Thursday, January 17, 2013

Hurry up and wait...


Things with Miss Lucy have been somewhat...sorta...kinda... stable this week.  We are continuing to try and figure out her hypercalcemia issues.  Not sure if that is possible, but we have all the best minds working on it.  Despite all of our efforts to lower her calcium levels, her serum calcium as well as her ionized calcium are continuing to rise.  Our best guesses at this point are that her poor renal function is playing a role in this issue, as well as her low vitamin D levels, her poor metabolism, her parathyroid hormone function, and also the fact that Lucy is osteopenic.  I think that just about covers any and all reasons for hypercalcemia...Lucy happens to be dealing with them all!  We started Lucy on Calcijex today, an IV form of vitamin D given to patients who are on dialysis.  All of the literature about this med says it can raise calcium levels in a person by pulling calcium from the GI tract.  Lucy does not have any calcium in her GI tract so we are taking a chance that this could help to raise her vitamin D levels enough so that it will help with her bone density issues, thus helping to prevent calcium from leaching out of her bone into her blood.   We shall see...


Lucy has a few hours a day in which she is awake and interactive; however, she continues to sleep a majority of the day.  We are waiting to hear back from the GI doctor in Baltimore before we make any decisions about what we are going to do next.  As for now we have plenty of issues that we are attempting to resolve, or at the very least address.   We are in that hurry up and wait mode, and for the first time in Lucy's life I don't mind staying in this mode for just a while longer.  The decisions we have to make are not easy and will be life changing no matter what we decide.


Hurry up and wait...we are good at this, we have had lots and lots of practice over the years.

1 comment:

charity said...

praying the med helps and the doctors have wisdom to help lucy. also praying for peace and comfort for you while you are at the hospital with her