Stephen's Journey: ER

Saturday, December 17, 2011

ER

We're currently in the ER. Stephen's cough is now a partially collapsed lung. Doctors still don't know what has caused this but there are a couple of possibilities which include RSV or bacterial pneumonia. In any case, it's not good. He's being admitted back to the IMC until they can get this sorted out. To say we're stressed and frustrated is the understatement of the year.

3 comments:

AnonymousDecember 18, 2011 at 6:17 PM
I am so sorry to hear this news, and am hoping and praying for a fast recovery for Stephen. Please know my family and I think about you all every day.
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AnonymousDecember 18, 2011 at 7:04 PM
Come on Stephen, we are all counting on you being home for your first Christmas. Show those nasty germs who is boss. Feel better realy soon. You are in our thoughts and prayers.

Love,
Aunt LuAnn and Uncle Dick
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AnonymousDecember 18, 2011 at 8:29 PM
I spoke to your Mother earlier today and she filled me in on the latest news. I told her your little guy is a fighter!I know that this is extremely tough on everyone.
My prayers are with you.....
Sue

PS Your family portraits are beautiful! Thanks for sharing.
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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!!