Update from Boston

May 07, 2026

The last couple of days in Boston were honestly some of the most emotionally difficult yet — but also, in some ways, some of the most meaningful and encouraging we’ve had in a while.

One thing that became very clear when I arrived was how incredibly frustrated Dad has been by not being able to communicate well. He’s awake, alert, thinking clearly, trying to talk constantly, and understands far more than many people probably realize — but with the trach and everything attached to him, getting words out has been extremely difficult. Trying to lip read every sentence while he’s scared, confused, exhausted, and unable to fully express himself has been heartbreaking to watch.

So I made that my main focus.

I spent most of the night researching ICU/speech-language communication methods used for patients who temporarily cannot speak, including evidence-based systems used in critical care settings. I printed a large set of communication boards, charts, emotion scales, yes/no systems, topic guides, and other tools to bring into the hospital.

And honestly… it made a huge difference.

For the first time in a while, we were really able to communicate. Not perfectly — but enough for him to express what he’s feeling, what he’s worried about, what he needs, and what’s going on in his head. We spent most of the day talking, watching a movie, listening to music, and just trying to help him feel less trapped and alone in all of this.

One of the biggest things weighing on him was worrying about my Mom and not understanding why she hadn’t been there. He knows her too well to believe she would stay away voluntarily. After talking it through carefully with family and the social worker, I decided it was best to tell him the truth — that she injured her back badly and physically cannot be there right now, but that she’s okay and healing. We FaceTimed her together afterward, and it clearly relieved a huge amount of fear and uncertainty for him.

He’s still processing a tremendous amount emotionally. From his perspective, he went into surgery expecting the “normal” recovery path we had all hoped for. Meanwhile, the family and medical team have spent the last three months learning and adapting in real time while he’s been sedated, critically ill, and unable to fully participate in everything happening around him. So now that he’s more awake and aware, there’s naturally a lot of confusion, fear, sadness, frustration, and emotional catching up happening.

But despite all of that, there were also some very encouraging steps.

Yesterday he was doing almost all of the breathing work himself, with very minimal support from both the ventilator and ECMO. The team is intentionally being cautious and not rushing anything, which I completely support, because after everything he’s been through the goal is stability and long-term success — not moving too fast and risking setbacks. But overall, the trajectory is once again moving back toward rehab and recovery, which is a huge step in the right direction.

I also specifically asked the team to prioritize communication and quality of life as part of his recovery plan, not just survival metrics and lab numbers. They are hopeful that if things continue progressing well, they may be able to trial a speaking valve in the coming days once he’s ready and able to tolerate it safely.

One moment that will stay with me forever happened when I was supposed to leave for my flight home last night. Normally Dad would always tell me to go home, get rest, be with my wife and kids, not worry about him. But this time, when I started getting ready to leave, he became very emotional and clearly did not want me to go. I asked him directly if he wanted me to stay, and he nodded yes immediately with tears in his eyes. So I skipped my flight, stayed the night, and spent more time with him before driving back this morning in a rental car.

He still has a very long road ahead. This is absolutely not over. But for the first time in a while, I truly felt like I was able to help him emotionally and mentally in a meaningful way — not just medically.

Thank you again to everyone continuing to pray for him, support our family, and check in on us. I especially want to thank everyone who has helped by donating and sharing the posts as that’s what has allowed me to be there like I was yesterday and I hope this update helps to show how truly meaningful that has been. It means more than I will ever be able to properly express. I am eternally grateful. Truly. 💙

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