This week has taken an unexpected turn. The effusions, minor when we arrived 2 weeks ago and basically gone last week, are back. Even though he's still in the ICU, still using all the easier treatment methods available - they are simply not working. The leak is back and it's gotten worse.
Thursday's plan is still the same.
But we are bummed... because this means the chance that Thursday's catheterization will be minor has just plummeted. He'll probably need the refenestration that we hoped to avoid. The side effects are severe, the medications to manage it are nasty, and it still may not be enough.
If this surgery doesn't fix the problem, next steps are even worse. There's no good option, only less-bad-than-doing-nothing options, with higher and higher costs to the rest of his body.
Mostly we just want our boy to be happy, and know he's loved, and enjoy his life for as long as possible, and not spend it stuck in a hospital bed.
So we're frustrated, and sad, and lost, and angry.
And no, we don't want to answer questions. We do want lots of support for James as he hopefully gets through this latest bout with as minimal intervention, hospital time, and strain to his body as possible.
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