Wednesday, December 12, 2012

Still Positive

Good and bad news today.  Let's do the bad news first and get it out of the way.  Stephen is still positive for cdiff.  I've found that the more all of this stuff drags on (transplant, cdiff, communication break down between patient and doctor) the angrier I get about all of it, so I've had to give myself a couple of days to post anything or I start to sound like a nasty ol' you-know-what.  You should see some of the posts I have written but never posted!  But the bottom line is Stephen still has cdiff, which means he can't get a transplant.  I got the call on Friday evening that he tested positive again and we finally got a plan in place Tuesday evening.  Stephen will do another 14 day course of vancomyacin four times per day (like we did before), and then it will taper down to twice a day for a week, then to once a day, and so on.  It's called a vancomyacin taper and this hopefully do the trick.  If this doesn't work, there's one more "experimental" drug we can try and then he'll have to have a stool transplant.  It's super gross, so I will spare you the details, but I think you can probably figure out what the means.  The entire vancomyacin taper is 6 weeks and then we'll test him again.

The good news among that is that Stephen is eating cookies! Chocolate chip, oatmeal raisin, and sugar.  And also ice chips like crazy! He actually rode around the grocery store in the cart on Sunday night munching on a cookie shouting "HI!" to every person we walked past.  It's the cutest darn thing I've ever seen!!  He really is just getting cuter and cuter by the minute and forming such a little personality and he just makes my heart melt.  He's so affectionate (except when throwing a typical terrible 2 tantrum) right now and started actually giving kisses the other day!!  And even though he's struggling a bit to verbalize what he wants and needs, when I give him instructions on things to do, he's able to really follow them.  Including hanging the little stockings each morning on our advent calendar!  Oh and the thing that's the most evident is that Elmo is the coolest thing existing in Stephen's world right now.  He cannot get enough of that crazy red little creature!  I just heard about this Christmas Town at Busch Gardens today at work and it apparently has a whole Sesame Street theme, so I think we might just have to take a trip down there to visit Elmo!!

And we had dialysis clinic this morning and everything went well, so that's also good news.  They made slight changes to his dialysis regime to accommodate his growing body and to his formula recipe.  But other than that, everything else is status quo!


  1. Hi Linds,
    Sorry to hear that Stephen is still fighting that mean old bug. Hopefully, the Vanomycin will knock it out for good and he can get back on the transplant list. Glad to hear that he is discovering some of the finer things in life like chocolate chip cookies and Elmo. Christmas should be an adventure for him this year. Wish Uncle Dick could be there to be Santa Claus.( Remember the time he flew into the York airport in a Santa Claus suit to deliver presents to you and Jess.) I am sure Norah and Chloe will show him "the ropes". Hope you are having fun getting your new home ready for the Holidays. We can't wait to hear about Stephen's Santa Claus experiences.

    Love and Hugs,
    Aunt LuAnn

  2. Stephen is evidence of the love and caring you consistently give to him. He reflects the commitment and strong foundation you provide and it will enable him to grow into a fine person. Lindsey, you are an amazing woman and my hat goes off to Bill.