Monday 10 March 2014
Back at GOSH again with Little S – time goes so quickly –
feels like just a few days since we were last here.
Building work continues on the reception area but things
were a bit better this time: toilets and toys were working for a start!
More importantly Dr D was working, in the sense that he paid
us a lot more attention, presumably because he had no students sitting in his
office that he could ask to prod and check Little S.
He seemed to be in a better mood as well – silly but it can
make all of the difference.
Even though the message was pretty much the same as last
time (no change on the inside but she’s stable on the outside and we still don’t
really know what to do if she deteriorates) we came home thinking more
positively simply because Dr D had been smile-ier.
Little S was on good form, toddling around and laughing as
she does – Dr D was genuinely and happily stumped about how our miracle girl is
remaining so ‘well’.
We looked at the scan of the right and left chambers of her
heart and saw how the left side was doing so badly whilst the right side was a
lot better (although not functioning normally either).
In a normal heart the left chamber receives newly oxygenated
blood from the lungs and pumps it around the body, at which point it returns,
deoxygenated, to the right hand side of the heart – the right chamber then
pumps it back to the lungs to be oxygenated via the pulmonary arteries and
around we go again.
However, Little S has a hole in her heart between the left
and right hands sides so the oxygenated and deoxygenated blood mix together to
some degree and when one side pumps it affects the other.
Because of this hole, it seems that the right side of Little
S’s heart has been able to help the left hand side do its job of pumping good
blood around her body whilst also managing to pump bad blood back to her lungs –
nice to know that it had some usefulness after all!
Then there’s the conduit that’s been put in to her heart as
part of her reconstructed pulmonary arteries – it’s a fixed size, 6mm, so as
she grows, it’s might get harder to push enough bad blood through to her lungs
to get re-oxygenated – she’d ‘go bluer’ – so there was more talk of a possible
catheterisation at some point to stretch her artery and get her ‘pinker’ again,
and then a discussion of the attendant risks in doing so – could her weak heart cope with ‘better’
blood?!
We also talked about Dr S and the possibility of cardiac
regenerative therapy – injecting stem cells into the heart to improve the way that it functions - Dr D agreed to contact Dr S and Dr K (another doctor doing similar work but in Maryland USA) and see if that gets a better response from them than my response - which has got little better than nowhere so far.
However, just to make sure that we weren't having too much of a warm feeling, he let us know that he thought that it might be decades before stem cells could do the trick for Shani - but let's not lose hope!
By the time we'd done Little S's blood test - in another building like last time - it was nearly time for supper - so we figured let's make this day a bit nicer for Little S and took her to Pizza Express - think we might do that more often now - it makes the day a bit more pleasant for her and means we're not rushing back to sort out some food for her - and we get a pizza as well, so everyone's winner!
