Clinical Trial Week One and Two

Luke and his backpack

Week One: We started with our appointment on Monday March 10th. We left early and drove up to Kansas City on Sunday. We had a fabulous (late) lunch at the Cheesecake Factory and then hung out at the hotel as we were too tired to do anything else! Monday morning we packed up, went to his appointment, and then drove home to Arkansas. The appointment went well. They weighed him, measured his height, did another EKG, and more blood work. Those things we will have to do every visit. This visit we got "the medication" - we don't know whether it is the Amitriptyline or the placebo. The nutritionist had figured out 2 different feed options for Luke's continuous feeds. He has to get 26 ounces in a day over a minimum of 10 hours. One option was a rate of 75 mls/hour over 10 hours and the second option a rate of 65 mls/hour over 12 hours. I laughed at that because he has NEVER gone over 45 mls/hour without having stomach pain, gagging, and throwing up. Even though the formula bypasses his stomach, the formula going too fast makes him uncomfortable and end up throwing up whatever is in his stomach. There was hardly a night when we were doing continuous feeds that he didn't wake up between 12-3 screaming and crying because his belly hurt. They told us we would slow it down to whatever rate he was comfortable with...as long as we got the 26 ounces in. The first day we tried out his feeding rate at 65 mls/hr but he didn't tolerate it. We bumped it back to 45 and he did better. After a couple days we started increasing it and he currently is running at 57 mls/hr! He is tolerating it and sleeping through the night!

Luke's favorite part of the appointment was when they gave us a lunch bag with an ice pack to keep his medicine cold. He wasn't excited about the bright cool lunch bag but the ice pack! We were leaving the appointment and walking through the lobby. Luke would stop, look at someone, hold up the lunch box, and it a loud whisper say "ice pack." He would then move on to the next person without a second glance to that person. Mom and I were cracking up at him! The older people in the lobby thought he was pretty cute too.

Ken's mom has been sending little gifts for the boys to open on travel days. Week one gift was Star Wars action figures. My mom has been getting Luke and Jack little things too. This first visit was the light up light-sabers. This visit was spider man sunglasses for her car. The boys are loving the attention.



Week 2: We are slowly ramping up his medication dose. We haven't seen much change except for tolerating the continuous feeds at 57 mls/hr and some loose stool! He is doing a little better about trying new things...but only if he initiates it. Same things at the appointment: blood work, EKG, weight, and height check. He lost a little weight but only a little bit so no big deal. The big event this trip was Luke's feeding tube came out during the night. He woke up around 3am complaining that his sheets were wet. I thought maybe his pull-up leaked but as soon as I turned the light on I saw his tube laying in the bed. I don't know how long it was out but I had a hard time getting it back in. Because I had such a hard time getting the tube back in his stomach, I was afraid to feed him until we got it evaluated. We were in Kansas City and headed home that day. We didn't make it back into Little Rock in time to get his tube replaced at Arkansas Children's Hospital. We had to wait until the next morning to get it replaced.

This week's present from Ken's mom were storm trooper pez dispensers. Luke has never had pez before and he ate a whole pack in one sitting. Mom got him new shoes and got Jack some Russell Stover candy. Anyone who knows our children know that those were the perfect gifts to meet their personalities.

Luke showing the nurses and doctors his pez dispenser after his appointment