This is what the Sovereign Lord says to these bones: I will make breath enter you, and you will come to life.
Ezekiel 37:5
Breathing treatments are the worst. Every night I would have two different treatments in order to open my lungs to life-giving oxygen. One was just regular albuterol, the other was a medicine that smelled like rotten eggs and left me with orange stains on my lips and teeth. It was gross. As the respiratory therapist came in to give me my nightly treatments he noticed that something didn’t seem right. After working with me for several minutes, my oxygen levels began to plummet. Breathing became more difficult which caused panic to set into my heart. Eventually it was determined that my diaphragm and lungs were not working adequately and were not expelling CO2 like they should, causing it to build up in my body and displace oxygen. I was wisked away to the ICU and placed on a CPAP machine to get my breathing under control.
To complicate matters, Jodi was getting ready to head back to Union City to be with our girls and my mother was going to relieve her for a much needed break. With my recent down turn and move to the ICU, Jodi found herself conflicted. After much prayer and conversation with nurses and my mother, we decided that she could trust the medical professionals enough to leave me in their care. She was so good to me (and continues to be). It is only a shame that I wasn’t aware of all that she was doing at the time.
After the successful hand-off of caregivers, the concern for my breathing continued. There was discussion about placing me on a ventilator so that a machine could help me breath at all times. No one wanted this, but my lungs had been accumulating blood and my diaphragm was just too weak to breathe on its own. Eventually it was decided that intubation was the right choice and I awaked from a short procedure with tube down my throat. Normally when someone is intubated, they are sedated to the point where they aren’t even aware of what is happening, but I was not. I was fully aware of the fact that there was a tube going down my throat and although I was not a fan, I knew that it was keeping me alive. Undeterred by my inability to talk, I tried my best to figure out how to communicate with people around me. Mom made a sign that had all 26 letters of the alphabet on it and I would mouth letters to her spelling out the words I wanted to communicate. It was exhausting for both of us, but I was glad to be able to get a few sentences in here and there.
By now I had lost my hair, and with the dark circles that surrounded my eyes I was starting to look like Uncle Fester from the Addams Family. COVID-19 was continuing to make everything much more difficult for everyone, especially since I was neutropenic (Meaning I had very little to no ability to fight infection) and in ICU. When mom arrived, she had to isolate with me in the ICU until multiple COVID tests came back negative. That meant that she was stuck in the room like I was and that she didn’t have access to Starbucks. First world probs, but probs none the less! Stupid COVID.
As the days progressed the doctors suggested that we put in a trach. I was still too weak to completely breathe on my own, but keeping me intubated with a tube down my throat was not a good long term solution. A trach would allow me to be connected to the ventilator when I needed it and then be weaned off of it as my lungs and diaphragm got stronger. This was incredibly discouraging as it seemed iike a major set back and neither Jodi, my mother, nor I wanted to go this route. However, as we continued to have conversations with the doctors it was determined that this would be the best course of action. I would have the trach put in, and then have the NG tube that was going down my nose and providing me nourishment removed and a more permanent PEG tube inserted into my abdomen directly into my stomach. My doctors let me know that it would likely be months before I was able to eat and drink on my own again. This was incredibly frustrating. I hadn’t had anything to eat or drink in weeks and I longed just to fill my mouth with water feel it’s coolness washing down my throat. I struggled with the reality of where I currently was physically and it was plunging me deeper and deeper into a depression.
By the time I got my trach, Jodi was back from her much needed time with the girls, and though everyone was super pleased with my progress, I found myself spiraling more and more every day. As Jodi watched me digress she wrote these words:
My morning began intently listening to my husband’s silent cries of despair as the length of this journey just felt incredibly heavy today. My tears fell as I saw the anguish in his eyes as he told Dr. Kang and Dr. Zerbe that he didn’t feel like it was worth it anymore and he felt hopeless. There is no pain like watching your loved one hurt. My tears continued to fall as I watched these two incredibly patient and compassionate women listen to his every concern and affirm his emotions instead of dismissing them.
He is a person…not a project. He is a soul…not a statistic.
And now I am crying again. He spent most of the day pretty depressed. Dr. Kang shared with him this morning that we are more like months away from him eating and drinking rather than days or weeks. That was probably the catalyst for the pain. Although we just marked Day 28 off of the calendar, it feels like the journey will be endless in Jeremy’s eyes.
I was healed from the genetic disorder that had defined my entire life up to this point. I had survived the transplant that very few thought I would survive. I had every reason to find joy in new life, but it had been more than a month since my body responded to my brains signals asking it to move. We rejoiced over small involuntary movements in my feet, and my ability to move my right thumb, but the reality that I may never move or function on my own again was a very real. Jodi was trying hard to be a positive voice in my ear, but Satan was not allowing me to cooperate and I found myself sinking to very dark places.
Because I was not able to move on my own, every two hours my nurse Anna would have to come and rotate me so that I would not get pressure sores anywhere on my body. As she came in to move me one evening, I began having difficulty breathing again. It was then that another nurse suggested that I be put back on the ventilator to help me catch my breath. Jodi and Anna both looked at each other shocked. No one was aware, but although I had been hooked up to the ventilator, it had not been turned on. I had been breathing by myself all day. Just a couple of days before, I couldn’t have breathed by myself for more than a few minutes, but today I had— it had been by accident— but I had none the less.
This meant that we could begin thinking about a new trach, one that might even allow me to speak again. It was all very exciting and provided a much needed boost of encouragement for everyone. A few days later, Jodi would get another, much needed boost of happiness. Her day started with one of our nurses, Mary Lacy bringing her a bag of goodies including some awesomeness from Trader Joe’s. Then later in the day, two of my nurses from another floor came by to visit and look at pictures of our girls with her. And then, as we were preparing for bed, one of our nurses came into the room to tell Jodi that she had a visitor. This was odd as we didn’t know anyone here. We thought that perhaps someone was mistaken. Jodi made her way down to the atrium and… well… I’ll let her tell the story.
As I entered the atrium looking aimlessly, this beautiful mama with her faithful husband and two gorgeous daughters approached me.
“Jodi, I know you don’t know who I am, but my name is Rosaly and this is my husband Elliott and our two girls that are the same age as your two girls. I just feel like God very clearly said to me that I am suppose to find you and hug you today.”
She goes onto explain that they are members of (Jeremy’s cousin) Chad Powell’s SS class and have been following our entire story praying right alongside us all the way. Her daughters asked her if she knew me and she told them that she felt like she did because I have shared so much in our journey. We talked about praying with specifics and those in our lives that are models of what it means to be a prayer warrior. I told her that she had truly done a blessed thing by not only modeling for her children what it looks like to be the literal hands and feet of Jesus, but also what it meant to act/go when the Spirit beckons. They do not live here. Chad is Jeremy’s cousin and they all live in Lynchburg, VA. They were in town and God urged her spirit and they were willing and obedient. I mean, WON’T HE DO IT!?!?
They hooked me up with Cookie Butter and Living Proof Dry Shampoo!
And here is another tugging of the spirit…inside my gift bag the carb included to enjoy with my cookie butter was ONLY my favorite cracker in the pantry. How would they know?!?!? But God!
Friends, I just want you to know that God is over all of the BIG and the little. I am so blessed. My mama hugged me through Rosaly and it was just a treasure. Thank you guys so much!
Mary Lacy, Nathalie, and Alessandra filled my cup and you guys made it overflow.
We were at day 36—over a third of the way through the transplant process. Only God knew what the final 64 days would hold.
Jeremy Powell 