Here We Go Again…But I’m Cool With It


Full KubiHulkHere 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 3rd 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 4th 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.)

KubiHulk 2

Stand Back People! I’m Mothering!

baby boy 1

We’re now officially four days out from Nugget’s kidney surgery and I’m doing exactly what any mother in my situation would be doing, buying wine. But fret not, it’s strictly medicinal. Twenty years ago I knew the kind of people that could deliver a Valium cocktail to your door in situations like this but I’m old now and a Valium cocktail would put me to sleep until November. With age comes wisdom and wine works just fine for the old and wise. I’m really not just buying wine, I’m buying groceries too and as some rude ass old man in the store pointed out this morning, I’m buying a lot. “Wow, that’s a hell of a lot of groceries huh? Must have a lot of mouths to feed. Wow.” Yes old man Hoosier, I might be overbuying, but I’m nesting. What of it? I am nesting like a damn boss!

It makes sense because nesting-aka-mothering, is what I excel at. Oh trust me, ten years ago I couldn’t mother a damn squirrel but thanks to doing time in Turkey where I was forced to develop my skills as a hard-core Turkish housewife, I can now mother the hell out of someone and make everything better before the first tear even falls. I’ll whip up a layer cake from scratch, press your pillowcases to a crisp perfection (Insane I know, but that was my mother-in-law’s thing and she taught me well.), clean your floors so you can eat off them and make it look like our lord and savior Martha Stewart was the last person to make your bed. Oh, I can mother. Since in this situation, I can’t take the Nugget’s place on the surgery table, I can’t perform the surgery and I can’t kiss that boo-boo all better, I damn well better mother the hell out of him.

I’ve got a house full of groceries, cookies in the oven and I’m on my 4th load of laundry today but still I’m nervous, but it’s justified. From the time I found out about his kidney problem when I was five months pregnant, they always said that surgery was the worst-case scenario. In those years since then I’ve worried that with any high fever or after every ultrasound or renal scan we would be facing the worst-case scenario. Every time I’d leave one of our appointments I’d call the Turk and tell him we’d “dodged the bullet.” Ok, the first time I had to backtrack and explain what that meant as English idioms aren’t his thing, but once he got it, that was our code. There were even a few appointments in there when I got to tell him that not only had we dodged the bullet, but that things might be looking good. We relaxed. We could breathe. Maybe, just maybe this little guy who’d gone through so much wouldn’t have to go through any more.

In June, as we were in the midst of moving into a new house, he had a fever that just wouldn’t go away. It culminated with a fever that spiked so high, so fast that he passed out and I’m pretty sure that moment took at least 5 years off my life. I did the only thing I could think to do, just what they’d told the Turk to do with me when I was pregnant with a high fever in Turkey – I stripped him down and stood with him in the shower under “deniz-gibi su” – water like the sea. He finally came around and the fever broke. But I sat up and held him all night long, scared to put him down, terrified the fever would return. The next morning it was back so we rushed to the closest children’s ER only to be told it was “just a UTI.” The ER didn’t call his nephrologist though. The one guy who needed that information never got it or things would have been handled differently. For a kid like Nugget, there is no such thing as “just a UTI.” A few days later, it all happened again and this time, I called the nephrologist and he sent us immediately to his ER. After countless tests they couldn’t really come to any conclusion but all signs said it was time for more intense testing on that kidney.

A few weeks later he had his 4th renal scan. With an IV and a catheter, he needed to remain completely still while they pushed radioactive liquid through his little system for however long it would take for his kidneys to totally drain, usually about 45 minutes. Anyone who has ever met a two-year old knows that remaining still is not an option so Nugget had to be taped to down. The first scans were rough but he was tiny and easily distracted. Now, he was two and a very, very wild two at that. The Turk had the Ipad tuned to a dog movie, that kid loves him some doggies. I was on head-patting, sweat-wiping, Twinkle-Twinkle-singing, paci-duty and Big Bro was armed with an arsenal of Elmos. We were a Nugget entertaining sideshow but the Nugget was not amused. He proceeded to spend the entire 55 minutes screaming like an angry Turk preparing to wage jihad. I’m pretty sure Homeland Security was called by a nervous Hoosier in the waiting area, but I have no proof. He screamed through the entire test but we made it through. Unfortunately after four of these tests I knew what I was looking for and I could tell that his jacked-up kidney hadn’t drained. The nurse reassured me that this sometimes occurs but moms know and I knew we weren’t going to dodge the bullet any more. We were likely looking at the worst-case scenario.

A week later our bespeckled little doctor in his charming bow tie told us it was time. He patted Nugget’s leg, looked right into my nervous-mom eyes and said, “We tried. We gave it time but it’s not going to fix itself and we can’t wait any more.” Maybe because of my super-mom Spidey sense I knew it was coming so I wasn’t totally freaked. I didn’t even freak when he told me about the four-inch incision, the stent, the kidney draining out his side or even the whole camera up his man-hoo-hoo to find the blockage part. (I think that last part didn’t freak me out only because I don’t personally own a man-hoo-hoo. Whooo.) When did I freak out? When I had to call the Turk and tell him we didn’t dodge the bullet this time.

Lots of anxiety has filled the past six-weeks to get us to this point. We had to make the decision for me to take an extended period of time off work to care for the Nugget. Then we had to figure out how in the hell we could afford for me to take time off. PS – we totally can’t afford it but sometimes as the All-Knowing Tim Gunn would say, “You just have to make it work.” (Oh, and if in coming weeks you happen to spot me on a nearby corner waving a cup, holding a cardboard sign declaring my hardship, please, give generously. Thanks.) We had to prepare ourselves and above all else, we had to make sure that Big Bro wasn’t getting the shaft, which is often the case when there’s a little guy in the house with big issues. Thankfully, he’s the most awesome big brother in the universe so we’re all good.

So you see, there is no reason to secure me a spot in Betty Ford. (Though I hear it’s fab.) My wine buying is justified, as is my nesting. It’s been a very long summer and it’s time for us to fight our way through the worst-case scenario. It’s time for me to Martha these next few days away and make sure that everything is clean, pressed and totally prepared. It’s time to put away all other petty concerns and mother the hell out of my Nugget. Above all else, it’s time for some wine.