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.

I had hoped to post some photos for Nathaniel's third birthday last week, but a sudden hospitalization reorganized all plans. He had a runny nose and sneezes on Friday, November 21st, and I assumed it was a virus. Nathaniel has had a handful of viruses that come and go like they do for most children. He woke up coughing Friday night and threw up. The night nurse needed to put him on oxygen -  often our first indicator that he aspirated.  

The larynx does a number of things for the human body. Its most important role is providing a passageway for breathing. Second and almost 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 shared the news of Nathaniel aspirating with Rich by sending him the photo of the green gunk on Nathaniel's shirt. I had no words to soften the message. He had only one word back. "Sad."

I left the clinic and got on the elevator. There was a doctor in a white coat already there. Nathaniel burst into tears, started to kick his legs aggressively while turning in the stroller to reach me. This is his often response to seeing anyone in a white coat. Especially moments after an invasive painful test. The doctor moved to the far corner of the elevator away from us. "I am not going to hurt you," he said to Nathaniel. "I won't even look at you." He turned his back to us, his face to the corner, and remained quiet for the ride three floors down. It was what Nathaniel and I needed. It was perceptive and kind on the doctor's part. It was a gift from God. God has continued to meet me moment by moment since yesterday's test.

If fact He prepared me Sunday morning for discouraging news this week.

I am thankful that a picture is worth a thousand words. It means I do not need to write much; the photo above says it all. A nurse and I held Nathaniel down so a doctor could put a camera up Nathaniel's nose and down his throat while a speech therapist force fed him green dyed apple juice. He coughed green dyed secretions out of his trach tube for an hour afterwards.

He is still aspirating.

I took Nathaniel for his pre-Cincinnati pediatrician check up this morning. He needs clearance from his primary care doctor prior to every visit. The doctor gave both of us a high five after hearing an update and giving Nathaniel a quick exam. "Congratulations on getting him this far," he said, "I know it has been hard and long, but this is a different kid than I saw six months ago."

I would agree.

I can not believe it has been two weeks since Nathaniel and I returned from Cincinnati. One reason is that within a couple days of getting back, I learned the dates of when we go again. It seems my life is now categorized under two labels: "Has to be done before Cincinnati" and "Can wait until after Cincinnati." By mid-November we will have been there three times in three months. It does not leave much room for the "Has to be done before Cincinnati" things.

It was around day six that Emily and I realized our experience here in Cincinnati has had similarities to a Christian mission trip. Too few people for the work. The lack of sleep. Long hours spent helping someone. An inability to get a shower daily. Difficult living conditions. That last one is what I want to write about before our trip comes to an end. The subtitle for this post could be: Five Hotel Hacks for Parents of Medically Fragile Children or How to Make a Hotel More Like a Home or Kim's End of the Stay Rant. Title it as you see fit after reading.

It is four forty-five in the morning and I am sitting on the floor just inside my bedroom door. It is open. Nathaniel is freshly back to sleep in the living room portion of our hotel suite. The pulse oximeter is delicately balanced on the TV stand so I can see it above the chair pushed hard against the couch. The patient side wire goes one way to Nathaniel's foot and the electrical cord goes to an outlet on the opposite side of the room. Together with other machine cords, room air and oxygen lines, there is a labyrinth of wires that would challenge even CatWoman. The alarm sounds, and I divert my gaze from laptop to machine as I set down the one and move towards the other. Oxygen level: 84%. I silence the alarm. 85% 86% 88% It rises slowly with every flash. Nathaniel's central sleep apnea. 89% 90% 90% 91% I pull a flashlight out of my pocket and check his color. He looks cozy and comfortable, lips pink, chest rising and falling rhythmically. I lightly squeeze a finger. Capillary nail refill is good. 91% 91% 99% That finger squeeze always works. I return to my computer desperate for awake time that is not entangled with hands-on care giving. If you are reading this on Monday morning, you will know I found that time.