Good and Bad News

I guess we'll start off with the bad news and work into the good news. On Wednesday morning we got the unexpected and very exciting call from CHOP that there was a kidney available and it appeared as though it was a near perfect match for Stephen. We got the call right at 8 AM and they had started the cross matching about an hour prior to calling us. The only concern with the kidney was its size (I'm guessing it came from a large male), so the surgeon was going to wait to make the final decision on Stephen once he got his eyes on the actual kidney. But when she asked me if Stephen was healthy, I had to divulge the fact that he had a positive test for c-diff. But since he was not symptomatic (he never really exhibited any of the classic c-diff signs), she thought the surgeon would be ok with that. But about 10 minutes later I got a return call from the nurse that we would have to pass on the kidney for Stephen. The surgeon felt it was too dangerous to go forward with the transplant. It was a crushing blow. My greatest fear with this c-diff had come true.

But because of what happened, I insisted we do a second culture to confirm he really had c-diff. And this afternoon I got the call that Stephen's second culture had come back negative!! Yippee!!!!! They require two negative cultures, seven days apart, for you to be "cured" of c-diff, but it's so good to know we're on our way.

So I'll keep up the crazy bleach and hand washing and cleaning regimine just in case, but at least there's a light at the end of the tunnel! Although this does beg the question, "did Stephen ever really have c-diff?" But for now we can't dwell on the missed opportunity. We've just got to keep moving forward and hope for another perfect kidney to come our way....soon!

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!

 

Walk for PKD

A few weeks ago, I received an email from the PKD Foundation asking if we'd like to share Stephen's story to help promote the Walk for PKD to raise money and awareness for Polycystic Kidney Disease (PKD).  Cities around the country will be holding walks this Fall to raise money to help find a cure for this terrible disease.  Currently there is no cure or medication available to prevent and/or treat both forms of PKD; ADPKD and ARPKD.

Today, the PKD Foundation published what I submitted along with a picture of Stephen.  I hope that through our story, at least get one person will consider signing up for a walk or donating to the PKD Foundation.


Below is the what was published.  You can also see it here:  http://eepurl.com/o3JPP

My son Stephen is one of the many faces of PKD.  He was diagnosed with ARPKD before he was born when doctor's discovered his kidneys had completely stopped functioning.  Because there is nothing that can be done in utero to fix a baby's kidneys, doctors gave Stephen a very small chance at life.  But Stephen has proven to be a fighter and has overcome much in his short 19-months, including having both kidneys removed at 6 days old and living on peritoneal dialysis.  He is a beautiful, vibrant, and happy little boy who is waiting to receive his gift of life via a kidney transplant.  Please form a Walk for PKD team or join an existing team and help us raise money for research so we can better understand PKD and how to prevent future children from inheriting this disease.          - Lindsay Schwartz

---

Autosomal recessive polycystic kidney disease (ARPKD) is a rare form of polycystic kidney disease affecting 1 in 20,000 infants and newborns. Everything raised from the Walk for PKD can help those, just like Stephen, who face the challenge of fighting PKD every single day. 

It's easy to do. Go to walkforpkd.org to register and start fundraising today. Donations, big and small, make a difference. Last year, ARPKD families raised more than $200,000 during the Walk for PKD. Let's raise even more this year, so we can get closer to the finish line. 

By giving a little time, and raising a little money...you'll give A LOT of hope. Hope that one day, there will be a cure for ARPKD - so stories like Stephen's, will be a thing of the past.

Register and fundraise for your local Walk for PKD today and see what a difference you can make. Share Stephen's story with your friends and family and ask if they'd like to contribute to this cause.
 

Mischievous

So my little devil of a child decided this afternoon that he'd like to know how betadine and peritoneal dialysis fluid takes.  Uh-huh, that's right, Stephen uncapped his peritoneal dialysis catheter today and shoved it right in his mouth.  Awesome.

I knew he had woken up from his nap and had been rolling around in his crib a bit, but I left him in there hoping he would go back to sleep because he had only been sleeping for about an hour and half.  When things got really quiet, I figured he had fallen back asleep.  But when I checked the monitor, he was sitting upright lounging back on his crib.  Went I went in, he had the tip of the catheter right in his dirty little mouth.

I knew there was a day when this was a possibility, because I had heard other Mom's having the same problem with toddlers, but since Stephen never took an interested in catheter before, I figured we were good to go.  But that little devil reached right in his "catheter spanx," pulled out his catheter, uncapped the end, and stuck in his mouth.  I have to say, it was quite a feat for him to be able to do all of that!!

So I took him in to the nephrologist and they've taken a culture and started IV antibiotics (in his dialysis fluid).  Hopefully this will just be a funny to tell later and won't result in any sort of infection.  But from now on, I'll be doubling up on safe checks for the catheter and wrapping in some sort of saran wrap or press'n'seal.


In other events, Bill and I were back at the University of Pennsylvania yesterday to finish up my evaluation to be a kidney donor.  We met with another social worker (aka donor advocate) and the nephrologist and I had to give some more blood and had a CT scan.  The appointment with the nephrologist was to go over all of my test results, health history, have a quick exam, and to talk about all the risks.  I think it was a very productive appointment and we learned a lot about the process and the donor "selection" process.  The nephrologist will present my case to the transplant committee and the final decision will be made as to whether or not I'm a fit donor.  But unless something crazy showed up on the CT scan, like having only one kidney or some weird kidney anatomy, I will be accepted as a donor, no problem.  Then it's just waiting until we find a paired match and for the surgery to be scheduled.  And then the real craziness will begin!!

20 Months!

Can you believe it?!?!  My little miracle baby is 20 months old today!! Where has the time gone??!?! People always tell you that time flies and your kids will be teenagers or adults before you know it, and you know what....they're right!!  I think back to last year and I can't even remember Stephen when he was a little baby.  I don't remember what we did on a daily basis other than all of the doctor appointments and hospital stays.  Like what we did on normal days.  Now some days are filled with doctor appointments, but most days are filled with regular stuff like errands and walks and jaunts to the park.

I wish I had done a better job at tracking Stephen's milestone's like the first time he rolled over and the first time he said Momma.  It's the normal stuff that I sometimes forget to write down (and maybe I have done some of that and it's embedded into this blog) and I definitely haven't kept a baby book.  I now realize I forgot to track Stephen's height on a growth chart.  Thankfully his doctor's keep excellent records of that on an almost weekly basis, so I can go back in and fill in the holes, but I want to be better about writing this stuff down.  Stephen just amazes me right now.  Everything he does and says is just such a gift!

I'm in awe of his accomplishments and every time he does something like crawl across the floor to get a ball or says a word, or reaches for a glass of water, I just get the biggest smile and feel so damn proud of him!  This is the boy that everyone told me would never live more than a few hours.  The little boy that was never given a chance.  And now he's this beautiful, amazing, loving, fun, happy (except for the occasion toddler-like tantrum when I think my child's been replaced by the devil) little boy who tells every single person he sees "hi" and "bye."  And how loves to climb up stairs more than anything and who can work an iPhone/iPad/iPod like no one's business!  And who most of all loves music!!

He loves seeing other children and calls them all "baby," he still can't live without his monkey or his binkie (and that's fine by me), he wakes up screaming in the middle of the night so that Bill or I have to go in and pick him up and rock him back to sleep, like every other toddler, he loves Elmo, he is talking up a storm and says so many words now like dog, bird, backpack, Poppa, help, hat and understands directions and a lot of what you tell him.  He LOVES getting a tubby in our kitchen sick and throws a tantrum every time we take him out, he hates being put on his back because he knows that usually means something's going to happen, but songs like "the wheels on the bus" and "the itsy bitsy spider" usually  do the trick to calm him right down.  His favorite book is the "Fire Engine Book" and Eric Carle's animal books like, "Brown Bear, Brown Bear."  Every time he pets Mabel, he laughs and he loves chewing on toothbrushes and standing at the bathroom sink with me.

But most of all, he's so affectionate! He loves to give hugs to anything and everything and it melts my heart every.single.time.

I took two little videos of Stephen tonight so I can remember just how much I loved that little voice with the slight southern twang.  I hope it never goes away!!!

[If you can't view the embedded videos, go to My Channel on YouTube to see all of Stephen's videos]