Nicholas’s Story

Site created on April 22, 2018

Ezekiel 36:26 “I will give you a new heart.”

My husband Nick was born with tricuspid atresia, a congenital heart defect where one of the valves of the heart is missing and therefore blood cannot flow normally from the right atrium to the right ventricle. He’s had several open heart surgeries (the first when he was a day old,) has a pacemaker, and takes a lot of medication to ensure his heart functions as it should. Nick has an incredible team of doctors at both CHOP and The Hospital at the University of Pennsylvania who have done an amazing job with his care. But, they’ve always known that the heart he was born with wouldn’t see him through to old age. They’ve known his only option to live a longer life would  be a heart transplant. 

In January, after a brief hospitalization for a stubborn arrhythmia and a general decline in his health, Nick’s doctors felt it was time to evaluate him for not only a heart transplant but a liver transplant as well. An unhealthy heart puts a strain on all the other organs and his liver has had to filter blood from an aortic leak, which has caused it to develop cirrhosis. We spent many days at Penn going through the evaluation process and Nick’s doctors decided that now is the time to move forward with both transplants. 

This is our journey towards Nick getting a new heart and liver. We will be using this CaringBridge website to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. 

Newest Update

Journal entry by Kate Bianchini

I'm sorry it's been a while since I've posted an update. The last week and a half has been a total blur and I find myself falling in to bed exhausted every night!
Nick has experienced a lot of ups and downs since the transplants. He was doing really well in the first week after surgery, his pain level wasn't too high and many of his chest tubes and the liver drain were able to be removed. He didn't have much of an appetite but was drinking and eating things like water ice and ice cream.
Last Thursday night, 8 days after his surgery, he was moved from ICU to the surgical step-down unit. Unfortunately that same day the doctors decided his kidneys were just not recovering like they should and they started him on dialysis. He also had his first heart biopsy done that day. The biopsy is a minor surgical procedure where they go in through his neck and cut out several small samples of heart tissue. The samples are evaluated for the presence of antibodies, which shows whether or not the body is rejecting the new heart. It was a really long day for everyone (I was a the hospital for 16 hours) but I was glad to see him settled in his new room that night.
The next day Nick was not feeling well and by Saturday he was feeling even worse. He'd gotten 2 more rounds of dialysis and his heart biopsy results were great (no rejection!) but he continued to not feel good. Saturday night while sitting in a chair his blood pressure crashed and he passed out. He was immediately moved back to the ICU, where blood tests showed an elevated white blood cell count which indicates an infection. They took a lot of cultures and he was started on a really strong broad spectrum antibiotic Sunday morning. The doctors also had to put a feeding tube in because he wasn't eating much and they were concerned he wasn't consuming enough calories to help his body fight the infection. His white blood cell count improved over the next few days but they never found the source of the infection, and the high protein supplements they were giving him through the feeding tube made him really sick. They ended up putting another tube in to suck out the contents of his stomach so he wouldn't continue to get sick and he wasn't allowed to eat for 3 days! 
On Wednesday he was moved back to the surgical step-down unit and he worked with the physical therapists who helped him march in place and walk to the end of the hallway. Yesterday was another long the morning Nick had a more permanent port placed in his chest for dialysis, then he had a round of dialysis and some tests done on his heart in the afternoon. The dialysis caused some abnormal heart rhythms and changes in his blood pressure so they ended the session early. This morning he had another heart biopsy done and we should hear the results on Monday.
Unfortunately the abnormal heart rhythms have continued and the doctors aren't sure why. Around 3pm today they decided it would be best to move him back to the ICU for the weekend where he will get a higher level of care and be closely monitored. So, back to the ICU he went again! We're trying to remember this is a precaution and not a set-back. He has been started back on a clear liquid diet so I got him some Jell-O for dinner at his request. The doctors may order some tests tomorrow to try and determine what is causing the abnormal heart rhythms. 
Please say some prayers that Nick's kidneys start to heal as we are very hopeful he does not have to continue with the dialysis once he's released from the hospital, that the cause of the abnormal heart rhythms can be found and treated, and that this is his last visit to the ICU! 

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