wards

Tolerated NGT feeds whilst sedated IV

Had CAMHS/psychology /Gastro/Gen Paeds

PO sedation/NG tube transferred to SGH

If problems General Paeds would take back.

Journey at SGH

CAMHS reduced medication, then discharged him.

Vomiting gradually increased

Pulling out cannulas/NG tubes

Psychology saw intermittently. Adult CAMHS refused.

Escalation over 2 weeks-attempts to increase oral sedation failed as vomiting

CAMHS said no place to see him at BCH

Multiple phone calls to gain support to manage him

Journey at SGH

Could not admit to HDU or PICU. I.M and IV sedation failed – team member injured while trying to

facilitate this Became more aggressive / drinking from taps/ going to other

patients beds/drinking own vomit. Weight loss further 5KG KIDS contacted-as issue of dehydration and access with ‘mental

health issues advised they would not accept and own ITU to assist. Na 180

ITU-no beds/age/no expertise to mange such individual on ITU-refused. Had 3.5L fluid bolus after further 10 attempts IV access whilst IM ketamine injections. Further 4L fluid over next 24hours.

Stayed on Ward HDU with ITU reg coming to give IV sedation drugs-Lead to CONFLICT too.

Multiple doses given

R.K Journey at SGH

Escalation to medical director

Bed on PICU further 24-36hours later

Went to PICU as a KIDS transfer and was sedated with IV infusion.

Still in hospital 7 months later

Discussion

Where should this child go

How do we keep these children safe

How do we keep our staff safe

Heated discussions about acute deterioration in behaviour warranting sedation -

How could we prevent this child’s journey from happening again?

Questions / Discussion