Stephen's Journey: Update #1

Thursday, May 9, 2013

Update #1

The transplant procedure itself started at 12:49 pm. Everything up until this point has gone well; putting in all the lines and the feeding tube. We should receive an update on Stephen's progress every hour on the hour.

We also just heard about Kristin. She is out of surgery and in recovery. Matt hasn't been able to see her yet, but it sounds like everything went really great. She is our hero!!!!!

1 comment:

AnonymousMay 9, 2013 at 1:55 PM
Kristen is living proof that angels do walk among us. We are happy to hear that thing went well and we'll continue to keep her in our prayers.
Love,
Aunt LuAnn
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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!!