Out of PICU

Well, they moved us out of the PICU today and back into the same room we were in after he was first diagnosed.  It's amazing how much we like this room now after having the PICU experience. 

Joey has the doctors just stumped.  His heart rate is still high - but its a steady beat.  He also has a red rash that started on Saturday and seems to keep growing.  It's very painful under the rash.  He has a hard time getting in and out of bed, but when he's out, he's fairly active.  While watching him walk down the hall tonight, we noticed that he's favoring one side of his body.  He didn't say it hurt until we asked him, then he said it did. 

They are going to watch his temperature and heart rate closely tonight and then do an MRI in the morning. The redness and pain on his side are near the place where they took the bone marrow, so they are wondering if it's related.  An infection in that area could also be causing the increased heart rate.  The questionable thing there is that he had a slightly elevated heart rate the day before the aspiration.  That could, however, have been caused by going off the steroids just 2 days before.  It got much higher after the procedure. 

Another thing they are watching is his adrenal system.  They checked it this morning and it was really low.  That could possibly be from just coming off the steroids, but they'll also watch it to be sure. 

His spirits are still high, but he's starting to get a little grumpy again if he doesn't get what he wants. I think he's just really tired of being here.  His mind seems to be sharper now than it has been for several months.  In hindsight, he was sort of walking around in a fog for a while. 

There are so many variables right now that it's really hard for them to pinpoint what's going on with him. One of my favorite shows is "Mystery Diagnosis". I like watching it, but it's not as much fun when it's your own child.

Our specific prayers: 1) doctors to find that all of these symptoms are related to the same thing and that thing is easily treatable. 2) for the steroids to get out of his system so he can feel and look more like himself again.