Stephen's Journey: Update #2

Thursday, May 9, 2013

Update #2

Stephen is stable and doing well and they are working on making room for Kristin'a kidney. He has a lot of scar tissue built up in his belly from previous surgeries and from bouts of peritonitis so they are slowly, but surely, working through that without causing too much bleeding.

But the kidney is here and waiting patiently in a bowl of ice water to get to work for Mr. Superman!

2 comments:

AnonymousMay 9, 2013 at 3:14 PM
Thanks for the update!!

Keep positive thoughts...
Love,
Uncle Dick and Aunt LuAnn
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AgnewbieMay 9, 2013 at 3:49 PM
Thanks for the update! I've been following you since your maternity shoot with Danielle Hobbs and am so happy that this day is finally here! Holding space in my heart for you, your husband, Stephen, the donor, and her family. Go Stephen Go!!!

-Jill Agnew
Baltimore, MD
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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!!