Stephen's Journey: Update

Thursday, June 30, 2011

Update

We just met with the surgeon and Stephen is out of surgery and doing great! The surgery was more difficult than expected, but all three hernias were fixed and the Mediport was successfully put in place. His breathing tube is out and we should be able to go back and see him shortly. Our little fighter did it again!!

4 comments:

CIARAJune 30, 2011 at 5:19 PM
YAY!!!!!!!!
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UnknownJune 30, 2011 at 5:32 PM
WAAAHOOOOO!!!!!!!!! PRAISE THE LORD!
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Charlene Cerasa FreedJune 30, 2011 at 5:33 PM
Great news!!! Hope he heals quickly!
Hugs to all,
Charlene
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AnonymousJune 30, 2011 at 5:51 PM
Dear Lindsey and Bill,
So glad to hear tht all went well with Stephen's sugery. He certainly is our little SUPERMAN! We talked with your Mom on Monday evening and she gave us some of the details. It is so good to know that his dialysis will be more effective now that the hernias are repaired and you will not have any more tough times with the blood draws. The prayer chain at church has been "working overtime" this week for all of you and especially Stephen.
Love,
Aunt LuAnn and 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!!