We had a pulmonary appointment yesterday where our Pulmonologist stressed the need for a plan for Abby from CHOP. She echoed my frustrations from a medical standpoint. We are really hoping that tomorrow will give us answers, but we have also gotten an appointment for Boston and are pursuing those plans.
We keep detailed data about her oxygen levels, respiratory rates, and necessary interventions. I took it in to our pulm and she was very happy to have it. After examining the data and the trends, she decided that it is best for Abby to be on bipap twice a day during the day. She reiterated the big concern for germs and the danger of her catching even a slight cold. We have decided that Caleb will change his clothes from school as soon as he walks in the door to hopefully keep those school germs out of our house.
So, as we already knew, no school until there are some big improvements. Our pulm also helped us to create a plan for Abby flying to Boston, which is a new issue we didn't think we would face. Changes in altitude and pressure can wreak havoc on kids with respiratory illnesses, but we have a plan to keep her safe.
Please pray for our appointments tomorrow. We are hanging out at the hospital tonight and will head to the hospital first thing in the morning. The bottom line is that we need a plan.
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