Benscoter Family: April 2016

April 1st was an awesome day because Nana, Papa, Grandpa, Benjamin, and Julie all came to New Jersey. It was also super fun because Grandma, Sophia, Emily, and I went for a delicious and exciting tea party! Emily was baptized in St. Francis of Assisi parish in the Fort Dix chapel just up the road from our house the afternoon of April 2nd. It was such a special occasion that was celebrated with lots of friends and family members, most notably with her Godparents Aunt Julie and Uncle Benjamin. After the ceremony, we had a small reception in our home.

Joe and I went on a date on April 3rd and decided to learn how to shoot a bow and arrow. It was really a lot of fun! Neither of us had done anything like it before and it was such a blast. Afterward, we had a nice dinner at Olive Garden.

Tyler had appointments with GI and General Surgery at CHOP on April 5th and everything went well. The surgeon was happy with how the operation went and with how Tyler had healed since the procedure. We traveled back to CHOP the following day, April 6th, for Tyler's cardiology appointment. During the appointment I had talked to Tyler's cardiologist about the possibility of Tyler being referred to the cardiac transplant team for evaluation. Although Tyler looked stable from an objective standpoint-- his vitals were stable, his echo remained unchanged-- I felt as though Tyler had never really gotten back to himself since his admission in March. The cardiologist assured me he did not feel that we were at the point where transplant was where we needed to go with Tyler so we left the conversation at that.

We enjoyed a couple more days with Nana and Papa before they had to go back home on April 8th. It was sad to say 'goodbye' to them but later that day we said 'hello' to Aunt Melissa! She came to meet Emily and hang out with us until April 12th. We had a quiet yet fun few days with her.

We went to New York City on April 17th to spend time with the Amat family and meet their newest addition, Anna. We spent the day in Central Park, took the kids to the carousel, and had pizza for dinner on the rooftop of their apartment building. It was a great day to be outside and to spend time with our friends. However, Tyler was really crabby and clingy that day which made me nervous that his heart was starting to struggle again.

Joe left for a trip on April 19th and got home on April 23rd after traveling to Delaware, Spain, and Africa. During the time he was gone, my concern for Tyler's health began to increase. A very telling moment was the morning of April 24th when Grandma and Grandpa came to visit and Tyler refused to go outside to meet them at the door. Usually he is so excited to see them that he can't contain himself--however, when they arrived Tyler did not make eye contact with them and was generally rude towards them which was very out of character for him. I called CHOP and spoke with the on call cardiologist. I told her my concerns about Tyler and we were able to set up an appointment for him to be seen by one of the heart failure doctors.

On April 26th Joe and I took Tyler to CHOP to see Dr. O'Connor, one of the heart failure doctors. Based on our subjective accounts of Tyler and the physical exam that he performed he told us that Tyler was in irreversible heart failure. While it was difficult to hear such scary phrasing, I was happy to know that I followed my instincts to have Tyler evaluated by a different cardiologist. We agreed with the doctor that Tyler should be re-admitted and that a heart transplant evaluation should be initiated. Since there were no beds for Tyler to be admitted that day, we came home for the night and packed our bags for the hospital.

Tyler was officially admitted to the hospital on April 27th for the second time this year. On April 29th Tyler's transplant evaluation officially began. He also had a PICC placed into his right arm to allow a safe way to infuse a constant Milrinone drip to help support his heart.