Santina has been dutifully updating the blog recently, spurring me to want to share perspective. On this, our 44th day in the hospital, a sense of routine, and dare I even say normalcy, has set into our family. We have become extremely efficient in regards to coverage logistics and have even created friendships with both staff and patient families alike. These are both things that I would honestly prefer to avoid, as they are driven by our length of stay.

But one other thing that has grown substantially in these harrowing weeks is our knowledge of medicine and hospital process. What I find most intriguing is the way in which the care team uses the mountain of data available to them. The number of data points is massive, from oxygen levels to respiration rate to heart rate to blood pressure to less common terms like peep, procal, and albumin. Making sense of the information is a skill and art that would take a lifetime to master, and hopefully only four years of medical school to become competent. I do think this intellectual effort is something doctors enjoy and find fulfilling. But in the same vein, it can also lead to frustration when no clear root cause or obvious next step present themselves within Data Mountain. It is this state that Jackson’s doctors are in, some more so than others. After being subjected to a medical arsenal of pokes, prods, scans, and monitors, the underlying driver of his illness is undetermined. The working theory continues to be that respiratory illness is the source and other issues such as sepsis and seizures are derivative from that. I agree with this assessment.

Medical care cannot be limited to merely numbers on a graph. Treating patients by how they look and feel, both physically and emotionally, is equally as important. I feel that Childrens has done an outstanding job in this and am forever grateful to all the nurses and doctors.

Tangentially, I think the skill of making quality decisions based on fuzzy or incomplete data is the single most critical skill in the workforce today. And if you can intertwine this analysis with human compassion, you will be incredibly valuable.

But on a more dour note, when looking at all this data over time, trends become clear and Jackson’s trendline is depressing. The hospital stays are more frequent and longer and the interventions are more numerous and invasive. But trends can be reversed and upticks do bring joy. We will continue to fight for those upticks and stabilize that trendline. And Jackson’s joy and the joy that Jackson brings to others will continue to fill our family’s hearts, and hopefully yours too.

Some throwback photos for enjoyment.