Stephen's Journey: Liquid Gold

Thursday, May 9, 2013

Liquid Gold

Sorry I'd really love to tell you absolutely everything right now, but I'm drained. But want you all to know Stephen is doing well. The kidney is amazing and is making good pee. He's still on the ventilator and will be for a day or two until they work out the blood pressure issue and get all the fluid off that he needed for the surgery.

We definitely have some long, tough days ahead, but this has been one incredible day and we owe it all to Stephen's guardian angel and hero, Kristin.

I hope I'm not scaring anyone by posting a picture of Stephen, but I'm sure there are a lot of folks that want to see him (I hope). And I promise to share more once I eat and sleep :)

1 comment:

AnonymousMay 9, 2013 at 10:38 PM
That yellow stuff is MORE precious than gold! Considering what Superman went thru today, he looks amazingly well. We hope all of you have a good nite's sleep. A thank you from the bottom of our hearts to Kristen and all of the doctors and nurses who took part in God's miracle.
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!!