Tuesday, January 29, 2013

Date Is Set

I can proudly announce that we officially have a transplant date set! Our scheduled surgery date is Thursday, April 11th, with us "reporting" to Philadelphia for blood work and testing on Tuesday, April 9th. Stephen will be admitted to the hospital the day before the surgery and Kristin will be admitted the morning of and then all of our lives will be changed forever!! It's so awesome to finally know that we have a HUGE light at the end of the tunnel and this is really going to happen....but, we also have to overcome this stupid c-diff hurdle first.

So Stephen will take his last dose of vancomyacin on February 5th. Then he'll have two weeks of another antibiotic called rifaximin. And then a week after his last dose of rifaximin, we can take a culture to the lab to find out if he's done with the cdiff. Right now is the critical period of the vanco taper in that he only gets a dose every three days. So if he was going to be symptomatic, now would be the time. So far, so good. But....(another big but), he hasn't ever been symptomatic, so I'm not holding my breath. We're just chugging along, doing what we've been doing with the bleaching and the cleaning all this time, and hoping for the best! And in the meantime, we're seeing the immunologist tomorrow to set Stephen up with an IVIG infusion that will help to boost his immune system to also help fight off the cdiff.

When Stephen was an infant and throughout his first 9 months, they would regularly check his IGG levels (a marker of your immune system) because his has always been low. He had a few IVIG infusions in the hospital (some he didn't handle well and his blood pressure would plummet), the last one which was around 9 months of age in the sedation unit. He handled that one well and we haven't had to do one since. But a doctor out at Cincinnati Children's suggested it might help with the cdiff, so we took a blood level and wouldn't you know, Stephen's IGG is low. So we'll give it a shot and hope it helps! But Dr. Alpan, the immunologist, who we see tomorrow, will give the final word.

Oh and then we should know about the culture on or around March 5th. Just in time for Aunt Jess' birthday! And then we'll know for certain whether or not we can start planning for April 11th. I found out today that one of my friend's daughter's birthday is April 11th. Her beautiful baby girl Sami lost her battle with kidney disease this past year on September 11th. I really don't think it's a coincidence that Sami's birthday and Stephen's transplant date are the same day, so now I'm even more hopeful that we'll be this stupid cdiff!

But in the meantime, I have a big favor to ask. I've started the search for a furnished apartment in the Philadelphia area (in the city and outside) for the 6-8 weeks that we will be there. If anyone has any connections they'd be willing to share with us, I'd greatly appreciate it (email LSchwartz531@gmail.com). Ideally, it would be wonderful to have a 2 bedroom apartment, but they are definitely on the pricey side when you lean towards the corporate rentals, so it would be nice to see what else is available. I'm hoping one of my awesome readers might have a great hook-up they'd be willing to share.

Thank you all so much for all the emails, texts, and comments you've left about Stephen and his hero Kristin! We so appreciate all of the prayers and support!!!!

Thursday, January 24, 2013

Snow Day!

Here in Northern Virginia we got about two inches of snow overnight, making it Stephen's first real snow accumulation.  So this morning after physical therapy, we buttoned up, put no our snow boots, and headed outside.  Well, I put on my snow boots but Stephen didn't like his.  So his snow boots went back into the closet and on went the sneakers.

He seemed to think the snow was pretty cool, but as I suspected, was nervous to walk around the backyard by himself and clung to my hand with his little mittens; except when I pried his hands away to get a few pictures.  We've been working on sensory stuff to try to get him liking different textures (he hates anything on his hands such as paint, food, etc), so I figured this would be the perfect opportunity to touch a new texture!  But it's hard to learn the texture of snow when it's so cold!! Hopefully we'll get some more snow with what's left of Winter, so Stephen can learn to love the snow and get excited when we see the white stuff!

I hope everyone who got snow is enjoying their snow day as well and staying toasty warm inside!

Sunday, January 13, 2013

The Most Incredible Gift!

It's with unbelievable joy, happiness and gratitude that I'm finally able to share with the world our incredible news; we have a kidney donor! I apologize for not sharing the news sooner, but we didn't want to share the news too soon and jinx ourselves or share it before the entire process was completed. And also out of respect for the donor and her family.

The donor has given me her permission to tell you all about this, so I guess I might as well start at the beginning and tell you everything. Billy's best friend from college and roommate at South Carolina is Matt Freeman. His wife is Kristin and they have three adorable little girls. The Freeman's have been following Stephen's story from the beginning and Kristin told us long ago that she was O+ and wanted to get tested when the time came. We of course greatly appreciated her concern for Stephen, but have all along hoped that it would not come to the point where we needed a friend, especially one with three small children, to donate to Stephen. But as you know, we had a few false alarms, a donor fall through, and then the cdiff.

But Kristin maintained her assurance that she wanted to be tested and so the process began in late Summer/early Fall. It took a while logistically to get everything coordinated between CHOP, UPenn and Kristin who is in Wilmington, NC (the hospital's sometime seem to move at a snail's pace), but some time around October after Kristin has sent in her blood work multiple times, we got the confirmation that Kristin was an initial match. And not only was she a match to Stephen, but she was a near perfect match! Dr. Baluarte described the match as one he would actaully expect to see between a parent and a child. We were shocked!! Albeit a very pleasant shock. It just seemed to good to be true. So we maintained a quiet excitement between ourselves and our family.

Then came the actual medical evaluation at UPenn. In early November, Kristen and Matt flew up to Philadelphia so that Kristin could complete the two-day medical evaluation. The results indicated that Kristin still appeared to be a great match, but the doctors wanted to her to have a few things checked out just to be completely sure the surgery wouldn't cause any secondary health concerns for her.

Fast forward to this week. All of her additional tests came back good and she was cleared by not only her primary doctors at home, but the entire UPenn transplant team and has been given the "go-ahead;" so she's officially been accepted as Stephen's kidney donor. The team at UPenn met with our doctor team at CHOP on Friday to discuss scheduling the surgery and the remainder of the details. Which is just mind blowing to think about it! I cant believe we've finally got this far and I can now say we have a donor for Stephen!

Based on Stephen's current cdiff infection and timing for Kristin, we believe that the surgery could be in early April. Which would be great because it will give us time to get Stephen healthy while also avoiding cold and flu season. And then he'll have all Spring and Summer to recover and get things on track before school and flu season rolls around again. And it should also give us time to plan for logistical things such as where we'll stay in Philadelphia after the surgery but before they let us come home.

It's an awesome feeling to know that we've finally gotten through this huge hump and milestone, really, but I still feel some trepidation over accepting Kristin's incredibly kind and generous offer of her kidney. What I mean is that this is such a HUGE offer from someone! And although the risks are low, there still are risks that could have a huge impact on her and Matt and her daughters. I've really struggled with this and still do. As a mother, I feel like this should be my burden to bear, not hers. And Bill and I really did consider not allowing anyone to donate a live kidney. That we would either wait for a cadaver kidney or for a paired exchange. But ultimately, we have to do what's best for Stephen, and this is obviously what is best. Especially since Kristin is such an unbelievably good match with Stephen!

One day I hope I will be able to return the favor in some way or find a way to appropriately thank her, but for now, I guess I can just tell the world about what an incredible friend, mother, and human being she is to save my son's life and to give him the kind of life he so desperately needs and deserves.

I also want to thank every single person out there who has read our story, shared it with others, and who has offered to be tested and/or got tested for Stephen. The outpouring of support and kindness has been incredible and I sincerely have appreciated each and every message. And now that we've finally gotten over this mountain, we can start looking forward to the next climb and the awesome things that are to come for our little Superman!

Thursday, January 10, 2013

Still Under the Weather

I think Stephen's feeling his sickest (is that even a word?) today since getting sick on Sunday. He was up all night coughing and because of the coughing has been throwing up his feeds and of course is exhausted. He slept in the car all morning (when we for a drive to get out of the house) and then when we got home, wanted to sleep more on the couch. So I just put him back in his crib and its only 11:45. Poor guy! He still has a low-grade fever, but because it isn't over 101.5, there's no reason for concern. And the pediatrician said his lungs sounded good, so need to worry about pneumonia.

But I know he's feeling really crappy because he laid down on the couch this morning. He's never laid on the couch....ever! But I guess when you've been sick for 4 days, you start to perfect lounging on the couch! Thankfully, I'm feeling human again, so it's much easier to take care of him now that I'm no longer feeling like death. There has been a lot of Elmo and Sesame Street in our house the past couple of days. Thank goodness for PBS! But this virus is seriously nasty! I feel for anyone who has picked it up!

Monday, January 7, 2013

Germs, germs, and more germs

Well we're all now infected with lots of germs in our house including poor Stephen. He's a snotty, sneezing, coughing mess and I'm just thankful I already had the germs myself or I certainly would be getting them from him now. The poor little guy has been so congested that he hasn't really been able to sleep and he's been running a fever for over 24 hours. So we're heading in to see the pediatrician in the morning. Although I'm pretty sure we've just got to let this thing run its course. And unfortunately, that's a good week. I'm still not back to normal yet myself.

And then I guess I'll need to start sanitizing the house. Fun fun.

I hope you all are able to avoid this flu!! Put yourself in a big bubble right now before its too late! :)

Friday, January 4, 2013

Happy Birthday Superman!!

My amazing little boy turns 2 today!! I am so incredibly proud of him and all he's accomplished in his short time here. Thinking about this day two years ago brings an incredible flood of emotions and thoughts back, but truly it was an amazing day and I wouldn't change a minute of it (even the 16 hours of labor)! Every single star in the universe aligned that day (those who were there that day know exactly what I'm taking about!) to bring us our miracle baby!! And now just look at him!! He's proved a lot of people wrong and shown that anything is possible with love and determination! He is my hero!!

I had grand plans for a great birthday post, but I've come down with a raging viral sinus infection and flu-like symptoms and have been in bed the past two days. So I apologize for the lack of a birthday post. We've even post-postponed the birthday celebration by a week :( So as soon as I'm feeling better, I promise birthday pictures and lots more!

Wednesday, January 2, 2013

Happy New Year and Our 2012 Christmas Card

Happy 2013!! Can you believe it's already New Year again?!? Why is it that the older you get, the faster the time seems to go? I hope everyone had a very nice New Year's Eve and Day and was able to take some time off to spend with family and friends.  We had a very quiet New Year's Eve this year at home. It was basically spent like every regular Monday night in our house with tubby time, bedtime, dinner at 9PM and then laundry and TV until we fall asleep around midnight.  Pretty typical Monday night.  On New Year's Day, we had some friends over for a little party to watch football (more importantly for Bill the South Carolina Gamecocks...thank goodness they won!) in Bill's new "man cave."  We've officially got it all set-up with a big screen TV, comfy couch, toys for the tots, and booze for the grown ups.  So it was fun to finally be able to have friends over.

And of course the New Year had to mean that Stephen's insurance would get all screwed up.  So I (honest-to-God) spent over 3 hours on the phone this morning with Medicare trying to get everything all straightened out.  WARNING:  If you are a Medicare Plan D recipient, call your provider and make sure your Plan hasn't changed!!!  Apparently, Stephen's plan, HealthNet, was bought out by Silver Script, so he was supposed to just roll over into Silver Script.  But for some reason, he dropped into the Medicare Black Hole and didn't get rolled over.  Not only that, but I never received any notice of this happening.  So when I went to refill one his scripts today, it was rejected.  It took them 2 hours and 32 minutes to figure it out.  And then the drug isn't even covered by the Plan.  So...now I need a prior authorization to get it covered.  Ugh.  It's exhausting!!  Thank goodness Stephen was a champ this morning and just played in his playroom and ate lots of ice while I struggled on the phone.  But seriously, check this out if you are in a Medicare Plan D because this apparently has happened with other people as well.

I also wanted to share with everyone (sorry it's a little late) this year's Christmas card.  Last year I posted are card here and had written a note on the back to everyone about Stephen and how he was truly our special miracle.  This year, we kept it really simple and let the card speak for itself.

Especially with Stephen's 2nd birthday coming up at the end of this week, I'm feeling truly blessed to have Stephen in my life and that Bill and I have survived this roller coaster ride together.  The Holidays seem to make people more sentimental and thankful for what they have and I especially feel that way.  Too many of my friends are struggling with their special babies right now or have lost their angels this past year, so I'm especially thankful and blessed right now.  Not a day goes by that I don't hug Stephen a little bit tighter when we sit down in his rocking chair before bedtime and I think about those friends.  There is no rhyme or reason why God chooses one baby over another, so I'm incredibly thankful and lucky to have mine here to hold and that he's thriving.

I think for 2013, our biggest wish and dream is just to keep Stephen healthy. We of course hope that this will  be our year for a new kidney, but honestly, as long as he continues to grow and thrive and stay healthy, I'll be happy.  Health and happiness for our family would be the best New Year's resolution!!