Stephen's Journey: Tomorrow

Wednesday, May 8, 2013

Tomorrow

Just wanted everyone to know that we have no set time for Stephen's transplant surgery tomorrow. We know that Kristin will probably be taken into the OR around 9:30/10 AM for her surgery to begin. So Stephen will probably be moved from our room on the renal unit down to surgery "holding" around that time. And then we'll wait there for the two or so hours until they know everything is ok with Kristin and everything looks good. And then they'll take Stephen back to the OR. I'm guessing this might be around noon. Then the surgery will probably be about 4-5 hours. We've been warned by the surgeon that things tend to move kind of slow, so don't be alarmed if we don't hear anything for a long time. As we've learned in the past, you only hear something if things don't go well. But I'll try to update as we learn new information.

Superman is fast asleep now with Bill close behind him and as soon as I know his dialysis is up and running, I'll feel a bit better and will try to get some shut eye too. But I'm thinking it'll probably be an all-nighter. I'm not so good at sleeping the night before surgery!

5 comments:

kristineMay 8, 2013 at 11:32 PM
I just read your story for the first time and I am so incredibly happy that Stephen has a donor and that this time tomorrow your little boy will get to start brand new! I am a mother of a 3 yr old and I cannot fathom the range of emotions you must be feeling, but I was so moved I had to say Bless all of you - I am sending so many prayers to you and the amazingly unselfish Kristen and wish for you a long happy HEALTHY life together! I live in Philadelphia and CHOP is amazing. You are truly in good hands and I pray with all my heart tomorrow brings much deserved and long awaited good news:) Your Stephen is so gorgeous and looks so happy and is obviously extremely strong and determined - not to take anything away from him, but you must deserve part if the credit for that
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AnonymousMay 9, 2013 at 2:51 AM
Lindsey - all of our thoughts and prays are with you! Lots of love - Aimee, Mike, Declan & Kenzie.
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AnonymousMay 9, 2013 at 8:34 AM
Dear Lindsey,
'Thoughts and prayers are with you all. We will be waiting for the good news!! God has a special plan for our Superman and I know He will be at Stephen's side throughout this surgery.
Hugs for all
Aunt LuAnn and Uncle Dick
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The J'sMay 9, 2013 at 10:59 AM
praying praying praying!!!
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AnonymousMay 9, 2013 at 2:03 PM
Praying for your baby boy, Kristen , and both families. God is able.
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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!!