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.

The outside door from the bedroom to a patio is open and I am watching fog roll off a pond just beyond the patio. Cool Ohio morning air is coming through the door requiring me to stay snuggled under the comforter. Our week at Cincinnati Children's Hospital for Nathaniel's evaluation by the Aerodigestive Clinic is over; we are spending the weekend at a friends' home before heading back to St. Louis. It was a good decision to come here and gradually re-enter real life. Generous hospitality and peaceful settings have a unique way of setting things back on course and calming chaos. I am thankful for this place to linger, to reflect, and to write this morning.

I have mentioned Nathaniel's airway difficulties in other blog posts.  With our upcoming trip to Cincinnati Children's Hospital Aerodigestive Center, I want to explain his conditions as we understand them today.

Our local medical team has diagnosed Nathaniel with congenital stage 3 subglottic stenosis with a laryngeal web. The subglottic area of the trachea is directly below the vocal cords. Stenosis means narrowing. Staging is rated 1-4; stage 4 is completely closed.

I received a phone call last week confirming dates in August that we will return to Ohio. Nathaniel has been accepted as a patient at Cincinnati Children's Hospital Aerodigestive Center. We will be in Cincinnati for a week, August 17-21 for his initial evaluation appointments.

Why Cincinnati Children's?
Short story: It is the world leader in pediatric airway reconstruction. Skip to the bottom of this post for the offer.
Long Story: read on.

I am amazed how many people follow Nathaniel's and our family's story. Almost weekly at church someone we don't know will approach and want an update. Last night I realized I have this "other" category for Facebook messages. I am not sure why some messages go to my inbox and some to other. (If you know why, please tell me in the comment section below!) There were over twenty messages waiting in that other folder, some dated back to April in Nathaniel had hand surgery; all of them notes of encouragement, prayer, and kind words about sharing Nathaniel's story through this blog. They made me cry. You are all so genuine and so faithful to show support. Thank you for reading. Thank you for liking Facebook posts. For letting us know you are praying. It makes a difference.

I mentioned in my last post that for almost two years, we have used the majority of our private duty nursing hours for overnights. Life with private duty nursing has been quite the journey. Night nursing? A whole different ball game in itself. We have had twenty-nine nurses. I have caught seventeen different nurses sleeping; they were immediately removed from Nathaniel's case. A handful of nurses that worked well for us either moved out of town or faced some other personal life change that caused them to leave our job and home health. Another small handful of nurses were skilled, but just not the right fit for us. Non-nursing issues, like a nurse's clothing and belongings smelling like cigarette smoke, can become intolerable when the workplace is our private home.

For all our struggle with finding night nurses, we have had the opposite experience with day nurses. Nathaniel has had just a few since coming home.

Nathaniel was discharged from the Pediatric Intensive Care Unit and went straight to the cast room. We missed our previous scheduled 7:00 am appointment to get his cast removed and pins extracted, but the hand surgery team squeezed us in when we got there. I just wanted to be done. To come home knowing Nathaniel and I would not have to go back in a couple days. Not have to face the waiting room apprehension. Not have to open just scabbed over wounds of fear.

Dinner: snack packet of humus and pretzels and an ice tea. The cafeteria worker, the same one I have seen countless times in the last week, glanced my way and said, "$7.61."

"You're kidding me," I replied. "Seven dollars and sixty-one cents for that?" I wished I had walked to Panera Bread, spent two dollars more, and gotten the Mediterranean Chicken and Quinoa salad. It is amazing, by the way. Try it.

"Four dollars work?" His expression was flat, but kind as he punched in his employee id.

Nathaniel took two steps forward today. He spent most of the late afternoon and evening on room air. Hooray! We also were able to increase his daytime feeds to two ounces given over a two hour period. Hooray! Hooray!

The doctor and I are ready to push that gas pedal to the floor.