Man of the Ear

“Are you really sure about this?” I asked Nugget one last time as we spun through the hospital’s revolving door for the third time. (Revolving doors never get old in our family.)

“Yeth. I am thure. I’m ready Mom.” The idea of letting a six-year-old make his own medical decisions seemed nuts but in the end, it’s his body. After spending the summer jumping through more hoops than a participant in the Westminster Dog Show, Nugget will be heading into surgery tomorrow to get an abutment implanted in his skull that will eventually hold his hearing aid and while he can’t wait, I’m ‘bout to lose my damn mind.

Six years ago this chunky Nugget came roaring in and while he was as big as a small toddler, weighing in only an ounce shy of 10 pounds, he had more issues to contend with than his thunder thighs. He had a kidney that didn’t quite work taking up his entire abdomen. He had a divot in his throat that we hoped had closed better on the inside than it had on the out and as a cherry on the top, he had one ear. The other spot was filled in with a tiny nub that kind of resembled a mini-ear but with no opening or inner workings. After failing the newborn hearing test and a few kidney scans we spent his first couple years splitting our time between children’s hospitals and doctors until we finally got the diagnosis that put it all together – Branchio-oto-renal syndrome. Branchio-the divot in his throat, oto- that missing ear and renal, the  hot mess kidney. With an official answer, we were on our way to getting a handle on things.

The first three years of his life were filled with procedures, surgeries, early interventionists, audiologists and a mother that played detective better than Cagney and Lacey combined. Eventually we hit a good groove and things became manageable. A speech impediment and anxiety issues are far easier to deal with than internal organ issues but there was still one surgery left and that one is happening tomorrow.

Because he doesn’t have an ear, there is no place to put the hearing aid and no tube to send the sound through so he wears a BAHA (Bone Anchored Hearing Aid). He’s worn it on a headband up until now that holds the aid close to his bone and transmits soundwaves through his skull. But being the one-eared guy wearing a Bjorn Borg head-band all day as well as a transmitter around his neck connected to one around the teacher’s neck has taken a toll on his self-esteem. (And I thought being the chubby kid was rough!)

Last year a little asshead from a neighboring class did mock him but the perpetrator was quickly reported by the class narc and received a harsh punishment. I asked Nugget if he was upset about the incident, “Nah. It didn’t bother me because I didn’t hear him.” Note to the asshat, if you’re going to mock the one-eared guy, you’ll need to do it on the side he actually has an ear or your efforts are fruitless. This is a prime example of how Nugget handles all this. In his six years he’s gained more self-acceptance than most adults. Last week he came home from school with  a self-portrait complete with one ear, “Dats who I am Mom. I’m just keepin’ it real.” It worked for Van Gough, so why not Nugget?

Six is the magical age when a kid can break free of the headband and get an abutment implanted so the hearing aid just snaps on, streamlining the process and turning him into “a man” as Nugget explained. “When I get my BAHA implant, I’m going to be big, like a man. No more little kid.” He has been counting down to this manhood for years. This summer we got the approval and now it’s time. It’s all great for him but the thought of wheeling my baby into surgery one more time gives me more anxiety than the current political climate. And if I’m bad, my husband The Turk, AKA Captain Anxiety, is about to blow. 

“Baba is thrething me out Mom.” Nugget confided in me last night in bed.

“Right??!? He stresses me out too!” I confirmed.

“Can we leave him home?”

“Sorry Nugs but no. We can send him for coffee a lot though and if we take him he can drive and we can snuggle in the backseat.”

“Thounds good to me Mom.”

So send some good vibes our way for tomorrow, Nugget becomes a man, or at least his ear does and while that happens I’ll be twitching and pacing and The Turk will be getting coffee….again…and again.

 

Here We Go Again…But I’m Cool With It

 

Here we go again. At approximately the butt-crack of dawn tomorrow morning Nugget will be in pre-op. Again. You might remember my grand appeals at the start 2016, begging that this year not suck. Well, now that we’re 7 months in with Trump and his hate train barreling down the tracks, senseless racist violence erupting seemingly daily, bombings in the Turk’s motherland on the reg and countless dead musical legends, I think it’s safe to say my pleading was disregarded. (Thanks Universe! This will be remembered.) 2016, it appears that much like your older brother 2015, you suck.

But I’m no Negative Nellie and I’m taking a different approach to this situation because even though my little guy will be sedated and out of my reach for a couple hours, this one is easy. This time around no one is pulling a vital organ from my Nugget to trim and reshape before stuffing it back into this abdomen with a slew of tubing and the hopes it will work again. This time we won’t be stuck in a hospital room for days, cradling a baby writhing in pain. This time we’re lucky and this year I’ve met a lot of people who have taught me just what it means to be one of the lucky ones.

A few months ago, in the children’s section at the library, I met a kindred spirit. I knew from her first F-bomb over the abstract puzzles we were meant to be. While other mothers discussed things like better options for Christian-based Mother’s Day Out programs (Seriously? What in the hell Hoosiers? I never heard of these before and I don’t get it…but you do you girl…no judgments.) my new potty mouthed friend and I were comparing notes on the two local children’s hospitals. We were discussing the merits of nursing staffs and surgical waiting rooms. We were talking about how much your prospective changes when you spend a lot of time in these places and how other parents are so lucky they will never need to know this. Then we were talking about her son.

Unlike me, my new friend wasn’t one of the lucky ones. Three months before we met, her five year-old didn’t get to leave the hospital. His rare and rapidly spreading brain tumor that initially took her through our shared experiences, took his life just months after diagnosis. When we met she was days from moving back to her native state while trying to hold things together for her younger son and prepare for the “miracle” son arriving in a few months. She was a tough broad and her story and those hours our kids played together will stick with me forever.

And then there is our Deaf Fairy Godmother’s son. After battling cancer and losing an eye to it years ago, her 19 year old is once again battling the same rare cancer he beat previously. The woman that so dramatically changed our life by teaching us how to relate to our little deaf Nugget and cheering us on every step of the way has spent the past month sitting by her own son’s hospital bed in that same children’s hospital. So far, it’s looking good and the hope is there that they will once again, be some of the lucky ones. (Now if you are a regular reader you know I’m not a promoter in any way but if you have the ability, please go to this Go Fund Me page and help out. This family is amazing. They are Deaf parents and activists of 4 deaf sons on their 3^rd round of fighting cancer and they could sure use any generosity you might find.)

There are so many more families I’ve met this year fighting fights most would never dream of, so as we go into surgery tomorrow, it’s pretty easy to keep things in perspective. This time around Nugget is having reconstruction work done on some teeth and jaw parts that didn’t form due to his hard-core infant drug use. He had so much radioactive crap pumped into his kidneys those first months it’s a wonder he doesn’t glow. (Though it might explain his frequent Hulk-out moments) And he’s getting a new ear tube since his old one fell out and has been stuck in his Atresia canal for more than a month because it’s too small for the tube to fall out like in a normal kid. (Seriously, can you imagine something sitting in your ear like a bug for a month? No wonder he gets surly.)

As with anything, there is a risk. There’s always the risk of more hearing loss with the tube implantation due to his anatomy but there’s risk without the tube too. Like everything in life, it’s a crapshoot. But so far, we’ve been the lucky ones and I will always be aware of that. So tomorrow morning we’ll kiss our Nugget, then kiss the dice and hope for the best. Even when things are uncertain, (I’m lookin’ at you 2016!) perspective is the key – and hey, with only one ear to fix, it will take half as long! Perspective.

Sitting in Post-op Purgatory With Tom Petty

Somewhere around 4^th grade I discovered Tom Petty and have been in love with him ever since. Tom Petty is not only a handsome devil in that drug-dealing-ferris-wheel-running-carnival-worker kind of way, he is also my spirit guide. Long have Tom’s words come to me in times of need to give me a sense of well being. Back in the Turkey every time I’d successfully complete a solo trip to the bazaar, (A horror you will never fully understand until you’ve fought past vicious rotund women in floral headscarves and long coats for cheap eggplant and Hello Kitty undies in 150 degree heat.) the entire walk home I’d victoriously sing, “American Girl.” In our last home as we seemed to be a hotspot for the door-to-door sales of cable TV, roof repairs and numerous paths to Jesus, I always completed my hostile door slam with at least one verse of “Don’t Come Around Here No More.” No matter the situation, Tom provides the perfect soundtrack. This week, morning, noon and night my spirit guide Tom has been in my head, appropriately singing “The Waiting is the Hardest Part.”

Damn strait Tom, through everything with the Nugget the waiting really has been the hardest part. This week we hit a new height in waiting and even the wine isn’t helping this time. Let me catch you up to speed. Due to the reconstruction of his kidney and the swelling that would occur, a stent was placed to allow the kidney to drain through his side instead of the old fashioned way – though his little weinus. The plan was to cap the stent prior to us leaving the hospital, thus forcing the kidney to drain through his tiny man parts. Unfortunately, the Nugget’s kidney wasn’t interested in taking the natural path. Instead it backed up and made him hurl like a drunken frat boy post homecoming formal. The doctors uncapped it and thought waiting a few days would help. They tried again last Monday to cap it and this time the descent into hell was slower. No frat boy barfs but instead a slowly deteriorating Nugget and a kidney that was so swollen it was totally visible on the outside of his body within twenty-four hours. After uncapping it again and being drenched in a kidney juice tidal wave, (Gross right? Sharing is caring.) the Nugget was better and more waiting began.

With an uncorked Nugget in my lap, I anxiously awaited a return call from the doctor’s office with instructions as to our next step. As luck would have it, the nurse assigned to walk me though this “highly uncommon” situation, was Becky-it’s-my-first-day-on-the-job-as-a-urology-nurse. After waiting 4 hours, Becky finally called me at 5 to tell me the office was closed and she’d been unable to get in touch with the doctor who’d been in surgery all day so she’d call me back tomorrow. Before I could throw out my well refined, class A profanity, Becky, nearly in tears, disclosed that this was her first day and apologized for not knowing protocol better. She assured me it was safe to leave him uncorked and promised to call me back first thing the next day. Like a fool, I believed her.

At 10-freaking-30 the next morning, (Seriously Becky, in what world is that first thing? For the love of God Becky, I had time to panic-clean my entire house and even wash the rugs before your ass got around to calling me back.) she finally called with instructions on what we would be doing with my clogged up Nugget. Unfortunately, I’d had a full night to develop my crazy by Googling myself nuts and knew that the options we were facing were not pleasant, ranging from the surgical insertion of an internal stent, to a kidney transplant. We are nowhere near a transplant as he has one perfectly fine kidney that drains like it is maintained by the TidyBowl man, but by this stage in the game my continuing stress has ratcheted my crazy up to level hard-core and there is no longer any room for sanity here. Becky said the doctor was concerned but wanted to let it heal a bit more before making any decisions so we’d leave him uncorked until this coming Wednesday when the doctor would see him and assess the situation. Becky failed to note that part of assessing the situation involved an invasive test where dye is shot through the Nug as he is held down again for 45 minutes so the drainage process can be captured on film in a very gross Kodak moment. There is no way this isn’t going to be ugly. There will be kicking, screaming and lots of sweating and that’s not even taking into consideration the Nugget’s reaction.

So we’ve spent the past week waiting. With the exception of the drainage tube coming out his side, the Nugget is feeling great. He’s a different guy than he was before the surgery. He’s no longer puffy like a dude with a stuffed up kidney. His life-long surliness seems to have diminished because after two years, he finally just feels better. He’s back to patrolling the house in an Incredible Hulk mask and giant foam fist, stopping occasionally to inflict punishment in the form of a colossal fart to his brother’s head. What more could a mother ask for? If his damn kidney would work we’d be well on the road to recovery but instead we are languishing away here in post-op purgatory. We can’t celebrate what we’ve come through because it’s looking like it might not have worked and we can’t plan ahead because we have no idea what is coming. My return to gainful daytime employment remains a pipe dream and the prospect of me turning to late-night pole dancing work in a truck stop catering towards those who get a woody from cellulite dimpled thighs and C-section scars is beginning to grow uncomfortably close.

In the meantime, Tom keeps singing. Yes Tom, I agree, the waiting is the hardest part. Hopefully Tom has more faith in my sanity than I do at this point and I won’t start hearing verses of “Breakdown” before we get through Wednesday. I just desperately hope that we are not facing another surgery and in that exam room tomorrow I will hear the vocal styling of Mr. Petty singing “You Got Lucky, Baby.” If not, I will look that doctor in the eye and say, “Don’t Do Me Like That,” before taking a day or so to regroup so I can fight with my Nugget because, “I Won’t Back Down.” (See what I did there? I just gave you a whole Tom Petty medley. You will now most likely want to head over to YouTube to take a listen to my boy Tom and relive those good old days when rock stars looked like carnival workers, not middle schoolers (I’m talking to you boy bands.) You’re welcome.)