We traveled to the Inhibitor Summit last week in San Francisco. It was probably one of the most stressful trips we have ever been on. “Christian” was having a slight soft tissue bleed in his hand as we were leaving town, our treatment center was not being very helpful, and when we called Friday evening, the doctor on call told my husband, “looks like you all made some bad choices.” You don’t tell that to a family living with a chronic condition, especially during an active bleed while out of town! I took Christian to the ER in San Francisco and 7 hours later was told we were doing the right things. Sunday morning, at breakfast on the bay, we received a call from our dog sitter that my sweet Sheltie, Rosie, died.
Could this trip get any better?
Monday was filled with phone calls to the treatment center for detailed information so that we would file our grievance with the doctor who was out of line and we also made calls to the Denver treatment center for a second opinion.
A very stressful Monday, but what I have learned out of this summit was to not be complacent in the treatment of my Christian’s hemophilia (with an inhibitor). I need a hematologist who knows what they are doing in the area of inhibitors. Being “monitored” by a group of doctors who do not necessarily specialize in inhibitors is not good enough.
I will be the biggest advocate possible for my son. I don’t care what it takes, I will speak up for him and my family and refuse to be treated badly. This doctor will not forget us, because I will make sure he knows that unless he lives with a severe, chronic bleeding disorder, he can never understand how we feel. He can never understand the decisions we make, but he will know that we make the decisions for our child and family that best benefit us as a unified group. We know what is best as parents.
