Stephen's Journey: Still Under the Weather

Thursday, January 10, 2013

Still Under the Weather

I think Stephen's feeling his sickest (is that even a word?) today since getting sick on Sunday. He was up all night coughing and because of the coughing has been throwing up his feeds and of course is exhausted. He slept in the car all morning (when we for a drive to get out of the house) and then when we got home, wanted to sleep more on the couch. So I just put him back in his crib and its only 11:45. Poor guy! He still has a low-grade fever, but because it isn't over 101.5, there's no reason for concern. And the pediatrician said his lungs sounded good, so need to worry about pneumonia.

But I know he's feeling really crappy because he laid down on the couch this morning. He's never laid on the couch....ever! But I guess when you've been sick for 4 days, you start to perfect lounging on the couch! Thankfully, I'm feeling human again, so it's much easier to take care of him now that I'm no longer feeling like death. There has been a lot of Elmo and Sesame Street in our house the past couple of days. Thank goodness for PBS! But this virus is seriously nasty! I feel for anyone who has picked it up!

1 comment:

AnonymousJanuary 10, 2013 at 11:20 PM
We've been out of town on a "roadie" today so I had to check the blog before turning in. Glad to hear that Mommie is feeling better but sad to hear that the bug is still after our Superman. The first two pictures show that he has perfected the "classic male sofa reclining position". Happy to see that Mabel is keeping watch. Hope everyone is feeling better real soon.
Love,
Aunt LuAnn
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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!!