What to do?

What to do?

Not a lot new to share today.  Keegan had a pretty quiet end/beginning of his week.  His labs on Sunday continued on a track that makes us very antsy.  Are we seeing the beginnings of another flare or a reaction to the IV iron from last week?  It’s a bit too early to tell.  We had to supplement his potassium and minimize his diuretics a bit today, even though his blood pressure remains high.  His liver is still enlarged, tummy still a tad uncomfortable, and his joints are a bit stiff today.  All in all, he is headed in the right direction to be discharged from the hospital.

The question is where do we go from here?  Outpatient in Boston while we sort things out or wait inpatient here longer while we try to get care coordination hammered out at home.  At the end of last week, we were pushing for straight to home.  We quickly realized today that a fly-straight-home plan might not be the easiest or safest option.  Not to mention that getting his care coordination situated at home is turning into a nightmare.  Politics…ugh.  We had a nice discussion with the transplant cardiology attending tonight and will regroup with another team meeting tomorrow afternoon.  By then, we should have a better timeline for the coming week.  Thank you once again for all your love and support.

A happy boy on Sunday morning

Play-doh!

(An inside joke for my Dallas DA friends…I almost entitled this post, “what am we to do?”  I then realized most people would think I had lost my mind.  Although I did have a good role model for that, I suppose.)