The “D” Word…

It’s officially in the works… discharge or the “D” word as it is know around here!  Everyone is working hard around here setting things up for us to go home tomorrow so that we can get on a plane destined for Disney!  Our infusion company is getting all of Lucy’s new IV meds drawn up, and tomorrow her new TPN orders will be faxed over so that they can set to work on making up her new fluid mixture.  All of this needs to be done, and couriered over to the hospital, in order for us to go home tomorrow.  We arranged with our infusion company to drop ship Lucy’s weekly supplies, TPN, and meds to Florida on Monday so that we don’t have to bring it ALL with us on the plane.  We can’t believe that this is really happening, we are so excited, as are all of the people here at the hospital!

Our wish granters from Make-A-Wish came to the hospital tonight to present our final wish package to us.  Megan was sitting next to me as they were sharing all of the details of our trip with us, she was so excited she kept bouncing up and down.  We feel so blessed to be given this opportunity… it is truly going to be a trip of a lifetime!  Make-A-Wish has been absolutely wonderful, taking care of so many of the details, and waiting on Lucy to learn if she would even be well enough for her wish trip.  I was never so happy to call them and say we are going to Disney!

Lucy’s sleep issues are still there, Dr. R and I talked about it today, he believes that she is having a paradoxical reaction to the Dilaudid.  Instead of acting like a sedative for Lucy it is doing the opposite, it is revving her up.  We are going to switch her back to morphine and see if that helps her.  It was also decided that Lucy will have a Foley put back in for our trip because she continues to retain urine and fluids. We are going to have to use Lasix daily which creates a lot of extra urine, not good for a bladder that doesn’t empty well on its own.  When we return home from our trip, we will come back to the hospital where we will have the Foley pulled and be taught how to straight catheterize Lucy.  She is scheduled for a VCUG and urodynamics study in a few weeks, at that time we will hopefully learn more about what is causing Lucy’s bladder issues.

Wheelchair clinic was able to take Lucy’s chair and make some modifications so that it will hopefully be more comfortable for her.  They made it so that it would recline more at a 110 degree angle.  This way it should not put as much pressure on her extra sensitive belly when she is sitting.   Today was the first time in three weeks that we were able to sit her in her chair and go for several walks.

We want to thank all of you for your love and support, thoughts and prayers, especially throughout this difficult admission!  We could never do this alone…nor would we want to!