But he’s ok now, right?

This is a common sentiment when it comes to Isaac. Friends and family often ask “how is he now”. Or we find ourselves out meeting strangers at a farm (which happened today) and someone inquires about Isaac’s trach….. I’ve mastered the brief explanation, as most people don’t realize what a loaded question it is.
Inevitably the conversation turns to “but he’s okay now, right”? This question elicits the same conflicted feelings as the general “how is Isaac?” These are perfectly reasonable questions to ask, and we are happy to get them and answer them. However, the answering can be difficult.
I told the man at the farm who asked this question today that yes, Isaac is pretty okay now. Okay in Isaac’s world is a relative term. As soon as we walked away I thought about all of the things I could have included in that answer…. What that man doesn’t know in just a brief conversation is that we learned in Cincinnati is that Isaac’s issues with infection lately are likely aspiration based, and until he can control the aspiration and better protect his airway we are no closer to getting his trach out. I didn’t mention that in order to help with reflux we are in the process of ordering a specialized mattress that will keep him inclined while he sleeps, to better keep his reflux down. We have had to fight for this mattress for the past 6 months and now anxiously await it’s arrival.
Although this newest round of setbacks was predicted, it is still disappointing. But in the end reflux is much more addressable than a chronic hole in the lung…. SO when I tell you he’s okay, it doesn’t mean he’s totally ok, just as ok as he can be.

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