I don't really know what to say when asked how Job is doing. Compared to how he was doing during his cardiac arrest? Compared to how he was doing the months before he received his heart transplant? Compared to another ER visit and hospitalization? Then yeah, he's doing ok.
But we're definitely in a season where we're all on high alert because his swallow is so incredibly poor. He gags on his own saliva. We tense at every sneeze and cough. Will one of these things make him throw up? We can't leave him alone, even in the other room.
He's stopped throwing up daily, like he was from mid-November to the beginning of January. Now he just throws up every five days or so. He doesn't usually throw up his NG tube all of the way - but usually 5 or so inches, which he usually then pushes back in himself.
I've had to hold Job down during so many different pokes and procedures which are ostensibly more painful, but it may be that nothing has actually been more heartrending than watching my almost 5 year old take a deep breath and then, through his sobs, bravely determine to push back his own nose tube.
Probably about every third week now he's thrown up forcefully enough that his entire tube has come up (usually through his mouth), which then requires us to replace the entire tube. He's quickly realized how desperate he is to keep the tube down so he tries so hard to hold the tube in his nostril while he's throwing up or he tries to stop himself mid cry or mid cough.
And his VFSS and Oto and SLP follow ups finally got scheduled. On June 8th. So we get to do this for quite a while longer. Perhaps I should have been more intentional about scheduling them back in December but honestly I was sick of appointments and wanted a break. We won't really have a "break" - we're doing GI, Pulm, Transplant and sleep study appointments all in the next two months. Originally I was hopeful that some more time would help but things aren't really getting better. Well, things are better than they were before his second set of gel injections! But he's still aspirating on his own saliva so it seems pretty obvious he won't be cleared for even thickened liquids by mouth. I know I need to be hopeful and patient and trusting. But it's pretty difficult some days. Or some months. Like this month.
