With my three older children I visit their respective pediatricians one to three times a year and once a year my son has a routine cardiologist appointment. There has never been an issue with either of them (thankfully) that couldn't be handled by the after hours on call doctor or couldn't wait for regular office hours. I do not have e-mail access nor private phone numbers for them, but that is okay because I do not need this type of special access. Then there is the Sonze. I have emails, cell phone numbers, direct office lines, etc to all of her practitioners. As a daughter of a medical doctor, I do my best to respect that all of her doctors have families and lives outside of their offices, but as a mother of a medically complex child I find myself worrying that I am crossing the line.
I realize I have this access because I am trusted to not abuse the honor and I really do my best not to, but sometimes I wonder if my emails of "urgency" are overstepping the privileges I have been given. I wonder if I am being too annoying. I worry that when my email pops up in their inbox at all hours of the day that they roll their eyes or think about "kicking me off of the team". It is another dilemma I find myself in learning how to maneuver through this special needs parenting world.
Yet here I am at home with little bear and she is in pain. Pain that I know is related to her GI discomforts, but yet we don't know why it is occurring. Her crying ebbs and flows, and she has moments of smiles and joy and then immediately they turn to screams of pain. The screaming can last four hours on end and the only thing I can do is send an email or a text begging for help. They always offer suggestions and a plan, and I am appreciative her team ALWAYS replies no matter the day or time, I just hope I am not overstepping any boundaries.
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