*Warning, long post for documentation purposes. Read at your own risk!
Thursday morning, we dropped off the girls at Miss Julie’s and headed up to Riley. We met with a new GI doctor, Dr. Contreras. Gavin has been having a lot of bloody stool, and when we did some more reading about KTS, we realized this was common with that and he needed to be seen by a specialist. After spending days on the phone, I finally got an appointment. We snacked on the way, but didn’t eat an official lunch because his appointment was at lunch time. We promised him Teppanyaki on the way home, which is his favorite. We were called back into the room a few minutes early, but ended up waiting for a while. Gavin was getting restless and we were getting ancy. Finally, she walked in and the chaos began…
First, she apologized for the delay. She told us she was ready to see him and then realized he had KTS. She’d heard about it before, but had never seen a patient with it. She spent the last few minutes reading about it before coming in. Brian and I liked her right off the bat! She was super sweet and took everything seriously. She also thought Gavin was adorable, so that helped! After asking us some questions, checking out Gavin, and consulting with an Internal Radiologist, she came up with a plan. First, she wanted some blood work to make sure his counts were good. Then, she wanted a CT Angiogram scheduled to see if there are any vascular lesions in the GI trac. If something showed up on that, she would refer us to an internal radiologist to fix it/treat it. If not, she would schedule a scope to get a closer look. Based on the findings, we would go from there. She also prescribed him Miralax to ensure softer stool and then said she wanted to see us back in 2 months.
When the nurse came in, she said that Dr. C wanted the CT scheduled sooner rather than later, so it was the next morning at 8am! Brian and I were stunned, shocked, and a little panicked inside. We hadn’t prepared to spend the night. Brian called work and I called my mom and Miss Julie to make arrangements for the girls. Then, we went downstairs for blood work. Brian is always with Gavin when he has blood work or iv’s. I don’t want to pass on my fears to him. Gavin had a horrible experience and was stuck in both arms several times. I felt so badly. They gave him some juice and sent him on his way. His color was bad and he was still crying when he got out to me. I held him and he said, “They didn’t even give me a toy!” Brian and I promised him a toy and some lunch. We went to eat at Steak n’ Shake and all shared a milkshake and then went to find a hotel.
After checking in and getting a reduced rate because of our circumstances and some tooth brushes and toothpaste, we went to Wal-mart to get a few other needed items for the night and a toy for Gavin. Then, we went back to the hotel for dinner. Aunt Annie and Uncle Charles met us and hung out with us for a while. We actually had a pretty nice room and Uncle Charles and Gavin played on the couch. Then, Gavin fell asleep in our bed and we moved him to the couch when we went to bed.
The next morning, Brian grabbed a few breakfast items, but we didn’t eat because Gavin couldn’t eat. Annie met us and rode with us to the procedure. Gavin got all checked in and then we went back. Brian was able to be with him the whole time, which was nice. I felt terrible that it wasn’t me, but since there was an iv involved, it was best if it was Brian. Gavin was so well behaved. They had to stick him in both arms, and he cried, but he was so good. He laid on the huge table and was still enough he didn’t have to be sedated. They inserted dye in and it burned and didn’t feel well, but thankfully put some cooling stuff in after. When he was done, they gave him a toy car, flashlight, cookies, and juice. That helped a lot. I was so proud of him for being brave. I was a nervous wreck during the procedure and hate that he has to go through all of this. I would take his place in a second, but know that I can’t and he has a long road ahead.
The ride home was pretty uneventful. We stopped at Teppanyaki in Terre Haute since we didn’t get to the day before. We got back in town around 1, so we did our grocery shopping before picking up the girls. What a crazy trip! One big thing learned…pack a bag every time we go to Indy for a Riley trip!!!
Spending all of that time with Gavin made us realize how sweet and thoughtful he really is. He wanted to share everything with us and was so well behaved. Such a sweet boy!
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