Post-op Ruminations

We have now been out of the hospital and home for four days and the overall feeling of relief is immeasurable. I mean, it’s like way beyond that feeling of relief you get when you finally get into the rest stop bathroom after being stuck in a traffic jam for 4 hours on the PA Turnpike and let me tell you from experience, that is a euphoric level of relief. No, the relief of finally being on the other side of your baby’s surgery is something too complex for even a sassy wordsmith like myself to describe.

In the last four days I’ve had a lot of time to think while being trapped under the weight of a snuggling Nugget, staring blankly at a television streaming hour after hour of Sesame Street. (I hate to be snarky, but after 40 years of fixing toasters, Luis is starting to show his age.) Much like captives use visualization to remove themselves from their situations, I decided to ruminate to remove myself from Elmo. In my captive state, I decided to make a list of things I wish I’d know before my kid had surgery. Fortunately for you, dear reader, I was spared from a clinging Nugget for a few moments here and there so that I could share my new knowledge should you ever need it. You’re welcome.

  1. Handing your baby off to a surgical team will break even the toughest broad.

I’m a pretty tough broad, like ‘I can birth a baby in Turkey via c-section, and walk out the door 23 hours later with only Tylenol to ease my pain’ tough. I’ve also been through a butt-load of nerve-racking procedures with this little Nugget in the past two years so I was sure I could handle this. I couldn’t. The Turk couldn’t. I don’t really think anybody can.

  1. Even if your child is safely in your arms, there is no sound more terrifying than hearing the words “Code Blue” in a children’s hospital.

Fortunately, it was a false alarm but the speed at which a mass of professionals converged on the area was stunning and though it did cause me to pee my pants a little, I was grateful to know my baby was in good hands.

  1. Eating one’s weight in chocolate covered peanuts is perfectly ok when your child is in surgery – as is eating one’s weight in Italian hoagies and Smartfood popcorn.

I’ve never been a stress eater, or emotional eater or any of that. I’m just an I-really-love-food eater. But somehow, during this hospital stay I turned over a new leaf. Chocolate covered peanuts became my drug of choice and every time that poor Turk plunged his hand into the bag expecting a mighty pay-off in the form of chocolatey-peanuty goodness, he was denied. He now knows what it’s like to love an addict.

  1. Waiting rooms blow.

Everyone in there is under a heightened level of stress because they’ve all just handed their loved ones, in this case their children, over to be sliced open. In what world would it be comforting to provide these people with under-stuffed vinyl sofas, craptastic vending machines and water. Seriously, water? Can’t we even spring for a Keurig? I know my bill alone will pay for enough coffee pods to reach Pikes Peak (See what I did there? Coffee joke.) Did I mention the consistent blaring of Dr. Phil and Maury? (Who knew Maury was still on the air? Thank God paternity confusion is still going strong here in ‘merika) Why have there been no strides made towards turning these horrible rooms into something more like Starbucks with smooth jazz, cappuccino and soft, flattering lighting? Why not whip a nervous mother up a cup of chamomile? What about a stress-latte? Where is the innovation in customer satisfaction medical field? Let’s get someone on that.

  1. Every mother Boo Boos

After more than one night sleeping in one’s child’s hospital room, it is virtually impossible to not resemble a member of Honey Boo Boo’s family: disheveled, stained and smelling like a public restroom. By day two, my hair was beginning to form dread-locks and my clothes covered in Nugget bodily fluids, coffee stains and perhaps some rogue chocolate from my peanut binge. The extra girth my excessive hoagie consumption added to my midsection pushed me over the edge so that by the time the projectile barfing started on day 3, I was straight up Mama June Boo Boo.

  1. Pediatric nurses are amazing, especially when dealing with cranky parents who haven’t slept or showered for a few days and may or may not look like Mama Boo Boo.

Tempers flare. Profanity flies. It’s inevitable but the wonderful nurses we had took it in stride and saved all judgement until they were far away. (I think they were all just scared of the Turk. He went a little Midnight Express a time or two.)

  1. Donald Trump eases pain.

As a registered voter with a solid (some might even say excessive) education and a fondness for sanity in government, the fact that my Nugget is enamored with Donald Trump haunts me. I’m not sure if it’s the hair, or the faces or the overall clown-like nature of The Donald, but he brings about a level of joy in the Nugget usually reserved for puppies and ice cream. But I must thank The Donald for one thing; when things were bad, a Trump sighting on the TV or a Dancing Donald video on the Iphone immediately brought about cheer. I’m not proud of allowing my two year old access to these horrors but a desperate mother will use whatever she can. Don’t judge.

  1. 2 years olds and bodily drains are a disgusting combo.

They made the process of maintaining an open kidney stent seem so easy during discharge. He’d relax and slowly wait for me to change the diaper, reposition the stent, check the flow, clean the end, add a top and bottom diaper and viola! No one counted on the fact that someday he’d feel better and we’d return to diaper changes that resembled wrestling a rabid wolverine. Add to that rabid wolverine a dripping drain and all I can say is eww. So far in the past four days I have been covered in kidney juice more times than I care to mention. Likewise, my bed, my sofa and my living room carpet have also been assaulted by kidney juice spewing from his drainage tube. It’s gross, really gross and one should note that when Googling, “How to remove kidney juice spewed from an open stent” Google gave me zilch.

  1. There is no sleep like that second night home from the hospital when you’ve made it though the first scary night and you think that maybe, just maybe everything is going to be ok.

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Stand Back People! I’m Mothering!

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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.

Ears and Kidneys and Ears, Oh My!

Thanks to a missing ear and jacked-up kidney, by 3 weeks of age my Nugget and I were spending at least one day a week at the hospital for testing. Nuclear scans, ultrasounds, IVs and catheters were pretty run of the mill for us and after the third or forth, I finally got over that feeling of fainting when they plunged the needle into the little chubby arm of my offspring. I can also safely say that in that time my boobs spent more time out in public than some high-grade stripper’s boobs do during a low-tipping shift. My Nugget was no welterweight and fat guy’s gotta eat no matter if you’re in the middle of Radiology or not.

Some tests were easier than others but he handled them all like a champ. (Later we’d find out that he saved up all that hostility for his toddler tests.) Turned out that the kidney didn’t just have hydronephrosis – also known as a blockage to those of you who don’t revel in learning big words – it was also severely deformed. It wasn’t damaged yet but it wasn’t draining the way it should. His doctor, who was aptly named Dick, wanted to operate immediately. The Turk and I were not down with that. There was no proof of damage, no proof of immediate need and both of us felt Dr. Dick was just a big fan of the glory provided by infant surgery. The fact that he spoke to The Turk like he was a moron because of his accent did not help either. Sure Dr. Dick was the best in the city, an innovator, the head of Pediatric Urology…blah…blah…blah but he was a dick and we couldn’t get past that. It all fell to pieces during an office visit around 3 months.

***I wish I could say the following is a dramatic recreation of the event but it’s not. It’s pretty much word for word. I’ve learned that when you’ve got a sick baby you can get away with saying all kinds of crazy-ass crap. That’s rather dangerous for someone like me.

Dr. Dick – “I don’t understand why you are so hesitant to get this baby fixed. What if he’s in pain? Don’t you want to prevent that?”

Me – “Do you think he’s in pain?”

Dr. Dick – “Maybe, maybe not. We don’t know. But if we fix it now you’ll likely see a change.”

Me- “Well…”

Dr. Dick – “Well what? I feel like there is something you’re not telling me. Just say it.”

Me – “Ok. You want to know why I’m hesitant? I will tell you. You’re an asshole. We don’t want you to operate on our child because my husband and I think you are an asshole. You know this kid’s kidney but you have no idea what his name is. You’ve never examined him once and quite honestly, your matching socks and belts every damn time we are here annoy the hell out of me, but mostly, you are just an asshole.”

Awkward silence while nurse’s eyes bulge out of her head.

Dr. Dick – “Alright then. If that’s how you feel, I think you need to see my partner. I am fine with that. He is a great doctor and a better match for you. Best of luck.”

As Dr. Dick departs his nurse turns to me and whispers, “No one ever tells him that but he really is an asshole. Thank you.”

A few weeks later we met our new nephrologist, an adorable little man in horn-rimmed glasses and a bow-tie who suggested we watch the kidney for a few months and see if maybe it rectifies itself. I was immediately in love. Just like that, with the wave of his bow-tie our new doctor put the kidney on hold giving us time to figure out the ear.

——–

Microtia is a congenital birth defect in which the ear does not form during the first trimester. It can occur bilaterally or unilaterally as in the Nugget’s case. It occurs in 1 out of every 6,000-12,000 births. It is usually accompanied by Atresia (a Latin word meaning closed) – a missing or closed ear canal. See that, first I taught you big words, now I’m teaching you Latin. It’s amazing what one can learn on the interwebs…which is exactly how I leaned about Microtia-not from a doctor, not from the hospital, but from Google.

Our then, very male, very white, very clueless pediatrician had no idea that there was even a name for what he called Nugget’s “malformed ear.” He told us we had no need to have his hearing tested since we could see his ear was closed. He also told us he’d spoken to an ENT upstairs from his practice and we should just wait until he was older to see if he answered to his name, if not then he might have a hearing problem. Because in 2013, the best way to know if a child is deaf is to wait for them to answer to their name much like one would’ve done on Little House on the Prairie. Obvi, modern medical has no better solution sir. I think you see why he is our former pediatrician. (Sidenote – our pediatrician now is a dead ringer for Shirley from What’s Happening and we’re all much happier.)

Not being one to put my trust in a wimpy white man, doctor or not, I took to Googling. I knew this ear thing had a name and I needed to know if there was anything else connected to it. I typed in – missing/closed ear and BOOM! I got a wealth of info in return. Everything listed was exactly what we were dealing with and in addition to the information I also found an amazing group of parents and Microtians (No seriously, that’s what these missing eared people call themselves – how freaking awesome is that? I want to be a Microtian.) on Facebook that over the past two years have given me more info, reassurance and comfort than any of the multitudes of medical professionals we’ve seen.

The next two years were a blur of hearing tests, sedated hearing tests, procedures, ENT visits, and the constant question – to aid or not to aid. Then there was the learning curve on the hearing aids. Because he has no opening he has to wear a special kind of aid called a BAHA. But don’t worry; there is a Facebook group for that too.

There were ear infections in the little ear and ear infections in the good ear, which are a really big deal when you only have one ear. There were more tests to make sure the infections didn’t harm the good ear and then there was the balance issue that caused everyone to panic, certain there was something else going on with this little Nugget. There wasn’t. He just needed a tube in his one good ear and balance was restored. But alas, I got a few more grays in the process. P.S.- Thank you Jesus for Miss Clairol.

Though I’m not a huge fan of Indiana, there is one thing I can say for certain; it is a great place to have a kid with issues. From the minute we left our first hearing test and he was labeled Hard of Hearing – (I know right? – I always thought that was an offensive term but it’s actually the technical term. The more you know huh?) we have been part of Indiana’s early intervention program. We’ve had developmental therapists, occupational therapists, parent guides, deaf mentors, sign language tutors and speech therapists all come right to our house with copays that are less than a grande latte. Good on you Hoosiers. We also got courted by every deaf and hard of hearing organization in the state, with outings, meetings and playdates. Everybody wants the deaf kid! Ok, maybe not the kids in that one playgroup where the Nugget kept pulling off their Cochlear Implant Processors but in his defense, they are attached to the kids’ heads by magnets so if you pull them off…well you can see how a rowdy toddler could find this amusing. Some groups we are still a part of and some we broke up with. Just because you share a diagnosis doesn’t mean you’re compatible, but it’s nice to have the offers.

Now, two years out, the physical side of the ear isn’t very important to us. Of course I worry about some asshat kid bullying him but I’ll make sure he’s got Chuck Norris-like butt whooping skills to take care of that. I also constantly fret that his speech delay is connected to his hearing or that something will happen to his good ear. We still debate to aid or not to aid at least once a month but audiologists assure us we will know when it’s time. Sure there are surgeries he can have when he’s older and prosthetics he can wear but nothing will change his hearing except an aid and now that he’s got hair you hardly notice his lopsided head. And not to toot my own horn but with the genes this kid’s got, he’s still damn good lucking even with a lopsided head. Toot-toot.

For now, we’re just taking the ear in stride and aside from cultivating a love of Nemo (You know, because he had that whole little fin thing- get it?) and helping him learn to locate sound we don’t pay much attention to the little ear. Sure, we still tease him by putting elf ears on him at Christmas and making “normal” jokes and of course, the comedy of a one-eared kid trying to wear sunglasses never ends, but all in all, it’s no big whoop. We got ourselves a Microtian and that is about as amazing as having a Klingon.

Unto Us, a Bum Kidneyed, One-Eared Nugget is Born…

2045_young_mother_in_a_manger_holding_her_babyWhen I was about 5 months pregnant we found out two things, that he was a boy –which provided with great relief since we’d already successfully kept one boy alive to age 4 and I was psyched to continue to use the mad skills I’d cultivated in the Matchbox arena- oh, and we learned that he had a jacked-up kidney. Jacked-up was not the technical term, they called it something more like a blocked kidney but regardless, it was all blown up and not draining. Hydronephrosis was the technical term but I couldn’t remember it. Little did I know it was the first of many gigantic medical terms I would learn thanks to this kid. My doctor reassured me that this happens often in boys and chances were solid that with one colossal whiz after his long road trip through the birth canal everything would be set right. But just in case he was wrong he sent me to see Maternal Fetal Medicine and Pediatric Urology.

To those who have spent time in Maternal/Fetal doctor’s offices, God bless you. If you’ve never been to one you need to  thank the powers that be. Once they determined at least one kidney was working, I got to take the carpool lane to the fast zone and just had to return for monthly ultrasounds to make sure it kept working. However, the women I met in the waiting room waiting on those ultrasounds often brought tears to my eyes. As I listened to women share stories of 8th and 9th rounds of IVF, 2nd mortgages on their parent’s houses to afford more and countless pregnancies that never made it past the single digit weeks, I’d never felt more grateful. There I sat, an elderly fertile Myrtle who could get knocked up if her husband walked too close and I was taking up valuable ultrasound space with a kid that probably just needed to pee. My Catholic guilt was strong.

When the Nugget came out he did in fact pee and but that didn’t take care of the problem. His kidney still took up most of his little abdomen when full. He was fat and sassy but there were also a few other things we noticed…like the ear. Nugget had one ear that was normal but had a tag on it. We’d later learn that a skin tag on the ear means there is a kidney problem. Crazy how that works huh? (It’s also crazy how much time I now spend looking at people’s ears wanting to send them to a nephrologist – see that, another one of those big words I’ve learned. Impressed? You should be. And I’ll save you that trip to Google- it’s a kidney doctor. You’re welcome.) The other ear wasn’t quite right though and the doctor and nurses really knew what to say. It was tiny and not really ear-shaped and it looked like it was totally closed but considering he’d been laying on it for 9 months in a less-than-spacious studio apartment, I thought maybe it just needed time to pop out to normal. In my defense, I was on a lot of drugs. Don’t judge.

A day later it didn’t pop out. It didn’t open up and he totally bombed his newborn hearing test. (The first of many hearing tests he’s bombed. That kid has the same luck with hearing tests as I once had with driving tests.) But no one really cared about the kidney or the ear because the Nugget was yellow. And sleepy. So sleepy. His bilirubin was high making him jaundiced so he did some time under the baby sunlamps and soon we were on our way home with a mini light board for him to sleep on and a massive list of appointments and tests: nephrology, audiology, ENTs, urology – you name it we had an appointment, our first being for a blood draw the next morning to make sure the light was working. It wasn’t.

The first days home were a mess of running back and forth for blood tests before finally being sent back to the hospital two days later. His bilirubin kept going higher and he had Rh issues. Basically the little turd didn’t like my blood type – the first of many times we would butt heads in life- but on a guy with a bum kidney and a missing ear no one was really sure the issue was as simple as that. But, a few days in the hospital and the threat of a blood transfusion finally got him on the right track and got me moving as well. Obviously I hadn’t just birthed an ordinary kid through my lady parts. This little hellcat was   going to stretch me to my limits and I needed to toughen up.

Riveter at work on Consolidated bomber, Consolidated Aircraft Corp., Fort Worth, Texas. Photo by Howard R Hollem for the Farm Security Administration, October 1942. Credit Line: Library of Congress Prints and Photographs Division LC-DIG-fsac-1a34953.
Riveter at work on Consolidated bomber, Consolidated Aircraft Corp., Fort Worth, Texas. Photo by Howard R Hollem for the Farm Security Administration, October 1942. Credit Line: Library of Congress Prints and Photographs Division LC-DIG-fsac-1a34953.