Tuesday, March 2, 2010

I was really hoping...

The MRI showed that the mass is the micro (small) cysts mostly, which they can't do the injections on. There may be a few pockets, but the Dr needs to check it out more clearly on Thursday. (An ultrasound on it, apparently can give them info they couldn't get on an MRI. Strange.)
His ENT doctor said we need to do about a weeks worth of at home aspirations test (simple, really...put green food coloring in his mouth and see if you suck it out of his lungs). IF, if, if if he passes that, we can start pushing his feedings up, AND start to give him little bits of food BY MOUTH. We're not sure he will do anything with it, since he's never swallowed anything (on their camera) but at least we can try if he passes this test. By mouth.... The words "by mouth" have never not been preceded by "nothing", ever (did you follow that?) That's pretty exciting.

He also had an upper GI done today, which of course looked normal. But he's still puking. Everything looks intact, but they weren't able to get him to swallow any barium (who can blame him) to see what his esophagus was doing. So who knows there. The docs don't, so I'm not even going to try.

The gameplan is to continue to work at getting the malformation out of his airway (a multi step process) and to get the trach out in the next few years. There's an experimental drug they are considering for getting rid of the mass, but it seems to be a immune suppressing medicine used for Hodgkin's disease. Not a super option. They also can do surgery, but frankly, they don't want to. It's going to have to wait.

And we're going to have to wait. And I'm not good at waiting.

2 comments:

  1. That waiting thing is never easy for us humans. But you will have much to teach the rest of us when you learn to "wait upon the Lord and He...gives you the desire or your heart." Keep trusting Him and we'll keep praying for you all.

    ReplyDelete
  2. So glad to hear how the tests had gone.Just give him a kiss and hugs from his great-grandma.of course you all are in my prayers!!

    ReplyDelete