In the morning she would wake up very tired with tousled hair.
The Respiratory doctors suggested that she have her large tonsils and adenoids removed. It was hoped that this would help her to get more oxygen into her lungs, and help her to sleep better.....but as she would not be rated as a Category 1 it would be best for us to go privately, as the public waiting list was very long.
We took Jess to see the private ENT doctor. He agreed with Respiratory that she needed her tonsils and adenoids out - they were taking up half of her throat - so we made the operation appointment for the following Easter break holidays.
The time soon came and Jess went into hospital for her op.
Jess had to fast which I was really concerned about because Jess does not cope with change in routine. We didn't know how we would get her to understand that she could not eat.
But God came through and answered our prayer. We were rung by the anaesthetist who told us that she could have breakfast as it would be an afternoon operation. This solved the problem we had foreseen.
We went to the day waiting area and she sat in her bed for a while and played. We had brought her some comfort toys. She soon was bored and we went to the playroom which keep her entertained.
Back in the room we were still waiting. The other children in the room had been on IV infusions and were eating....so of course Jess wanted to eat! We had to physically remove her again from the day area so she could not see the food - I was not happy about the fact that they put her with children who were eating - how unfair on any child!
It came time for Jess to go in for her surgery and she went to sleep very quickly and calmly. We waited and it was only about half an hour or so before the doctor came out to tell us that everything had gone well. The tonsils and adenoids were bigger than what he had thought and were taking up about three-quarters of her throat. She could go home the next day. Too easy!
Jess woke up and took her pain medicine and antibiotics well.
She soon started doing her repetitive comfort behaviour - putting pegs in and out of a bucket over and over again. Then taking pen lids off and putting them on again over and over again.
The next morning Jess continued these comfort activities. She ate quite happily - Jess doesn't seem to feel pain at the same level that my other children do. And we went home.
Once we got home Jess continued to eat quite happily for a couple of days and then she decided that she did not want to eat - we think the pain finally sunk in. We tried to coax her with all her favourite foods but she refused. We kept the pain medicine up and forced her to drink water.... She would not drink anything else. Jess also decided that she would only listen to me and not Joe my husband....which meant that after I went back to school I had to ring home nad tell her over the phone to drink.... She was being very stubborn.
This week was a scary time as we didn't want her ending back up in hospital. And though well-meaning friends gave us lots of suggestions they had no idea what we were dealing with - we had a stubborn child with DS/intellectual impairment, who only eats a small range of foods and who will not eat anything else no matter what is offered.... This situation provides more challenges then for the regular child who will happily eat anything soft, cold and sweet. Not our Jess...
Again with her intellectual impairment we could not reason with her.
We had a paediatrician appointment and the doctor noticed that she did have an infection in the back of her throat which is probably the reason why she didn't want to eat....so Jess was put on more antibiotics. Soon after she went back to eating.
The operation was successful as she is a better sleeper and even though she still wakes up with tousled hair, she is not tired.
© 2012 by Jenny Woolsey
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