Stephen's Journey: Back to Philly

Wednesday, December 17, 2014

Back to Philly

Well...bags are packed once again and we're heading to CHOP. Stephen just can't kick whatever virus has taken hold and he's sick once again. They'll be assessing him this afternoon in the Emergency Department and then probably admitting him to figure out what's causing all the discomfort in his belly and the fevers. He hasn't really slept in 2-3 days and is beyond exhausted. He finally fell asleep in our bed around 6 AM and has been out ever since. Just waiting for him to stir a little bit and some laundry to dry and then we'll be hitting the road to beat the evening rush hour.

Just hoping and praying we'll make it home quickly and stay home!

1 comment:

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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!!