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Taking the long-term view in nursing a child with Down Syndrome Presented by Lauren Rees (RN)
2 April 2012
www.childnursepracticedevelopment.org.za
Learning objectives
• To know what discharge planning is.
• To understand why discharge planning is important.
• To understand the importance of long-term nursing care planning in a child with Down Syndrome.
•Lulama – second born child of Zukiswa
•Born: 1 March 2009 (now 3 yrs old)
•Current weight:11 kg
•Birth weight: 2,92 kg at term
•Immunisations up to date
•Admission : 2 February 2012
Context
All names changed to protect patient confidentiality
Diagnosis
• Down Syndrome
• Atrioventricular septal defect with
Eisenmenger Syndrome
• Microcytic anaemia
Genogram
42 30
9 months 3
25
× 25
3 15
62
= people who support Zukiswa
.
Pathophysiology • Down Syndrome is a chromosomal condition
caused by an extra 21st chromosome (all or part)
• Complete atrioventricular septal defect is a defect in the inferior part of the atrial septum and a ventricular defect beneath the AV valve.
– Shunting of blood occurs leading to mixing of blood and potential for pulmonary hypertension
• Eisenmenger Syndrome occurs when a left-to-right shunt leads to pulmonary hypertension and a subsequent right-to-left shunt.
Assessment
• Down Syndrome phenotype
• Global developmental delay
• Central cyanosis with saturations below 90% on nasal prong oxygen
• Clubbing
• Pallor
• Cardiomegaly with epigastric pulsation
• No murmur but loud P2
• Mild tachycardia
Course of admission • Feb 2012 - Cardiac investigations-echocardiogram,
ECG and bloods
• Cardiac catheterisation delayed due to RSV pneumonia
and rhinovirus A cultured on nasopharyngeal aspirate
• 7 March- Cardiac catheterisation. Cardiac lesion found to
be inoperable. Prognosis poor.
• 23 March – Planned transfer to Cecilia Makiwane
Hospital, but did not occur due to transport difficulties
• 24 March - Acute gastroenteritis developed
• 30 March – Transfer to Cecilia Makiwane by air
Nursing care-1 • Facilitate mother-child interaction
• Devoted mother. Very good bonding with Lulama
• Zuki needs financial support
• Zuki identified need to see a social worker
• Link Zuki to a Down Syndrome support group in the Eastern Cape
• Physical, social and emotional support required for needs of caring for a child with Down Syndrome but also for end of life care
• Manage pain and provide comfort
• Child appeared comfortable generally.
• Use FLACC scale.
• Kept trying to pull off sats probe. Use intermittently.
• Mother at bedside and held child when distressed. Support nursing child in a comfortable position for her.
• Nasal prong oxygen did not bother child but check position
• End of life care will require expert pain management
Nursing care-2
• Promote good nutrition • Promote current full ward diet with supplementary full cream milk feeds • Monitor intake and output • Describe stools • Weigh Lulama daily • Provide micronutrient supplementation as prescribed • Support optimal nutrition at home
• Ensure hydration • Current ward diet and full cream milk supplementation 150ml x 4 calculated
to meet Lulama’s maintenance requirements • Check hydration daily • During acute gastroenteritis, administer oral rehydration solution after
each loose stool as prescribed • More frequent hydration checks required • Administer anti-failure medication as prescribed • Describe urine • Urinalysis on admission and during acute gastroenteritis as indicated • Ensure that mother knows how to prepare oral rehydrate at home
in a sterile manner
Nursing care-3
• Reduce microbial load
• Wash hands
• Nasal prong oxygen tubing kept clean
• Infection control measures when RSV pneumonia
• Provide additional immunisations
• Educate mother about limiting contact with other children when ill
• Encourage discharge as susceptible to nosocomial infections
• Maintain skin and mucosal integrity
• Daily bath
• Moisturise skin
• Care of nostrils to prevent pressures sores
• Nappy care
• Mouth care
• Promote exercise as tolerated
Nursing care-4
• Support regulatory system
⁻ Observe, report and record temperature, pulse and respirations 6 hourly
⁻ Observe, report and record blood pressure daily
⁻ Promote sleep and encourage daytime sleep as well
• Promote development
⁻ Provide stimulation for the child
⁻ Encourage involvement of the multi-disciplinary team
⁻ Educate Zuki concerning stimulation and exercises to provide at home
⁻ Assist Zuki to access support services