MRI frustration

Part of Amaya's treatment plan was to get an MRI of her left knee. Dr.Nelson wrote he wanted to "evaluate the TTTG and evaluate knee cartilage." I had no idea what it meant when they said, "evaluate the TTTG" so I had to look it up. TT-TG stands for tibial tuberosity-trochlear groove distance. One of the things they look for is to see if there's patella joint instability and how much. Dr. Nelson wanted to have this done so he would know how to treat her knee pain especially after her internal fixator is removed (a year after it is installed, so sometime in January 2023).

The MRI was ordered on October 14th  and we didn't get it until December 21st. Over ten weeks! Ah! Just typing that is unbelievable! The process was incredibly frustrating, time consuming, exhausting, emotional  and at times out right overwhelming. I ended several calls in tears, sometimes out of frustration, sometimes out of anger. 

I wanted to update on the process during that time while I waited but I didn't want to type it until the MRI was scheduled or done. I felt that typing it while waiting was like giving up or just complaining. I wanted so much to be able to post good news. I had no idea it would take that long to get the order to be transferred, to be made an external transfer, to get insurance approval, to get the order and insurance approval to be made an external order, and then scheduled. Even now I don't fully understand the process. 

I expected some bumps since we got the order at her children's hospital in Southern California and we live in Northern California. But I was hopeful since we pay for the higher PPO plan. I could not have imagined that it would be so difficult and challenging. I felt like I was jumping hoops and as I did new hoops were added, moved away and then set on fire. 

Knowing Amaya needed it, knowing we had a time crunch (she can't get an MRI when she has her internal fixator implanted, so we had until January), and knowing she was in pain added to my stress. It is painful to know your child is in pain, especially frequent pain. There are few things I can do to actually help alleviate her pain. And when there is something that I can do to help her I try my hardest to do it. When I'm met with obstacles and resistance well that makes no sense and is incredibly frustrating. 

Along the journey I made several friends who helped me. People who were just "doing their job" not realizing that they were also alleviating my stress, helping me carry this burden and advocating for me and Amaya. I am incredibly grateful to them all. I'm also grateful for sweet Amaya who would often thank me for my efforts and encourage me. I shared updates with her but tried to not let her know how painful and overwhelming it was. Trying to find the balance between informing her without giving her more to worry about. Thankfully I have a wonderful crew of friends (TNC) I can rely on to vent to, who were frustrated on my behalf, who let me cry and share and kept me going. Thank you all.

To all the other parents out there trying to deal with multiple locations and insurance companies, waiting for approvals and fighting for appeals I send my deepest empathy and love to you. It's a tough road we are on. Feel free to reach out if you need to vent.