Stephen's Journey: Tough Night

Saturday, May 11, 2013

Tough Night

Stephen had a really tough night last night and morning. He was dropping his oxygen saturation yesterday evening and has been having adverse reactions to the steroids. They pulled the breathing tube around 5 am, but he's struggling to find a way to get comfortable. He has been able to say "daddy" and "mommy" and to tell us how he hates his pulse-ox reader and he's been asking to be picked up all morning, but he's still got too many lines in for us to be able to fully pick him up.

He could definitely use some extra healing prayers today so he can try to at least get some sleep and start healing.

2 comments:

BethMay 11, 2013 at 9:53 AM
Dear Family,

Please know that you and your precious Stephen are in my prayers. I know that God has great plans for your little boy and that He is with all of you at this time.
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AnonymousMay 11, 2013 at 10:02 AM
Dear Lindsey,
Sorry to hear that SUPERMAN had a tough night. Those extra prayers are already on their way. Keep us posted.

Hugs and Love,
Aunt LuAnn and Uncle Dick
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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!!