ausEE Inc.

a charity dedicated to improving lives affected by an eosinophilic disease

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Getting Ready for Thursday

Posted on January 18, 2011 at 3:33 AM

Today I’m getting ready to pack for our trip to Brisbane hospital tomorrow. Bella’s surgery is scheduled for early Thursday morning so we are staying the night before near the hospital so we don’t have to do the crack of dawn drive from the coast. It should only be an overnight hospital stay for Bella so hopefully we’ll be home Friday. Today was a bit of a rough day for Bella, we were at her friends place and she was having a swim and after the swim she just broke down in tears that it would be her last swim and why did she have to have a tummy tube, why does she have to have EE etc. It was only the second time surprisingly that she has become really upset about it since making the decision and I know that it has been on her mind a lot. She knows she will be able swim again in about 12 weeks when we switch from the peg to the button but 12 weeks seems like a very long time at her age – and there goes the rest of summer.

We went to the doctors yesterday to get travel forms completed and script for more Neocate and he weighed her again to get a good starting point before the tube and she was 18kg. She’d put on 600g since last weight taken in October so I thought that was pretty good but he said – that’s practically a wee and bowel motion – you are doing the right thing and he told me he hasn’t come across anyone who has regretting getting a tube. I know I shouldn’t need validation, but it really helps to hear it. I’m feeling so much mixed emotions right now and I’m very worried how she will react when she wakes up from the surgery and I’m not expecting a positive reaction from her at all but hope with all my heart that she gets used to it and feels the benefits to make it all worthwhile. She’s never gone under very well with previous scopes either with her kicking and screaming so much she needs to be held down by every available person in the theatre. It will be a very emotional day for us and the days following as we learn the new ropes.

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