Do Your Job!
On December 15th, Dan and I decided another MRI was in order. The Neurologist told us to think about it when we left his clinic since he wasn’t overly impressed with the quality of the first one. Although our initial response was no, I started to lose sleep about not having a good baseline picture of Caleb’s brain. In turned out to be a timely decision as the next day we visited Hematology to discuss the possibility of blood disorders causing the brain damage. The Hematologist ordered an MRV (blood flow imaging) and an MRA (blood vessel imaging) along with genetic testing (prior authorization by insurance required) and other blood work. We walked into this appointment prepared for many blood draws on Caleb, but since he will be sedated for the MRI/MRV/MRA, we can kill many birds with one stone. We walked out of there feeling like we nearly won the lottery. We did not in fact have to witness the poking and prodding on our dear little Caleb.
After many, many attempts to get all of these tests done before I came back to work, I had to accept that it couldn’t happen. January 24th was the date I was given. When I asked how I could get on their cancellation list, they told me no such thing existed and I should call every morning if I wanted to take a cancelled appointment. I think they didn’t expect me to be so diligent, but of course I was relentless, I called every morning until I went back to work. I was able to get it moved up to January 13th, but that was the best I could do.
Frustration #1
Yesterday, I receive a call from the Sedation Nurse with instructions for our appointment on January 13th. She happened to be a nice woman that seemed to really take interest in Caleb’s situation and started asking me questions even after she had communicated the instructions. Through this conversation we realize that Caleb is scheduled for his MRI in Minneapolis, where they only have a 1.5 Tesla machine. His Neurologist ordered an MRI on a 3.0 Tesla machine, that they only have in St. Paul. I’m not sure that nice woman liked me quite as much by the end of our conversation. I’m sent to scheduling where I voice my unhappiness and wait for them to call me back.
I’m frustrated that we have to be rescheduled, but I got over that, or I can get over that. What doesn’t sit with me well is that had the sedation nurse not asked me questions she really didn’t need to ask and if I was not educated on the type of machine that needed to be used, we never would have caught this and Caleb would have been put through an unnecessary and very expensive procedure.
Frustration #2
I also remember I haven’t received the prior authorization confirmation in the mail from my insurance provider resulting in this order of operation (note my voice grows in tone and anger with each call):
Call Hematology to ask if they have received the authorization of which they respond no.
Call my insurance provider to be told they haven’t even received a request for the authorization.
Call Hematology back to raise hell and ask how this has happened.
I was assured on December 16th that the prior auth would be sent before the end of the day in hopes of getting all of this done before I go back to work. It had been 3 weeks and they hadn’t even touched it. They then proceed to tell me it takes “quite a while” to get authorized once it is sent even after I remind them this is their fault.
Frustration #3
I also remember that no one has mentioned anything about doing the blood work during this sedation. I express my concern with the operator and after being routed around to many different people, I end up talking to someone in lab. They tell me that the orders are there for the lab work, but if I don’t tell them when I check in for the MRI, they will never know this needs to be done and it would be missed.
I lost it.
Why is no one doing their job? Why am I having to follow up on everything only to catch mistakes? What about the people that can’t or don’t pour their heart into making sure all the dots are connected? Why do I have to get so emotional (read yell and cry) at people just to get what Caleb needs?
There are many broken aspects of our healthcare system. Once I have Caleb on a steady ground, I would love to find a way to help other families and parents coordinate care for a loved one. It takes time, it takes intellect and it takes persistence. It is nearly impossible to find all three of those in today’s day and age, but I feel passionate about finding a way.
I feel especially happy to have time with my babies this weekend after my week back at work. It was a short week and my days weren’t long, and it was still hard.
My prayer requests today are not for Caleb, but rather for our healthcare system and the people that are accountable for making it successful.
I can’t end a post without a picture. Brotherly love…..eggs and popsicles (yes, it is below zero and we are having popsicles).
