Our Journey to Berlin

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.

And Fall Becomes Winter

In October 2012, Kemarah was readmitted to TCH for worsening heart failure.  This began a journey that I never anticipated.  We went through a time of fear as we discussed possible surgical options, frustration as we waited for the heart that seemed to never come, excitement as Kemarah's status was elevated again to the highest priority, disappointment that there were no "easy answers" to help her along the way, and utter exhaustion from "living" in the hospital for almost 3 months.  I will spare most of the medical details here because they tend to get very boring, and even repetitive.  Thankfully we have a fabulous team of very gifted and dedicated doctors that have to make most of the "hard" decisions for us.  We spent Halloween, Thanksgiving, Christmas, and New Year's at TCH, and I am so thankful that Kemarah was well enough to experience all of those holidays in our own unique "hospital" way.  The past couple of months have been especially trying in that it's easy to forget why we are actually here!  Our goal, of course, is to get a new, healthy heart.  We tend to get caught up in the day to day ruts of what has to be done in the meantime to carry her to transplant.  It's something that at times can seem as though is never going to happen.