Monday 7 June 2010
Zoe: Balancing Act (BMT +5)
We've been really worried about Sonny's recent dependence on oxygen. It has increased from 2l to 5l per hour (might be per minute. I just asked our nurse and she thought it was per second but that can't be right either as surely that would take your face off). Anything above 2l has to be taken through a mask which is pretty distressing for him and rather unpleasant for us to see him having to endure it. There is too much fluid in his body and it is collecting around his chest. Since he can't eat, everything that goes into him is liquid - his TPN (nutrition), blood products plus the 60 + infusions he has a day. As well as having regular blood gases taken he also has to be weighed at least twice a day along with anything else that comes out of him. Then the doctors get the tricky job of working everything out. Everything started to go wrong with his levels when his infection got out of control on Tuesday but they are starting to make things better and he's currently coping well this evening on 2l again. Anyway, it turns out that we don't need to be quite as worried as we have been. His consultant is very pleased with how he's doing and would be happy if he stayed just as he was for the next 7 days. I wish consultants worked nights and weekends...
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It all sounds so frightening and Emily thinks Sonny is the bravest boy she knows and wonders if it is ok with him that she puts his name on her shirt for her Race for Life in a couple of weeks time.
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