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Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Samuel Paul Morley August 16 th 2002 – June 12 th 2004

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Page 1: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Samuel Paul Morley

Samuel Paul Morley

August 16th 2002 – June 12th 2004

Page 2: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Priorities for children with exceptional healthcare needs

identified by parents

• Introduction To Sam

• Medical History

• Support

• Conclusions

Page 3: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Introduction

• Family

Page 4: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Introduction

Condition

Menkes• mutation on the X-chromosome,• affects transport of copper into particular cells, • varying degrees of severity,• some parts of body affected more than others.

Page 5: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Introduction

Condition

• little normal brain activity,• poor visual ability, • fragile bones,• low muscle tone, • feeding, bladder, breathing difficulties,• constant infections.

Page 6: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

• Good hearing,

• Communicated using facial expressions, vocal sounds, head shaking and finger movements,

• Engaged the affection of those around him.

Introduction

Abilities

Page 7: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Medical History

Birth – 10 months• Birth - special care unit,• Development - delayed,• Seizures - first noticed at 4½ months, • Feeding - gastrostomy at 9 months,• Distress/Pain - unknown cause.

Page 8: Samuel Paul Morley August 16 th 2002 – June 12 th 2004
Page 9: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Medical History

10 – 17 months• Medication - 30 oral medications each day,• Feeding - jejenostomy,• Bladder - diverticular led to catheritisation,• Home - 15 weeks.

Page 10: Samuel Paul Morley August 16 th 2002 – June 12 th 2004
Page 11: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Medical History

17- 22 months• Infections – major collapse,• Feeding - put on weight,• Respiratory - eventration,• Bladder - bladder stones and regular blocking of

catheter,• Development - tiring more easily, showing less

interest in play.

Page 12: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Support

• General Practice• CHAS• Royal Blind School• Bright Sparks• Pharmacy • Palliative Care Team

• Health Visitor• Therapists• Outreach Team• Social Work• Hospital• Caloreigh

Page 13: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Support

Excellent Support• communication, • attention to detail, • availability, • compassion and understanding, • good advice.

Page 14: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

ConclusionsThe priority for Sam was to have the best quality of life possible. This involved• Medical needs met• Stimulation• Love

I believe that Sam had the best quality of life when he was at home with his family but to be at home involved high level of support. The biggest difficulty for Sam was getting his medical needs met whether he was at home or in the hospital.

Page 15: Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Samuel Paul Morley

Samuel Paul Morley

August 16th 2002 – June 12th 2004