Back to School

Yesterday was Back to School Day. We were bombarded with instruction from various nurses and technicians from morning to mid-afternoon. As part of our "progress board" we have to show proficiency in various aspects of Declan's care. We began with an introduction of his oxygen saturation monitor. The device tracks his oxygen saturation and heart rate. Something we'll have to monitor daily. Additionally we received training on his feeding tube: how to flush the lines, and set the computer for the correct amounts and duration. Felt fairly manageable if we never had to leave the house; but daunting to think about taking him anywhere. "Well" the nurse said, "you'll have a backpack you can keep the monitors and feed bags in if you're traveling."  That sounds exciting.  Left me feeling a bit overwhelmed.

The day wouldn't be complete without our daily medicine quiz to test our knowledge of what feels like his ever-growing list of medication (usage for each one, dosage, and how to administer them.) Also met with the Cardiology Nurse who will be our primary contact during our weekly visits. She taught us about various warning signs to watch for, that might dictate either an immediate visit to her team versus a call to the ambulance.. That part was a little unnerving thinking about how often we'll have to make that decision. But overall we are feeling better about things. Although Declan's weight has been about flat, his feeding has improved slightly. So although they are definitely baby steps forward, they are at lest steps forward.
Also, we finally got a shot without tubes because he was in between a new feeding tube insertion.