Stephen's Journey: Update

Wednesday, June 8, 2011

Update

More seizures last night (one lasting about 20 minutes), potassium is too high, and sodium is too low so they can't do his MRI today. Doctors are working on getting everything "fixed" so he can get his MRI and EEG but who knows when we'll be home or when this "episode" will end.

At this point he's been poked and prodded so much for labs and by doctors we just want to take the poor little guy home.

6 comments:

LindsayJune 8, 2011 at 6:03 PM
Thinking about you all the time. Stay strong, Linds.

Love,
Linds
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AnonymousJune 8, 2011 at 7:10 PM
My heart is with you and I am praying for little Stephen as well as for you and Bill.
Mary Elizabeth
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UnknownJune 8, 2011 at 7:10 PM
Sending all the love and prayer we can muster.

xxoo
Sarah
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AnonymousJune 8, 2011 at 8:01 PM
Dear Lindsey and Bill,
You all have been in our thoughts and prayers all day...Stay strong...The doctors WILL get to the bottom of this. Trust that God will see you through this crisis.
Love, Aunt LuAnn and Uncle Dick
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AnonymousJune 9, 2011 at 10:26 AM
Thinking of you and Stephen. The docs will get to the bottom of it, but in the meantime, I know it must be heartbreaking for you and Bill.
All our love,
Charlene
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AnonymousJune 9, 2011 at 11:30 AM
Always on my mind and sending so many prayers. Keep your head up....just a little bump in the road. You are doing everything you can - you are a TERRIFIC mom! Thinking of you,

Kelly Livingston-Ellis
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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!!