Dermot's home.

Dermot's home! We brought him home this afternoon, he's doing great!

Comments

Post a Comment

Popular posts from this blog

More time.

Image
Stryker. That's the brand of all the hospital beds at Children's Hospitals and Clinics of Minneapolis. I know because that's what I was staring at when the pain and palliative doctor told us we had hours left with Dermot. We had discussed his healthcare directive, how aggressive we wanted his care to be, and what was off the table. The whole time, my gaze was fixed on the bottom of the bed frame. STRYKER. The doctor told us of the insane off-the-chart Procalitonin reading of 143.10, how he and his colleagues had never seen a number so high, and his CRP was 17.02, also off the charts. We discussed our options: do we say goodbye now, or give him  Norepinephrine   to  buy us some time to bring his brothers in to say goodbye? What? What the fuck is happening right now? Is this really happening right now? Wait, this is happening right now.  I thought about the house we're building. We'll have to change the design now, cut out the other half of the house that's dedica...
Read more

Hospital journal

Image
 2:15 a.m. December 8th This is my hospital journal You have been actively dying for almost ten hours. I never imagined it would be this slow. I checked Chat GPT to find out what's happening to your body. It is the slowest shutdown ever. Heart rate is all over the place. O2 is up, down, way down, now back up. 40%? Your breaths are almost ten seconds apart. The death rattle is ever-present. It sounds exactly like when you needed to cough to get your stats up, only now you have lost the ability to swallow. Your body is shutting down. I don't know the order, but I know the heart is the last thing to go. I have such a sense of gratitude for being your mother. So challenging, painful, and genuine. It is impossible for me to pretend to be anyone but myself because of you. These nineteen years have stripped me of pretenses, superficial relationships, and my expectations of who I was supposed to be. You forced me to love before anything else. I loved you through my shame, my fear, and ...
Read more

To give care.

Image
Noelle Jes Jess Mark Melissa Beauty Darci Lydia Lilian Erin Cynthia Zoey Amanda Beth Danny Talila Elin Mauvlette Lauren Kayla Anoma Shafali Duane Ashley Laurie Beth Donna Nicole Cate Brittany Abbey Dee Katie Tuujii Cari Clara April Eileen Emma Evalyne Cassie Isabella Meridith Mike Ashley Esther Elayna Larone Sharo Tonya Anne This is a list of some of Dermot's caregivers over the years. I'm sure I've forgotten some. This list brings up a lot of feelings. Gratitude, anxiety, shame, joy, sadness, longing, exhaustion, anger, frustration, and desperation You see, all of these people have been in and out of my house, all day, every day. They come and go depending on their dedication to their jobs and when the next step on their career ladder is met. Some I knew for years and still stay in touch. Some others show up once or twice, then ghost us, leaving us no explanation for their departure. They see and hear our family's conversations, our arguments, and they hear me when I f...
Read more