Monday, June 17, 2013

Uncertain...


Things with Miss Lucy have not been good.  Sadly the boost we were hoping to get from the blood transfusion two weeks ago was not the answer to her problems, not that we really thought that it was.  Lucy has numerous issues, and as our wise(aleck) doc pointed out to me tonight when I asked him what he thought could be causing her most recent issues he responded with, "Do you mean mitochondrial disease?".

We are currently sitting in the ED waiting for a bed upstairs.

Lucy has declined neurologically over the past month, but even more so over the past few days.  In addition to sleeping all of the time, she is weak, slow, "out of it" looking.  Her eyes are different, she has a glossy eyed look about her now most of the time.  Even more dramatic is her decrease in muscle tone, she was weak before, but now it's even worse!  We are suspicious that she may have suffered a possible metabolic stroke.  Unlike a typical stroke which can be detected via a CT scan metabolic strokes can not, there really is no way of knowing for sure other than symptoms and lab work.  Her CT scan looked normal, aside from brain atrophy which is nothing we didn't already know.

We are looking into other possibilities, but at the moment there is so much uncertainty.  Blood and urine cultures are cooking, and labs of all sorts have been ordered.  We will discuss things in the morning with our doc.  As always we are praying for clarity, and for something treatable.

3 comments:

Jen said...

Praying for clarity & something treatable.

Susan said...

My heart hurts for you all. Praying God's peace and presence over everyone. Hugs!

Carrie said...

Praying for you and your special girl.