Back to Ohio in August and an Offer You Won't Want to Miss
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 found out about Cincinnati's unique interdisciplinary approach and world-renowned center for treatment of airway disorders before I met Nathaniel. I was a graduate student when we learned of his need for a forever home and about his medical conditions. In preparation for meeting him, I spent long hours researching medical journals about his known diagnoses. I noticed a trend. Many articles about airway reconstruction were authored by a limited number of physicians. When I researched those physicians, many had a connection to Cincinnati Children's Hospital.
In September 2014, we learned Nathaniel aspirates. Getting this diagnosis was a long journey. His St. Louis medical team assured me for over a year that it was theoretically impossible for him to aspirate. They assumed the opening in his upper airway was too narrow for food or liquid to get through. I had concerns of aspiration the first time I watched an OT feed him at his foster home. That day Nathaniel ate willingly for a few bits, started coughing, and vomited. His eating pattern did not change despite daily efforts of multiple therapists, myself, and variations in food textures and thicknesses of liquid. Nathaniel had a willingness to eat, but it was consistently hard.
I pushed for a swallow study the winter of 2014. During the study, a new speech therapist observed me feeding Nathaniel. She concluded, like other therapists, that the coughing was due to a strong gag reflex. Rather than continuing the second portion of a swallow study, a video x-ray barium test, the therapist called one of Nathaniel's physicians to ask the likelihood of aspiration given the severity of his airway deformity. "None," was the answer. We were sent home with instructions to continue to work on feeding. He would outgrow the gag reflex with time and practice.
We worked on feeding for another six months. We graduated from pureed carrots to chocolate. When I suctioned red play dough and graham crackers out of his tracheostomy tube, I had proof that my hunch was right. He was aspirating. Despite theory. A thorough swallow study, including the video x-ray portion this time, confirmed the diagnosis last September.
I knew when I watched Nathaniel's swallow on the video x-ray that it was a game changer. I started to cry. I turned my back to everyone and asked for a moment to collect myself. The airway reconstruction surgery that St. Louis Children's Hospital anticipated could resolve Nathaniel's airway problems widens the deformed narrow part of his trachea. Currently, that narrow section is protecting Nathaniel's lung health; it is preventing excessive amounts of food, drink and oral secretions (spit) from entering into lungs. The surgery to fix Nathaniel's airway might jeopardize his lungs. We might exchange a delicate airway for chronic lung disease.
Following the aspiration test, we had multiple hard conversations with Nathaniel's team here in St. Louis. They saw two options. One of the surgeries is performed locally about once a year. The second surgery option has not been performed locally in nine years. We currently have not been offered either surgery. We have been asked to wait and see if Nathaniel's illnesses or accidents steer us one way or the other. Repeated aspiration pneumonia could indicate one surgery. Repeated airway accidents (Nathaniel's trach coming out and subsequent respiratory distress) could indicate the other surgery.
Shortly after Christmas last year, I started to get antsy. The idea of waiting for illness or accident to steer the boat is hard. Trach momma world is small. I know the names and faces of kids who were fine one day, almost ready to get rid of their tracheostomy tubes, and then an accident leaves them with a severe brain injury from oxygen deprivation. Or worse. They die. Of course, everything in my being wants to spare Nathaniel from further illness or injury or death. It is why I go for thirty-six hours without sleep when he needs watched through the night. It is why I have his emergency information plastered all over his car seat. It is why I visited the firehouse in Lakeside, Ohio the second day of vacation and gave a brief talk on Nathaniel Emergencies. This is America, the land of preventative medicine, and helicopter parents who spare their children all suffering, and immediate answers, right? Waiting for the next catastrophe does not fit me well.
Early one Saturday spring morning, I needed to do something about it. Monday morning and calling the "If you would like to be a patient" phone number I found on Cincinnati Children's web page seemed too far away. I emailed the director of research, an ENT with the Aerodigestive Center in Cincinnati, before my morning coffee. I told him Nathaniel's story. I shared a photo of muddy little boy on a bike in the backyard doing way too normal boy things to have such a compromised airway. Within a few hours, I received an email back. He was interested in the case. "It is a little unusual to have such stenosis and aspirate," he said. He promised someone would call me in a few days. 8:05 on Monday morning an unknown number from Cincinnati appeared on my cell phone. I have been dealing with paperwork and authorizations for months. It has been a time consuming battle. The phone call confirming Nathaniel's appointment itinerary was my personal sign that God is still in the business of moving mountains.
I know there is a chance we will hear the same news in Cincinnati that our St. Louis team has told us regarding possibilities for Nathaniel's airway. But I hope not. I am excited and thankful and a little nervous about the opportunity. An entire new team of five physicians/disciplines will evaluate him from head to toe and then think hard together about a solution for him. Hope drives me on.
Our tight circle of friends and family who have known and have been praying about Cincinnati ask repeatedly, "What do you need?" We need prayer. We need prayer that Nathaniel stay healthy for the next month prior to his appointment week. A virus or pneumonia now will postpone our trip. As the trip approaches, we will share additional prayer requests here and on Nathaniel's new public Facebook page, Hold My Words. Like the page to keep current.
The Offer?
We realized during our vacation that Nathaniel has a huge team of family, friends, medical professionals, and even strangers who follow his story and are genuinely concerned about his well-being. We do not take that for granted. If you are reading this, you are part of that team. We want you to know how much you mean to us. We need your continued prayer for Nathaniel. We want you to feel a part of Nathaniel's story and how it represents God moving in the world today. On August 10th we will begin shipping our first batch of TEAM NATHANIEL/HOLD MY WORDS bracelets. Pre-orders can be placed below.
The phrase HOLD MY WORDS has many layers of meaning for us. It reflects the commitment we have as a family to help Nathaniel find his voice despite his airway abnormalities. It reflects our willingness to literally hold his adaptive equipment so he can get on with being a normal two-year old. It also reflects our commitment to God and his instruction in Proverbs 4:4 to take hold of His words and to keep his commands. In following God's command to care for orphans, we met Nathaniel. We have seen God faithfully meet us in and equip us for every step of this journey. Our prayer is that when you see a TEAM NATHANIEL bracelet on your wrist, you will remember to pray for Nathaniel. And also remember to live courageously as you cling to God's Word and follow Him into new and exciting things.
