Stephen's Journey: Home

Monday, June 13, 2011

Home

We are finally home! We were discharged from the hospital around 4 pm yesterday afternoon, picked up Mabel from Bill's parents and headed home. And boy was it nice to be home! All four of us sleep great last night in our own beds for the first time a while, but had busy days today. Stephen and I had to get used to a fairly new routine today with more meds, more feeds, and more steps in our day (extra blood pressure readings, weight, and more steps to take in setting up dialysis), but he took an awesome afternoon nap in his crib and went to bed before 8 pm tonight; a new record. And I spent a good deal of time on the phone making follow-up doctor visits, talking with insurance and trying to get nursing for Stephen. Bill had a crazy day at work playing catch-up for being out of the office for three days straight and didn't get home until 10 pm. But we couldn't be happier to be home and hopefully we won't have any more of those "open ended" hospital stays in our future.

5 comments:

ciaraJune 14, 2011 at 8:05 AM
so glad you are home. nothing feels better than your own bed when you have been away for awhile - especially in a hospital! I am sure it will be tough adjusting to a new routine, but hang in there - you'll manage. smooches to Stephen!
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UnknownJune 14, 2011 at 9:57 AM
Yay! I am so glad you are all home, and resting well! Please let me know if you all need anything. Prayers and love.
Sarah
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AnonymousJune 14, 2011 at 10:02 AM
There truly is "no place like home". We are so happy to hear that Superman is feeling better!!
Love to all...
Aunt LuAnn && Uncle Dick
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Megan HJune 14, 2011 at 2:33 PM
Glad to hear everyone is back at home and doing well. Hopefully you can catch some sleep in these next few days. Hang in there Linds; you're doing an amazing job!
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{darlene} @ fieldstonehillJune 15, 2011 at 1:52 PM
oh, lindsay. you all have endured so much. I am so thankful that you are home. praying ever still!!! every night my boys pray for Stephen.
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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!!