Cya CVA!

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(Originally posted May 22, 2009)


1. J.J.'s surgery has been moved to 8:00 on Tuesday morning, which means we have to be there at 6:00 a.m. Which would be bad enough, but our day care doesn't open until 6:00, which means I have to figure out once again how to pierce the time-space continuum to make this work.

2. J.J. is retaining fluid in his legs again, which most likely means his ejection fraction is diminished again. His furosemide (Lasix, a water pill) was increased up to 60 mg long enough for him to get into his cardiologist. And there's an interesting story there, since...

3. We fired his cardiologist this week. I need someone who is going to be a team player with us, not someone who just barely deigns to speak to us. I have a couple of recommendations from the stroke case manager at RHI and our family doctor's office is going to call to do the referral. We're having to go outside the Hendricks Regional Health system, which kind of stinks, but whatever gets us a doctor who acts like s/he gives one tenth of one crap about J.J.

4. We met with the stroke case manager at RHI on Monday for a follow up. She is very encouraged with J.J.'s progress and expects him to eventally recover about 98% of his speech and most of his memory. We just have to hurry up and wait some more. She discharged him, so that's one less medical professional on the rotation. But...

5. J.J. has a appointment next Friday with an ENT about his possibly paralyzed vocal chord. Hopefully we'll have some news soon on this front. J.J. gets frustrated because he can't sing at all, even when he knows the words.

6. Next Thursday J.J. will have an all day assessment with a neuropsychologist (this is part of the requirements for his participation in voc. rehab). The assessment should uncover all of J.J.'s cognitive deficits so we can figure out how best to accomodate them. Most of his issues appear to be in following multi-step directions when they don't follow a logical process (so asking him to go downstairs and get four or five things and then come back is usually okay, but asking him to touch the doorknob, stick out his tongue and pull on his ear like they do at speech therapy usually he has only about a 70% success rate on), short term memory functions (we're making lots of lists!) and the facial recognition/song recognition issues I referred to a couple of posts back. He also has more trouble speaking when other conversations are taking place around him since it's harder for him to concentrate on what he's trying to say. But I'm sure these are all things we can work around.


I think you're basically up to date now...


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