Stephen's Journey: ?

Thursday, April 11, 2013

?

I titled this post with a question mark because honestly, I'm not sure what to say....

This day was supposed to have been Stephen's transplant day. At this point in the day, God willing, Kristin would have been out of surgery long ago recovering well in the comfort of her hospital room and Stephen would have been out of surgery, off the ventilator and making lots and lots of glorious pee! But as we all know, that plan was thwarted last week.

But then....today I got the awesome news that Stephen is now negative for EBV! His blood work from Monday came back and he's below the all important 200 threshold. Just like that.

So now transplant is back on (hallelujah)! We just don't know when yet. CHOP needs to coordinate with Penn, who needs to coordinate with Kristin and find a date that works best for them. We're game for any date, so whatever works best for Kristin and her family is what we'll go with.

And just like that, the emotions are turned upside down; yet again. But at the end of the day, it's just fantastic to know that Stephen is right where he needs to be and we can try this all again!

Happy news for a day that we weren't too sure was going to be that happy just one week ago.

2 comments:

AnonymousApril 12, 2013 at 10:55 AM
Very great news and so deserved for all of you.
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AnonymousApril 12, 2013 at 11:26 AM
Dear Lindsey,
This is wonderful news. We hope and pray that the transplant will happen soon and that both Stephen and Kristen will be on the way to recovery. As always, we will be keeping you in our thoughts and prayers!!!

Love,
Aunt LuAnn & Uncle Dick
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Our Crazy Kidney Life

As many of you already know, our son Stephen, was born with a very rare kidney disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD). When the disease was discovered during my 27th week of pregnancy, Stephen was given a less than 1% chance of living more than a few hours past birth. He was to have such severely underdeveloped lungs that the doctors said he would likely not even take one breath. However, on January 4, 2011, we were granted our 1st miracle - and Stephen came into this world crying (and breathing!) and fighting for his life with fierce determination. At 6 days old he had BOTH of his kidneys removed and began peritoneal dialysis. Stephen came home from the hospital when he was 59 days old requiring 12 hours of dialysis every night as well as enteral (feeding tube) feeds during the day and overnight.

On May 9, 2013, we were granted our 2nd miracle, in the form of a new kidney from an extremely generous friend. Stephen received a kidney from a non-related living donor at the Children's Hospital of Philadelphia. He spent 13 days in the hospital recovering from his big surgery and ever since has been living life the fullest! His life is still a delicate balance of medications and weekly lab work, but he's an extremely vibrant, loving, active 2.5 year old.

This blog is Stephen's journey told through my eyes (his mother's), thoughts, and emotions, with extreme highs and lows. But there's no way we would be where we are today without all of the support, thoughts and prayers from our family, friends, and readers! Thank you!!