Wednesday, February 16, 2011
Relationships with our Doctors, Nurses, Techs, Nutritionists, Receptionists,...
2. The right fit. I need doctors that hear me and I hear them, not an uncommon characteristic for finding a good fit. But to me it is more than that. Some offices are more conventional...let's call them well seasoned. They have seen thousands of patients, they know what works and that is what they have come to rely on, they go by the book, kind of old school. Then there are some that think a bit newer, fresher, more out of the box, doing research looking for new ideas, collaborating with other medical professionals. We have often heard this, "I was looking up some information and found that we could possibly try..." I prefer the out of the box thinking (but not too far out of the box, we are not hiking the rain forest for alternative medicine). Brayden has all kinds of random, seemingly unrelated things going on, so we need people to realize that he does not fit the typical protocols.
3. Accessible. Offices that have staff who answer phones, emails, etc in a timely manner and are helpful. Brayden has several people that we communicate his medical needs over email. If that does not work then over the phone. We have have a few direct office lines (instead of navigating the web of options). Then we have the personal cell phone of one (she was crazy to give us that). It is incredibly frustrating to put in a call to a doctor's office and hear nothing back. We have one office that calls to at least say, "This is the nurse, I have given your message to the doctor but he is on hospital rounds so he will have to get back to you later." We just want to know we have been heard and will hear back.
4. Going outside the speciality. Since Brayden medical file does not fit into one office, we need those offices to communicate with each other. Many speciality offices have a difficult time crossing over into another speciality. Some seem to gasp at the thought! If I could I would set up team meetings for a round table discussion...
5. I am the mom, not the doctor. I remind the offices of that. I let them know what we see at home, our assessment of things. I need the doctors to explain things to me in great detail and I often have them write down key terms and info so that I can process it all later. Many times I may say, "As his mom, I am freaking out over this. Tell me if I should or should not be and why." I am his mom, I get to see Brayden day in and day out. The doctors get only minutes. Share with the doctors concerns as a mom, not trying to be a pseudo medical expert.
Or if the receptionist calls to schedule an important appointment and I tell her no (because one of the other boys has something planned) do not lecture me about how busy the schedule is...I am a mom to two other precious boys too.
Brayden's medical world is not perfect. We have many days of the week feeling frustrated, sometimes misunderstood. We have certainly switched doctors a couple of times. We try our best to communicate with the doctors and offices to get Brayden excellent care. Sometimes it works and sometimes it does not. We just try to find and pray for what works best for Brayden.