Received a long awaited email from Dr D regarding the
results from Little S’s angiogram.
Not happy.
We had hoped, and been led to believe, that the letter would
let us know when GOSH thought that they would be scheduling Little S’s next major
operation to give her a proper pulmonary valve and close the hole in her heart.
However, instead we found out that Little S’s pulmonary
artery hasn’t grown as well as expected, both where it meets her heart and
within the left side of her lung.
On top of this it appears that she also now has reduced
‘cardiac function on the left side’, presumably meaning that the left side of
her heart is weaker than it used to be.
And because of these unexpected issues, the surgeons do not
feel that they are able ‘to plan an operation at least for the time being’ …
So we're left with uncertainty and questions:
- What happens to Little S if they don’t
operate ‘for the time being’?
-
They’re going to monitor her instead, but to
what end?
-
And most importantly, should we be worried about
Little S’s immediate health?
Before Monday we had a plan (albeit with risks) to give Little S the best
possible chance at a decent future.
But now, we don't.
And, as a result, it’s becoming easier to read ‘symptoms’ of Little
S’s condition into her behaviour: she’s fairly sedentary, doesn’t climb stairs,
breathes heavily.
So does this mean we lose hope?
No - we have to keep hoping and praying.
Praying that Little S’s miracle continues and that she chooses life.
Because we always will.
Hoshana Shoshanah
Chanukah Sameach
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