Hello from Cincinnati... Let's Have Cake
I had a heavy heart Monday evening when I merged from Interstate 74 south to 275 east. I do not need a map to get to our Cincinnati hotel anymore. I know this city well. We walked into the lobby, and Nathaniel started to cry. He was inconsolable through the check in process and worse when we got to the room. He stood frozen halfway between the bed and the door, held his trach and cried. I had to wipe tears too. Everything about arriving in southern Ohio for another group of appointments felt hard and heavy and sad to both of us. We've done this a lot in the last year. Many of the visits produced physical pain and difficult news. Neither of us wanted to be here.
In the process of settling into the room, Nathaniel's g-button was pulled out. My twelve-year-old niece was in St. Louis last week for her annual "Camp Rankin" visit, and I asked her parents for a second week so she could be my travel companion. She is brave beyond her years. She responded quickly and confidently to instructions. Her help allowed me to address the emergency without difficulty. Nathaniel laying on the floor without his shirt led to tickling and giggles. Ellie is old enough to be a fantastic mother's helper and young enough to be a buddy to Nathaniel.
After the long drive, I failed to realize then that her presence alone was significant. A year ago last week we brought Nathaniel to Cincinnati Children's for the first time for his airway evaluation. We brought three adults. Nathaniel's airway at the time demanded twenty-four hour observation. We didn't drive without an adult in the backseat with him. We had a family member or nurse awake twenty-four hours a day. Upon waking last Friday morning, Nathaniel removed his tracheostomy ties and tube again. The longer window to respond then and the fact that a mature twelve year old can be my travel companion this week are evidence that despite our weary emotions, this last year and the many trips to Cincinnati have yielded positive changes for Nathaniel and all of us.
Ellie, Nathaniel, and I were set to explore the Cincinnati Museum Center today. Her father wanted her to learn about the regional history, and I enjoy the Center's history portion. Win-Win for the adults' interests! Unfortunately that portion of the museum is closed for roof repairs. They redirected us to the Behringer-Crawford Museum in Covington, Kentucky's Devou Park. It was a good redirection. The Outdoor NaturePlay area lifted Nathaniel's and my spirits even more. Ellie collected Ohio River facts and loved the lookout we found at the park.
If you are ever in Covington Kentucky at lunch time, check out Bean Haus Bakery and Cafe. Their iced coffee and cherry smoothie were great. The turkey with smoked gouda sandwich and veggie wrap are highly suggested. The children's games on the book shelf and the dining room to ourselves were a gift. And the gigantic buckeye? No words from this native Ohioan and her niece. By the way, it took Nathaniel precisely one second to realize that throwing Connect Four pieces out the open window near our table was far more fun that playing the game with his cousin.
The nature of our visit to Cincinnati Children's this week is GI issues. Nathaniel gained some freedom to start oral tastings after airway surgery in February, but was placed on the Six Food Elimination diet until more testing and information was gathered. Feeding progress has been slow. Very slow. Nathaniel eats a small number of things okay, but nothing easily. He had a lunch of water, Kix cereal, and his G-tube feed while Ellie and I ate the above delicacies.
We came to Cincinnati wondering if Eosinophilic Esophagitis would be a new diagnosis. It is not. Nathaniel's oral diet restrictions have been lifted. We are now free to offer milk, eggs, wheat, soy, peanuts/treenuts, and shellfish (along with all other foods) one at a time watching for any negative response. There were new diagnoses related to his GI system and a recommendation for a multidisciplinary feeding therapy evaluation. Like other Cincinnati trips, today's news is not the final answer, but provides a directional arrow. Learning to eat for the first time at almost four years old will likely take some work; it is unknown today if and to what degree Nathaniel will depend long term on g-tube feeds. Time and Nathaniel will let us know.
We stopped by my favorite Cincinnati cafe for dinner after the medical appointments. It is my favorite only because I know where it is and what I like there. I have only been to a handful of Cincinnati restaurants. Like hotels, the ones I've been to, I have frequented a lot. Routine is required when life is taxing. The man behind the counter broke into a smile when we walked in. "You're back in town!" he exclaimed. "Did the little one go to the hospital, today?" Yes, I have been there a lot. As Ellie and I ate, I received texts from family and friends celebrating the lifted diet restrictions. They were full of food emojis. It was then I realized that come November, on his fourth birthday, Nathaniel will be allowed to eat birthday cake and ice cream for the first time in his life.
Tears come as I write that sentence. Restrictions lifted leave a gaping hole that is now oddly filled with previously unallowable sorrow. I bought a smash cake when he was one. The photos are adorable, but they don't tell the heart ache of having to wipe his fingers and whisk the cake away as soon as Nathaniel got frosting to his mouth. Photos from birthday two and three don't tell the whole story either - candles he could not blow out set on top of cakes he could not eat. Birthdays are not days to mourn disability, so our family laughed and smiled and accepted this new way for birthdays to be celebrated. We refused to be sad. In the last year Nathaniel has learned to blow bubbles and a whistle through his trachesotomy tube. Perhaps on his fourth birthday, he will blow out his candles. He will probably blow some lung secretions all over the cake in the process, but that's okay. He can have the whole cake to himself this year.
We leave Cincinnati tomorrow. If feeding support can be secured local to home, the plan is to wait a year to return for an annual evaluation with the Areodigestive team. That's good news. It might give Nathaniel time to forget a hotel room's association with pain and require me to need a map again. It gives us lots of time to learn how to eat cake.