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



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.

May 2019 Update

Job is really enjoying his newfound energy and stamina. It's awe-inspiring to watch him walk from our car to one of his brother's baseball games, play while he watches said game, and then walk back to the car. We carry him sometimes, but for safety or convenience or cuddles, not because he *cannot* propel himself forward.

His cares and med list are still long and exhausting. We still have many upcoming appointments and procedures. We've never experienced that fabled time of stability and rest and growth that doctors keep telling us exists. But I think that's always going to be our life with Job. Last summer one of the ways I tried to convince myself that Job needing a new heart wasn't horrible was to imagine how easy life would be without HLHS and the imminent threat of death. Now death seems less imminent because Job is very stable from a cardiac perspective. But everything else is hard in different ways and I'm learning to give up some of my misplaced hopes and expectations.

It's a weird place to be: we're so dearly grateful for the mercies we have experienced but we're still grieving a great deal of loss and trauma.

The greatest frustration right now is that it has been three months since Job's vocal cord gel injections stopped working. His surgery to re-inject the gel and do some other vocal cord work and do a number of lung assessments has been bumped. This is our fourth time rescheduling it, because Job was sick or because they had kids needing surgery more emergently. We hope they'll have an opening soon because Job's abilities to breathe, eat, drink and talk are all so affected by his broken vocal cords. It is beautiful that he is functioning as well as he is right now, that we're not the ones bumping someone else from their surgery because we need this surgery today! But it's also sad and frustrating.