Tuesday, August 6, 2013

Time Rolls On

As February faded into March, Trouper continued to make progress and was released to go home, with home health care, on March 12th. He was back in the hospital for an overnight stay in March but stayed the same through the month.

In April, he was given the green light to go to the beach, our annual spring break trip we had planned and paid for many months before for Emily and her friends. It was their senior trip, and wild horses (or doctors) weren't going to keep him away. We arranged home health care in Florida, and Troup's brother and his girlfriend flew in from Texas to help us with the eight (yes we are brave) teenagers and visit with us. We had a wonderful time and the time away did everyone some good! His health stayed the same during April and his daily routine included thirteen medications, visits from the nurse, line flushing, weighing, fluid counting, and the list goes on and one. He didn't have any energy, and just getting out of bed each day was a huge task. Weekly trips to the hospital to visit the doctor zapped him for days and we both realized, although we kept praying, that things weren't improving.

May was a roller coaster month, we had to take the highs with the lows. It brought sad, although expected, news; Trouper's heart wasn't recovering, and we would need to start exploring some options. His pump medicine, that he was receiving 24/7 via a pic line, was only a temporary fix and would eventually start causing issues with his other organs. His ejection rate was only 12% for the left ventricular and 20% for the right. The doctor mentioned transplant for the first time and we (okay me) immersed myself into researching his options. LVAD, which is called the "bridge to transplant" was basically a temporary pump that would bypass his heart, pump and would circulate the blood through a backpack type machine. Transplant was another option, and seemed the best one, for his age and condition. He would need to get rid of his life vest, the vest he had to wear 24/7 that would shock him should his heart stop and get an internal defibrillator implanted. There would be massive amounts of tests, and we decided we would pursue, and push, the transplant option. During May, he had a constant cough and one morning, passed out from coughing. He was admitted to the hospital two days before Emily's graduation and from the moment he was admitted, told the staff he was leaving by Wednesday because he would be there when his baby girl walked across the stage. His wonderfully kind, smart and dedicated nurses and doctors agreed, and worked really hard to get him home and he was in the audience when Emily Jene' Gamble became a 2013 Graduate of Parkview High School. A child graduating is always special but Emily's walk across the stage was a walk for our entire family. We had come through the worst four months of our lives, and we had done it together. We had made a decision to wait and tell Emily about Trouper's health status until after she was done with the school year. We wanted her to celebrate the end of school as carefree as possible, but I think deep down she knew something wasn't right. But she's a little Trouper and put on a brave face and made it through and made us all so very proud. Ryan said it was hard to imagine his sister was graduating, seemed like yesterday it was him. Then he said something about it being the last time we would ever be at Parkview as parents. Such a wonderfully sad moment, if that makes sense. I was flooded by memories of their activities, remembering being exhausted and wondering when it would end. Then, all of a sudden, it did.

Ryan & Emily: No one will ever understand the strength of my love for you. After all, you're the only ones that know what my heart sounds like from the inside.

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