Thursday, October 18, 2012


So, so gorgeous.

Today Shelby had liver clinic. We (Scott, Shelby and myself - Mom and Dad held down the fort with Riley, Avery and Benny) headed in last night and stayed at The Ronald McDonald house because her labs had to be drawn at 7 a.m.  Despite the rain and construction and my whining about both (sorry honey!) it was much better to head in last night then head in at 4:30 this morning. 

Boring ultrasound.  Holding still is *not* in Shelby's vocabulary.
Labs were drawn, we got into ultrasound early, checked in to clinic early, grabbed some breakfast and then walked back in the waiting room just as they were calling Shelby's name.  Clinic was running behind (no big shocker), but we kept busy with our electronics and with a visit from Dan, one of the Snow City Arts artists. 

Shelby, Scott and Dan the werewolf, the witch and frankenstein
Shelby's labs look fantastic.  Her liver is VERY happy.  Her wbc and platelets are still low, but they're keeping a close eye on it.  Her ultrasound looked great!  Her spleen keeps reducing in size from transplant.  Since the blood flow to her liver is good (thus no portal hypertension for my liver people) then they mentioned it could be the CellCept (seconardary immunosuppressant she needs to stay on until she's been off the prednisone for 6 months) causing those blood counts to be low.  Today she got the green light to stop taking aspirin and they weaned her prednisone further.  Instead of taking 5 mg daily she'll take 5 mg every other day :-)  Yay!  The plan is labs in 2 weeks (she also just started Sunday evening taking Hecoria - generic Prograf - so we hope that her liver stays happy with that change).  If those are good, labs in another 2 weeks.  If those are good, too, they she can stop the prednisone and we won't go back to liver clinic for......drum roll please....2 months!!!!!  Fantastic :-)  Thank you donor!  Thank you!

Shelby and Megan :-)
We then headed to the PICU to visit one of our favorite nurses, Megan, and to meet another "liver" mom, Jen, who's little guy, Nate, just had a living donor transplant on Monday.  It was great meeting her and he is doing really well.  
Jen and Me - "liver" moms

Tomorrow is Shelby's 6 month transplant anniversary.  To celebrate with her classmates, we stopped by Garrett's popcorn and got plenty to share with her class.  We're pretty darn happy around here.

Here's some funny pics from our lunch at Ed Debevic's.  Enjoy!

Poor Scott!  Look at what the waitress wrote on his hat!

Me and my middle girl

Scott paid with his Packer's debit card and the waitress brought it back on a plate with a piece of cheese - too funny!

Monday, October 01, 2012

One of those days

Today is one of them.  What is "them," you ask?  *Those* days.  Those days where you think about the miracle of Shelby's transplant, but then you are reminded not everyone gets to experience that miracle.  Not that I am not grateful for Shelby's second chance at life, but where I ask "Why do some people get that chance and others don't?"  Why didn't that baby in the PICU room next to Shelby get to live?  Why didn't Haley get a transplant in time?  Today is the 7 year anniversary of the death of Haley.  A very vibrant, wonderful young life that did NOT get a transplant "in time."  She was 11.  One year older than Shelby is right now.  I have been having several of *those days* since the girls started school.  So much change - all for the better mind you - but change none-the-less.  My body, mind and emotions are replaying last year.  Panic attacks are common, especially at night.  The feeling of she-really-can't-be-doing-this-good and waiting for the other shoe to drop.  Sometimes I am so wrapped in my deep feelings of gratitude for Shelby's transplant and her donor and then I whip around to thinking, but why did she get to live?  Why don't others get to live?  Why didn't Haley get THE CALL?  Right now, I just cannot help but think of all the sadness that was around me in the hospital, that I've seen the past decade with my liver friends...its just there.  Sitting in me.  I worried SO much while Shelby waited that she wasn't going to get THE CALL.  It happens.  It happens a lot.  I just pulled this info off of 
Waiting list candidates as of today 9:56pm115,822
Active waiting list candidates as of today 9:56pm73,847
Transplants January - June 201213,963
Donors January - June 20126,930

There are 41,975 people who need a transplant, but are not eligible (active) at the moment due to being too sick (probably from having to wait too long) or some other formality (paperwork).  Only 13,963 transplants have taken place this year.  Out of over 100,000 who still need ones.  This is just.  not.  right.  So, today is one of *those* days.  Probably not the update you anxiously await for on here, but the reality.  I'm keepin' it real, people.  Real for my fellow liver/transplant parents out there who might have/might be possibly feeling this way.  Hey, you're not alone!  While I am overjoyed and thankful for all the "normal," there is also the reality that the last year was really shitty.  It was.  It took a toll on us.  Grieving that which we endured will take me a while.  I can't not acknowledge it.  Shelby was sick, very sick...deathly sick.  Its real.  There, deep in me some days, and then surfaces on *those* days.