I don't wanna go!
I'm waiting on my husband to get home, then the three of us, husband, daughter and I are off on a 3 hour drive to lovely Detroit. I don't wanna go.
A little background... my daughter was born with a rare metabolic disorder called Maple Syrup Urine Disease.
It was diagnosed through newborn screening. From when she was a week old to about a year ago, her specialized care was through a clinic at U of Michigan. She had the same neurologist, same dietitians, for 7 years of her life, and they literally saved her life more than once. I totally trusted and liked them, and we had a very good relationship.
In comes the mighty state of Michigan... because of money, and basic governmental bullshit, they decided to change EVERYTHING. They decide that all patients who are seen for diseases caught by newborn screening have to go to a clinic at Detroit Children's Hospital. All new doctors, staff, everything. And they haven't been treating MSUD patients as long as the previous doctor.
Could we still go to the doctors at U of M? Sure... but the state wouldn't provide the medical formula that my daughter needs to live if we do. And that would be 1/5th of our income!
So...I'm begrudingly making the trek down to a hospital I've never visited, to see doctors I don't know, and somehow trust them to know what's best for my daughter.
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