We arrived 30 minutes early and were quickly escorted into our waiting room. This was our first time at the Liberty Campus and it was great! The surgery waiting room was spacious. Our nurse Carolyn went over all the important information/questions. All the while Lucas played.
He also helped Carolyn with some questions. When she placed our ID bracelets on, Lucas asked if Baby (his stuffed dinosaur) could have one. And of course, Baby got on.
A Child Life Advocate, Kim, came in and talked to Lucas about what will go on. She let him smell 4 different scents (strawberry, bubble gum, cherry, and watermelon) and pick out which one he wanted to help him get cozy and doze off. He chose strawberry.
After Kim left, he was ready to head back. Again, we got to walk with him in the OR Induction room. He was so big and brave. He was ready!
He was funny when they gave him the strawberry air. He acted like he couldn't get enough and he tried to hold on as long as possible. But he was ultimately defeated. We were whisked away immediately into the consultation room. Dr. Franciosi came in with his nurse Jo Ford. He handed the pics and his first words where, "Based on the pictures, his esophagus is thickening and what we are doing isn't working."
My heart sank and sank and sank. My gut instinct was becoming a reality. Dr. Franciosi outlined 2 courses of action that we (I) must decide on when we return next week.
-Continue the restrictions of wheat, eggs, and corn but also eliminate soy, MILK, nuts, and fish
-Continue the restrictions of wheat, eggs, and corn with no other eliminations but put him on a new steroid, a slurry of Pulmicort and Splenda
He said which ever route we take is fine. His suggestion is option 1 because of Lucas' age and easy adaption to accepting not having those foods. But he understands if we choose option 2. If we choose option 1, there is a possibility that we will be able to add some/all those common allergens back into his diet.
I cried after he left. This disease is so hard and frustrating. I want what is best for my boy and I have to make the best choice for him (us). I don't know what I'm going to do. The news is still sinking in.
As soon as we left the consultation room, Lucas was waking up in recovery. We went back in to see him. We told him how big and brave he was. He told us that he was very hungry. Once he was stable, we were discharged. Lucas was excited that he got to ride out to the car in the cool racecar wheelchair.
On the way home we stopped to eat and he was happy. His big reward today for being so big and brave was he got to eat gluten-free, egg free, corn free chocolate chip pancakes. I made about a dozen or so palm-sized pancakes and I think he ate about 7 of them.
So for now, I have a lot to think about but I'm proud of my boy! He did so well! He already appears to be an old pro at it. Thanks for reading.
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