Budd-Chiari Syndrome

BuddChiari syndrome is a very rare condition. It is an uncommon condition induced by thrombotic or nonthrombotic obstruction of the hepatic venous outflow and is characterized by hepatomegaly, ascites, and abdominal pain. It is caused by blood clots that completely or partially block blood flow from the liver. It usually occurs when a clot narrows or blocks the hepatic veins, which carry blood out of the liver.

This is what we were experiencing in 2006. Brandon was having some horrific pain in his abdomen. With all sorts of tests and blood work, His Liver/Stomach Dr. came to the conclusion that he has Budd-Chiari Syndrome. Because of this new diagnosis, it was causing more problems with his VP shunt, meaning he would have to face another brain surgery in order to help fix some of the ascites that was continuously building in his tummy. The surgery was a life and death situation. The only way he would survive would be that he gets a VA shunt. A VA shunt is a device that drains the extra fluid in the brain into the right atrium of the heart. A shunt catheter is placed into a vein in the neck and threaded down where the vein joins a larger vein called the Superior Vena Cava. This large vein returns blood to the right atrium of the heart . The cerebral spinal fluid is added to the blood supply and is absorbed.

Brandon developed a staff infection that led to putting the surgery off until the staff infection was clear. All that could be done at this point is lay in the bed with a tube hanging out of his brain to help drain the fluid until the infection was gone, then they could proceed with the plan. After long weeks of clinging on to hope, Brandon finally made it through, but there was just one thing I wasn’t ready to hear. Brandon was still considered critical and his team of doctors thought it would be best if Brandon came home on Hospice. He received a sentence of 6 months to a year. I really thought this was the end and I wanted to make it count. We had Halloween, Thanksgiving, and Christmas in October. We just loved on each other because that is all we knew to do. It wasn’t about accomplishing goals or the buying things that we enjoyed. We just wanted one more day, one more moment to have with one another and especially our precious “B”.

We got so cought up in those moments that before we even realized, two years had went by. We noticed Brandon was doing really good and we called a meeting with our hospice team.  We all agreed that he’s been doing so well that he can now come off of this program. We were thrilled! We were so ecstatic when we went to the Liver/Stomach doctor, Brandon had to have xray’s, so my mom and I waited patiently for the results. Finally, the Dr. came in with his head hanging down. All I could think of at that moment was “oh, no, this can not be happening.”  He has been doing great. “Why?, God! Why?” The doctor raised his head and with an astonishing look on his face, he said, “I don’t understand what is happening, but science says that this is impossible. I have compared xrays from the beginning to now, and the blood clot that formed is NO LONGER THERE and there is no explanation because he should not be here.”  I said, “Sir, Science says it’s impossible, but in all things God is possible!” Brandon was 6 years old then. He lived to be 14. That is nothing short of a miracle!

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