Stephen's Journey: Update #3

Thursday, May 9, 2013

Update #3

Kidney is in!!! We don't yet know if its working because they haven't connected all the "tubes," but it sounds like everything is going good. They do still need to pull out the PD catheter and of course patch him up, so it will be another 2-3 hours.

But good news so far!

4 comments:

Sheri Roth, (Brenda Noll's cousin)May 9, 2013 at 4:55 PM
Thank you for keeping us all posted. I have been in prayer all day and anxiously await the next post!

I have followed these posts since the beginning and have been so blessed by your honesty as you have poured out your heart to so many.

Continued prayers!
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AnonymousMay 9, 2013 at 4:57 PM
WONDERFUL NEWS!! Coming down the home stretch in the brand new chapter of SUPERMAN-The Miracle!!
Love,
Aunt LuAnn & Uncle Dick
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AnonymousMay 9, 2013 at 5:27 PM
A different comment from the usual - I love your Aunt LuAnn & Uncle Dick. They're awesome commenters.
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Charlene FreedMay 9, 2013 at 5:45 PM
Wonderful news! Lots of prayers going up on behalf of Stephen, Kristin and families today. Hope all news is good news.
Love,
Charlene
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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!!