Stephen's Journey: ICU Update

Saturday, December 1, 2012

ICU Update

For now, we have good news! None of Stephen's cultures have grown anything and his blood work yesterday and today was good. Nothing that sounds off any alarms at least. But the mystery is still how he became so anemic, so fast and so sick. And why his blood cell counts haven't bounced back to normal despite receiving a blood transfusion on Thursday night.

Today they did an ultrasound of his liver and spleen to see if maybe the liver disease he has, Caroli's, has something to do with it. Hopefully the results of the ultrasounds will be back later tonight and those will also be just fine. But in the meantime, the plan right now is for Stephen to go home tomorrow unless something crazy pops up on those tests.

But the biggest news of all is that Stephen had a negative cdiff culture yesterday! It doesn't mean he's out of the clear with the cdiff, but it's a step in the right direction. He'll ultimately need three negative cultures to be considered cleared if the cdiff and back on the transplant list.

4 comments:

AnonymousDecember 1, 2012 at 4:29 PM
Hi Linds,
We've been waiting all day for some news on Stephen's condition. Thank God, so far, it is good. We will keep the prayers and positive thoughts coming your way and hope the liver and spleen tests come back OK also. Give Superman a hug a kiss and keep us posted.
Love,
Aunt LuAnn and Uncle Dick
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AnonymousDecember 1, 2012 at 8:00 PM
You must be so tired. I hope you will have some help once you return home, so that you can get some much needed rest. IT will not do any good for you to be run down.
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AnonymousDecember 1, 2012 at 8:30 PM
Hi Lindsey and Bill,
We just spoke to your Mother and found out what is going on with Stephen. I haven't checked the blog for awhile....so I was brought up to speed.Thank you.
You know....Stephen is our favorite little boy! . Tell him that Dave's green tractor is too tired to work anymore. Stephen will see Dave on a brand new red tractor next spring/summer!!!
The family pictures are beautiful!!!!
Stephen is in our prayers as he recovers.
Blessings to all of you in this season of hope.
Sue
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AnonymousDecember 4, 2012 at 4:28 AM
My prayers will continue for you all. Yah on the negative cdiff - he sure doesn't need that on top. I will also pray about the liver as he sure doesn't need any thing else at this point. You are dong such a spectacular job - keep up the good work.It will pay you back ten fold I am sure.
Prayers are flying in for you all.
Kathie Hanacik
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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!!