Stephen's Journey: Bad News

Sunday, May 1, 2011

Bad News

Today (Saturday) was supposed to be our dischrage date...again, but alas, we are still in the hospital. And on top of that, we got really bad news today. Stephen needs surgery to replace his peritoneal dialysis (PD) catheter. The worst and most unexpected outcome from this bout with peritonitis.

This morning when we got up and all day, Stephen has been in a great mood smiling and playing and looks back to his normal self. So I was sure we were going home today. But once the final cultures came back from yesterday, it was clear that the infection is still going strong and the antibiotics aren't killing the bugs in his belly. Plus, his dialysis fluid is still cloudy. A sure sign that the infection is still around.

The nephrologists and dialysis nurse believe that the staph has settled into the plastic cuffs on the inside of his peritoneum. That's why the antibiotics aren't working. Plus we noticed today that there are bubbles inside his catheter tubing which means air is somehow getting into the catheter from the inside. It's a always a closed loop "system" so it doesn't make any sense how that has happened.

We have no idea when they're going to do the surgery, but I have told them that only Dr. Kim will perform surgery on Stephen. He was the surgeon who removed his kidneys and placed the first catheter, and we have complete confidence in him. We think he's brilliant and on top of that, not only is his name Stephen as well, we really like him.

So right now our stay is completely open ended but with any luck we will be home by the end of the week.

4 comments:

Megan HMay 1, 2011 at 11:22 AM
Sorry Linds to hear about Stephen's recent "booboo". He's a tough little guy as he has proven in the past. It's good to hear is happy and smiling like his normal self. Lots of prayers and hugs for you, Bill and Stephen!
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Danielle HobbsMay 1, 2011 at 11:45 AM
I'm so sorry to hear that the infection is not clearing and needs more surgery!! :( We are continuing to pray for him!
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UnknownMay 1, 2011 at 7:23 PM
Oh goodness. I'm so so sorry to hear about this, but God will bring your little miracle man through this too! So much love to you all.
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AnonymousMay 1, 2011 at 11:37 PM
We love you all and will be thinking of you and praying for you daily. Please keep us updated.
Mary Elizabeth
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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!!