Wednesday, December 15, 2021

Merry Christmas 2021

 

It's been five months since Gerardo was accepted into UCLA's liver transplant program and I write this post as an update to my original post.

Gerardo and I have spent most of December at the UCI hospital. Though his MELD score doesn't seem to rise above 21 (the same score that he entered the program with in July), other troubles hover over us. During this hospitalization, he experienced a sudden and harrowing episode of acute cognitive failure related to advanced hepatic encephalopathy. Gerardo's brain was straddling this world and a world beyond this one. It was exhausting for me to watch and exhausting for Gerardo to experience. As he was mostly in another world, I sat bedside during visiting hours talking to him about the past, present and future in order to try and cajole him back to this world. When I recalled the day when Monica was born and the day when Andrew was born, Gerardo's face lit up. There were moments when he was able to hold my gaze for a few seconds and at the end of visiting hours when I tried to say goodbye, he would say "Jenny, wait!" It was the same when either Monica or Andrew visited. He held their gaze and when either of them got ready to leave, he non-verbally expressed a deep longing for them to stay. It was heartbreaking and heartwarming at the same time.

During one of the more desperate bedside moments, I was crying uncontrollably as I asked Gerardo for a favor: "Gerardo, I am asking you to do just one favor for me. You have to hang onto any little kernel of cognition that your brain can latch onto and you have to build upon that kernel and come back. You have to come back."

Yesterday, after days of cognitive failure and assorted interventions by teams of medical experts, he was given a sleep aid, causing him to sleep for a solid four hours. As he was waking, Gerardo started to engage and converse. It was mostly in Spanish (his first language), laced with songs, peppered with English and fueled with emotion. The attending nurses and I literally jumped for joy as we witnessed Gerardo coming back to this world. The Comeback Kid. When I asked Gerardo whether he remembers any of my words or the words of Monica and Andrew during the time when his brain was leaving us, he said "I remember everything. I remember the favor you asked of me."

As of this writing, UCI Medical Center is working to facilitate a transfer of Gerardo from UCI to UCLA so that the liver transplant specialists at UCLA can potentially broaden the scope of care for Gerardo. It may take a few days before a bed opens up. The thing that could change everything with this plan is if Gerardo stabilizes enough to be discharged back home before a bed opens up at UCLA. A hospital-to hospital transfer doesn't correlate to prioritization of being matched with an organ but the idea of being in closer proximity to the team that conducts transplants feels hopeful. 

When I texted this update to Mike (my friend from junior high & high school) who lives in LA, his response was simple and immediate: "I have a bed ready for you." Reading those words of solid friendship made me shed some beautiful tears. There are other gestures of warmth and love and support and caring from my friends that make me feel gratitude, even in the context of uncertainty. 

So for the rest of December I may be visiting Gerardo at UCLA and either taking up Mike's offer to use his extra bed, or checking into a room at Luskin Center on campus. Or I may be continuing to commute with Gerardo to UCLA appointments from our home. I wonder with hope what kind of update I'll be writing in The New Year. 

For now, please accept a heartfelt Merry Christmas on behalf of Gerardo and me as we wish for you the opportunity to hold beautiful gazes, and to feel deeply, the presence of loved ones. 

Love,
Jenny

PS: The gratitude I feel for all of the doctors and nurses I've met throughout this journey is higher than the highest mountain. I am grateful that these individuals applied their God-given talent to complete medical school or nursing school, studied hard, worked hard, and that every day, they choose to dispense complicated medical interventions while maximizing patient dignity as their day-to-day work. 

8 comments:

  1. Sending love to you, Gerardo, Monica and Andrew as you traverse this journey. Hoping a transplant comes available quickly.

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  2. Prayers and Blessings dear Jenny, Gerardo, Monica and Andrew

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  3. Continue to treasure every moment as you have been. We, who are your extended "family" are supporting you and your family in thought and prayer.

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  4. Our prayers don't cease until Gerardo is able to get his liver transplant and then the prayers will move to support his recovery. God is great and we also have the blessing of the best institutions within our grasp and the miracle of modern medicine. Jenny, I pray for your strength as you're keeping the kids and the world swirling around Gerardo at peace. Sending you hugs and, of course, a strong wish for good news this holiday season.

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  5. My prayers continue to go with you all on this arduous journey.May God go with you and lead the way for a successful transplant.
    Until then sending you a Merry Christmas full of love and hugs to you all.

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  6. Praying for 🙏positivity, wholeness & healing ♥️

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  7. I have followed Gerardo’s story via your posts. You’re always radiant, lovely, so beautifully written. But I always think of how emotionally draining and overwhelming this must be when you’re doing it every day of your life. I sobbed as I read your words about his mental status, as I have recently experienced this awful situation with my husband, but for a different reason. I won’t go into all of it, but he was very suddenly completely unable to speak other than to make sounds. There were moments when I would hold his precious face and he’d look into my soul and I’d be certain he understood me and would act accordingly. He couldn’t and he didn’t. By the time you’re a few decades into this life, we’ve all experienced hardships and trauma, but this was like nothing I’ve ever experienced or even thought of. Jenny, his delirium ( only word I have) lasted a mere 6 days and I still feel shell-shocked. I’m Trying to wrap my arms around you going through this for so long. I just needed to send you as much love as I can via this airspace and to tell you that I’m thinking of your sweet family constantly. Thank you for sharing this and for exhibiting what it truly means to proceed with graceđź’•

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  8. Thank you for sharing some real s#*t. I want to cry with you. Merry Christmas you beautiful super hero.

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