04/30/2026
9 years ago today was the last time my son, Sean, was awake. I’m so thankful for Morgan bringing Sean’s friend to the cities that weekend to see him because his final weekend was spent in the company of one of his best friends and it made him so happy to have her there.
A New Journey: Day 56
Road to Re-Transplant: 26
Apr 30, 2017
4,081 days post lung transplant
3,575 days post liver transplant
"Today was a bit of a rocky day. And I don't, yet, feel up to discussing it.
So instead I want to talk about my enormous family ...
My biological family - my mom & dad (Sharon & Pete), my girls (Emma & Sam and their partners and my grandbabies), my sisters (Angela & Rachel and their partners and my nieces and nephew). These people, from the first day Sean was ever sick, have been by my side every moment they can. The concept of having family that doesn't support a person through tough times is something completely foreign to me, because that's not the kind of family I have. They will drop everything at a moment's notice to be here.
My (former) in-laws - from my ex-husband's mom (Joan), to his sister (Joni), Joni's daughters. I continue to get so much love and support from them, not only during times like this but during life in general. I love these people dearly.
My like-family friends - the sisters of my heart. The long-time crew: Gwen and Kelly and Cindy and Laura and Jodi and May and Tonya and Lee (😘). You have all trudged through the best and worst moments of my life with me for so many years. And more recently: Nona and Shelly and Aja and Paula and Alex and Bob. You guys have all been a fabulous part of these years of rebuilding me. I love you all so dearly.
My Histio family - without you all, I would often be lost. I cannot begin to list all of you who have helped to keep me sane so many times.
My vax-fam - it's amazing to me how this advocacy has brought so many of us so close together. I appreciate your friendship every day. Thank you for always being here and helping me make my way through this.
And the man in my world - Morgan. You are my smiles and laughter, my solid rock to keep me strong, and my safe space to cry. I know that I would manage the rough days without you, but I'm so thankful I don't have to.
I cannot adequately express how much all of you mean to me or how much I appreciate you. Please just know that I do and I love you.
🖤🖤💙🖤🖤 🖕🏻 "
*****
[This day I wrote no update on Sean, so I will be writing from memory as best I can, with some info from his daily care notes thrown in.]
Today was the day Sean's fast turn happened.
Morgan and Aja and I were with him at the hospital. About 10am they came to transfer him to his chair. As you can see in the video in the comments, he was pretty out of it.
For the first time ever, he went with no argument.
For the first time ever, he went with no deals to do it later.
For the first time ever, he didn't demand I help. He didn't even seem to notice that I wasn't at his side.
I don't recall how long he sat in the chair, but it did not take long for it to become apparent his PCO2 had again climbed much too high. By mid afternoon he was no longer conscious.
His lung compliance (how well they can expand) had worsened again, so discussions about things to look for or try changing (while we waited on bronch results) took place. He was removed from the Fentanyl PCA he'd had and switched to Dilaudid and put back on Propofol.
That morning, with us and Aja, was the last time he was out of bed, and the last time he was awake. It was the last time I'd see his smile or have him hold my hand.
It was the last time Sean would be Sean.
