Stephen's Journey: Home

Thursday, December 15, 2011

Home

It's 2:45 PM EST and we got home about 20 minutes ago. Stephen's taking a nap in his own bed, I'm unpacking everything (you accumulate so much stuff in the dang hospital) and Bill headed back to work. We would have been home well over an hour ago, but when the nurse de-accessed his Mediport, she stuck herself with the needle. So it was a huge long process of them trying to figure out what to do and then drawing more blood from Stephen.

The only problem is, my little guy picked up a nasty cough while in the hospital and I fear it's not going to go away without putting up a fight :(

1 comment:

AnonymousDecember 16, 2011 at 9:02 AM
Happy that Superman is home with Mommie, Daddy and Mabel. I am sure he is enjoying his first Christmas tree and all the decorations. Hopefully the cough is only a side effect from the anesthesia/intubation and won't be too difficult for him to fight. Tell him Uncle Dick is going to fly up to the North Pole next week to check and see if Santa has the reindeer hitched up properly. He will make sure Santa knows what a good guy Stephen has been and make sure that there are lots of toys for him in Santa's sleigh....
Love and prayers to all of you...
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!!