Benscoter Family: September 2012

September has been a quiet month which has been a nice break for everyone. Other than occasional appointments with medical professionals in Boston and frequent visits from our home health nurse, we have just been hanging out around the house. Our primary goal with Tyler for the months of September and October are to keep him as healthy as possible and focus on his feedings in order for him to grow in preparation for his second surgery. On September 5th we had a consult with the Hematology department in Boston since Tyler has the history of blood clots and is on subcutaneous blood thinners. The nurse practitioner and doctor we met were very nice and knowledgeable. They explained to us that Tyler has a genetic blood condition referred to as a prothrombin gene mutation which makes him more prone to blood clots. Since it is a genetic condition, that means either Joe or I also have the prothrombin gene mutation. Apparently, 2% of caucasians have this condition but never realize it. Anyway, the fact that he has a higher propensity to form clots does not change his day-to-day care at this point but will need to be taken into consideration prior to his next and all other future surgeries. On September 7th Joe was in Washington for parachute training as his first step towards his transition into the C17. On September 13th my Mom and I again went into Boston with Tyler for a GI appointment. We made this appointment since Tyler seemed to have a lot of discomfort with his feedings and continued to have a significant amount of drainage coming from his G tube site. On the way to the appointment Tyler's nutrition pump malfunctioned which meant Tyler missed out on a meal. That also made Mom and Grandma very stressed and nervous! Thankfully we determined the problem and fixed it at the GI appointment. The GI team decided to prescribe Tyler a laxative, new formula, and set up an appointment with a general surgeon to switch Tyler's G tube button since he was rapidly outgrowing his Mini button. September 15th was a really fun day as I took Sophia to her first ever gymnastics class! She really loved seeing Auntie Erin and her favorite cousin Ava! She also loved playing with all of the equipment but was pretty skeptical of the foam pit. She was pretty courageous though and tried it out anyway. She was pretty nervous about having such difficulty moving around so our time in the pit only lasted about a minute or two. On September 17th Mom and I took Tyler to Boston for a marathon day at the hospital. We put on our running shoes and went non-stop from 8AM to 7PM. We started off with an ultrasound of Tyler's legs to get images of the blood clots in his groin. I held Tyler on my lap while they took the ultrasound of his legs. While his diaper was unfastened for the test, he decided to have a massive blow-out diaper....all over my jeans! Thankfully the staff gave me some comfy scrub pants to change into so that I didn't have to wear poopy pants all day. Next up was the consult with the general surgeon who replaced Tyler's Mini button with a Mic Key G tube button. Tyler has been much more comfortable with his bigger button so we are all thankful!! After that Tyler had a chest Xray, EKG, followed by our cardiology consult. On September 20th we had three women from the Massachusetts Early Intervention team come to the house to see if Tyler qualified for any of their services. After they assessed him and gathered information regarding his medical history it was determined that he qualifies for speech and occupational therapy to improve his oral motor skills for feeding. On September 24th my Mom and I went back to Boston to see Tyler's cardiologist since Tyler was having difficulty breathing. After getting a chest X-ray and speaking with the cardiologist it was determined that he was retaining too much fluid so his Lasix dose was increased again. Nana and Grandpa Ben came to visit from September 27th-30th. Sophia and Tyler enjoyed the extra attention! Grandpa Lagasse and Mommy enjoyed the extra help since Grandma Lagasse went to Missouri for the weekend to attend the wedding of some of our close family friends. Grandma returned the night of the 30th which was her birthday. Evan, Erin, and Ava came over for a Chinese dinner and carrot cake to celebrate the special occasion.