A Narrow Airway, but a Wide Mercy
The larynx does a number of things for the human body. Its most important role is providing a passageway for breathing. Second and equal in importance, the larynx protects. The coordination of nerves, muscles, and cartilage work together to prevent foreign objects, including spit, from entering the lungs. We are all familiar with this process. Something starts to go down "the wrong pipe" and we cough it out. That is your larynx doing its job. Another function of the larynx is to produce sound or our audible voice. A fourth function is to help move food and drink toward our esophagus and stomach. Four things: breathing passageway, protection, sound production, and aid in the eating process. We learned last week that having all four is not an attainable goal for Nathaniel.
I write that we learned last week, but in reality we have known since our first meeting with Nathaniel's local ENT that full restoration of all four functions was unlikely for Nathaniel's airway. There was a hope. And there was confusion on which functions might be preserved. And there was question on how long to wait before decisions were made. What we learned new last week in Cincinnati is that Nathaniel's larynx still does not protect. What we are looking at today in Nathaniel's airway structure and function is exactly what was present at birth. We also learned that it is highly unlikely that more time will change things.
The team in Cincinnati has suggested that it is an appropriate time to make a quality of life decision on Nathaniel's behalf.
Nathaniel's airway is very unstable in its current state. The surgeon was clear that should his tracheostomy tube come out or become blocked, we have two minutes or less to get an airway reestablished before the risk of an oxygen deprivation brain injury. One hundred and twenty critical seconds. This is why we need ICU level care from home health nurses. This is why I drag Nathaniel and an older brother from fire station to fire station to talk to first responders about tracheostomy emergencies. This is why we know where the spare trachs are every minute of every day and night, why we take trachs and a resuscitation bag outside or downstairs if Nathaniel is outside or downstairs. This is why Rich or myself are always with Nathaniel, why we ride in the back seat with him, why we have learned to pee quick and are willing to skip showers. If having all four functions of Nathaniel's larynx restored depended solely on our willingness to do this longer, we would keep on keeping on. How we wish our perseverance alone could change the choice before us.
Getting home to Rich has made things easier. The week's words, diagnosis, and questions tumbling around in my head quiet down when my head is on his shoulder. But then the tears come. We are in a bittersweet place. Knowing is good. Letting go of hope is hard. One minute we dare to peek into a future of what life might look like for Nathaniel if his airway is more stable. The next minute we remember what will be forever lost with either road we take. And we grieve.
I am thankful that there is a wideness in God's mercy. That "there is no place where earth's sorrows are more felt than up in heaven. And (that) the heart of the Eternal is most wonderfully kind." The hopes and prayers we had for Nathaniel to have fully restored ability transfers to hope in our God and Savior to use the lingering disabilities for His glory.