Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, May 17, 2016


Meagan slept last night for a few good stretches.  She got a pre-op wipe down (just in case), and another dose of her heavy antibiotic.  Unfortunately, her IV also went bad - it never looked great from the ER anyway to be honest so I wasn't surprised.  Luckily, one of our favorite people to redo IV's was here.  Ms. C, as we will call her, was excellent as usual, and got another IV in Meagan's hand with minimal fuss and pain.  She was able to take the old one out and let her arm rest.  We saw glimpses of Meagan's stubborn self when she was getting her new IV - telling Ms. C she needed to put a band aid on it, she was getting a 'boo boo,' and then finally telling her and our nurse that they could go home.  Oy.  Needless to say, despite her being bossy, all of us were happy to hear it because that is more like the Meagan we know - so I thank them for taking Meagan's "insults" with grace and indulging in some humor about the whole thing.  Any glimpse of Meagan's personality is a good thing!

So first for the good news - her CSF cultures are still negative, and we are past the 24 hour mark.  Now I don't want to jinx anything by saying this, but, I would honestly be shocked if we saw any bacterial growth at this point.  Yes it can happen up to 48 and even 72 hours, but, I feel pretty comfortable saying that her CSF, thankfully, is not what is holding the bacteria.  That would have meant removing her entire shunt, waiting for infection to clear, and redoing the shunt.  So, I am VERY happy her CSF is still showing no growth.  The other good news is that although she's unhappy at times or has, um, 'attitude' (the nicest way to write it), we are happy to see that.  She has been really lethargic since Saturday, so to see that is a good thing.  She will stay awake for a little bit and watch Disney Junior, or will talk to me for a few seconds..etc.  She is still feverish and still wants to sleep a lot, but these awake times are a good thing.  AND the last good thing today - we got a smile out of Meagan.  It wasn't any grand effort - her nurse simply walked in and Meagan smiled.  We love love love her nurse today - well, we love a lot of nurses on first floor - but Nurse P was with us through almost all of Meagan's very difficult lengthy stays 2 and 3 years ago, so to see her walk in made Meagan smile.  I love that Meagan reacted this way - with everything going on, it's nice to see she actually has joy at who is coming to care for her.

Now for the "eh" news - I won't say bad because I do believe with Meagan's personality improvements we have to be moving in the right direction.  But, it's still "eh" mostly because of the unknown.  So if there is no bacteria in her CSF, the logical question is...where is it? Well the most honest answer is - who knows.  What we do know is that her white blood count and CRP were very high, she keeps rebounding with a high fever, and she's still (more than normal) sleepy/weak.  So there is obviously infection happening somewhere - as I said previously they have been hitting her hard with two antibiotics that really should cover us with any infectious situation. 

So the plan from here is - continue to watch Meagan's CSF (to ensure no new bacterial growth), look at Meagan's blood cultures as well (to also make sure no bacterial growth), and if those stay clean, hopefully her blood work from today shows her white counts and crp levels have dropped.  Although not an exact "you have *this* type of infection" answer, what that will tell us is that the meds ARE working and we keep on keeping on until she's back to baseline and infections are gone. 

That's basically where we are now.  Dr. R and Blaire said they could get Infectious Disease involved, but, until we see her numbers there is no point because it will just make it a lot more difficult (and probably painful) for Meagan.... so as long as her numbers come back trending the right way, we can chill with neurosurgery and keep killing off whatever is bugging our girl.

It's all about the numbers today! So let's hope we see them going the direction we want! We will keep everyone posted of course and hopefully have some of those answers for you tomorrow.  Thanks again for all the prayers and well wishes!


  1. Glad she is perking up a bit and her personality is coming through. Glad also that her csf culture is clean so far. Praying that the numbers come back in the right direction.

  2. Praying for her healing and recovery!

  3. Praying for her healing and recovery!

  4. Praying for her healing and recovery!