Discharge from Inpatient Care – Paediatric intensive care unit

Organisation: Lancashire Hospital Trust


DATE OF ADMISSION:                                      10-Mar-2007
DATE OF DISCHARGE:                                    11-Sep-2007

Date Document Sent: 12-Sep-2007 09:13

Hospital: St. Elsewhere’s Hospital
Paediatric Intensive Care Fellow: Dr. Marcus Bailey
Paediatric Intensive Care Consultant: Dr. Andrew Peterson
Pharmacist: Mr. John Patton

Recipients:
Dr A Davies (John’s GP)
Dr D Duncan, Consultant Paediatrician, Macclesfield Royal Infirmary
Dr F Moody, Consultant in Spinal Injury, National Spinal Injuries Centre
Dr I Lewis, Consultant Paediatric Neurologist, St. Elsewhere’s Hospital
Dr Dooley, Consultant Paediatric Endocrinologist, St. Elsewhere’s Hospital
Dr F Hurt, Consultant Anesthestist / Pain Management, St. Elsewhere’s Hospital
Mr L Head, Consultant Neurosurgeon, St. Elsewhere’s Hospital
Mr B Boswell, Consultant Spinal Surgeon, St. Elsewhere’s Hospital


[section 0]
REFERRING HOSPITAL:  
Macclesfield Royal Infirmary
REFERRING CONSULTANT:
Dr D Duncan
St E WARD CONSULTANT:
Dr I Lewis
St E PICU CONSULTANT:
Dr P Fraser
DESTINATION:
Macclesfield Royal Infirmary

MAIN DIAGNOSES[section 1]                     

  1. Pneumococcal meningitis confirmed on blood cultures and PCR on CSF               

  2. Cerebellar tonsillar herniation leading to foramen magnum decompression
  3. Brain-stem ischaemia / infarction
  4. Flaccid quadraplegia
PRESENTING HISTORY[section 2]
John is a 9-year old boy who was previously well, but who was retrieved to our unit from Macclesfield Royal Infirmary on 10th March 2007, following a short history of fever, headache and lethargy leading to collapse, which was diagnosed as pneumococcal septicaemia and probable meningitis. He was initially extremely unstable, requiring high dose inotropic and vasopressor support, plus appropriate antibiotic therapy. He was noted to have cerebellar tonsil herniation on the initial CT scan, but a decision was made at that time not to operate bacause of his instability and the potential risk involved. This finding was confirmed on later MR scan, along with evidence of brainstem ischaemia, so a foramen magnum decompression was performed by Mr C Head, Consultant Paediatric Neurosurgeon, at St Elsewhere’s Hospital on 14th March.

REASON for PICU-ADMISSION[section 3]

On-going ventilatory requirement

COURSE ON PICU[section 4]

CVS[section 4a]

Following the operation John was clinically much improved. Cardiovascularly he is currently stable, although in April he had been noted to have a degree of left ventricular hypertrophy, which resolved spontaneously. In May, he had an episode of briefly losing his vision after sitting up, in keeping with postural hypotension. Having been reviewed by the paediatric neurologists, he underwent a repeat MRI, which showed no change from previously. He has had no further episodes since then.

Respiratory[section 4b]

John is currently ventilator dependent on pressure control ventilation on his NIPPY Junior ventilator, pressures of 18/7, at a rate of 6 during the day and night, in air. He had a tracheostomy performed on 4th May, and he currently has a fenestrated cuffed tracheostomy tube, with the cuff left deflated so that he can talk, with his speaking valve in situ throughout the day. His chest is clear, but his secretions can be relatively thick at times. His latest CXR on 19/9/05 was clear. Despite being on minimal ventilatory settings, it is clear that he will not be able to cope independent of the ventilator for periods of longer than a few minutes, although this may improve with time.

Fluids & electrolytes[section 4c]

John had a gastrostomy (PEG) fitted on 20th May for feeding. He developed generalised non-specific abdominal pain and nausea, which was difficult to control. Despite alterations in his feeding regime, ensuring that his bowels were working and adjustment of his PEG skin attachment, the pain persisted. An abdominal ultrasound was normal, a trial of omeprazole was unhelpful, but he had some relief with the institution of buscopan. In the last month, as he has realised that he can swallow, he has been changed over to a completely normal diet without problems and just receives water overnight via his PEG. In due course, it may be possible to remove his PEG completely. He currently receives Movicol regularly to maintain his bowel habit. His urinary continence is usually good as he still has some sensation and he voids relatively large volumes successfully 2 or 3 times during during the day. The use of conveens has not been entirely successful but we have not subjected him to a regime of intermittent catheterisation, as an ultrasound scan revealed no residual volume in his bladder or any evidence of hydronephrosis.

In May, John became hypercalcaemic, secondary to bone reabsorption related to his degree of immobility. He was reviewed by Dr Donut, Consultant Paediatric Endocrinologist, and treated appropriately with pamidronate, since when he has been normocalcaemic. We continue to monitor his bone biochemistry in conjunction with Dr Donut, and he has undergone a DEXA scan to check his bone density, after which he has received a second course of pamidronate. Dr Donut is happy with John’s bone biochemistry at the moment. She suggests a repeat DEXA scan in a year. He requires no specific treatment in the meantime.

CNS[section 4d]

Initially it remained unclear what brainstem function John still had intact, if any. Subsequent testing following the withdrawal of all sedation showed that although his gag and cough reflexes appeared to be absent, the other tests were normal, including an informal apnoea test, during which he managed to attempt to breath and trigger the ventilator.

Neurologically John has a flaccid quadraplegia and has had limited return of motor function. He has had some flexor spasms of his lower limbs and is generally better on his right side than his left. With extensive physiotherapy and occupational therapy support, he has slowly developed some voluntary movement of his right arm, including his thumb, fingers, wrist, elbow and shoulder, to the point where he has thumb and forefinger opposition, and is able to wave. He also has some voluntary movement of his right leg, particularly his toes and ankle. He is also able to move his head to some degree, with a more recent improvement of his head movement to the right side.
He continues to undergo physiotherapy, including passive movements and tilt table and he has splints for both his upper and lower limbs. He is encouraged to spend as much time as possible sat up and out in his wheelchair, and he is very keen out get out of the unit whenever allowed, having had a number of trips to the cinema. He is GCS 15/15 and appears to have completely intact higher cortical function except that he is deaf in his right ear, presumably secondary to the meningitis. He had an audiology review on 15th June, that concluded a hearing aid would not be of any benefit, and that he may continue to have episodes of tinnitus.

John has had problems with right leg pain, particularly at night which was initially well controlled with Tramadol. He has also been treated with gabapentin for neuralgia and neurasthenic pain. He continues on a combination of analgesics, which seem to work well, although he is still occasionally bothered by various muscle spasms, despite the regular use of baclofen.
These often seem to occur in muscle groups that subsequently he is able to start moving to some degree. He has recently tolerated a reduction in his Gabapentin dose without breakthrough pain.

John was reviewed in St Elsewhere’s on 18th July by Dr F Moody, Consultant in Spinal Injuries from the National Spinal Injuries Centre, Stoke Mandeville Hospital. She gave a number of recommendations regarding his on-going care which we have put into place. A repeat MRI scan of his cervical spine has been perforemd which essentially shows no changes from that performed 3 months earlier. He has also been seen by Mr B Bone, Consultant Spinal Surgeon, at St Elsewhere’s Hospital, and has undergone fitting for a truncal/lumbar brace to prevent scoliosis.

Sepsis[section 4e]


After treatment of his initial infection, John has remained reasonably well during his stay on PICU. He has not had many problems with infections or pneumonias during his admission, unlike many children requiring long-term ventilatory support and an extended hospital stay. His tracheostomy and its site have been colonised with Staphylococcus Aureus and Pseudomonas Aeruginosa, both of which are commensal organisms, common in patients with tracehostomies requiring long-term ventilation, and both fully sensitive to first-line antibiotics.
More recently John has also had another colonising commensal bacterium, Acinetobacter baumannii, isolated from his tracheostomy and its site. A coliform with extended spectrum beta lactamase (ESBL) was also isolated on at least one occasion, but a more recent series of swabs and secretion samples have not isolated this bacterium, and therefore he has not required any isolation from other patients.

John currently has input from a multidisciplinary team, including physiotherapists, occupational therapists, speech and language therapy, psychology, and teachers. Communication aids have also been followed up in association with Stadium Special School in Manchester. He has also been seen by the Paediatric Pain Team and the Urology Nurse Specialist.

Medications on Discharge[section 5]

Drug
Dose
Amount supplied
Lioresal 5mg/5ml liquid (Novatis Pharmaceuticals UK Ltd) 300 ml
20 mg 3 times per day
6 bottles
Amitriptyline 25mg/5ml oral solution sugar free (A A H Pharmaceuticals Ltd),
1 to be taken at night
28 days supply
Buscopan 10mg tablets (PI) (Waymade Ltd),
1 three times per day
84 tablets
Melatonin, 3mg tabs
3 per day at night
60 tablets
Tramake Insts 50mg sachets (Galen Ltd),
dissolve in 10 mls water, take at night
28 sachets
Movicol 13.8g oral powder sachets (Norgine Ltd),
2 sachets on a morning
56 sachets
Gabapentin 250mg/5mL oral solution,
500mg three times per day
840 mL
Paracetamol 500mg soluble tablets (Unichem Plc)
1 tablet as required, no more than 2G per day
120 tablets

Future Plan[section 6]

  1. Planning for discharge home – liaison with Butterfly Home Ventilation Service & Macclesfield Social Services
  2. Availability of back-up ventilator – contact Noel Carter at BD Electromedical & arrange payment from local PCT for both NIPPY ventilators
  3. Arrange on-going follow-up with Stoke Mandeville, including plans for John to be assessed there
  4. Potential to wean ventilation / try periods off ventilator, when at rest. To continue using speaking valve
  5. Obtaining truncal brace and wheelchair (current wheelchair only hired)
Flu vaccination +/- pneumococcal vaccine