All in Airway and Respiratory
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.
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.
Emily and I switched shifts around three this morning (Thursday) and Nathaniel looked peaceful. He repositioned frequently through the night, but over all had a more restful sleep than he had on Wednesday. Which is good. Wednesday night was rough. Nathaniel was awake from 11:30 Wednesday night until 4:30 Thursday morning. He napped lightly in my arms through that time, if he slept at all. I assume it was due to discomfort and pain despite giving him as much pain medication as I could. I am relieved his Thursday night went better. Thank you Team Nathaniel for the supportive response to my Facebook post requesting prayer for sleep.
