Stephen's Journey: Not Again

Wednesday, November 23, 2011

Not Again

It's 4:15 am on Wednesday morning and Stephen was just admitted to the pediatric intensive care unit (PICU). He's got a really nasty case of peritonitis. No idea how he got it but he spent almost 6 hours crying tonight so we knew something wasn't right. We brought him in around 2:30 am and we're now just waiting to be moved upstairs from the emergency room. Looks like we'll be spending another holiday inside the confines of Fairfax hospital. How depressing.

3 comments:

ciaraNovember 23, 2011 at 11:17 AM
So so sorry to hear this news. I know you were probably looking forward to a thanksgiving with family and friends. Maybe Stephen just wanted to make a visit to the hospital and give thanks to all those who have helped him. Stay strong and positive! happy turkey day - try and make the best of it!
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UnknownNovember 23, 2011 at 1:24 PM
I am so sorry to hear this news. We will be saying extra prayers for you guys. Lots of love!

Sarah
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AnonymousNovember 24, 2011 at 10:22 AM
Hi Linds,
We were on vacation last week and were excited to read about your visit to CHOP. Sorry to hear that Superman has had a set back. We will be keeping all of you in our thoughts and prayers.
Love,
Aunt LuAnn
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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!!