Monday, January 27, 2014

Monday Adventures

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.


Kwolfinger said...

I know this is really radical but...depending on our government in our times of need is where the whole system has gone wrong. The fact that we have to depend on Healthcare, now provided by our corrupt government is wrong. And what about when you are out of a job,who do we turn to? If we, as Christians did what we were called to, we would rely on each other, through God's provision. But we have failed each other and have chosen to trust a system. I don't have a realistic solution, only an observation. Sorry... Praying for your family.

Cindy Penrod said...

I am with you, Kaye. Many of us who follow Christ and are in the healthcare field are trying to bring light into our 'corner', but so much imbalance requires so much repair. I get frustrated, not only as a consumer, but as a nurse. I don't know that there is any one 'plan', but I do believe that as the Church, we need to seriously re-think this thing. I can orchestrate many beef/noodle and spaghetti dinners to raise funds to help cover medical bills, but fixing the system?? Not sure how to begin. May God direct our thoughts and give us the courage to act. I'm in.

Mama Karen said...

Praying for your sweet Chaia! I hate that you have to be pushed from pillar to post just to get help. But this I one thing I know, God is still in control of everything and I know in my heart that Chaia will continue to astound the doctors with her miracle life. I love your little munchkin! As for what can the church do...we better get on our knees more to pray for America to come back to God. God has blessed America because God's people have kept him Lord of their lives. We are so far from that. I feel like we are living "as it was in the days of Noah"....God help us!

Nicola Harvey said...

In the UK many years ago hospitals and schools were started by Christians. Can the same not happen today? What would stop a Christian medical team of doctors and nurses, alongside a Christian Trust Fund manager, developing a small self run hospital? You would need to have all professional places filled by Christians with good business sense. I may be just a housewife but I don't see why it couldn't be done. We have just spent hundreds of thousands on a new church building so the money is around!!That would be my dream.....