I’m reading my Bible. I promise I’ll eventually go back to writing about that, but right now life feels more in crisis mode. It always does when we’re dealing with health stuff. I’ve learned that Loeys-Dietz is like an ebb and flow kind of medical condition. You go a few years and everything is really stable and nothing changes and all is right in the world. Then Boom! You have three or four or five medical issues you’re juggling within a very short period of time. And then it settles down and everything is stable and you get to breathe again.
Just in case you didn’t already know, we are not in the ebb period.
After we had returned home from NIH, we received a call with information about the ear infection Eddie had. It was a serious ear infection not to be taken lightly. And it was contagious. He took antibiotic drops for a week and an oral antibiotic for five days. An appointment was made with our local ENT which we were not to miss. So today we visited the ENT for this follow up.
Eddie has not been to Dr. McGuirt, his ENT since 2011 (right around the time we began going to Hopkins for their cardiology visits). We have a whole ENT history that is not pleasant…..multiple ear infections, tubes, perforated eardrums, unsuccessful tympanoplasty, mild hearing loss, etc. After the tympanoplasty, trips to the ENT invoked much anxiety for Eddie — of course, every doctor visit in 2011 invoked anxiety for Eddie. And then with us making the trips to Maryland and Rick’s second heart surgery, visiting the ENT just took a backseat. Until now.
So today the surgeon again suggested we attempt another tympanoplasty. Based on what I know about LDS, a tympanoplasty is not a great option. At least, not one I can feel comfortable with at this time. We are supposed to visit the ENT at Hopkins in the spring that is interested and knowledgeable of LDS. I’d like to get that second opinion before putting Eddie’s ear under the knife. And even then, I may not feel good about the option of another surgery that has the potential of setting up scar tissue and further damaging his hearing.
With surgery off the table of options, we moved on to Eddie’s hearing tests. In the past, his hearing loss seemed to be limited to very low and very high frequencies. The mid range sounds he seemed to do fine with. That has seen some change. His hearing loss now is more in the moderate rather than mild standard. And he has begun to show some changes with this mid frequency sounds. Therefore, the audiologist believes we need to discuss some amplification options.
There’s a lot of this whole health and doctor thing that Eddie has zero control over. That sucks for a 14 year old. I recognize that. I am trying to give him choice and control when it is possible without being a detriment to his long term health. Hearing is something I’m relinquishing control of to him.
I asked him if he would be interested in talking with some professionals about hearing aids and other amplification devices. To my surprise, he casually said, “Sure. That’s cool.” So we will return in November to discuss options to help him hear better and compensate for his hearing loss.