Tuesday, October 15, 2013

Not Quite - BMT +49

Today did not give us quite the answers we were looking for.
So far, no real answers at all.

Sam's line was removed. (That darn line was put in on April Fools' Day....I think that was its problem.)
The endoscopy was performed. (Nothing immediately visible but biopsies were taken, which was the plan.)
They put in a peripheral IV (temporary IV in his hand).

He hated every single moment of it, except the parts that he slept through.
He woke up from the anesthesia furious and uncomfortable.
He hates the IV. He hates the way the scope made his throat feel.
And he had a flare-up of his skin GVH, so at the end of the day, a course of steroids was prescribed anyway, even without the endoscopy biopsy results.(was that enough medical jargon in one sentence for you?) His blood pressure went up a bit and his temperature hasn't spiked to a fever but it hasn't quite gone down to normal.

Usually I can come up with some way to frame a day, to put it all in perspective.
The only perspective I can come up with is the mantra I keep repeating: he is NOT the sickest kid around. Not even close.

It doesn't much help when he's miserable and unhappy....but I try.
Man, do we need a break. Hopefully everything will feel brighter in the morning, most particularly Sam.

I distracted myself today by counting t-shirt and sweatshirt sales. You guys are impressive and amazing. So far, this little campaign has raised almost $1500, and we still have about five days to go. So there's something. Feel free to tell your friends.


  1. G-d willing a refuah shleimah and feel free to rant and cry.

  2. Oy vey....not the day I had in mind for you. Perhaps it's just delayed one day.

  3. thinking of you guys always and hoping that today is a better day than yesterday!
    Jody Egel