Help me with phrases for a meeting with a patient advocate

[Kiara]

That's very calm, and it's perfect.  As someone who works in a roundabout way for a hospital, they honestly MAY feel it's too risky.  However, if they do, what they're supposed to do is tell you so and then let you find another hospital.  Not string you along.  That's just.....GAH.  I'd ask politely and repeatedly if the doctor is uncomfortable performing the surgery.  Have it be your Toots Special.  If they finally say yes (I suspect they might), then you can begin the transfer.

Best of luck.  And *HUGS*

[citadelle]

I think your statement is powerful, clear and appropriate. Good luck to your son, you, and your family.

[Elisabunny]

Just sending my virtual support here.  I too have dealt with doctors that just. won't. listen.

[JacklynHyde]

You have folks all over the place praying for you and the lad.  You know I'm one of them.

[mmswm]

Thank you again. We are going to get a consult with the ortho-oncologist on Monday. He is sort of his own little world separate from both regular ortho and oncology. Even though this is not cancer he is probably the better choice even if we were not having issues. Failing that the next step is the same specialist at the next hospital north then we will branch out to out of state hospitals. Honestly, the more I research this the more I want him transferred to one of three other hospitals in the US that are both more highly ranked and have active research going on with his condition.

Thank you again for your advise. It really helped me stay calm and polite and I think that really helped get things moving in a more positive direction.

[momtwosix]

I hope that the new doctor will be able to help your son. We have been very lucky that our pediatric orthopaedic doctor is also ds's surgeon. He is an amazing doctor and really listens to the parents and patients once the patient is old enough to understand.

[JoyinVirginia]

Glad to hear the discussion went well. I work in health care, and it is well documented and researched, when there is a relatively rare condition, chances of a positive outcome are increased if the care provider has more experience with that rare surgery or condition.
Best wishes!