Ryan’s day will begin shortly. I will get him up after his percussion therapy (we have a bed that does this) is complete. Percussion therapy is performed four times a day to mobilize secretions in his lungs.
His night was peaceful, unlike the previous two. My best overall measurement of how he’s doing is his heart rate. He stayed in the mid-60’s all night. A good night.
Yesterday’s issues really didn’t completely subside until early evening. After the morning’s high body temperature, Ryan was digesting food/liquid extremely slowly.
Throughout the day, like every day, I perform a task called “checking gastric residual“. This measures the undigested volume being held in his stomach. Mostly it’s undigested food and liquid, although does contain some stomach acid. This process involves manually (no pump) suctioning gastric content (from the stomach) back through the g-tube (feeding tube), measuring it, then returning it to the stomach. A nice little side benefit from doing this is it releases any air pockets formed his stomach.
The average human stomach has a maximum volume of around 1,000 ml (or 1 liter). For Ryan, we are careful to never allow him to exceed 300 ml at any time. This is preventative in an effort to reduce the risk of aspiration. So, before we ever give him anything in the g-tube we always check residual.
Too boring? I was hoping it might help the readers better understand some of the complexities in managing Ryan’s well-being. There is, literally, no room for error. One oversight can have devastating outcomes.
A reader commented that it feels like we can never leave our guard down. This is very insightful. It’s true. We are meticulous on gathering hard data (heart rate, oxygen saturation, body temperature, residual, urine output, etc.) and other indications (skin color, eye redness, coughing, bowel characteristics, urine characteristics, body tone/posture, vocal clues, lung sounds, bowel sounds, etc.) to arrive at a determination of Ryan’s health at that moment and how it fits into an overall trend. Essentially, we assess how close he is to his baseline.
One thing I’ve learned with Ryan — as I can best describe it — is his response to treatment is like driving on an icy road. If we over-correct, he’ll be heading uncontrollably in the opposite direction. We need to ease manage this with a degree of instinctive precision. For example, when he spiked high fevers the past two days, it was best to attack it hard at first (ice, fan, undress, etc). But the instant he showed signs of recovering it was best to begin thinking about hypothermia. Sure, I want his temperature to return to normal, but I must be patient. Being too aggressive will assure him layered in heated blankets afterwards. Warm him too quickly and we’ll be icing him down. It’s scary.
Okay. Here we go. Hoping for a better day.