Today was the sixteenth time in less than three years that I handed Nathaniel to an anesthesiologist for a surgery or medical procedure. That does not count illnesses and lab work. Despite the outward appearance of resiliency and well-being, the chronic need for medical intervention is taking a toll on Nathaniel's body. We are in Ohio for two days of appointments at Cincinnati Children's. Nathaniel was seen by four surgeons in the operating room this afternoon. As a side note, I really like it when doctors play well together and coordinate care; if handled differently, what was done today could have required four separate visits and four more handing overs to be sedated. Thank you Cincinnati Children's!

Nathaniel saw the hand surgeon today. It has been almost a year since surgery to rotate his right thumb and six months since our last check up. The surgeon is very happy with the placement of the thumb and Nathaniel's ability to do the pincher grasp with the right hand now, something he was not able to do prior to surgery. Nathaniel's right hand will probably not be his dominate hand; we expected that. But surgery has created a very useful support hand.

We have been working on hand strength for months in occupational therapy. Nathaniel struggles to pull up his pants or separate pop beads. The right thumb, while in a good position now, lacks normal muscle structure. Surgery included splicing a muscle on the pinky side of the hand and bringing it over to the thumb to increase muscle support. Nathaniel has a curled pinky finger as a result of relocating the muscle.

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.