Chaia's broviac (her central line) was severed today. Not a huge deal. We just have to have the line removed NOW rather than in February when it was originally slated.
We went to the ER in Columbus to have them remove it as keeping it in like it is brings considerable increase to the risk of infection. After two hours there, they determined that they could fix the tube for us but would not remove the tube (even though it is a basic procedure). Because they didn't put it in, they didn't want to take it out. Liability purposes. So after two hours of pointlessness, we got in the car to drive two hours north to Cleveland.
The whole medical world is broken.
A two and a half year old who has already been through the ringer medically gets shipped a couple hours away, all the while risking infection to a severed, open line. And the only reason for it is that one hospital doesn't want to assume the risk for a procedure done in another hospital.
The oath of doing no harm has become an oath of "do no harm to ourselves". Patient advocacy is not at the center of the healthcare system and because money (both profit and protection from liability) drives the systems, silly things like driving a couple hours to get something emergent addressed, becomes normative.
I don't complain/whine much. Chaia is still here. Doctors can't pinpoint how or why. She is a miracle.
But she has a number of challenges still in front of her. Occupational Therapy. Physical Therapy. Eating. Bone Strength. Meds around the clock. Compensated Heart Failure. Neuro. Cardio. Genetics. The list is long.
And while all of that is to be balanced and managed, which Shaina does an epic job at carrying that load, the frustrating part is that we also have to manage continual insurance disputes and claims, BCMH coverage, bills, prescriptions, etc. Shaina spends at least an hour or two every week on the phone trying to sort through it all.
So to recap. The hospitals are not advocates for the patients they treat.
Insurance companies are not advocates for the clients they serve.
Pharmacies advocate for their cash register as much as they do their patients.
And so a family who has already had quite a journey and has plenty on their plate, has to take up the role of self advocacy because the systems that one would think are present to advocate for the family are actually functioning as anything but advocacy.
Not presenting this to be portrayed as a helpless victim, but wondering out loud how the Church might enter into this issue.
We have the Holy Spirit, who is known as the Advocate. It seems that by nature Advocacy is at the heart of the Jesus people.
So help me think through this...what is the Church doing (besides griping and moaning about the affordable health care act)? What could we be doing? What should we be doing? Dream out loud.