Still here...

Lucy is frustrated by all the finger pokes and bandaids she has to endure!

At the end of yesterday, we were cautiously optimistic that we would be released today.  But, when the nurses were taking Lucy's 4 am vitals, I noticed she was super restless and moaning a little in her sleep - I had a feeling in the pit of my stomach that it was only a matter of time until she threw up.  Unfortunately, I was right.  Between 5:30 this morning and 5:30 this evening, she threw up 18 times!

The only good thing about this is that we were able to capture the FIRST throw up, which I proceeded to guard with my life so no one would flush it.  I requested that all doctors and nurses take a look at it and tell us WHY it looked like that.  I'll spare you the description because it's gross.  Bottom line - no one had ever seen throw up like that before.  SERIOUSLY!  So, we wait again to figure out what is causing such severe throwing up, how we can control it and why her stomach contents look like that.

And of course, because of the throwing up, she was given an MRI to check her shunt.  She also had chest and abdomen  X-rays, to check on her pneumonia and for a possible intestinal blockage.  We are awaiting results (so I 'm expecting them not to find anything or they would have told us by now).

Lucy hasn't been throwing up tonight so I'm hoping this continues and she feels a little better tomorrow.  We know from past experiences that she likely won't have an appetite for a day or two after she's done throwing up.

Today was the day I lost my patience.  Everything seemed harder than it needed to be (and trust me, a week in the hospital is hard enough!!) and nothing was coordinated - 2 blood draws, 2 trips to X-Ray, No Neurosurgery consult before sending us down for tests, etc. etc. etc.  I am tired of being here and watching Lucy suffer.  I try to be a well-educated parent and advocate for her, but when I have to explain to a doctor why I think X test is more appropriate than Y test, it makes me a little crazy.  I realize doctors are specialists in their areas and she has a lot of different specialists, but it's exhausting to always be mentally plugged into conversations and decisions made about Lucy's health and challenge residents and doctors when I think they might make a different decision if they had additional information that I only I can give them.  Basically, Jason and I know the full picture.  No one else does.  I wouldn't have it any other way though - I would do pretty much ANYTHING for this girl.  (Rant OVER!)

Still confident we will be HOME FOR CHRISTMAS!  Thanks all for your prayers and support.