Benscoter Family: June 2014

Sophia turned 3 1/2 on June 1st. We celebrated her half birthday by going to church and brunch in Bristol, CT followed by brownies at our house after dinner. It was a small little celebration but Sophia loved the special attention! On June 7th, Joe and I went on a date to the FunPlex...we drove go-karts, bumper cars, went mini golfing, played laser tag, played a few rounds of ski ball and even went on a couple rides. It was an awesome way to spend the evening! On June 8th Tyler ate so much food by mouth he only needed to be pump fed at night...it was so exciting to see him make some big progress!

On June 10th we went to Philadelphia for Tyler's heart catheterization work up. June 11th was the big day...Tyler had an MRI at 7am, Endoscopy at 9am, heart cath at 9:20, followed by another MRI at 1PM. Dr. Glatz, the interventional cardiologist that performed the heart catheterization, spoke with Joe and I and told us that Tyler was a very good candidate for the Fontan procedure. He suggested that we schedule Tyler's operation for early July. However, it would not end up being quite that early...

We were discharged from the hospital on June 12th However, Tyler began vomiting in the middle of the night and by the late morning of June 13th it was easy to see that Tyler was very dehydrated. We saw his primary physician at 11am and we were swiftly taken via ambulance to the local hospital. It was there that Tyler was put on IV fluids and we waited for transfer to CHOP. We arrived through the CHOP ER and were sent up to the cardiology unit. By that time it was 4pm and Tyler began vomiting blood. Tyler was seen by several medical professionals and had lots of testing done which revealed he had a duodenal hematoma....basically, a large bruise/bleed in his GI tract. We assume this was caused by the combination of his endoscopy and the aggressive blood thinning regimen he was on post-catheterization. It was a very scary day to say the least and I was so grateful that Nana was still in town to care for Sophia back in New Jersey. Also, Joe's Aunt Karen came to CHOP that evening to be with us. She brought me some Reese's peanut butter cups and even slept at the bed side in a stiff office chair....she was such a trooper! I can never thank her enough for what she did for me that night. I'm forever grateful to have married into such a wonderful family!

On June 14th Tyler was given a blood transfusion and Papa flew in from Atlanta to help out. Tyler had a second blood transfusion on June 15th and we were told there was no change in Tyler's GI bleed. Finally, on June 17th, the medical team decided that giving Tyler a PICC line was the best option for nutrition. Tyler's GI bleed was slow to heal and he had been on IV fluids exclusively for 5 days. The procedure went well and he was started on total parenteral nutrition (TPN) that evening. One June 18th, Tyler had another abdominal ultrasound which showed that his duodenal hematoma was healing. It was also a great day because Joe got back from his trip to Germany and the Middle East. Unfortunately, it was not all good news because Tyler spiked a fever that night which began a litany of additional tests. Thankfully, nothing serious came of the fever and it broke after about 72 hours. On June 19th Papa watched Tyler while Joe and I went to a Zac Brown Band concert near Philly. It was a beautiful evening to be outside and gain a little perspective.

Tyler slowly and steadily was able to tolerate being fed by mouth and through his g-tube so he was discharged on June 24th! He continued to recover quickly at home so Joe and I went on our vacation as planned on June 28th. We flew from Philadelphia to Miami then we drove our convertible rental car to our condo on Pompeno Beach, FL. It was so beautiful there! Once we got settled in, Joe and I hopped back in the car and drove to Coral Gables for dinner and an improv show. Dinner was delicious and the show was hilarious! On June 29th we went to a local diner for breakfast and had a low key afternoon on the beach. That evening we drove out to Ft. Lauderdale to have dinner at The Cheesecake Factory then we walked around downtown and went into some of the shops. We ended the evening by watching a movie in the Condo. We spent the morning of June 30th driving jet skis which is always fun! That evening Joe planned for us to have private dance lessons-- it was so much fun and he earned major brownie points!

I will share the rest of our vacation on July's blog post!