Stephen's Journey: Quick Update

Thursday, January 13, 2011

Quick Update

Just wanted to share the good news that Stephen was taken off of the ventilator this morning! He is back on CPAP, but he's doing really great without the ventilator and both lungs are inflating really well. His left lung the other day was having trouble inflating, but that appears to have corrected itself. And his nurse Connie was able to fix that also by changing the position he was laying in to help facilitate the lung to inflate fully. He'll have another x-ray this afternoon to check his lungs again and they are changing the dressing on this PIC as we speak, and then I should be able to hold him this afternoon.

This morning he's been resting and sucking away on his pacifier while we listen to The Beatles and a little country music. This afternoon I hope to finally share with everyone some pictures and details from Stephen's baptism on Sunday. I totally forgot I hadn't shared that yet. My apologies!

6 comments:

ciaraJanuary 13, 2011 at 1:58 PM
Wonderful news. I can feel how big your smile must be as you post the good news.
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AnonymousJanuary 13, 2011 at 2:56 PM
Greg & I are so happy to hear all the good news! Thinking of y'all constantly.
xoxo, ashley (callen)
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UnknownJanuary 13, 2011 at 4:08 PM
Yay Lungs!!! That just made my day! Still praying... Lots of love.
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AnonymousJanuary 13, 2011 at 7:46 PM
It is amazing to read about Stephen and learn how such a little guy can be so strong. I hope you both get to cuddle him soon.
Kerri
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AshlyJanuary 14, 2011 at 11:42 AM
That's awesome!! Keep on going Stephen!! Show them the miracle that you are!!!

Ashly
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{darlene}January 14, 2011 at 1:04 PM
Oh, that is wonderful news about his lungs. He is a little miracle!
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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!!