What do you get when a bride, some school kids, and Superman go on a field trip together? You get an insurance company who denied an MRI, an extensive hearing test that resulted in "no hearing loss", and a mother who now dreads getting "good" news.
Let's start where we left off.
I called a few days after our meeting with Dr Bernes (Tristan's new neurologist) to set up all three tests that he had ordered. We got everything scheduled for October 16, 7 weeks away.
A few weeks pass by, and I learned that Tristan's insurance company had denied his doctor's order for an MRI. My initial reaction was #ofcourse. I mean, they've only denied his helmet, his first round of genetic testing, made it difficult to get his walker, and now his MRI. Why *wouldn't* they deny it? Makes
perfect sense. Every doctor, neighbor, therapist, and dog that I have spoken to about this, are all completely confused as to why they would deny an MRI. Alas, here we are, MRI-less.
Luckily, because we no longer needed to wait 7 weeks to have an MRI done (they were the department that was booked out that far), we were able to move up his BAER (Brainstem Auditory Evoked Response, aka hearing test) and EMG (elecromyagraphy, aka nerve and muscle study) to Wednesday, September 26.
If you look hard enough, you can find a silver lining in every situation.
The scheduling of these two tests all happened so quickly and we only had to wait one week before the new test day arrived. Four hours before his tests, Tristan had his hearing and vision evaluation for preschool. To my delight, Tristan still failed his hearing test.
"Why are you
delighted he failed his hearing test?!!!"
I had been having some dreams the last few weeks where we had been building up to this all-important hearing test that was going to give us answers. We had worked so hard to get to this point, only to have his hearing test come back normal. So it was nice to hear that he was *still* failing, which led me to believe that his BAER would fail as well and we would finally know
why he was continually failing.
We headed to the hospital and got checked in. The testing department we were in had a wonderful play area that Tristan was free to play in while we waited for him to be taken back. It was rough at first, mainly because he had been fasting, and it was now past lunch time. But after resorting to playing Bambi on my phone (his absolute favorite movie), the nurse shortly came up to take him back. They informed me it would be 2-2 1/2 hours until he would be done.
I waited a total of 1 hour and 12 minutes in the waiting room when the audiologist walked out with the results. I knew her test was second, and I was shocked to learn that both tests were completed and Tristan was now in Post-Op waking up. The audiologist and I spoke before the test, and she has seen Tristan in her office twice before and knows his history with failing tests. So when she came to me and said "Tristan passed with flying colors. There is no evidence of hearing loss. He has beautiful brain waves" my jaw literally dropped.
"Wait, what?"
"He is hearing just fine. There was no fluid in his ears, and his brain reacted perfectly to the frequencies both through his ear canal and behind his ear."
I was at a loss for words. This was entirely contradictory to every single hearing test that he had previously had. Something must be wrong with the test.
"So if he's hearing just fine, why isn't he talking? And why has he failed every single hearing test previously?"
"That is something I cannot answer. Is he currently in speech therapy? I would also recommend seeing a developmental pediatrician."
At this point, I was trying to contain the smoke that was about to explode from my ears. Yes, he has been in speech therapy for well over a year.
Once a week.
Every.
Single.
Week.
Not to mention every developmental pediatrician is completely booked up and not currently taking in new patients.
Square one. How
lovely to see you again.
Not only did I hear the worst good news I could, Tristan did not enjoy waking up from anesthesia. I was on the verge of tears while he kicked and screamed and cried and hit. I was barely keeping it together. In my arms, flailing around, was a sweet little boy who, while yes walking on his own, still needed support with walking. He could not communicate very well his needs, dislikes, wants, or frustrations. But every test thus far has shown that there is absolutely nothing wrong.
Nobody can give us an answer as to why this is happening to Tristan.
Nobody on this earth.
A few days later, we hear back from the Neurologist with the results to the EMG.
(I feel at this point, you, reader, should be able to speak the words for me.)
"The test results came back negative and everything is fine."
Currently, I did not have anything else to go off of. My tank was empty. We couldn't get the MRI, unless we wanted to pay $15,000, and there were no other tests that would help us put a name to what Tristan has. Or even just to know what his future is going to look like based on other people who have the same condition.
Do you know how exhausting it is to have people at the store, really old friends who mean well, or the ladies at church ask me if we know what Tristan has? It's exhausting. Because very few people know how to react when I say that we don't know. As much as they try to hide it, there is always a confused, taken aback look on their faces when I tell them that we don't know why he's developmentally delayed and non-verbal and has trouble walking. And it tears down a little piece of my heart every time. It's a double edged sword because I'm glad that people come up and talk with me about Tristan instead of just staring. But it's also hard when they don't know what to say because they are uncomfortable for whatever reason and things get aca-awkward.
It's even more exhausting when I tell some people that I hope his tests *don't* come back normal because I just want SOMETHING to go off of. I just want an answer. And they respond with "But then that would mean that something is wrong." And deep down inside I just want to shake them and say "BUT SOMETHING IS WRONG, CAN'T YOU SEE?! AND NOBODY KNOWS WHAT OR WHY!!!" I want a single test to come back as abnormal so that I know I'm not going crazy and it's not all in my head. And sometimes when people say these things, I feel shame. I feel shame that I am a bad mother because I want a test to come back as positive for something.
Out of my anger and frustration and confusion and every other emotion besides happy, I called Tristan's insurance to find out why they denied the MRI. Much to my surprise and even more confusion, they informed me that it had been approved.
"Say that again?"
"We show that Dr. Bernes called in to do a peer-to-peer review and the procedure is approved until December 23."
I'm not sure to how to describe the feelings that were *continually* going through me at this point. SO many conflicting feelings and emotions.
I was SO very grateful that they finally approved the MRI.
I was so angry that
nobody bothered to let me know.
I was sad that Tristan just went under anesthesia and he would need to go under again in less than a month. What would that do to him? How would he react?
Was his original date for the MRI still in place?
Would we need to wait 6 more weeks?
Seriously. So many conflicting emotions and thoughts.
But, we played it cool. Or at least tried to. Turns out that the MRI was still scheduled for October 16. Turns out there is no scientific proof (according to PCH) that anesthesia given twice with at least 24 hours in-between has any harmful or dangerous side effects. Turns out that I'm
still really good at waiting.
Life continued on. We spent a glorious week in New Mexico visiting my sister during October break. We came home, got readjusted to normal life, and had Tristan's MRI procedure on Tuesday, October 16. The hospital said that we should have the results from his neurologist within 24-48 hours.
It is now Friday, October 19. Over 48 hours later.
Here we are. Still waiting.
