Wednesday, February 16, 2011

Relationships with our Doctors, Nurses, Techs, Nutritionists, Receptionists,...

Brayden has a lot of contacts in the medical world.  Several of whom have been with Brayden from the beginning.  I have come to learn several things when making decisions and dealing with the medical profession.

1.  People have different tastes.  When we first had Brayden, many people were giving us recommendations about doctor offices.  The doctors and offices that they like.  We would go there, sometimes wondering...what did they see in this place?  We have not really had a bad experience with any one's recommendations. 

It is just that like friendships, you click with different people over different things, you see different qualities that be may appealing and some not-so-appealing.  I now take into consideration people's opinions but come to find my own.

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.

6.  Humor.  Jeremy and I can find just about any circumstance amuzing.  We joke about being a high maintenance family.   We joke with the doctors about collecting poop.  Or something on TV or our commute in (stuck in traffic, construction, parade and the Presidential motorcade, driving in and around DC can be entertaining).  We joke with the staff about crazy or funny hospital circumstances (like when the new medical students come on, we have a med student that we will always remember as "Boo", she was seemed so scared all of the time).  We need a doctor that does not find our humor annoying or inappropriate and can chuckle with us at the right times.

Brayden had one doctor who never found us funny, he seemed to just talk right over us.  One time we warned him about how bad the room smelled because of Brayden's diaper.  It smelled so bad that it brought tears to my ears.  The serious doctor came in the room and shut the door.  We suggested that the door be left open, he still closed the door.  A few minutes later, the doctor was getting antsy and rolled back in his chair and opened the door.  Jeremy and I laughed, saying we warned him and that is was amazing such a small body could make such a large stink.  The doctor did not find it humorous and continued on with the appointment.

Finally and most importantly:
7.  Respect and kindness goes a long way.  I was once told a story about a mom whose child had many medical issues.  She was a fiercely protective mom (as we are all in our own way).  Before each hospital stay this mom would bring in their own linens and cleaning supplies.  She would scrub down the room, put on their own linens and even use their own plastic bags.  While I completely understand where this mother is coming from, I am concerned that this is really doing her child a disservice.  Can you imagine the chatter at the nurse's station amongst the hospital staff?  Before even meeting her, the staff could have put her in the crazy category.  The mom cleaning the room, in a way has been disrespectful to the competency of the hospital staff; as if from the get-go the hospital was already doing things all wrong.  If she was that way with the room, can you imagine how she was with the medical care?  Do you think the nurses and techs were drawing straws to see who got that room?

Respect the staff.  They are the ones who help you the most.  Nurses can be your voices to the doctors.  The nurses and tech make or break the quality of your hospital stay and office visits.  We have come to know and like many nurses in the ER or offices.  They help us in so many ways from tracking down doctors and reports to giving the big brothers treats.  Receptionists and front office staff are the gateway to the office.  They spend all day as traffic cops directing and helping to navigate the office, schedules and making appointments.  Showing kindness to them could help you get an appointment, get messages to the nurses and doctors, show grace when you mixed up an appointment time or help you get the needed paperwork in a timely manner.

I was never one to question doctor.  What they said, I did without a second thought.  Now I find that we may disagree with them or not understand them and I am certainly up for asking all kinds of questions.  We can find a way to respect their authority, expertise and experience when we question their assessments and possible decisions.  I may say, "I am not sure I am really understanding, so could you walk me through this."  or "I am not sure that I completely agree, since we have many medical things going on at once, I would like to think about it some more and perhaps talk with another one Brayden's doctors." or simply, "I need time to make sure this the right decision and I am understanding things."  Doctors have gone through many years of school and practice, one cannot negate their findings, even if we may disagree. 

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.


The Henrys said...

This is very well written and covers everything!

One thing that I have the hardest time with is when I have questions and doctors take it as me attacking their orders. It can be hard to find a doctor who appreciates a mother with questions.

Laurie said...

This was a tremendous post, Carrie. A friend of a friend is going through a medical crisis with her son, and I will pass this post along to her as she is navigating some similar waters, including an upcoming transfer to the Mayo Clinic. You are such a talented writer and a truly amazing Mom. I think about you and your family all the time.

Shannon said...

I see Dr. Bader on that list. I like him.

Abby said...

My Gabriel has seen Dr Bader...we really liked him!

Wherever HE Leads We'll Go said...

This is a great list! Thank you so much for sharing.