Not much change...

Things with Miss Lucy have not changed much, including her pajamas.  She has barely been awake all day, really all week. When she was, she clearly needed to go back to sleep.  Sadly, she was not sporting the post transfusion glow this morning that we look forward to after she receives a blood transfusion.  She is the color of paste, with freckles and really messy hair.  The only thing red about her are her eyes.  So not the picture of health, but yet still so cute!

Dr. R came in this morning to discuss things.  We spent the first few minutes of our meeting discussing all the things that we probably shouldn't have done in the last few weeks, each of us taking turns going back and forth.  We concluded that we could not change the past and needed to discuss the here and now.  The here and now meant that we needed to transition Lucy from a continuous infusion of dilaudid to something else.  It took most of the day to come up with a plan, when all was said and done we agreed that for right now Lucy needs to be on a fentanyl patch with PRN doses of dilaudid thrown in for added pain control.  The patch will provide her with a continuous dose of fentanyl, which is safer than keeping her on a continuous infusion of dilaudid because the risk of hyperalgesia is not there with fentanyl.  She was experiencing an increase in pain today,  we transitioned her over to the patch this evening and are hoping and praying that this will be the right med for our girl.

We are continuing to search for answers as to why our girl is so sick.  Lucy had some critical lab values in her metabolic panel that needed some attention, in particular an elevated calcium.  We added a third dose of Lasix to see if could help her body flush out the excess.  There are a few theories being discussed, one requires us to have a second look at her belly via ultra sound tomorrow.  If we can not get a clear picture then we may need to consider doing an MRI.  This would require anaesthesia and with Lucy's respiratory rate being as low as it is we are very concerned about doing this.

Continued prayers for comfort and clarity are grately appreciated.