Today, I scheduled Andi's surgery #10... a bilateral bone conduction anchor surgery. Just after Thanksgiving, Andi will be going under for an anchor (a big screw) being placed behind both ears, feeding sound directly into the bone and thus, the nerve. It will take six months healing to allow the bone to surround the new hardware.
We haven't done any sort of "procedure" since January 2015, when we put a set of "T-tubes" in her ears. A long-enduring set of ear tubes to help her ears properly drain. One of those t-tubes is still in place today, in her "good" ear - if you will. Prior to this t-tube surgery, we haven't had a "real surgery" since surgery #6 I believe. i think 7, 8, an 9 are ear tube placements. But still, a surgery is a surgery, and when it comes to a kid with CHARGE Syndrome, nothing is guaranteed. When it comes to another anesthesia, intubation, intrusion... nothing brings back "medically fragile" parenting PTSD than the simplest words used in a hospital. Words like, 'it depends', 'deductible', 'just in case', and my personal favorite -- the eau du hospital hand sanitizer scent. That is what really sends my stomach into Cirque du Soleiel stomach flips and feeds the anxiety.
But to answer the "why!" Why put her through this surgery. First of all, we're doing bilateral. Andi only has a functional auditory nerve on one side... but, technology has advanced to the point where they can implant both sides with "an anchor" (a fancy screw in her skull), and then program the hearing devices to feed into the left ear, so that she'll be sent auditory sounds from both ears, but to the one ear that can process sound. It isn't guaranteed that she'll be able to determine what side she's hearing from, but it will likely alleviate a majority of the "what?" from the right side. Our ENT described it as such - she'll get 80% hearing from her left ear, and the other 20% will be sent to her left ear. It's going to improve her hearing. And transitioning from the soft band (the headband she's been wearing these past few months) to the anchor, will improve her sound quality, her hearing - as it will be a more direct line through the bone.
Our objective is what every parent wants, the best quality and quantity of life that we can provide. For Andi, one of the most sociable, musical and extremely engaging children I've ever met - improving her hearing will only strengthen her ability to become the Dr. she has been programmed (insert Mom's dreamy sigh here) to be. This kid with her personality, her incredible memory, her command of knowledge, her ability to empathize, and her own set of experiences... who else would you envision taking care of your grandchildren or grandchildren's grandchildren? I think our lil' Andi Bean will be the perfect stewart of all things medical, and write a path unlike anyone else.
Risks. One risk is infection. We have a plan in place and our ENT swears we will do everything in our power to minimalize our risk, which she swears is small. Another risk is slippage or dislodging the device. While it's healing for six months, the base post will be under the skin - held in place by stitches to keep it under the surface while the bone grows around it. There will be no need to cut her hair, or shave a section of her hair off. She also plans to put a secondary hole next to where the main post will go, in case we run into any sort of issues, such as dislodging the initial post. None are expected, but it's a precaution they take while in there to aid in speeding up the healing time should the secondary hole be needed.
We are giddy at the opportunity for technology to advance our baby girl's hearing. We are nauseous at the idea of another procedure, another surgery, another recovery, more pain management, more downtime. We dread the idea of infection, the idea of one wrong move in something such as gymnastics class knocking a well-intact post out of place. But, generally, any sort of surgery produces a whole stream of anxiety that most people don't understand unless they've lived it. Sadly, tonight - I'm far too tired to explain it any better.
Lastly, need I remind you that this is all in attempt to allow Andi to utilize the lately technology enabling her to hear as well as she will at this juncture... (until technology advances even further.) Our surgery is slotted for after Thanksgiving. So, please... start laying out your good juju for our Andi Bean. And start stocking Mommy's Vodka cabinet...she's going to need it. *kidding on the vodka, Dad!* :)
Post a Comment