Stephen's Journey: Catch-up

Saturday, November 26, 2011

Catch-up

So I have to apologize for surprising everyone with the news we were back in the hospital and then not updating at all with what was going on. Wednesday was an insanely long day and Bill and I never got to sleep Tuesday night and didn't get to catch any zzz's until Wednesday night when we got home from the hospital. Then Thursday was another long day (and an emotional roller coaster for me with Stephen in the hospital on Thanksgiving day) and by Friday morning, we were getting the news that we could go home. So it was a whirlwind of a few days.

Basically, Stephen had/has peritonitis and because he made sure to tell us, we were able to catch it quick enough that it didn't get too bad. It was bad enough obviously to cause a hospitalization in the PICU, but not as bad as it was back in April. We're still treating him with three types of antibiotics in his dialysis fluid at home, but he's 100% better. Although unlike the last time, he was in A LOT of pain this time around. They had to gave him both Tylenol and a narcotic pain killer to make him comfortable and so that he could sleep. But by the time we reached his room Friday morning, he was back to his normal self and feeling well enough that we could take some laps around the PICU in a cool car.

Here are some pics of the big guy when he was feeling pretty good. And each day he seems to be feeling better and his dialysis output gets clearer, meaning the infection is getting wiped out. And hopefully tomorrow we'll get confirmation as to what type of bug Stephen got.

2 comments:

AnonymousNovember 27, 2011 at 4:00 PM
Hi Guys,
Stephen looks terrific. He has grown since we met him in York just a few weeks ago. Thank God you caught the infection before it became too advanced. We'll be keeping you all in our thoghts and prayers.
Love,
Aunt LuAnn and Uncle Dick
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lehighfillNovember 27, 2011 at 9:46 PM
So glad he's doing better! He's such a cutie-pie!
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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!!