Natalie – Status Update

March 27, 2026

The morning did not start well. At 3:00 in the morning, my phone woke me up. It was Natalie. She was stressed and frustrated. I was struggling to understand her, but the gist I perceived was that she didn't feel her treatment was working. Sadly all I could do was encourage her to go along with the nurse and know she was in the right place.

When we arrived to the hospital, I was a bit disappointed that while Joshua's oxygen input was down, Natalie's was still up at 90%. We spent time with Natalie and her doctor, and there was definite concern that we weren't seeing the progress for Natalie. We went through a round of cough assist and while we were able to get a lot of secretions, it was clear there were many more in her lungs. The decision was made to continue working to attack the secretions aggressively. Through various efforts a lot was brought up, but not nearly enough came out.

The next step for Natalie's care was a bronchostomy. This is a procedure where they put a tube down into the lungs and use suction to pull out the secretions. We were warned it was 50/50 whether she would come through without being intubated. In the end the lungs were cleared, but she did require intubation. When we returned to her room, she was in rough shape, struggling to get the oxygen she needed. Someone had to bag her to keep her oxygen up. Machines were beeping. It was an intense and scary envrionment. As I type this, I still hear the steady beeping. I stepped away from typing this to comfort my daughter. Sue was on one side of her. I took the other side. We played some of her favorite music and spoke with her as we worked to calm her while the doctors and nurses were looking for the right combination of medication to calm her so she could keep her oxygen up while allowing her heart to stop racing.

The day finished with Natalie sleeping comfortably on her stomach. While it took a while and determining the right balance of medications to get her there, it made for a calm and peaceful end to a very stressful day.