May Cincinnati Trip: Fixing the Broken Things

Today was the sixteenth time in less than three years that I handed Nathaniel to an anesthesiologist for a surgery or medical procedure. That does not count illnesses and lab work. Despite the outward appearance of resiliency and well-being, the chronic need for medical intervention is taking a toll on Nathaniel's body. We are in Ohio for two days of appointments at Cincinnati Children's. Nathaniel was seen by four surgeons in the operating room this afternoon. As a side note, I really like it when doctors play well together and coordinate care; if handled differently, what was done today could have required four separate visits and four more handing overs to be sedated. Thank you Cincinnati Children's!

One of the surgeons was new to us and called in only to insert a port-a-cath. During Nathaniel's recent hospitalization in St. Louis for a stomach virus and dehydration, a nurse on the vein access team asked that a port be considered. I did not want to have to make another medical decision. Nathaniel's primary care suggested we ask the Cincinnati team if they could add it to his previously scheduled operating room time for today. It seemed unlikely to me that it would happen. Instead of asking many questions about the pros and cons, or taking weeks to decide if it was a good idea, I just prayed. "Lord, if this is the right decision, let it happen in Cincinnati." It was one of those take-this-out-of-my-hands prayers. It happened. Of all we've been through, a port is pretty minor. But the need for it hits me hard. It means the last three years have been hard. Something I knew, but try to not dwell on. It means this way of living, this hard, is likely to continue and doctors want to be ready if it does. I am relieved there are options that will hopefully make future procedures and illnesses easier. I am terribly sad to add another piece of hardware to this little boy's body. When I arrived in recovery he repeatedly pointed to the dressing, as if to say, "Look Mom. This is new." He signed open - the sign he resorts to in medical moments when he wants an IV out or a blood pressure cuff removed or the oximeter tape taken off his foot. Open. It describes well how I feel tonight. Open and tender and fragile. Sixteen times open handing my baby to a stranger. Too open.

The other three doctors in the operating room were part of the Aerodigestive team: an ENT, a Pulmonologist, and a GI. The first two called me into the consult room with smiles. Nathaniel's trachea and stoma look good. He has healed well from airway surgery. Nathaniel's lungs also look very good. "The best we've seen them... Almost like a normal set of lungs..." were some of the comments. I enjoyed watching these two surgeons and their fellows as they talked to me. They joked. They laughed. It was clear they felt good about the surgery decision and the results. They are comfortable waiting eighteen months to two years to see him again. I repeated the time frame as a question to clarify that I had heard correctly. "Yep. You know where to find us if you need us before then." Unbelievable. Our most difficult issue, the medical situation that brought us the most concern, that brought us to our knees over and over again, the disciplines that we have had the longest and hardest conversations with are stepping back. Nathaniel is still a child with a tracheostomy. There is much to manage daily. There are supplies to order monthly. But airway and respiratory are no longer the areas we are trying to find solutions for.

Gastroenterology is instead.

My conversation with the GI post surgery did not include as many smiles and jokes. In fact, there were none. He would like Nathaniel to return to Cincinnati Children's soon for more tests. When we resumed oral feeding, Nathaniel began to vomit again. We have a puzzle to untangle. We need to start by looking closer at his anatomy and function to determine if the webbing at the bottom of the stomach (found during our August 2015 visit to Cincinnati Children's) is contributing of the problem.

Nathaniel has more tests tomorrow. One that was previously scheduled and now an additional one that was added today. We leave for home early Friday morning. Grandpa Rankin passed away on May 6th. We have to be home in time to be at the funeral home Friday afternoon for the visitation. I remember well the day Grandpa met Nathaniel for the first time. He told me later that evening that he was frightened of all of Nathaniel's medical conditions; afraid that he would do something that would break him. It is understandable. There is brokenness. It can be overwhelming at times. Even tonight, I dread all there is to figure out about his GI system. I fear the brokenness I do not yet know about. Last night, unable to sleep with the anticipation of today's tests, I was reading A Mile Wide by Brandon Hatmaker. I was asked to join the book's launch team a few months ago, and have a copy ahead of publication. Brandon writes, "Simply put, Jesus is in the business of putting broken things back together. That's the good news. When we trust the gospel, Jesus redeems our past, our present, and our future by restoring our souls, our stories, and our hope." Yes, that's the good news. For little boy's broken body that does not work well. For broken courage when facing another medical issue. For broken hearts at the passing of a loved one. Jesus redeems and restores. Our souls. Our stories. Our hope.