We Prayed for a Safer Airway; God Answered Yes
After Nathaniel's Laryngotracheal Separation in February, our Cincinnati ENT told us that Nathaniel's new breathing stoma was big enough that we could stand across the room, throw the trach tube, and get it in. We all laughed. That is an impossibility of course, but we now know that with Nathaniel in the back seat, a six foot one inch lanky Daddy can get the tube in from the front seat.
A few people have asked me why Nathaniel's airway is safer - how did surgery provide that? Before we got home, Rich and I had started discussing what was different from previous accidents. There were multiple things working together.
A traditional tracheostomy stoma, the type Nathaniel had from birth until airway surgery, requires the trach tube be inserted into the trachea by first passing through a hole in the skin and soft tissue. This soft tissue, represented by white in the photo to the right, had a tendency to close very quickly if the tube was not in place. Nathaniel had some control over this - if he would tighten his neck or tuck his chin, the small hole was harder to access. We needed to use an instrument, called an obturator, inserted in the trach tube to guide the silicone tracheostomy tube through the the soft tissue. Once the tube was in place, we removed the obturator to allow Nathaniel to breathe. If last night's accident had occurred prior to airway surgery, Rich would have needed to first retrieve an obturator out of our airway bag and insert it into the trach before attempting to reinsert the trach tube back into Nathaniel's stoma. He likely would also have needed lubricant on the tube which even in the most organized airway bag and best setting requires time to apply. In our previous airway emergencies, the time loss getting supplies was enough to cause compromised oxygen levels, the feeling of suffocation, and vomiting. All which then complicated our ability to secure an open airway.
A new breathing stoma was constructed during Nathaniel's Laryngotracheal Separation surgery. The trachea was disconnected from the upper airways and brought directly to the skin, represented at the red arrow in the photo to the left. The trachea itself is made of (incomplete) rings of cartridge which allow some rigidity. With the help of these rings and since there is no soft tissue covering the opening into the trachea itself, the new stoma stays open even if a tracheostomy tube is removed. This was THE significant factor in allowing a longer response time last night. Additionally, since the trachea offers some structure and we do not need to pass through soft tissue to insert a tube, we no longer use an obturator when we insert a trach tube. Lubricant allows a more comfortable passing, but is not as critical as it was before. Rich literally took the trach tube out of Nathaniel's hand and reinserted it.
Another aspect increasing safety last night was Nathaniel's own response. He has never experienced a day of life without trach ties around his neck and until recently their absence, during night tie or weekly trach changes, resulted in a great deal of nervousness. Nathaniel is old enough to either cooperate and make those care routine easier or resist and make it harder. Prior to surgery, he was afraid of trach changes and often tried to fight us. This response is slowly fading. Trach changes are every other week now; less often mean less to fear. When we do trach changes, we leave the trach out for a moment so he learns that he can continue to breathe. So he learns that he is safe. Nathaniel was fully cooperative last night. He quietly lifted his chin so Rich could work. Fear vs a trust is a powerful factor for Nathaniel. Working with a calm child is less stressful than fighting his flailing arms and legs as he struggles for air. His growing sense of peace about his own airway increases his safety as he allows care to be given.
Rich and I talked about what we will do if (when?) Nathaniel pulls his trach tube while we are driving alone. Though we have never left a trach out for the length of time it takes to slow from seventy-five miles per hour and get off a highway, in theory, the stoma should remain open and his breathing remain uncompromised. Life with Nathaniel is lived by theory until experience teaches us best practices. I drove alone with him to therapy this morning. I probably watched him through my mirrors as much as I looked out the front window. I stayed in the right lane and was content to go the speed limit or slower. Experience now tells me it would be a best practice to be able to exit the highway quickly. Nathaniel is still a trach kid; we are not immune to airway accidents. But life went on as planned this morning and that is a new day-after reaction to a crises. It is a figurative cookie for us, mirroring Nathaniel enjoyment of a literal cookie moments after the accident.
I have thought often today of the top photo. It was taken at our church last August before we took Nathaniel to his first evaluation appointments at Cincinnati Children's. Our pastor invited Rich, Nathaniel, and me to the front for the elders to pray with us, for Nathaniel's airway, and for the team in Ohio. I remember Pastor Barry prayed for a solution that would remove the moment by moment, constant fear of a life threatening incident for Nathaniel, kind of living. At the time, I hoped a yes answer to that prayer would mean Cincinnati Children's would do an airway reconstruction and Nathaniel would live tracheostomy free. There have been valley moments in the last ten months. Many times the decision to keep a tracheostomy for life seemed counter intuitive to living beyond fear of the next accident being life threatening. Of ever living beyond the fear of death. But God is in the business of defeating fear and death. A different yes is slowly unfolding; one that is not dependent on a reconstructed airway, but a reconstructed hope.