Stephen's Journey: Back

Tuesday, June 7, 2011

Back

We're back at the hospital following seizure #2. Around 8 pm, Stephen had his second seizure as I was setting up his dialysis machine for the night. He was napping in his swing in the living room as I was getting some things prepped for dinner and setting up his machine. I went to go start waking him up and noticed his eyes were wide open again, staring at the wall and his arms were twitching. This one wasn't nearly as bad as the one the other night, but it was clear he was having a seizure, I quickly grabbed our little Flip camera to try to videotape the seizure. It's something the neurologist suggested on Saturday. I had pretty much laughed at him when he mentioned that because I thought how the he'll am I going to tape his sissies when I'll be freaking out that he's having a seizure! But thankfully the camera was nearby, so I got some video.

I called Bill to tell him and we debated about whether or not I should call 911 or drive him myself. Since the seizure ended within a few minutes, I threw Stephen in his car seat, grabbed a few items, and flew down the beltway to the hospital. Thankfully it wasn't rush hour, so I made it there super fast.

Right now we are still in the ER waiting to be transferred up to his room. Hopefully this time they will keep us here until he gets his EEG and MRI. He's already had an EKG while here in the ER and thankfully that came back fine (his potassium levels were high). Stephens and I had such a great day today while my sister was here visiting from PA, that it's really a bummer the day had to end this way.

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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!!