I used to say, "Life with Ivey is a rollercoaster ride." Scratch that. It's nosediving in an airplane where she pulls up on the controls in the last second just before crashing.
We have updated information on Ivey's hearing. I have been in a state of joy and confusion. Results from the November MRI and ABR are in.
To recap, the MRI was looking for any structural quirks to the temporal regions in the skull/brain directed to hearing and the ABR was to see if there was any further changes to Ivey's hearing. The MRI showed no new changes to the regions of the skull/brain, all is as it has been. Still microcephalic, agenesis to the corpus callosum, and structural deformities to small bones that help conduct hearing. And, everything still looks good from the cranial vault many years ago.
As for the ABR, there is good news. It seems that the November ABR was consistent with past ABR's, with the exception of the August ABR. This means, Ivey's hearing loss has not progressed, it is stable. That is GREAT news. It seems her hearing is stable at a moderate loss. It is not severe as indicated by the August ABR.
I have aged 5 years in the pasts 3 months. I have cried, ugly cried, an ocean worth of tears. Literally. It has taken me a couple of weeks to write this update. My mind took that long to rationalize the information and I crashed in the aftermath of crisis being averted. But what a wonderful Christmas gift.
So here is the thing that is seems to have happened during the August ABR. Mommas, if your kiddo ever needs an ABR, be aware of the following.
It took the audiologist just shy of an hour to go over the following so I'm condensing information significantly. It's just crazy. Since the November ABR, I haven't read this many case studies and medical journal entries since college. My head hurts.
Remember an ABR (Auditory Brain Response) tests auditory neural pathways to the brain. The audiologist reads the brainwaves in response to an auditory stimulus. There is a study out of Vanderbilt that has indicated that anesthesia can alter ABR results. The study compared ABR results after using sevoflurane and propofol. Sevoflurane is used for procedures under general anesthesia. Sevo is a neuro inhibitor. Therefore, sevo can suppress the neurological pathways during an ABR and produce "false" test results. Propofol is also an anesthesia used under deep sedation and is not linked as a neuro suppressor. Therefore, it is not affecting ABR test results. Please read more on this, I'm watering the information down to its most simplistic form.
It seems that August was the perfect storm for Ivey. She went under general anesthesia due to surgical procedures. Sevo was used. Plus, t-tube were replaced in her ears, which affects hearing in the process. Boom. The ABR indicated a shift to severe hearing loss. The November ABR was tied with an MRI and ultrasound; therefore, Ivey was intubated but only under deep sedation using propofol. So the results of the ABR were not affected. The November ABR was inline with past ABR's. Ivey has been under general anesthesia when past ABR's were performed, but the August was the outlier.
The weird thing out of all of this, Ivey left her hearing aids in after they were adjusted to a severe hearing loss. She has never ever left them in. It stumped the audiologists as well.
Oh, one more thing. In August, the audiologist kept asking me how Ivey's behavior had changed due to the hearing loss. What behavior signified the loss? I had not noticed any behavioral changes that indicated severe hearing loss. I lost confidence and wondered how I missed it, what was I missing. Erica and Stephanie didn't see behavioral changes either. Ivey still responded as she always had. What I learned, trust my instinct. I didn't miss anything. I have to keep repeating that to myself, "I didn't miss anything"......
Last week we returned to audiology. Ivey's hearing aids were readjusted to the November ABR. So keep up the sign language, the girl communicates through sign language. But for now, Ivey seems to be in a stable hearing world. Sigh................
Anyone who is up for a girl's night out.....I'm in need!!!!
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