The last post set me thinking a little more about the attitudes we encountered at that time.
I think possibly one of the strangest ones was in regard to Hari's sight and hearing.
Now I can understand a medical attitude that considers the possibility of sight and hearing problems being associated with the brain damage that causes cerebral palsy - what I don't understand was the insistence that Hari MUST have sight and hearing problems.
I was around Hari 24/7 and whilst I couldn't say she had absolutely perfect sight and hearing I was aware that she certainly could see and hear - and believe me I was chastised by the medical profession for saying so!
There was this insistence that she must be blind and deaf - from people who were too wrapped up in their own self importance to notice her reacting to visual and aural stimuli.
I found it unbelievable that the same people who refused to deal with obvious health problems were so keen to add non-existent problems to the list!
Hari had cerebral palsy and was expected to conform to the rules they had created for this particular disability - well Hari was not about to live down to their expectations!
Hari had been sent for a hearing test and it was not an experience we would ever want to repeat!
The system for these tests was for all the babies to attend at the same time. They would all be given a sedative and would be tested, in turn, once they fell asleep. First to fall asleep would be the first to be tested and so on. Once asleep, electrodes would be attached to the baby's head to record their reactions to sounds.
I had concerns about Hari and the sedative. It was administered orally and I knew from experience that orally administered medicines could take a very long time to work on Hari - I anticipated that she would still be wide awake when all the staff were going home! So I mentioned this to the nurse and queried whether or not the sedative could be given as an injection - the answer was no - but they couldn't say I hadn't warned them!
Hari was weighed (in pounds) and the nurse converted the imperial weight to metric in order to calculate the dose of the sedative. (At that point the metric weight meant nothing to me!)
The session dragged on, one by one the various babies fell asleep - except Hari!
Eventually she appeared to be a bit drowsy and having a sneaky doze - but she was not really sleeping deeply enough for the test to work without waking her. Nevertheless the electrodes were attached to her head as she alternatively woke up and dozed off. It was clear that she was never going to be asleep deeply enough. We had been there for hours, I had warned them that the sedative wouldn't work in time. This test was never going to be successful. I gently removed the electrodes and we left - Hari gave up on dozing and stayed awake for hours!
Later that evening the sedative finally worked properly and Hari slept - and slept - and slept. I began to get a little concerned about how long she was sleeping for and tried to wake her up. She would not wake up at all. It was then that I began to have doubts about the accuracy of the weight conversion from pounds to kilograms prior to the dosage calculation. I knew the metric weight that had been used for the dosage calculation and found a book with a metric/imperial conversion chart.
So much for that nurse's maths!
She had completely miscalculated the metric weight and so had wildly overdosed Hari on the sedative!
I still couldn't wake Hari up so contacted the on call GP.
The response I got was that it would be fine and I was apparently supposed to reassured by the fact that she used this medicine for her son when he wouldn't sleep!
Well I wasn't reassured !
I spent most of that night watching Hari and trying, at intervals, to wake her up. Eventually she did wake up - but it was to be about three weeks before she recovered from the after effects of this overdose sufficiently to be fully aware of what was going on around her.
Well that was the non-existent hearing problem dealt with - we'll get to the non-existent sight problem in a later post.
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