I don't often share the details of our journey unless I think they might help someone else. Mostly, it's because there is a lot to recount, a lot to digest, too much reality for some, or just too personal.
Sometimes, it can be healing to share.
A year ago, today was one of the worst days of our journey. I decided to write it down so, on the difficult days, I can be reminded of how far God has brought us.
On the evening of November 30th, 2022, I was leaving Cohen's room to do a child swap with Todd. She needed to get to gymnastics practice, and he was waiting in the car. To my surprise, Cohen's primary doctor and both primary surgeons were sitting outside his room. It was apparent that the conversation was not going to be quick or pleasant, so I sent my daughter back into the room to wait. Cohen had several immediate issues: his inflamed appendix needed to be removed, he had a fungal infection from his central line that required the line to be replaced, and his pancreas was filled with sludge and stones. Furthermore, they wanted to perform all of these procedures in the morning. There are so many details that need to fall into place when Cohen goes to the OR that there has been an unwritten policy to avoid "add-on" trips at all costs. None of us felt great about deciding this at five in the evening, but everyone agreed that it needed to be done.
Cohen was already experiencing breathing issues, requiring 2 liters of oxygen and trialing bipap at night. On the morning of December 1st, I had a sinking feeling in the pit of my stomach, a feeling some refer to as "mama's intuition." I felt the need to take lots of pictures and videos while holding onto his hand. The morning seemed to drag on forever as we anxiously waited to hear when they were ready for him.
We were so excited to discover that we had one of our favorite anesthesiologists. During our huddle, I shared that things were a bit different, and Cohen now required supplemental oxygen. After the preop time out, Cohen and I did our final prayers, hugs, and goodbyes. Not knowing that hours later I would replay those moments over and over again in my mind, desperatly trying to relive every second while begging God for the opportunity for more.
The girls and my mother-in-law came to wait with me that day. We were up in his room, and I was busy with my usual nervous tasks when my phone rang. I had only left him thirty minutes ago for what was scheduled to be a lengthy procedure. When I saw the name on the caller ID, my heart sank. It was our primary surgeon. "Carrie, where are you?" The memory still echoes in my mind. He told me to wait there and said that he was coming to see me. You don't have to have ever had someone you love in surgery to know that whatever he was coming to tell was not going to be good. I paced the halls of our unit, waiting for what felt like an eternity. Word quickly spread that I had received a call, and our primary nurse practitioner met me in the hallway.
Minutes later, our surgeon and anesthesiologist appeared from around the corner. I remember thinking, "Why are both of you here... Who is with Cohen?" My brain wouldn't allow my heart to piece together the details. Suddenly, as if she had appeared out of thin air, our primary doctor, Stella, stood beside me and directed us to an unoccupied patient room. I don't know when others joined us, but I remember scanning the room and suddenly seeing it filled with nurses, child life specialists, and attendings. I don't know how to explain it, but it feels like all my nerves are exposed, allowing me to perceive and experience words and sounds as they surround me. Someone suggested calling Todd. Stella reached for the phone, recognizing that my hands were too shaky.
"Cohen immediately got into trouble when we brought him back into the OR, and we had to call for help." They went on to tell us that they struggled for a while trying to re-establish his airway, but they were finally able to place a breathing tube with the help of the Critical Airway team. At that point, he was too critical to undergo the surgery and needed to be transferred to the ICU to be reevaluated before the possibility of surgery could be reconsidered. We have always asked them to be honest and transparent with us, and this was not the moment to sugarcoat anything. They went on to say that it was an incredibly dangerous situation, and they were extremely concerned that if the tube accidentally came out, they would not be able to reinsert another one. The tube was very fragile due to his severe allergies, so they could only use ties instead of tape to keep it secure.
All I wanted to do was to see Cohen and hold him, but they needed to stabilize him in the OR before it would be safe to transfer him. Our team wanted to get back to him so they could provide us with a better update. Stella went to talk to the girls because I was too upset to return to the room and see them. I didn't want them to witness me so upset. She shared a portion of the news with them, delivering it in her remarkably gentle manner. After taking care of me and the girls, she informed me that she was going to check on Cohen and promised to update me soon.
Waiting again to be told that I could be with him felt like torture. Our NP decided to take me down to the ICU and find his room ourselves. We went to the wrong wing, and when she asked the HUC where his room was, she informed us there was a code in the OR and didn't have any other information. Her words felt like a thousand blades, cutting me open. About that time, our NP's phone rang. It was Stella asking her where she was and that she needed her. As she rushed off to find her I suddenly found myself alone in the waiting area, experiencing a type of fear that I had never known before. Waiting once again for any sign that my sweet little boy was alright. After about twenty minutes, I texted Stella that I was scared and needed to know if he was okay. A minute after minute went by with no response, and my mind began to let my heart in on the details that were now enveloping me like a tsunami. Frantically, I called Todd, barely able to form words through my sobs. "I am so afraid he is gone!" Is all I could repeat. He turned his concern to me and tried to calm me down while he navigated through traffic.
Still alone in the waiting room, thirty minutes passed as I endured the anguish of believing that we had lost him. Finally, our primary child life specialist, who had been called to come to me, came around the corner waving her hands. Knowing that the sight of her presence would immediately provoke more fear, she attempted to signal that she wasn't there for "that" reason. Although she didn't know his exact condition, she was aware that he was still alive and that efforts were being made to transfer his care to the ICU team. However, it was a challenging task. She sat with me as I began to settle. We even managed to find some peace in looking at his silly videos, laughing and crying together.
Soon, members of his team began trickling out to me, Stella, and our NP, and then Todd arrived.
Our incredible anesthesiologist even joined us in our decompression circle. Everyone sat on the couches, which I now pass daily, feeling drained and trying to process the events of the day. We discussed what had happened and contemplated our next steps. Our anesthesiologist probably felt the weight of it all the most. I could see it in his face and hear it in his voice. He was upset, revealing to me that during the code he had feared that we were going to lose him. He shared with me that he kept talking to "his buddy," reassuring him that he could do this because he was the strongest little boy he knew. It was apparent how much Cohen had impacted the lives of these individuals over the years and how deeply they cared about him.
Once reunited with Cohen, I immediately slipped into my role of overseeing the important details of his care. I had no way of knowing that in just a few days, another day would rival our worst nightmare ever, when he would code for a second time. Maybe one day, I will feel up to sharing the details of those difficult weeks that silently unfolded into a year.
Perspective was the greatest lesson I learned throughout this year. In the weeks leading up to November 30, 2022, I had been pleading with our care team to allow us to go home for Christmas. But on December 1, 2022, I was just grateful that Cohen was alive and that our family had the opportunity to celebrate another Christmas together... I no longer cared where we spent it!!!
So, the answer to the age-old question, "How do you keep doing this, Carrie?" is because I came too close to not having the opportunity to do it anymore.
Because he continues to do it, therefore I can too.
Because not doing it means not having him.
Because I know others who would sacrifice their own lives to continue doing it for their child.
Because he is worth it!!!
Cohen's name means "priest; giver of God's word." We didn't realize the meaning when we gave him that name, but God knew. His middle name, Isaac, means "one who laughs and rejoices." And though I have never been one to care much about the meanings of names, I believe that these names must have been divinely chosen for him. When Cohen was born, a dear friend told me his name was a good and strong one. I had never thought of it that way, but I couldn't agree more. Every day, he proves that he is more than worthy of them.
Please. Do not feel bad for us because we have spent 365 days in the ICU out of our 495-day admission. Instead, be grateful with us that this child has the opportunity and determination to continue fighting. Most importantly, he has the potential to make a difference in the world while doing so.
