Day +46: Life is hard.
The past several weeks have been, without a doubt, the most difficult time of my life. Each day, I have been hopeful that Ramón’s status would change enough to dramatically alter the nature of my update. But it hasn’t, so here goes. On April 19, nine days after his stem cell transplant, an infection caused Ramón’s throat to close, which thrust him into cardiac arrest. He turned to me and – barely audible – said, “I’m choking,” before going down. What happened next was a blur. “We’re losing him,” someone shouted. “Somebody start compressions,” another voice demanded while I was escorted out of the room.
As I took the longest walk of my life, though just down the hall, I heard over the intercom, “Code blue. Hospital tower south. Ninth floor. Room 903.” Code blue always makes me pause and close my eyes, mustering up every ounce of energy I have, knowing that it’s the most serious of codes: a resuscitative effort. With each repetition of Ramón’s room number over the intercom, I became more and more dizzy. “What should I be doing? What should I be doing?” I kept asking everyone.
I sat down in a chair in an empty hospital room, head in my hands. A nurse stood in the doorway, and I started asking what was happening over and over again. “Someone’s here to see you,” the nurse said as a chaplain entered the room. As my heart sunk into my stomach, the chaplain said she was there to support me. Life stood still and fell apart all at once as I heard the continued commotion and yelling down the hallway. Finally, after what I now know was three rounds of attempting to bring Ramón back, I heard “We got a pulse” echo from down the hallway.
Before they took him down to the ICU, I got an opportunity to see him. At this point, a person was manually breathing for him, each squeeze of the balloon maintaining his life. Ramón was in the ICU for 26 days before being transferred to a regular floor. He has been breathing (via a tracheostomy) and sustaining a heartbeat on his own for more than two weeks. Shortly after transferring out of the ICU, we also learned that he was already 100% engrafted, meaning that YuSun’s blood-forming cells have completely replaced his – an important transplant milestone. From a medical perspective, everything is shaping up nicely.
Now, the focus has shifted to Ramón’s neurological status. Despite the medical victories, he is still very minimally conscious. This fact, combined with imaging of his brain, confirms that he has suffered a brain injury due to loss of oxygen. Though the earlier days left more room for possibility, the passage of time has reiterated that, unfortunately, it’s more serious than we’d hoped. Without time-travel capabilities, we really have no idea what’s going to happen. Ramón opens his eyes often and shows other signs of slight awareness, a measurable improvement from a few weeks ago. However, he’s currently unable (or too stubborn) to follow commands, which disqualifies him from most rehab programs. This breaks my heart for many reasons, but I’ve got to believe that, with time and good fortune, maybe a rehab program will see a glimpse of the amazing person we’ve known him to be.
On the surface, things don’t appear promising. Neither did my cystic fibrosis diagnosis. Nor his acute myeloid leukemia diagnosis. Nor his relapse. Nor his likelihood to survive when the code blue was called. Nor his transplant recovery when interrupted by cardiac arrest. But here we are. Though I have and will continue to grieve what might be, I am doing my best to view the “might” in the most hopeful light possible. So, for my sake, I ask that you do the same. Don’t tell me it’s awful or unfair or devastating; these are all things I know. Instead, please channel your energy into believing recovery is possible. Yes, we may very well be completely wrong, but I’m okay with that. You are entitled to be sad and angry; this undeniably sucks. However, I also know that Ramón wouldn’t want you to feel sorry for him; he’d rather you view him as the hardworking, strong-willed, won’t-back-down man that he’s proven to be time and time again.
I appreciate you all and, if I don’t respond to you, I’m just trying to stay above water. Rest assured that I’m taking care of myself, which includes basic tasks like eating and sleeping. Plus, last week we started trying to regulate Ramón’s sleep-wake cycle. A doctor instructed me to “annoy him as much as possible during the day,” and I’ve embraced the challenge – a wife’s dream. Let’s hope that each sunrise brings progress, and each sunset inspires peace. Sending love and gratitude to all our supporters.