The weekend report...

As promised here is an update on where things are with our girl at the moment.  She was more awake today than we have seen her in weeks, not only was she more awake but she was less irritable, which is a much preferred way for her to be when she is awake.  She was still very tired, but is such a fighter that she tried everything she could to stay awake as much as possible today.

We are continuing to pump Lucy full of fluids, followed by three doses of lasix daily, and multiple infusions of albumin, all in an effort to flush the excess calcium out of her body.  Her levels are coming down, but still not low enough to where we can cut her fluid rate back to her norm.  She is so very very puffy, her feet are so swollen that it is difficult to separate her toes enough to wrap her pulse ox probe around her toe.  The extra doses of lasix are causing her acid base balance to be thrown in her body, she is experiencing metabolic alkalosis as a result of this.  We are noticing that as Lucy's calcium levels start to come down so too is her irritability and lethargy.  We are continuing to search for a cause for her hypercalciema.

Pain continues to be an issue :(.  Lucy is requiring more PRN doses of dilaudid in addition to the fentanyl patch.  I have a feeling that the fentanyl patch is wearing off prematurely, all patch medications seem to do this with our girl.  It is just the way her body metabolizes these types of meds.  Pain team is being brought in to help us with these issues.  We are going to need to set up a plan for Lucy post operative.  Here's hoping that we can keep our girl as pain free and comfortable as possible.

Today we finally heard back from GI.  We have a date for her surgery at Jefferson, it is scheduled for this coming Wednesday.  Several have asked us why the GI doc could not come here to DuPont to do the surgery.  There is specialized equipment that is needed to preform the procedure that is not available here at DuPont.  Otherwise, I agree it would be a lot easier to grant a doc special privileges for a day than to transport Lucy to another hospital.  We'll discuss the details of all of this on Monday.  Now that we have a date for the surgery, I admit that I am nervous for our girl.

Lucy is going to require a second surgery after she recovers from her first to have her gallbladder removed.  This procedure is complicated by the fact that it will most likely not be able to be done laproscopicly.  While she is under for that procedure we will have our urologist place a suprapubic catheter in Lucy's bladder.  Lucy has had an indwelling catheter for too long, it has damaged her urethra and as such it is causing her a lot of pain in an area of your body where you don't want to have pain, ever.  Poor girl, she just can't seem catch a break right now.  Six months ago this would have been a difficult decision for us to make, today it was quite simply a quality of life decision.

It is December, already.  I am avoiding all things Christmas at the moment, let's just see how long that will last.  My mom is coming to help us next week with the kids, we are all looking forward to that.  The kids are craving a sense of routine during the week,  my mom is very good a providing that for them, and quite frankly for me as well.    

The kids and Drew have been by to see us every night since Thursday, gosh do we ever miss them!   Both Megan and Sophie lost a tooth here last night, Sophie has a big toothless grin and Megs has a big gap in the side of her smile.  Good thing we have a lot of soup at home.

Speaking of home, when Lucy went to bed I asked her where she would like to meet in our dreams...tonight she said "home".

Thank you so much for your continued thoughts and prayers, love and support.