July 2, 2025 – Getting Through the Stick
We arrived with 15 minutes to spare before his appointment and made our way into the new-to-us infusion center. I met Nate, the scheduling nurse, who had been so helpful on the phone getting our appointments all on the calendar. Within a few minutes, we were escorted through the doorway into the infusion room.
This clinic was set up differently than the one at OU in Oklahoma City. That one had private, three-sided rooms for each patient, with curtains that could be pulled across the front—pretty private if needed or wanted.
Here, the layout was more open. Stalls were divided by portable panels, and the ones opposite each other faced one another with no curtains. If you stood up, you could see just about everyone in the room. Of the thirty to thirty-five cubicles, each had just enough space for a comfortable recliner for the patient, a padded chair for the one allowed visitor, and the IV machine—plugged in, but also portable.
We got settled in our cubicle with Osiyyah in the cozy recliner chair and me in the visitor’s chair beside him. The nurse’s assistant—a tall, brownish-haired man—brought him a blanket and offered him a drink. I wasn’t sure what the nurses were thinking at that moment, or if they had ever worked with a patient with DSRD. But they were about to meet a scared cub… and his mama.
The male nurse pulled up a chair and made small talk as he checked Osiyyah’s right arm—pressing gently on the veins that were just beginning to show a tad under the tension of the elastic band on his upper arm. I sat there silently, hoping this IV stick would go smoothly. In the past, his sister and I—or one time his brother-in-law and I—would help by holding his hands and keeping his arm steady. This time, it was just me and the nurse. As expected, Osiyyah flinched and pulled his arm back. The nurse looked up, surprised. I found myself trying to explain gently that we’d need to hold his arm steady—that once the needle was in, he usually settled and sat calmly. His primary RN walked up, and a second, feeble attempt was made. The assistant nurse muttered something about not wanting to poke him in the wrong spot or stab his own hand. Then they both stood up and said they would have to make a call to someone higher up.
So I sat there, my mind racing all over the place: We are not leaving. Why didn’t they try harder? Can’t they be more firm? Let me talk to whoever’s in charge.
But I stayed quiet. I waited.
After a while, Amanda—the nurse—came back with a small can of soda and a pack of peanut butter crackers, trying to ease the nerves of a very tense and resistant patient. My guess is someone above her told her to try calming him down first. I had just given him his dose of Ativan, hoping it would help him relax a little. Amanda agreed to wait and see if that would help to calm him a little.
Still, I knew what was coming. If history repeated itself, we’d need more hands—more calm strength to hold his hands and arms still.
I decided I should try to talk to Amanda, so I took a moment to talk to her and explain a little bit more about his condition: the agitation that comes with this illness, how it’s not just behavioral, and that having four of us would be best. She was kind and receptive, and by the end of his visit, she was writing down information and said she planned to do more of her own research.
Back to the IV placement.
Amanda came and had 2 nurses with her – the original male nurse and another very smiley and happy woman RN. This time the male nurse gently slid the chair out a little bit and took a position behind Osiyyah. The other nurse came to the same side as me, and we exchanged a quiet smile as we each took hold of one of his hands and his free arm —gently, but firmly in our grasp.
He immediately began saying “No,” started to cry, and made a small scene—even though the needle hadn’t even touched his skin yet.
Amanda took a breath and with one smooth poke, the IV was in place.
As she stood up and turned away, I caught a glimpse of her face—and noticed a small tear running down her cheek. The other female RN, gave her a gentle shoulder tap and smiled at her. In that moment, I felt an unexpected bond with her. That single tear told me everything: she saw him, and she felt the struggle he was having.
Twenty minutes later, Amanda returned with his just delivered IVIG bag—Intravenous Immunoglobulin. Fancy words for pooled antibodies derived from the plasma of healthy blood donors. She set the drip rate according to the instructions I carry with me and ask all his nurses to follow.
As she was doing so, I showed her the book I was nearly finished with—Brain on Fire by Susannah Cahalan. It is a memoir detailing Susannah’s battle with a rare and aggressive form of Autoimmune Encephalitis. The book goes into greater details than the movie of the same name, but both are worth the time.
Five hours later, we were done—heading to our friends’ house nearby for the evening and night.