The Plan for Airway Surgery
About a month ago, I offered my layman's understanding on the functions of the larynx - it provides a passageway for breathing, it protects the lungs, it contains the vocal cords aiding in sound production, and it helps with eating. I mentioned in that post that having all four functions is not possible for Nathaniel. Tests during our last trip to Cincinnati Children's showed that Nathaniel still aspirates - his airway is unprotected - and that condition is unlikely to change with more time. The news we received in November was more brutal than hearing all four functions of the larynx could not be saved. Because Nathaniel's airway is not protected, it is not in his best interest to restore any larynx function.
Nathaniel is scheduled for a Laryngotracheal Separation surgery early Feburary in Cincinnati. The surgery will sever Nathaniel's larynx from his trachea. His nose and mouth will no longer be connected to his lungs. Through this surgery, we hope to eliminate aspiration and gain a more stable airway. Nathaniel will breath through a laryngectomy stoma. The differences between a tracheostomy stoma (what Nathaniel has now) and a laryngectomy stoma are too complex for the nature of this post, but the later will provide a more permanent and secure alternative airway. Nathaniel will continue to wear a tube in this stoma, similar to a tracheostomy tube. After this surgery, we should have more time to reinsert the tube when it accidentally comes. More time to manage airway emergencies will reduce the risk of an oxygen deprivation brain injury and death.
Normally when sharing medical information, I offer links to outside sources, diagrams, and videos to help friends and family understand. There is not much available on the web that is consumer friendly; a google search results in only a handful of case studies in medical journals. Laryngotracheal Separation surgery is not commonly performed. It is a drastic step most often taken to eliminate aspiration in children or adults with severe motor and intellectual disabilities. Nathaniel does not match the description characterized in the case studies in regards to neurological function. Only in aspiration. Part of stepping out in faith to provide Nathaniel a more secure airway is partnering with physicians who candidly say, "I don't know what to tell you to expect in regards to... I have limited first hand experience and no studies to rely on that match Nathaniel." We have been told that of the roughly two dozen patients who have received a Laryngotracheal Separation at Cincinnati Chlidren's Hospital, families feel the quality of life for the child improved with surgery. It is our prayer that providing Nathaniel with a safer airway will do the same.
Unfortunately, attaining a more stable airway comes with a huge cost.
Nathaniel will be permanently mute.
I can not write this information without being honest that we have struggled with why. Why would God allow Nathaniel to be born mute and with such a complex airway? Why has He not miraculously healed Nathaniel's aspiration so a different surgery can be considered? Why does a small child have to suffer like this? Why such limited options? By nature we are a people who seek to understand the why of difficult life experiences. We do not dare to pretend to know full answers. But we wrestle with these questions within the context of our Christian faith, church community, support and the love of family and close friends. Those contexts have brought comfort, hope, and instruction.
Years ago I volunteered with a non-profit assisting women caught in sexual exploitation and prostitution. I mentored a woman, Michelle, who fresh after seeking a new life off the street, was diagnosed with terminal cancer. A Tuesday afternoon found me in the city, in a half-way house, sitting on the couch beside Michelle. The television blared. Conversation stalled. Everything in my take-control-be-the-mom-fix-this-for-her personality, wanted to do something or say something to change the medical diagnosis, treatments, and life before Michelle. I offered to do the dishes. To take her for ice cream. To figure out rides to chemotherapy for the next week. After long silence, Michelle reached over, grabbed my hand, and said, "Just sit here with me, Kim. That is enough for today." We sat. She talked a little. We cried. We prayed together before I left. It felt like so little to me. It was what she needed.
I understand Michelle's request slightly better today. The plan for Nathaniel's airway is different than anyone expected. This was not the surgery we hoped to be planning for. The path before us will be longer and harder than originally anticipated. There will be things that you can do and prayers you can pray and ways to come alongside and support us. I will share more information in future posts. But today, just sit with us.