None of my tears, fears, or pleas over two days changed the outcome. My husband’s doctor and medical team reiterated that his swollen pin size airway made it too dangerous to place a feeding tube. He would have to have the tracheostomy just before.
His weight loss, trouble eating, drinking, and breathing drove the final decision. I had fought adamantly against the trach for several days. Yet the hole in his throat was critical for breathing. Though most likely temporary, they told us that sometimes later, a laryngectomy becomes necessary. That is permanent. I attempted to tuck that horrifying thought away in a faraway file of my mind. I could only deal with the present moment.
We had been whisked away from our small but now almost seemingly cozy room on the 5th floor. This bright, white, oversized room on the intensive floor unit did nothing to support my nerves. It was cold, unintimate, and daunting. The atmosphere screamed of profound urgency.
When they wheeled him in, I was unprepared. It was as if all the fears that had tried to consume me before the procedures were valid.
As they moved him into the stationary bed and hooked him to monitors, cords, oxygen, humidification, alarms, and equipment I didn’t recognize, I knew I had just minutes to wrestle with my emotions and find my poker face. Right before they left, they plopped down a small whiteboard. We had been pre-warned that would be his way of communication for some time. We communicated via writing enough for me to know he was suffering. I held his hand and called his nurse for medication, and soon he was asleep at my side.
I was overwhelmed with emotions. My brain circuits appeared to be cross-firing from devastation, fear, anger, confusion, and at some point, landed on pure exhaustion. I slept for 30 minutes. Just enough to refuel the helplessness I felt.
I sat in the recliner beside my husband’s hospital bed. It was somewhere between 1, and 2 am on February 4, 2021. I grabbed my pad of paper, pen, and phone. I delved into researching every term that might be crucial to my husband’s future well-being or treatment.
My earlier attempt to “tuck mentioned laryngectomy in the back of my mind” was like a section of bangs too short to stay behind your ear. I searched for helpful information. I read, made notes, and tried to make sense of it. I attempted to become more knowledgeable as I sorted through what I hoped were credible sources. Among all I found was information on alternatives to having a laryngectomy.
That quickly led me to Dr. David Lott, a professor, director, chair, researcher, surgeon, ENT otolaryngologist, philanthropist, etc. His information included impressive achievements, specializations, certifications, honors, awards, publications, reconstruction success, and many accolades.
What most caught my attention was the words voicebox transplant. Dr. Lott and his team actively pursue and research this type of treatment. I watched videos of his impressive research and was drawn to his kind, humble demeanor. His overarching goal was easily identifiable. He works to provide cancer patients with good quality of life. A laryngectomy would be the last resort after all other options were exhausted. But there is a future hope when it becomes a necessary procedure.
I saw his email listed. At 2:19 a.m. I wrote the most heartfelt, devastated, needing hope plea I could muster asking about the voice transplant. I also included details about my husband being young and how his kids, grandbabies, and I needed him. When I hit send, I was unsure of a reply. I mean, it was clear to me that he is a pretty big deal. In the back of my mind, a stationary reply or perhaps one from a secretary is what I anticipated. Writing it out always helps me. So I thought nothing lost, nothing gained.
The next day was busy. It was later that morning before I checked my email. To my surprise, I had a reply. It was not from a secretary or someone writing on his behalf but from Dr. Lott himself.
(copy and pasted from his email message)
I am sorry to hear about all you and your husband are going through. I would be more than happy to talk. Please send me your phone number, and I will give you a call today.
Still struggling with doubt I could be worthy of his time, I told one of my sisters to check him out and see if what I read in the middle of the night was legit. LOL! I even told him this later, and he chuckled. I thanked him, told him I was surprised to hear from him, and sent my cell number. He answered again and assured me he would try his best to call in the afternoon.
When I received no afternoon call, I wasn’t completely surprised. Oh, the struggle of a doubting Thomas!
But I was beginning to have greater hope when I checked my email and had an update. He was in surgery longer than anticipated that afternoon, so he emailed and asked to reach out that night. Receiving his emails gave me a new outlook that day. My sister had checked and confirmed he was legitimate, and I hadn’t dreamt it all up. Still, I wondered if I would get that call. As the time crept closer, I watched the clock.
When Arizona Mayo Clinic showed up on my cell around 9:30 pm, I was exhausted, excited, and nervous.
He was as gracious as I was tongue-tied. I couldn’t think straight. He suggested I tell him my husband’s story. So I did. He was both polite and attentive. He reassured me there was still hope and possibilities to consider. We were waiting on the doctor’s recent biopsy from my husband’s surgery. Before the call ended, he suggested I contact him again when we had those results.
Though we had face-timed after my husband’s surgeries, it did not prepare our children for the current reality until we were home. Tears flowed freely from each of us when we arrived home that first day. Once home, I was too busy to think straight, trying to be my husband’s caregiver. It was an around-the-clock job. My son, devastated by my husband’s current reality, asked me to contact Dr. Lott again. I gave him the email to follow up. Dr. Lott graciously returned his email and called him, too. Months later, that would turn into a video call.
Over the past year, his team has looked over my husband’s records to give us a second opinion. We had the video call before my husband’s necessary laryngectomy. Once last year, when we had called his facility, the recording said if you are trying to become a new patient, it will take three to four months. He said he would find a way to clear his calendar and get us in within the month if we chose to come. We have considered traveling to Arizona on more than one occasion, though just shy of a 20-hour one-way trip. It is always in the back of my mind.
Initially, with each contact, I contemplated this would be the last email he would be able to answer. But we have kept in touch. I share updates. I try to be respectful and mindful of a doctor’s often overtaxed schedule. He has no obligation to us. But he returns a message as soon as he is able.
God puts people in our path for a reason. I am unsure whether it is entirely for encouragement or he will treat my husband one day. He is an exceptional Dr. that has not forgotten why he became one in the first place.
A year ago today, he read a wife’s desperate message. After a full day in surgery, he kept his word and went above and beyond his call of duty to reach out to me that evening. During one of the most challenging times in our lives, I will never forget his kind encouragement. Dr. Lott means more than I can convey during this often heart-wrenching, exhausting, and uncertain journey.
If he were closer, there would be no hesitation. He is who we would choose for treatment. We have some great doctors and nurses, no doubt. But the one who has provided a “Lott” of hope and continuous encouragement is one we have never physically met.
I hope he will read this with the honor and appreciation I have attempted to convey.
Hoping you find a place in my space. ♥
Reflection Question
Have you had a doctor that has gone above and beyond their call of duty?