Stephen's Journey: Slightly Unexpected

Tuesday, March 25, 2014

Slightly Unexpected

Well, we have an unexpected/unplanned road trip to Philadelphia on the horizon. Stephen's lab work from last Friday was not good. His creatinine is high (double what it was a few weeks ago), and his hemoglobin and white blood cell counts are low. So the doctors asked us to hydrate him really well and repeat the bloodwork this morning.

The actual blood draw went great! Stephen was given a couple of tasks to help out the phlebotomist, and he was so distracted and busy chatting away with all of the ladies in the room, that there weren't any screams or tears! They did an amazing job!!

But two hours later, I was having the dreaded "bad lab results" call with his nephrologist at CHOP. Basically, his red and white blood counts are trending downward and his creatinine is holding steady at 0.6, so they want to admit him tonight at CHOP to hydrate him, do labs in the morning and an ultrasound of the kidney.

Knowing about the issues he's been having lately with anxiety, I was able to get the doctors to agree to allow me to hydrate him overnight at home through his gtube and to do bloodwork and an ultrasound outpatient tomorrow at CHOP. So even though it will be a 4am wake-up call tomorrow, at least we were able to buy ourselves one more night at home and a little more time to get our ducks in a row with work and packing before leaving for Philly. We are definitely going to pack a bag for a couple of nights (we've been down this road many times!), but hopefully, Mr. Stephen's kidney will cooperate and we can come up with an outpatient plan of care and avoid a hospital admission all together. But I guess we shall see what tomorrow brings.

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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!!