The first day of the new year....

Well, Willow and I spent it in the hospital learning a few new words/terms, seeing old nursing friends and getting a visit from a very special couple I hold dear to my heart.  How did the rest of my family spend the day? That is a good question! LOL   I am not sure, I do know they slept in a bit, they did some light cleaning, they came to visit us and I do believe there was some special ice cream treat worked in there somewhere!  What a day!

So, Willow is now on day 2 of her recent trip to the hospital, and really I do not know much after this day.  I do know that the CSF culture from the shunt tap has still come back negative for infection.  That is good one would think, but now I have doubts running in my head.  A doctor from the neurosurgery team came in almost disappointed that the culture was clear.  She said that they had planned on doing surgery today! They really thought it was a shunt infection... not only did she say that, but then later in the afternoon I had a peds. doctor from the floor come in and tell me that it is possible that due to her being on antibiotics as long as she has been (off and on since early November) that it could truly be 'hiding the infection'. Seriously?! So he is even on the shunt infection bandwagon.  So the plan? That is where things get a little, shall we say foggy.  Plan A: The CSF comes back clear, she is unchanged (meaning lethargic, feverish, not eating) they can either (sub plan A) keep her here, take her off the antibiotics and in 2-3 days re-run the blood work and CSF cultures or keep her here on antibiotics and watch her and wait for the fever to break.  You see we don't know what she is fighting, so that is a problem... Now Plan B: The CSF is clear, she wakes up perky, eats her breakfast and (sub plan B) has a fever but is not acting sick we can go home (either on or off antibiotics not sure yet) or she wakes up and is still yucky.... You see there are so many variables to what could happen.

They have run blood work and have done what is called a CRP test (  basically it tests a protein in the blood that can tell that your body is fighting an infection it just does not tell where, or how big or small of an infection.  Yesterday her number was 100 (prior to being put on Vancomyacin) today her number (after 2 doses of Vanco) was 99... Wow, what a change and to be on such a tough antibiotic too... hmmmmmm doesn't sound right to me, which is why the doctors believe it is a shunt infection that is hiding itself. :(   So today I am feeling a bit defeated in all of this.  I do not know what is wrong with my precious little girl, and yet again Hydrocephalus has taken control of our lives.


becki said…
I'm so sorry Donna. I truly wish I could be there with all of you. Love you.

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