Stephen's Journey: Good news

Thursday, May 1, 2014

Good news

CHOP discharged us yesterday afternoon with good news: no rejection or prograf toxicity found on the tissue samples. So, they sent us on our merry way!

Now we know the increase in Stephen's creatinine is most likely just a baseline increase or due to growth or some other contributing factor and nothing that's a concern. And we can head off on vacation next week without any worry!!

Stephen's actually at school as we speak probably filling in his teachers and friends about our crazy week and all the fun he had exploring the hospital, zooming around in his pink car, and getting big band aids!

3 comments:

AnonymousMay 1, 2014 at 6:14 PM
Have a safe trip to Florida and enjoy the sun and surf!!!!!!
Love,
Aunt LuAnn and Uncle Dick
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obat herbal ambeienJune 9, 2014 at 10:31 PM
hello,, i'm just visit,, have a nice day :D
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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!!