Stephen's Journey: Recovery

Thursday, June 30, 2011

Recovery

In recovery with our little Superman and he's hangin' in like a champ. I just had a little cuddle session with him on his gurney and now we're getting ready to head upstairs to the PICU.

Thank you all so much for all your prayers, thoughts, and well wishes!! I can't tell you how much we appreciate each and every one!!

XOXOXOXO
Lindsey

2 comments:

AnonymousJune 30, 2011 at 7:12 PM
Wow!! What a trooper!! He looks absolutely woderful! He's relaxed and doesn't appear to be in a lot of pain. Hopefully you all will have a good night's rest and tomorrow will be even brighter....
We will keep those prayers coming....
Love,
Aunt LuAnn and Uncle Dik
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MaDukesJune 30, 2011 at 8:34 PM
Lindsey and Billy,
Please KNOW that we have had ALL of you including the Grandparents in our prayers and in our hearts ALL day. Your absence here at St James is definitely apparent. We are all praying for you. So good to see how peaceful Stephen looks. We pray that you ALL have a quiet and restful nite and that Stephan is not in too much pain. Love all of you.
God Bless, Kathy and Rich Caruso
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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!!