Sunday, November 13, 2011

November Infusion: FLARE

Last month I was worried about the taper of steroids.  But time and time again, there is not much I can do about it until it comes to past.  Because even I admit, "what if I am wrong".  But walking into the hospital on Thursday I was so nervous.  I was nervous because I knew I had to get my Mom on and make sure things got done the right way.

Somehow we scored a bed this time in the infusion center which was nice!  It is up near the nurses station so the all the nurses step in and help.  We had like 4 nurses in our room when we were getting checked in.  I found my main nurse and explained I was about to be a pain in the butt.  I asked her if she could page rheumatology before they started any medications.  They are always compliant for the most  part.  She dropped a bomb shell right away telling me our rheumatologist was not in town.  8 O  What?  No.   "I talked to someone.  He said he was in a meeting and would come when he could."  Well. well. well.  I knew exactly who that was.  I protested.  I even called him a harmless name.  Our nurse desperately scrambled trying to get another doctor to come.  It was too late.  There he was.  It really was no big deal.  He was with our fellow who saw Gary last month.  I told our doctor it was nice to see him.  It was too.  Just wanted my rheumatologist.  But settle for two fellows.   Here is what I have been seeing:

Heliotrope rash, and facial swelling.  Some calcinosis had penetrated the skin on the back of his knee.  It is showing signs and getting larger on his backside.  They agreed.  I don't why I felt relief and panic at the same time.  

We had a clinic appointment set up for 215.  We checked in at 1015.  There was no way that was happen.  So they accommodated and came to us. In walked our doctor who was out of town.  I told her I was having a shcitt fit she wasn't there.   Yes.  Yes I did say that.  I was just so relieved she was there!  She examined him and said, "yes, he is flaring."   Changes in capillaries in his fingers with so many other signs.  We are going backup on our steroid which is only 1/2 ml but enough to make a difference.  We are going to run rituxan again at the end of the week.  Gary's labs came back fine.  But he is still flaring.  
The trip home was the pits.  Awful.  Traffic made our trip into a 2 1/2 hour ride.  All's he wanted to do is lay down.  He cried the whole way because he just wanted to sleep and couldn't.  Side effects from IVIG seem to really be increasing.  He nears vomiting and is so miserable.  I feel terrible.  I wish I could have pulled off, got a hotel, and tucked him in for the night.  He would have loved that too.  Would have been a good distraction.  Getting him to our bed, not his, was on the menu though.  I was close to just making him a bed on the back seat.  Belt him in somehow.  A new item to bring, pillows!  My poor little bunny.  I hate revisiting this.  We need to stop this in its tracks or he is going to get full blown sick from it. 

I still cry. 

He recovered but has been tired.  He was running with his brother and had to stop and grabbed his legs saying owe.  Ugh.

1 comment:

  1. Oh poor little fellow! And you too mom. :( This is just not an easy thing to have to go through.

    Praying this medicine works and you will be able to make this steroid taper.

    Praying this flare is gone and for our Lord to give you the strength you need to be strong.