Saturday, June 15, 2019

Mid June 2019 Update

We had our monthly transplant clinic earlier this week.

On echo, his heart looked better than EVER before!! They're not worried about rejection but we're all still waiting for his biopsy for a more thorough confirmation. We've rescheduled his biopsy multiple times since April because of Job's cold or SCH's mold issues, but he's on the priority list so perhaps it will happen sometime in July.

It's possible that, pending biopsy results, we might go to every other month appointments. :O

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Job switched to a new immunosuppresant (evrolimus instead of MMF). This has shown to be a better long term med in transplanted adults, so several centers nationwide are switching their kids over to it as well. Three weeks in, they're still happy!
It's actually pretty annoying to cut it and crush it, but MMF messed with Job's bowels so maybe it's a fair trade off. We're also slowly decreasing his diuretics, so maybe we can finally potty train sometime soon. Poor Job has been so interested for so long but med side effects haven't allowed him control over those bodily functions.

I just got the call yesterday to set Job up for vocal cord surgery on Tuesday, the 18th. This too has been rescheduled 4 different times and they said they might call to cancel it this weekend, but we're hopeful it will happen. In addition to the gel injections, pulmonology will do a battery of function tests in an attempt to get a better idea of how to optimize Job's lung function.

And we finally got intensive SLP appointments set up to work on Job's articulation. Yay! His speech is my big focus for this summer.

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