Monday 13 January 2014
Back at GOSH for the first time this year - the place seems to have gone to pot a little bit.
The building work to upgrade the reception area has overrun, and the cardiac day ward has been closed so we're all squashed into the clinic waiting area that we used to use a year or so ago. As a result, most of the toilets have stopped working and some of the toys as well :(
Then to make things worse, the nurses that usually take Little S's blood were away so we had to go another building to queue up for a blood test, Dr D seemed more interested in using Little S as an educational tool for the two students that were in his room with us than talking to us about his latest pessimistic prognosis, and the heavens weren't happy either dumping hailstones on us as we were about to leave at the end of the day.
The prognosis was that, although Little S's BNP had now come down from 30,000 to about 6,000, her ventricular function was still as bad as it was a year ago. And at some point in the not-too-distant-future her sats are bound to start dropping again as she outgrows the small conduit that was placed in her heart back in November 2011 in order to connect to her reconstructed pulmonary artery linking her heart and lungs. When this happens, she might have to have a catherterisation to inflate her artery or her conduit to allow more oxygen through - but this carries it's own risks: such a procedure is risky anyway given her current condition, and providing more oxygen to her heart may put undue stress on a heart that's having trouble functioning properly anyway.
Meanwhile, Little S was literally dancing around Dr D's room and singing - I think it was a Wiggles song!
We came home a bit deflated but clinging to the silver lining that her BNP was still falling and this may still indicate that things could improve, and also to the incontrovertible fact that Little S is a bit of a miracle worker. ;)
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