Friday, April 6, 2012

Sorry the continue as taken so long....

 After a few days he only gained strength.  His numbers got better. After what seemed like over of week, they were talking about sending us home.  When we first returned to the ER I was assured by several medical professionals that Gary would be receiving a picc line.  As much as I didn't want my little angel who had been through so much already to have to have something like this put into his body, I strangely looked forward to it.  I looked forward to not having to poke him over and over again over the next couple of weeks.  So on Monday when anesthesia came in and went over procedure I had come to grips, accepted it.  Not five minutes later, infectious disease department walked in.  What struck me as just plain arrogance they began to speak.  I corrected them they had his history wrong.  She explained from what she understood Gary was stopped on MMF and Tacrolimus because he was doing so well.  They had started him on cytoxan and remicade to continue treating the IBD symptoms and JDM replacing the MMF and Tac.  Wrong.  I quickly corrected them.  Not sure they were even listening to me.  They quickly pointed out they were their to make sure he did not get a picc line.  Ok.  Spinning.  Fine!  Since he is doing so well they said they are more apt to treat for 24 more hours and send us home.  Depending upon the infection and symptoms we had been told 10 to 14 days.  Then 7 to 10.  He had already gotten 6.  Their recommendations were to not put in a picc line and send us home.  As a mother, I want to go home, and oh one little important detail, I don't want my child to be so sick something really bad happens due to someones else's neglect.  I wouldn't have it.  I don't care how well he was doing or what he responded too, they still at this point did not have an id on the bug.  This meant they did not know the exact way to treat it.  They could guess the 2 broad spectrum antibiotics they had already put in already nailed it, but could they know for sure in a immunosuppressive 5 year old!!!  Think not!  Rip me in two why don't you.  I couldn't figure out why they were making me angry.  Who wants to stay at the hospital.  I don't.  But I also don't want people making assumptions.

We were discharged Monday with no picc line.  Celebrate, for sure.  Nervous, definitely.  He continues to do well.  I am so knotted up about everything I can barely breathe.  Today, we had another remicade infusion.  So much is going on.  I have been told four different things about this bacteria.  The latest is it could have come from our family dog?  He now is on what they called triple therapy.  Amoxicillan, something thats starts with a C and another tummy protector.   Heart Attack any one?

1 comment:

  1. Wow, what a ride!

    Continuing to pray for Gary, poor little guy has been through so much.