Tuesday 6 March 2007

Paediatrician follow-up

We spent another 50 minutes consulting with our paediatrician today. The audio recordings that we take are so valuable. I have listened to it in detail again and I have taken notes from it.

I am a very studious listener normally but I still miss some points the first time through. It is also really good to double check the meanings of words that I thought I knew at the time she said them to be sure I understand what she is talking about. She can cover so much material in that time.

We covered many topics in excellent detail during this consultation. We read somewhere in the CHARGE literature that you should limit yourself to three topics per consultation so that you don't confuse the medical professional. But if we limited ourselves to three topics per consultation then it would take us years to get through everything that we want to talk about. Fortunately the paediatrician seems to be able to cope with our bombardment of questions with ease.

In this consultation we talked about:
  • Raphael's last hospitalisation
  • Sleep apnoea
  • Timing of ENT reviews
  • Auditory Brainstem Response test
  • Organising a case conference with the ENT, anaesthetist and the paediatrician.
  • Endoscopy during anaesthetic
  • What is known about Raphael's current hearing
  • Anaesthesia resistance
  • Paediatric Cardiologist referral
  • Endocrinologist referral
  • Recent blood and urine test results
  • How we can obtain medical records from the Royal Hobart Hospital (RHH)
  • Renal ultrasound results and information on MCU (VCUG) test
  • First aid course to handle aspiration and/or choking
  • Nasogastric tube (NGT) versus percutaneous endoscopic gastrostomy tube (PEG)
  • Vaccination recommendations
  • skeletal anomalies

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