A Long Week

Wow, what a week we've had in the Schwartz house!  I wrote half a post last Tuesday after work,but never got it finished because I just couldn't muster the energy to finishit.  While at work last Tuesday, I gottwo shocking pieces of news; Stephen has an infection and another beautiful, courageouslittle girl lost her battle with kidney disease.  Sami Odom and her Mom, Jenifer, were a hugepart of our kidney community and Sami's passing was a huge blow.  She had such a beautiful and fighting spiritand the world is definitely left a little less whole without her here.  Jenifer is my hero and has an immense amountof strength and grace that she passed on to her daughter.  Another one of my fellow kidney Mom's wrotethis post after being asked why she was posting about Sami.  I thought her words perfectly summed up whywe care so much and why I feel such a strong connection to them and theirchildren, and I wanted to share it with you:

 

Not my child?

by Karen Faust McBroomon Tuesday, September 11, 2012 at 8:39pm ·

I have received anemail this afternoon, asking me why I was posting about a girl that had passedaway today. They inquired why I was so upset about this. It's not like I wentto high school with her mom, or that this little girl was my niece. You'reright...she's not...she's my child. No, I did not give birth to her, but shegrew in my heart. This "club" I'm in - the "kidney club",frankly it sucks! BIG time! But I wouldn't want to go through Hell and backwithout these girls surrounding me. We have lost MANY children, in the womb, atbirth, pre-transplant, post-transplant. It's never easy, but I wouldn't missit. And not just because I hope they will stick around and support me one daywhen Matthew passes before me. No - it's because they get it. We FEELeverything together. Each child that I have come to know has given me their ownspecial gift - that may be resilience, grace, humility, courage... the listgoes on and on. So don't tell me how to feel about my family. And make sure youdon't take the health of your children for granted, because some of us wouldsell our souls to be granted the gift of health of our little ones.

I couldn't have said it any better if I tried.

 

And yes, you heard right, Stephen has another infection.  This time, he's picked up c-diff.  Some of you may have heard of c-diffbefore.  It seems to affect people whohave been in hospitals and/or nursing homes or who may have been immuno-suppressed.  It's an intestinal infection that is veryhard to get rid of.  It can stick aroundfor weeks or even months.  Most likelyStephen picked it up when he was on antibiotics for suspected infections andthe antibiotics wiped out the good bugs in his tummy, leaving him susceptiblefor picking it up (probably at the doctor's office where another dialysispatient has it).  So now that he's gotthis infection, he's back on antibiotics and if a kidney became available, hewould not be able to accept it.  Thedrugs they would put him on post-transplant, would only exacerbate theinfection.  So not only was I blindsidedby the c-diff call, but also the fact that the positive culture had come in onFriday, and I wasn't told about it until Tuesday.  Not cool!!! So he went days with an infection and no antibiotics!  Both Bill and I were pretty darn pissed!!  We had a chat with the doctors and I hopethat this will be the one and only time his lab work shows something asimportant as an infection and we're not informed.

But the good news is that Stephen seems to be doing pretty good and I'm takinglots of precautions to make sure we don't spread it in the house and thenre-infect Stephen.  And we Cloroxed thecrap out of the house, so hopefully that will kill it too (c-diff is resistantto even hand sanitizer). We'll do another culture at the end of the week andhopefully this thing will be on its way out! And in another news...Stephen is making huge strides on his talking andwalking!!  He's taking a few steps on hisown and is talking up a storm!!!  His newfavorite words are bird, turtle, roar, ball and of course the ever present mamathat is the equivalent of any other words he needs, but doesn't know it.  And because "roar" is one of hisfavorites, Stephen will be stepping out as a lion cub for Halloween this year,roaring up and down the block.

Here are some recent pics I've failed to share from the past couple ofweeks:

 

 

 

Stephen's guilty look after being caught red-handed munching on his catheter.

Jamming out to Journey on my iPod

Stephen received a special bear from Mini Buddy.  It's an organziation that makes special stuffed animals with "fake" feeding tubes and other medical devices to help children learn about their "special parts" and to help show and educate other children about it.  Stephen's bear has a feeding tube and a mediport.  You can learn more about Mini Buddy by clicking here:  http://www.facebook.com/myminibuddy

Cheering on the Nittany Lions on game day!