Brian and I arrived safely in Philadelphia on Thursday morning. In the future I should rethink overnight flights. Brian was fantastic and slept the whole time. Unfortunately, I did not. Twenty minutes in thirty-eight hours was not enough to keep me positive and upbeat.
Still, Brian was excited to ride in a “woo-woo” car from the baggage claim to the rental car. Our awesome escort even turned on the lights for Brian’s enjoyment. We were able to visit with family during the day and Brian had a great time.
Before meeting friends for dinner, I made a stop at Target to pick up some supplies for Brian and, of course, pass through the toy section. Brian found a set of Disney Cars he just had to have and another toy garage to use with the cars. I convinced him to go with the cars for now, but we would return to get the garage after we went to the hospital. Brian thought this over. While I made our way to the front of the store, he looked up at me and said, “Mommy, I don’t want the garage. I don’t want to go to the hospital.”
My sweet little boy had made the connection: doctors, needles, appointments, hospitals all lead to toys. If he removed the first part, he would not receive the toys, but at least he wouldn’t need to be poked and prodded. My heart broke in the moment. I’ve often said that Brian is spoiled rotten because whenever he has to experience something unpleasant we buy him a toy, because candy, ice cream or other bribes are not a possibility. Plus, I figured he liked receiving the little gifts. This revelation on his part made me feel like a horrible mother.
Usually traveling is an exciting adventure, but Brian has seen through all of the playtime with cousins, reunions with friends and little gifts. He has made himself clear from the first night we arrived, “I want to go home.”
He doesn’t understand the distance we have travelled. He wants to know why we cannot go home to daddy and sissy. He doesn’t want to see any doctors and he doesn’t want any toys.
I woke him yesterday morning to go to a doctor’s appointment. Before starting the long drive, he told me he didn’t need to see the doctor and wanted to go home. I tried to bribe him with the fun toys they would have at the doctor’s office, but he wasn’t interested. Luckily, he fell asleep quickly and didn’t put up a fight when we arrived.
Doctor Liacouras is wonderful and it is refreshing to leave an appointment fully confident in a decision. Traveling across the country is worth every penny for the quality care we receive here. He calmed many of my mommy nerves and offered suggestions for further answers. We also learned that Brian will be admitted into the hospital at 10a.m. Sunday morning. He will have an IV to monitor fluid intake and an NG tube will be inserted to facilitate the clean out before his colonoscopy. I am dreading what tomorrow into Monday will be like.
After his appointment I emailed my contact within the EoE clinic and expressed my concerns regarding some of his other symptoms. I do not deny that I probably am a crazy and overprotective mom. Maybe I am reading too much into nothing, but my gut is telling me that we have missed something. I expressed my concerns and now I wait and hope that his allergist/immunologist will order more tests to be completed while we are in the hospital. I do not want to put my child through more pain, but I would never forgive myself if we learned in the future that there was something wrong and I did not fight hard enough for answers.
I’ve run out of answers to Brian’s constant question as to why we cannot go home. I don’t know how to make this easier on him. More than anything, I wish I knew I was doing the right thing. That is an answer I may not receive for many years. Hopefully I will look back years from now and be confident in every decision Matt and I have made for Brian’s well-being. At least, that is what I am praying for today.
Yes, Brian, I want to go home, too.