Sleepy boy

This picture pretty much sums up Keegan’s day.  If he wasn’t asleep, he wanted to be.  I guess sleep is good and helps you heal, so as long as he sleeps tonight too, we’ll all be happy.  

Other good news from today: cultures from Saturday were negative for 48 hours, and around 3pm, he was afebrile for 48 hours too.  Ferritin was back down to 1100, and most of his inflammation markers are trending down along with his liver numbers.  As expected, his coags, platelets, and hemoglobin are still dropping, but they do tend to lag behind everything else.  Today was the last dose of pulse steroids.  We are planning to go back again to 7mg/day of prednisone starting tomorrow, since for some reason he seems to be ok on 7mg, not on 6mg.  He is still maxed out on anakinra for now.  We sent the genetic labs that the immunologist and rheumatologist wanted on Saturday, but they will take a few weeks to come back.  The plan for now is to pray he stays stable on the higher prednisone dose and anakinra for the next few weeks and hope that these test results give us some concrete direction on what to try next.  

If that was all there was to the story, then Keegan should be able to come home tomorrow.  As you know with Keegan, things are never that easy.  He has all but stopped peeing today.  We are all on pins and needles praying he picks it up overnight.  We will recheck labs and reassess his kidney status in the morning before making decisions about going home or not.  Ironically, he is scheduled for his kidney function testing on Wednesday anyway.  Should be interesting.  

We were finally able to get him to walk this evening.  Between holding my hand and the railing on the wall, he managed to make one lap around the floor.  It was his first time to walk since Thursday, so he was a touch stiff.  Hopefully, it made him feel a little better just to move though.  

Please join us in praying for some pee tonight.  (Odd, I know, but you should be pretty used to it with Keegan by now!)  May visions of waterfalls dance in your head all night, Buggy!