About a month ago, Kemarah started having a particularly hard time. She was not responding very well to her diuretics and her heart failure continued to worsen. Over the past 6 weeks we have been back and forth from the regular cardiology floor and the Cardiovascular ICU. Last Wednesday, her team of doctors decided that she had plateaued on her medications and they felt that it was time to take a drastic step in her treatment plan--they wanted to place her on a Ventricular Assist Device, namely, a Berlin heart.
Wednesday night (Jan 30) we were moved back up to ICU and the conversations began Thursday as to what the plan of care would be for her. Friday morning, we were blessed to have 15 of the most brilliant minds in the world (as far as children's heart failure is concerned) sitting together in one room talking about Kemarah and what needed to be done for her. There were 5 heart failure/transplant doctors, 5 of the best pediatric cardiac surgeons in the world (to include Dr. Fraser, who pioneered the study to gain FDA approval of the Berlin heart in the U.S., and Dr. Adachi, who had just returned from Japan where he had travelled to install the first pediatric Berlin device in that country) 5 transplant/surgical nurses, and the perfusion experts. After meeting for a couple of hours, they determined that Kemarah would likely need to receive two Berlin devices--one to help the left side of her heart pump, and one for the right side. Over the past 7 years, Texas Children's Hospital has implanted over 50 of these devices in children, but only 2 of them received 2 devices. Once again, Kemarah is anything but normal. Her surgeon, Dr. MacKenzie explained that she is in rare form and that her right heart is actually much worse than the left, therefore simply placing the device on the left side, like they usually do, would not give her the support that her poor body needed. By Friday afternoon she was on the surgery schedule for Monday morning.
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