Stephen's Journey: Up!

Saturday, May 11, 2013

Up!

We were finally able to get Stephen out of bed for the first time in 2 days! He laid on Daddy's lap for a few minutes before we put him back in bed, but it was great to finally get him up for a bit.

He's back to sleep now and has finally been able to get a bit more comfortable. And having his chest suctioned wiped him out too! But the kidney is still doing awesome and making tons of urine. It's just become a very delicate fluid and pain medication balance to get his blood pressure and breathing at the right place.

4 comments:

Ashley Hurt CallenMay 11, 2013 at 2:54 PM
I know just being closer to u and Billy was comforting and healing even if for a quick while. We are constantly praying and checking for updates. Email me if u want or need anything. Xoxo ash, Greg and kids
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AnonymousMay 11, 2013 at 4:20 PM
Prayers continue for Stephen and you.

:) Sheri Roth
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AnonymousMay 11, 2013 at 5:30 PM
Glad to see Stephen out of bed. We know that Mommie and Daddy's touch was a welcome feeling to our Superman. Keeping you in our prayers...
Love,
Uncle Dick & Aunt LuAnn
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AnonymousMay 11, 2013 at 9:35 PM
Nothing better than holding your baby and making him feel better. You are constantly in our thoughts!! Keep up the good work mom & dad! XOXO The Homans
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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!!