Stephen's Journey: Popped!

Wednesday, May 30, 2012

Popped!

I found Stephen's gtube with a fully inflated ballon in his pajamas this morning when I got him out of bed. That was a first! Thank god it went back in with no problems because who knows how long that thing was out! Typically, the hole closes up within an hour of being out. For some reason, I have a feeling this is going to happen to us quite a bit! Time to start carrying around an extra gtube and syringe around with us! Someone's got some quick little hands!!!

1 comment:

AnonymousMay 31, 2012 at 10:01 PM
Our little cutie is so curious and not old enough to know the negative consequences. Hope the doctors have a suggestion or else one of us needs to develop a new "super glue" for just Stephen's special circumstances!

Let's get him on steak and potatoes ASAP!

Love you all ...... Mimi & Poppy
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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!!