Stephen's Journey: Staying For Awhile

Saturday, September 7, 2013

Staying For Awhile

Unfortunately, we weren't lucky enough for this to be a viral infection. Stephen actually has a blood infection; a first for him. The infection is thought to have been caused by a GI or urinary bug and not from his port (central line). Final cultures are still pending so we don't have all the details, but we will definitely be hunkering down here in the hospital for awhile until this is under control. And most likely removing his port to eliminate it as a source of infection. Just hoping my little guy starts feeling better soon! Poor thing is so miserable 😷

2 comments:

AnonymousSeptember 7, 2013 at 11:34 PM
All our love and prayers for a speedy recovery --- and for all three of you to get sleep! (And get back home ASAP.)

Love and kisses to our little Superman!
Mimi and Poppy Noll
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AnonymousSeptember 8, 2013 at 12:18 PM
Sending prayers to all of you and wishes for this to pass quickly.
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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!!