Luke and OSF

As documented in previous posts, our four year old son Luke has been intermittently urinating blood. With a sonogram, we found that he has a large kidney stone in his right kidney. The stone needs to be removed to protect his right kidney function and to protect him from infection that could occur with an obstructed kidney.

Today (7/20/2007) I called the pediatric urology office at OSF-Children’s Hospital of Illinois (CHOI) and told the office nurse that after much thought we have decided not to have Luke treated at OSF-CHOI. We arrived at this decision based on the following:

Luke has been on antibiotics daily for about two months. It has been approximately seven weeks since Luke was first evaluated by a pediatric urologist and it has been five weeks since he underwent a general anesthetic in the operating room at OSF to look at his kidney anatomy.

Since Luke’s general anesthetic and procedure five weeks ago, no meetings have been arranged to discuss options to remove his kidney stone. My wife and I have been to the pediatric urology office or contacted the office six times.

Why has there been such a delay? Why have their been no formal discussions regarding treatment options with the physicians that need to be involved in removing the kidney stone?

When I talked to an employee of CHOI and described the above time scenario to this person, he replied that he would be “concerned” if Luke were his child.

I am “concerned” also and do not feel our son has been treated appropriately by CHOI. Several years ago my Haitian Hearts patient’s cardiac surgeries were delayed, so this is nothing new to me.

If OSF were asked about the delay, I would think OSF and their attorney would have well thought out reasons why Luke has not been treated.

What happened to Luke is disappointing but not surprising. The Community Advisory Board at OSF is unaware of Luke's situation, but what would they do if they knew? What did this Advisory Board do to prevent the deaths of Haitian children denied care at OSF?

What about the Pediatric Resource Center at OSF? Would they intervene to help kids marginalized by OSF? My e mails to OSF are blocked.

Also, based on my past experiences, there is not an impartial ethics committee at OSF or in the Catholic Diocese of Peoria to present this problem. All of my ethics consults at OSF over the past six years have been ignored. When I told Monsignor Rohlfs about a Haitian Hearts baby that suffered an outpatient arrest before his cardiac surgery, Rohlf's reply was, "Let me know if it happens again." Our family has no one to go to.

There is no real self accountability at OSF or at the Diocesan level.

When I spoke with the nurse in the office today, I reiterated to her that it was not her fault that Luke did not receive appropriate care. I told her that I thought OSF-SFMC, the largest hospital in downstate Illinois, had 5,000 good employees, and that the real problem with OSF is their leadership.

Until these leaders are replaced with Catholic hospital leaders that are encouraged by an unafraid Bishop Jenky to respect and follow the Ethical and Religious Directives for Health Care at OSF, nothing will change.