Saturday, October 8, 2011


Since it seems that I have been in the midst of some interesting and very important issues in my children's lives the last couple of months I thought I would write about another misconception that seems to be raring its ugly head.

Advocating is complaining

I felt the wrath of this misconception shortly after Makenzie's accident. The doctor who was in charge of the PICU where Makenzie was being treated decided that less then a week after her accident and 24 hours of her breathing tube being removed that Makenzie needed a permanent breathing and feeding tube. At this point Makenzie was not eating but she was breathing. I didn't think she needed a Trachea and I was not ready for anything more then the NG tube.

So I made a call to her pediatrician and for the first time on this journey took the first major leap into the world of advocating for my child. As I made my way back up to my daughters room I prepared to tell the doctor that we were not going to do either procedure and that we also wanted to be transferred to a different hospital for a second opinion. Shortly after I settled in next to Makenzie the doctor walked in. We had a very interesting conversation but I left feeling like he thought I was complaining about the care my daughter had received. His ego was very crushed but Makenzie was transferred within 6 hours and she never did end up needing a breathing tube. I could have been wrong but I was not going to put my child through a procedure she didn't need and it sure had nothing to do with complaining.

Advocating is not complaining!

I have made many calls to the patient representative office in the last 4 years. A couple of examples would be........ The night I was told that the ED could not replace Makenzie J tube for 3 days because it was the weekend and no one from IR was in. They told me instead that I needed to come into the ED to have IV fluids pushed from Friday evening until Monday morning when radiology was in instead of taking care of the 10 minute procedure that evening and letting us head home. Needless to say IR came in that night and were were back at home a couple hours later.

or maybe the time I was told the only way for Makenzie to have J tube to help her vomiting was another surgery with a new stoma (hole) on the other side of her stomach with a feeding tube placed directly into her intestines. I did some research on that one to find out that there was such thing as a GJ tube that went into her current stoma and through her stomach and into the intestines. Hmmmmmm

how about the time that no one in the hospital knew where I was supposed to go for a swallow study and by the time I finally figured it out they had cancelled the appointment. Yep.... that was another trip to the patient rep office and our appointment being held an hour later.

More recently reporting a surgeon who told me that he would do what ever I wanted him to do even if it was the wrong thing to do when I had questions about a procedure just so I would stop holding his OR up.

Or maybe discussing a situation in which my son was under served, misdiagnosed, and suffered an infection that could have taken his life.

I could go on and on but I think you get the point.

However yesterday I received a call from the head of risk management at the hospital. The hospital is still claiming that even though Mr 10 had EVERY single symptom of Appendicitis and is the highs risk category for this issue, they are not at fault and did everything they should have done. (which by the way was nothing) I am still not buying it.

We talked for a while about many issues and I told her that there were many times in the last 4 years that I have not walked into the hospital without stopping by the Patients Representative's office before walking out.

Her response to my statement made me sob right then and there. She kindly told me that because I have brought our issues to the hospital's attention so many times that I now have a reputation as being a complainer.

Once I pulled myself together I politely asked what she would have me do when my children receive less then quality care from their hospital because rolling over and just taking it is not an option for me. She did not respond. I had to ask her 2 more times before she gave me her direct number and told me to call her if I had any more issues.

Advocating is NOT complaining. Advocating is expecting fair and quality care, treatment, services, and, education for our families. I will not roll over and just take it.....and this is why........

Believe... Prayer Works!


The Henrys said...

That's right, your kids are worth it, even the reputation of being a complainer.

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