Stephen's Journey: Surgery is Done!

Thursday, May 9, 2013

Surgery is Done!

Heading to the ICU to see Stephen right now!

3 comments:

AnonymousMay 9, 2013 at 7:37 PM
Yea ! God bless , time for him to heal sending prayers and hugs ! Carrie Tom CC Tommy and Quentin
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AnonymousMay 9, 2013 at 7:52 PM
Thanks to God for answering all of our prayers!! Sending lots of love and healing kisses to SUPERMAN!!
Love,
Aunt LuAnn and Uncle Dick
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AnonymousMay 9, 2013 at 8:11 PM
Sweet Stephen , Bill and Lindsey,
Thinking of you today , praying for successful surgery and uneventful postop . Looking forward to seeing you back in VA
Martha Betts
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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!!