Our sons protocol letters have a section on post emergency management that says: Child unable to take/maintain PO intake: Start or continue 10%glucose continuous infusion at 1.5x maintenance.
What I've learned is that the doctors expect me to be the judge of PO intake. Though they give advice about when to decrease the I.V. they now actually ask us to assess our son's condition and make the final choice on turning off the I.V. and even when we feel confident enough about his blood sugars to take him home.
Sometimes I want to scream, "I Don't Have A Medical Degree, Why Are You Asking Me?"
Although hospital time is wonky, you have to keep track of it in order to keep up with your child's care. We asked to stay in the E.R. observation room for 2 1/2 days because that was the only way I could have both the boys in the same room. The observation rooms don't have windows. Talk about a quick way to mess up your body clock.
After 2 1/2 days in a room with a 3 and 4 year old, no sleep, no windows and a diet of chocolate and caffeine I had a hard time remembering when anything had happened. I had not been writing things down because of the sheer circus of having two boys with metabolic crises at the same time.
Later in the week I found myself having to depend on others when answering doctors questions about the time-line of the boys' illness. This is not a good place to be. It's also frustrating because now I don't have a record of how the boys blood sugars ran over the week- information that might have been useful for comparison in future illnesses.
Which leads me to an axiom: In the hospital your child's care is your responsibility- not the staffs. We go to a great children's hospital. They have literally saved our children's lives multiple times. Yet every time we are there it is impressed upon me anew that it is a parent's job to advocate for their child, watch over their child, and to coordinate care.
When your child has a rare disorder this home grown advocacy is especially true. Exhausting, but true.