Stephen's Journey: Quick Update

Friday, May 10, 2013

Quick Update

My apologies, I started working on a post this morning about everything that transpired last night and got part way through when the doctors came for rounds this morning. Since then I've been glued to the side of Stephen's crib and chatting and never got it finished.

But I wanted just to let everyone know that Stephen and his new kidney are kicking total butt! He's still on the ventilator, but he's been waking up and looking at everyone and everything and shaking his head no when I do something he doesn't like. The plan is to keep weening him off the ventilator and hopefully take him off early tomorrow morning.

The kidney is also working great! BUN and creatinine are the big markers for kidney function, and his creatinine is absolutely perfect; 0.2. And he's making about 60-100 cc's of urine an hour.

I'll report more later, but just wanted everyone to know that he's doing fantastic and we've heard from Matt, Kristin's husband, that she's doing well, albeit with some abdominal pain and soreness. And we hope to be able to go visit her this afternoon if she's feeling up to it.

But I had to share this picture of Stephen checking out his ballon and trying to bat it. He's back asleep now, but he was awake and alert for a good 10-15 minutes. It was awesome!!

4 comments:

AnonymousMay 10, 2013 at 2:22 PM
Awesome updates! I've been praying constantly for all of you! What a sweet and precious boy!! Amazing to see him reaching for the balloon! What a trooper! God bless all of you on this new journey and road to recovery!
Kristin McDowell
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AnonymousMay 10, 2013 at 3:34 PM
Those photos are beautiful, and the proud look on Bill's face says it all. Thanks so much for the continued updates. The news is great and I wish you all continued success.
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AnonymousMay 10, 2013 at 5:03 PM
Hi Lindsey,
This is totally great news!!! I phoned your Mimi and Poppi this AM when there was no new post....Uncle Dick said I am getting to be a nervous Nellie just like my Mother. Anyway your Mom and Dad gave us the great report that all was going terrific. We think Stephen looks amazing and are sure things will only get better from here. Had a Bizillion calls from friends and church members all concerned about our SUPERMAN. We were so please to be able to tell them God has answered our prayers.
Love to all....
Aunt LuAnn and Uncle Dick
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AnonymousMay 10, 2013 at 6:44 PM
Praising God for His incredible faithfulness. There is power in the prayers of His people!

:) Sheri Roth
(Brenda Noll's cousin)
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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!!