After the echo day on the 8th we waited for the 20th and 23rd rather impatiently.
Meeting the Diana nursing representatives was a pleasant and reassuring experience - there seems to be a lot of care available and it will be provided in a really responsive way.
The Planning meeting of last Friday was very productive; lots of issues were raised and dealt with, such as Theo needing a gastrostomy - this requires an operation under anaesthetic to create a portal directly through skin into stomach so that he can have his feeds that way instead of down the NG tube, which even I managed to pull out by accident today. Oops. There was a lot of discussion about when he will start to be allowed home - it will be a gradual discharge, in that to start with, we need to learn to take him off the ward for brief periods. Later on it will progress to hours at home, then overnight, then all day and night and then, finally, all the time!!
Which is a laugh in itself, as basically, the hospital and staff move in with us instead!
March seems quite realistic in some ways and yet also pointless. I am hoping he comes home for good right before my birthday - and I shall wrap a ribbon around his middle and stick a bow on his head. It will be the only thing I want!
1 comment:
Lovely to see new photos and hear the progress. Popped in to play a little on Saturday. He was being a gorgeous gorgeaous boy, playing the piano with his kicky legs. What a birthday present it would be having him home. Hope to see you on a weekend sometime. SH
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