Steroids

Steroid update:  Well, the good thing is that they work.
We tried a week back on just 10mg to see if that would do the trick, but it wasn't enough.  After 6 days at that dose, Jacob still needed his oxygen tank all day long and we were taking it with us everywhere.  He went through 3 tanks in 5 days.  So, I called and asked to get him in to his clinic appt a day early so they could check him out.  That was a long day.
He needed his monthly dose of Pentamadine which takes about 45 minutes start to finish.  He has to breathe it in so they give him albuterol first to open up his lungs and then he has to inhale the Pentamadine mist for about 20 minutes.  Everyone has to leave the room while he does it so we don't breathe it in too.
He also needed a transfusion of IVIG that day which takes several hours.  IVIG is a collection of just antibodies from a whole bunch of blood donors.  Since Jacob doesn't have any antibodies of his own yet and his new marrow can't make them until he's off all his immune suppressive drugs, they explained that he has to "borrow" antibodies from other people.  They help him fight off infection.
While we were waiting for the IVIG to be done, we took a walk down to radiology for an x-ray of his lungs. This was a little scary to me considering that it's flu season and any kids with respiratory problems are probably passing through radiology for chest x-rays.  He wore his mask the whole time and I didn't let him touch anything and we got out of there as quick as we could.
The x-ray showed that his lungs are "slightly" better than they were at the last one.  We were glad to hear that they aren't any worse. 
Dr. decided that the 10mg just isn't enough to make a difference so he increased his dose to 40mg.  
At 40mg, we saw a great improvement and now I'm happy to say 4 weeks later, still at 40mg, Jacob isn't needing oxygen at all through the day and any time he's awake.  We keep him on the oxygen while he's asleep just to be safe.  When I check him while he's sleeping though, he doesn't get too scary low. 
The yucky part about 40 is that he still has all the symptoms of steroid side effects.  He has a hard time sleeping at night and staying asleep, his joints ache and his legs and ankles hurt pretty bad and he's got a bigger appetite again.  His swelling has gone down quite a bit, but he still sure doesn't look like himself yet.  Next week, they will talk about maybe beginning a slower taper down from 40.  Probably 5 mg at time instead of dropping 10mg each week.