Stephen's Journey: Home for the Holidays

Monday, December 22, 2014

Home for the Holidays

Six hours spent in the emergency department, lots of blood draws, flu test, strep test, respiratory panel, EKG, ultrasound and 24 hours later, we were home. Final diagnosis this time was adenovirus; a common community-acquired virus, but for Stephen has been tough to shake after having norovirus earlier this month. Hopefully lots of rest and taking it easy at home will keep us home for good! Much appreciation to the doctors and nurses at CHOP who got us in and out quickly so we could be home for Santa!

Santa did make a special trip to the 5th floor of CHOP all the way from the North Pole while we were there, but someone was getting a much needed nap and missed him.

1 comment:

AnonymousDecember 22, 2014 at 10:59 PM
Hi Lindsey,
So glad you are home for Christmas. We got your card today and it is absolutely beautiful. Stephen has really grown and is as cute as can be. He is the perfect age for the Santa thing---Hopefully Poppy will follow in Uncle Dick's footsteps and play the part of the fat guy in the red suit:)
Love to all....
Uncle Dick and 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!!