I can’t tell you how many times, as the mother of a child with complex health needs, I have uttered those words to myself.
Not done with Apollo and not done with his complex health issues, but done with the twisted, often inefficient bureaucracy of health care.
Yesterday I fielded a handful of calls from Seattle Children’s hospital. The first one was to cancel Apollo’s appointment with his GI doctor. I made this appointment (weeks ago) so the doc could look at the scar tissue around Apollo’s stoma. It is thick and causes his g-tube to hang out of his stomach at an angle. The friction then causes irritation and sometimes bleeding. The receptionist told me they were canceling his appointment because he needed to see a general surgeon instead…
So I called and made an appointment with the general surgeon for Friday morning…and then called the GI nurse (the same nurse who we have been working with since his g-tube was placed). I wanted to know why he no longer needed to see Dr. F (and who exactly was deciding if he needed surgery or not). The nurse informed me that Dr. F just takes care of GI issues, and this wasn’t a GI issue…which begs the question of who then is in charge of the Apollo’s g-tube? Since Apollo’s appointment with his GI doc is now cancelled, I told his nurse what happened on Friday when the resident removed the water from his tube and it fell out– necessitating a trip the to Children’s ER. She informed me that removing that small amount of water could not possibly have made it fall out…and I insisted that it had. I told her that in over two years of having the tube it had never just randomly fallen out.
And there our conversation ended in a stalemate. All I want if for them to admit a mistake was made (removing the water and causing the tube to fall out) and an apology. An apology for making Apollo suffer more pain and more trauma. You what else would be nice? Letting the resident know, so he doesn’t make that mistake again.
But it won’t.
And that’s why I want to quit. Quit dealing with half a dozen doctors that never talk to each other. Quit dealing with medical bureaucracy. Quit dealing with medical professionals that don’t listen to me. That don’t think I can be knowledgeable and informed. Quit having my son suffer more than he needs to.
But I can’t. I can’t because my son wouldn’t be alive today without advanced medical care. I have a son with complex health needs that are not going to go away. And I fear that the ridiculousness that is our current state of medical care isn’t going away either. I don’t have the answers. I am just a mom with a complex child. But something needs to be done. Something needs to change.