I keep waiting for more information to update, but it's just not coming... Emerson's fever curve is down & she's in good spirits, but... she's still having fevers and her labs are concerning for something.  We just don't know what.

Her blood cultures remain negative & for now they're calling it culture negative sepsis (which I guess actually happens quite often, although it's never happened to her).  Essentially it means she looked septic & she's responding to antibiotics, so for lack of any other significant finding we'll call it sepsis.  I'm not sure, but okay.

Emerson was admitted to the hospital Sunday afternoon.  She passed out in the bathtub Sunday morning with a blood sugar of 40 (very low).  Sunday evening she started spiking fevers and this afternoon they climbed to over 104 degrees.  She was taken to the OR yesterday for a central line after repeated attempts to secure a peripheral IV (even with guided ultrasound) were all unsuccessful.  She really has no peripheral access left & very little central access either - it is quickly approaching the point of significant concern.  

She certainly appears to be fighting an impressive infection.  She's receiving potassium tonight & will require a blood transfusion tomorrow.  Still, though, they've been unable to identify the source of it all.  Blood cultures, as of tonight, remain negative.  

School started this week (for me) & I’m up to my eyeballs in reading, and functions, and scientific notation, and periodic tables, and…  Yikes!!  I’m oddly enjoying it, though, & much to my surprise am really having fun with Chemistry.  I’ve even found myself awake into the wee hours of the morning lost in Chemistry equations… wow, very uncool - now how’s that for some honesty?!?

...they're words heard frequently in our house right now.  You see, Emerson is very into the season this year but... as hard as she tries, every attempt to say "Christmas" comes out "Ketchup".  So... Merry Ketchup it is !

I've been very hesitant to say it before now, very afraid to jinx it, but it's true.  It happened. Emerson, indeed, is home for Christmas!  Her first Christmas at home since the year she was born, 5 years ago.  I could not have dreamt a better gift.  I sincerely hope your day was equally blessed.

Check back for pics & a detailed update (lots of fun stuff) in the coming week.  Until then, from our house to yours... "Ho Ho He He Meeeerrrrrry Ketchup"!!

I hope this entry finds everyone enjoying the hustle & bustle of the Holiday Season and remembering what is most important through it all… time spent with loved ones, not the purchase of the latest and greatest, hard to find Holiday gift of 2011.  I’m listening to Christmas music as I write, all my babies tucked in tightly for the night.  Candles burning.  Christmas trees lit.  Still lots to do for Emerson, but at the moment peace & quiet... ahhhh, it's a beautiful thing!

Emerson was discharged.  We’re home .  I’m sick  – sore throat & swollen glands… uggh!  The boys are sick  – stomach flu & bronchitis… double uggh!  Emerson, believe it or not, is the healthiest of us at the moment.  Now that’s a scary thought!  I’m giving meds a little early tonight, brewing some Theraflu, & crawling into bed…  Sweet dreams to all!  

Who is that blonde princess in our room today??  Could it be…

Can you possibly imagine how it feels to wake up every morning & wonder if today is the day?  Can you possibly put yourself in the place where you feel like you’re waiting, patiently, for that day to come??  I sincerely hope not…  I have a meeting scheduled with the medical director & social worker from Pikes Peak Hospice next week.  We’re definitely not ready to pursue traditional hospice for Emerson right now, but are hoping they may be able to help us find some middle ground.  We’re hoping they can help us stay at home & pursue our goals of more time together as a family while still accepting that we’ll seek hospital intervention in the face of significant decompensation.  From first impression it appears they’ll do whatever they can to help.  For now, though, Emerson remains in-patient at Denver Children’s Hospital…

First & foremost, let me explain my recent absence here… Emerson was discharged from Omaha, as planned, about 3 weeks ago.  Our days, since then, have been some of the most hectic I’ve ever experienced.  Princess Emerson has always been complicated, but the new “plan” I devised has taken her cares to a whole new level.  I’ve been averaging about 3-4 hours of sleep a night, with the occasional 2 hour night here & there.  My diet consists of whatever I can grab quickly – mostly chips, cookies, & diet Pepsi.  I haven’t even opened my laptop… haven’t replied to texts or phone messages… haven’t even read any emails.  You won’t believe what isn’t getting done in my life.  Then again, looking at Emerson’s medical plan, you might just not believe what actually is getting done!