I am in the midst of studying for my AP exams (last ones ever!), so I can't write as much as I'd like, but my school had a ceremony honoring the National Merit Finalists last night. We were able to bring a teacher who was influential in our lives. I chose to bring my speech therapist from my elementary school. She helped me develop clear speech, yes, but she also did so much more. She gave me the confidence to speak up for myself, and was also a tireless advocate, ensuring I received the services I needed. She was a guiding light for my mom and I in the early years, and provided us with a wealth of knowledge that helped me get to where I am today. Last night was the first time I saw her since I was in 5th grade, so it was really special! I got to give a short speech about her influence and thanking her as well as my parents.
Me with my speech therapist from elementary school
Hello! I've been meaning to write an update since my surgery, but as you'll soon find out from reading the rest of my post, things have gotten quite hectic. You know how when you start off with one teeny problem, but then everything kind of snowballs out of control and you feel like if anything else happens, you just might lose it? Yeah, that's about the point I am at right now. It's been a bit of a rough ride!
I had the surgery exactly two weeks ago, and it went well! The surgeon said that there was some extra skin on the skin flap area that he went ahead and removed during the surgery, and that doing so could also help prevent any connectivity issues. The one thing I was delighted to discover when I woke up- my tinnitus (which I had gotten as a result of having that ear implanted the first time around) was gone! Unfortunately, so was my taste, but I was prepared for that, so I did not mind too much. The biggest problem I've had with recovery is vertigo and just being off balance in general. The floor seems to move whenever I do, but hopefully that will go away soon.
I missed school on Monday and Tuesday afterwards (I was off the week prior because it was my spring break), but I was actually feeling pretty good Wednesday (exactly 1 week post-op) and went to school. I was also activated that afternoon and had a check-up with my surgeon. I have to give a huge thanks and shout out to Helen and Kemper of Lone Star Family for their generosity. My ear and head were still extremely sore the night before I was activated, and I almost had to cancel activation because I knew there was no way I could wear the processor on my ear at that point However, it was suggested to get a long cable and pin the processor to my shirt while my ear was healing. Neither I nor my audiologist had one, but Helen was kind enough to lend me a long cable that they have, so I cannot thank them enough!! Activation was uneventful, and went as expected. I knew I'd be starting from scratch, but I secretly hoped I would be able to understand *something*. No such luck!
The next morning I woke up at 5 AM struggling to breathe with a severe pain in my chest that happened with each breath I took. Due to having some risk factors for blood clots which are even more likely to happen after surgery, my parents took me to the emergency room to ensure everything was okay. Honestly, by the time I got there the pain was less severe (it was far worse while I was laying down), so none of us were too concerned. My dad joked that it was "an expensive way to get out of going to school", which which gave me a little chuckle. I was lucky enough to have not one but three training students observing and attempting to treat me. I felt obligated to return the favor since I was the observer last year, but I will admit I was a *tad* concerned when the EMTs-in-training whispered to each other trying to figure out where the leads went to do an EKG as I was lying there with my chest completely exposed. It took a few tries, but they got it eventually :P
They did the EKG and chest x-ray, both of which looked normal, but then when the blood test results came back 45 minutes later, was one of the levels that can indicate a blood clot was elevated, so a CT scan was ordered. And that's where things got weird...
I don't know why or how it happened, but soon after the CT scan started, I began hearing an extremely loud sound in the ear I had surgery on, which can only be described as a propellor/airplane noise. I did not have the processor on in that ear, nor do I have residual hearing since the reimplantation. But the noise started, and continued, even after I was brought back to the hospital room which was far away from the CT and MRI machines (the CT scanner was in a room next door to the MRI.. I have no clue if this could have caused something).
Yeah, so I'm not proud of I, but I kind of lost it. At this point I was terrified not only because I didn't know if I had a blood clot in my lungs, but now I've got this noise in my head and I started growing increasingly anxious that somehow in the process of going in the CT scan, something messed with the implant. My mind started racing and I grew increasingly upset as I thought of the idea of having to endure surgery yet again to have to get it replaced (this was my 7th surgery, and I'd hoped it was my last). It didn't help that the ER doctor's response to the whole thing was simply "That shouldn't happen. A CT machine is just a big X-ray." No, it shouldn't but it DID!
Thankfully, the implant still works fine. The sound I am hearing has not gone away. Oh, and as far as why I couldn't breathe? Turns out it was pleurisy, fluid on the lungs, which they treated with an antibiotic.
That finally went away this weekend, and then this week I've come down with a sinus infection. My nose is stopped up, and I am sneezing constantly, which probably isn't good since I was instructed not to blow my nose or sneeze for 4 weeks.. And I'm having a strong feeling of pain and pressure over the implant area, which I am thinking is due to the general stuffiness. It doesn't help that the progress with this implant is painfully slow. I know it's only been a week. It's to be expected. But I was kind of hoping that like the last time that ear was turned on, I would be able to hear on the phone the next day. No such luck, hearing is a struggle and I can't understand anything out of it yet. Having a hard time hearing in school, which I am already extemely behind due to missing so much of it last week. Trying AVT practice exercises, but so far comprehension is next to nothing without speechreading.
After changing my mind a ridiculous number of times, I will be having my left ear reimplanted on Wednesday, 4 years (down to the week) after it was originally implanted. It will be replaced with another Freedom device. Apparently there's a new straight array that new patients are receiving, but they aren't giving it to reimplanted patients (wouldn't want to change things up too much!). This certainly isn't my first choice way of spending Spring Break, but I will be happy to have it all behind me. If all goes well (knock on wood), I am scheduled to be reactivated a week later on March 20th.
I found this to be really encouraging. The student sued Creighton University for failing to provide CART access and interpreters, forcing him to take out over $100,000 in loans to pay for them himself. Hopefully this will set a precedent for future students with hearing loss in college/medical school/grad school. For more info, here are a few links: