Our day in a nut shell…

We spent our day waiting for bacteria to grow, or rather not grow.  Line cultures are still negative, but urine cultures are positive for bacteria, one she has grown before, but not the one she grew two weeks ago.  We think that this bacteria may have translocated from her failing intestines into her bladder.  We also believe that because we are doing ethanol lock therapy on Lucy’s central line the bacteria is not going to grow in her line cultures.  We just finished a course of antibiotics a little over a week ago to treat a bladder infection, and now we are starting another round antibiotics, a non sulfa antibiotic as we believe that Lucy has an adverse reaction to sulfa.  Anyone surprised by this?

Drew and the kids came this afternoon and stayed into the evening.  We watched several movies, not all from beginning to end, but we got the gist of most of them.   We pretended that Lucy’s crib was a boat and that anyone who was not in it was going to be eaten by sharks, this kept everyone entertained for hours.  We bought a balloon, some clay, a sketch pad, marbles, one red die, a green beaded necklace, and a binky clip from the gift shop.  This too kept everyone entertained for a while, as well as kept Lucy’s binky from falling on the floor  We had a picnic lunch and dinner on a blanket in Lucy’s room.  Lots of tears were shed, mostly by Lucy, when it was time for the kids to go home.  This is getting harder on her than it used to be.

Drew and I sat and discussed how we were going to get everybody where they needed to be tomorrow.  It is never easy, but we figured it out.  Tomorrow our main doc will be back and we are looking forward to catching up with him, or better yet catching him up on things.

Thanks as always for your thoughts and prayers, love and support.