Surgery success

Shade looks like half a chipmunk after a +12-hour muscle and skin graft surgery for his cheek yesterday at Duke University Hospital in Raleigh-Durham. He went in at 7:45 a.m. in the morning and got to the post-op area at 8 p.m. Aitza was at the hospital the whole time, having arrived with Shade on Friday for all his pre-op appointments. They met with Dr. Marcus, the plastic surgeon who had performed the nerve graft surgery on March 31. He was very happy with the progress of the nerve graft after Shade told him he kept having little electrical impulses in his cheek, like mini lightning strikes. They also met with Dr. Phillips, the muscle graft surgeon. Both doctors gave Aitza and Shade a rundown of the upcoming procedure.

Meanwhile I had been working in NYC on an HBO special and planned to get to Raleigh on Sunday morning, the day before the surgery. Being a certified idiot, I decided to hit the Manhattan nightlife Saturday with my buddy Larry, daughter Arianny, son Edwin and soon to be daughter-in-law Michelle (yep, Edwin proposed). The kids were smart and bailed on Larry and me before midnight, but we keep going. Suddenly it’s 5 a.m. at the club (Oh yeah, New York doesn’t sleep!) and we both realized that we had morning flights to catch. We Ubered to the hotel, speed-packed our clothes and Ubered to JFK airport in record time. No rest for the wicked.

Shade’s first snow experience

Larry took off for Seattle and I hung out at my gate for the 8:30 a.m. to RDU. But to my dismay, the weather gods decided to dump 13 inches of snow on Raleigh-Durham that morning, causing a chain of flight cancelations. Meanwhile, Shade and Aitza are having a grand ol’ time making snow angels and throwing snowballs. It was Shade’s first snow experience, so the blizzard was a special pre-surgery gift for him…

…and a kick in the goolies for me. After spending 12 uncomfortable hours at JFK waiting for a flight to open up (nope), I decided to fly back to Orlando, get my head on a pillow for a couple hours, and fly to RDU the next morning. But the snowfall caused a chain reaction of delays, so the next morning, after boarding my 9:40 a.m. flight, my plane sat on the tarmac for 1 1/2 hours, then turned back to the terminal where we disembarked until 2:40 p.m. Then we got back on and sat on the tarmac for another 1 1/2 hours before getting clearance to take off. So I missed seeing Shade before he went in. At least I got to Facetime him beforehand.

The black mark along jawline shows originally planned incision. The red marker shows where the two-inch thick skin graft was placed to cover the muscle.

I arrived two hours before he came out of surgery, and Aitza gave me a breakdown of the progress as per the doctors’ updates. Shade was prepped for surgery and went under at 8:45 a.m. Dr. Marcus and the surgical team made an incision from his right hairline down his sideburn, in front of his ear and down his jaw line. Then they lifted the skin up, exposing the cheek muscle, which has been paralyzed since his first stroke on July 14, 2011. Meanwhile, Dr. Phillips harvested muscle from Shade’s inner right thigh, which was placed on top of the paralyzed cheek muscle. Unfortunately, because the original cheek muscle had lost so much mass, the skin on his cheek had shrunk. So when the doctors attached the new muscle, there wasn’t enough skin to cover the incision area. Consequently, Dr. Marcus had to harvest some extra skin and fat from Shade’s thigh and graft that over the opening. Now there’s a two-inch thick strip of thigh skin stitched down his jaw line, which may make for some strange mutton chops. The last thing the surgeons did was put a little stitch at the corner of his right eye so that it doesn’t droop. This will help him close his eye and keep his tears from running out.

The oxygen level going to the grafted muscle must be over 60%. He’s well over that.

Shade’s cheek is the size of a softball because of massive swelling, which is normal. Inside his cheek is a monitor that measures the oxygen level of the blood going into the muscle. It’s supposed to stay above 60%, but currently Shade has 91% oxygen level, a great sign for healing progress. He has a drainage tube coming out of the cheek to release fluid build up. He’s also enjoying a hydromorphone drip, which he can press every 10 minutes. Perhaps “enjoying” isn’t the right word as he’s dealing with some serious pain in his cheek and thigh. He and Aitza also haven’t slept much since the surgery due to hourly scheduled visits by various nurses throughout the night and day, plus random drop ins from the surgical team, residents, nutritionist, admissions and me. And I was complaining to Aitza about not sleeping for two days after my New York party binge.

The good news is the swelling will reduce dramatically over the next days and then keep reducing for the months of healing to come. Dr. Marcus said that in another 10 months, Shade should have a third surgery to remove much of the grafted thigh skin and clean up the scar so that it’s following his jawline and isn’t visible from the front. In that time, the grafted nerve should have a chance to attach to the muscle and get it moving. Shade has a lot of therapy ahead of him, but by next year he should have a somewhat symmetrical face that can smile on both sides.

Advertisements

Past Progress and Next News

It’s been since last  April that I last posted in Shade’s Progress, when he had his nerve graft surgery at Duke University Hospital. Just a reminder, they yanked a wire out of his calf and threaded it from his left ear to his right so that his cheek could get some spark back. The following up surgery is coming up. I’ll tell you about it down there.

IMG_4861

Florida ID

IMG_4600

Registering to vote

First, let’s update. Shade got a Florida ID (not for driving. Trust me, you don’t want him behind the wheel. He drives his electric wheelchair like Mad Max.) and then he got his voter registration card. Civic duty awaited and our son got to experience for the first time that dirty feeling you get for voting for the least despicable candidates. Shade’s still serving up good will at The Simpsons Restaurant, meeting folks from all over the globe and local friends, like our Indian Guides buddies Chad Adams and Bill Ellenback, who work out there. If you go out there, stop by.

IMG_2865

 

Shade also traveled with his two brothers, Mayan and Edwin, his Tio Loco and Tia Gigi and Mami to England, where Shade got to enjoy a legal pint of beer. Shade’s a world traveler. Shade’s also been fully immersed in the Pokemon universe as is Mami and they’re constantly grabbing mythical creatures out of the neighborhood. It’s not rare to be caught in a car conversation that involves a Squirtle, Snorlax and Lickitung. If you have a Charmander prowling your neighborhood, call Shade. He’ll take care of it.

IMG_0845IMG_2006

IMG_2872

Finally, Shade has grown out his hair for a couple years and he recently got it trimmed off so he could donate it to cancer patients who need wigs with real hair. He’s sending silky locks to Locks of Love. Now if I can only get Aitza to get the decapitated pony tail out of the napkin holder on the dinner table and into a postal envelope… (I’m going to get hell for this crack.)

So now to next news. Shade healed up nicely after the last surgery, and has been feeling a lot of twitching in his face. Now comes Step 2. We’re heading back to DukeU Hospital for Facial Reanimation. Sounds like a movie. “Shadenator is back and he’s mad as hell!” What this boils down to is Shade’s muscle graft surgery. They’re going to take a muscle out of his thigh (not a whole muscle but a strand so it shouldn’t affect his leg strength. Then they’re going to go in under the skin of his right cheek and graft in the muscle where the nerves have already spread out they’re electric tendrils. Over time and with physical therapy, the nerves will splice with the muscle and soon he should be moving his cheek and mouth where previously it’s been paralyzed. Basically Shade will get his smile back. At least on one side. His other side already had a beautiful crooked smile which he uses constantly. (DukeU Hospital’s site will show you more details if you’re interested.) Oh, and during the surgery, they plan to put a stitch on the corner of his eye to lift the lower lid. That way he can close his eye a little more and the tears won’t be so ready to run out and dry out his eye.

IMG_9625

Shade taking the Lynx Access shuttle to work.

The surgery is scheduled for December 10. Aitza will fly up to Raleigh on the 7th and I’ll join them on the 9th, flying from New York, where I’m working the Two Dope Queens show at Kings Theater in Flatbush. Flatbush is a trendy spot in Brooklyn, for all you folk that haven’t explored the area. Brooklyn is a place in New York, for all you Florida folk who never left the state, or at least the South. I’ll keep you posted as details emerge.

 

Hanging in the hotel

IMG_4333.jpg

Shade enjoys a smoothie. He can’t have solid food until Tuesday. Notice his “Shadenator” shirt, which Julie Creus made him after his very first stroke in San Antonio, in July 2011. It has buttons down one whole side, so we don’t have to put the shirt over his head.

Shade was discharged yesterday around 12:30 p.m. The night before went smoothly for him, mostly sleeping. He was so out of it, he didn’t even feel when they removed the catheter. I wince just thinking about that. Aitza stayed with him and had to sleep on a recliner that didn’t recline all the way. Luckily, she’s the size of a hobbit, so she curled up like a cat and slept just fine. If I had been on it, I would have looked like Buddy the Elf with legs and arms hanging off the ends.

We brought Shade back to the hotel after discharge and he slept in the hotel for a few hours. Then we took him for a ride in the car to get some fresh air and let him hunt a few Pokémon. He’s been unable to feed his addiction for two days and Pokémon just released a new feature called Research, which are like missions to collect certain Pokémon or engage in battles. It was a good hospital release gift for him, but he did criticize the city of Durham for having very little Pokémon activity. Guess he’ll never move here.

Shade didn’t have much pain yesterday, but today his leg is aching, especially when I help him stand up to transfer to his wheelchair. His jaw and lip feel fine, except for the one time I helped him out of bed and banged his face against my shoulder. Dad is a clumsy ox. He’s only taking Tylenol for the pain. He had Oxycontin right after the surgery, but he doesn’t need that level of pain management anymore. (Or addiction. Pokémon is enough.) The doctor also prescribed Doxycycline for his acne. As acne is really just a skin infection, the surgery scars will heal much better if his face clears up. No need to further irritate healing skin.

The Courtyard Marriott hotel where we are now staying is lovely. Compared to the crack-house accommodations at Quality Inn, it’s the Ritz. We’re on the third floor overlooking the fire pit and pool. It’s peaceful and the hallways do not smell like farts and pot smoke.

However, yesterday there was a group of motorcyclists, maybe 100 people, checked into the hotel. They were having a rally during the day, and the parking lot was full of shiny bikes roaring back and forth. Then at night it was time to party … around the fire pit right below our room. They pulled out speakers and blasted music. They were laughing and talking and yelling. Bikes were revving in the parking lot. I kept looking out of the window, kind of wishing I was down there with the party, as they had beers and Jell-O shots and mason jars full of dubious liquids. But I was busy writing some articles, and plus we had to get Shade ready for bed. Doctor’s orders are to brush his teeth, but don’t go up into the lip where he has stitches. Then he has to rinse his mouth multiple times with salt water to keep the area clean and help the healing process. He’s also not yet ready to roll himself to the bathroom, so I help lift and lower him from bed to bathroom, from bathroom to bed.

We finally got Shade prepped for sleep, but the hubbub downstairs irritated him. Aitza put an earplug in his right ear, but she couldn’t on the left side where the incision was made. So he had to suffer the noise with a pillow over his head.

The party petered out by 9 p.m. I assume the revelers moved the scene to some local bars and restaurants. I went down shortly after to have a beer by the fire pit. There were four guys left. One of them—a six-and-a-half foot, 350-pound monster—was passed out in a chair. His buddy was wiping down the front of his soiled shirt with a towel. Then the three semi-sober guys roused this drooling linebacker and managed to lift him out of the chair. They corralled him, one on each side and one behind, as he shuffle-staggered toward the hotel lobby door, and right by where I was sitting. Each shambling step involved a stop and a glaze-eyed wobble. At one point he loomed right over me, and he swayed like a tree hewn by lumberjacks. For a second I envisioned a river of vomit exploding from the putrid reservoir in his guts and dousing me head to toe, then his bulk toppling, dragging his three helpless friends to crash down on me and crush me to death. A horrific, malodorous way to go, but my funeral would be hilarious. However, his boys kept him upright and he shuffled inside … hopefully to bed and not on a motorcycle.

I was supposed to leave on a flight this morning as Mayan is back in Orlando and has school tomorrow. He’s been staying at friends’ houses over the weekend. But last night by the fire, I was thinking that I couldn’t leave Aitza by herself to wrestle Shade back and forth for three days in the hotel, in the car, to the hospital and finally to the airport on Tuesday. I flew up here on a standby flight, which was easily changed through Virgin Holidays, Aitza’s company. So now I’m staying until Tuesday. Mayan will stay with his friend or my brother. He’s been so independent lately and spends so much time hanging with friends that we barely see him in the house anyway. Teenage life.

Happy Easter everyone. Remember to bite the ears off the chocolate bunny first so it can’t hear where you hid its eggs.happy-easter11

Short and sweet update

IMG_4328

Shade gives a thumbs up after surgery.

The surgery was a success. After five hours of waiting, Dr. Marcus came out all smiles and said it couldn’t have gone better. The first half of the surgery involved pulling a nerve out of his calf. The second half was inserting it in his face. Shade had three very nice thick nerves in his left cheek from which to choose. Dr. Marcus picked the largest one and grafted the harvested nerve to this. Then he snaked it under Shade’s nose to the other side. When we finally were allowed in to see him around 6:30 p.m., he was still knocked out. He didn’t fully awaken for another two hours, though at one point in his daze, he did mumble that “Dad was f-ing annoying.” No big secret there. Around 9 p.m., they moved him to his own room on the sixth floor and was finally able to drink an apple juice and watch American Ninja Warrior.

Shade has felt no pain so far, despite having his calf, cheek and lip sliced and stitched. However, he did keep thinking he had wet himself.  He’s got a catheter and he was feeling the sensation of eliminating. We’d tell him he was fine, that it was all going in a tube to a bag, and that he was all dry. But thanks to a combo of his anethesia and his short term memory loss, he’d quickly forget and say again, “Oh man, I think I peed myself.” This will be a constant loop until the tube is removed.

Good news. My cousin Craig read about our cruddy hotel situation and cashed in some Marriott points to get us a room at the nearby Courtyard, which in comparison is like Downton Abbey. Thanks Craig. Aitza is sleeping on the recliner couch in the hospital room with Shade because she’s mom and that’s what moms do. If all goes well, Shade can leave the hospital and they can stay in the hotel room tomorrow.

I’m keeping this one short because it’s time for bed. More tomorrow.

Doctors, Diners and Dumps

The line in front of Shade’s ear is where they will make the incision to insert the harvested nerve. the writing says “normal.” The doctor forgot to but “ab” in front of it.

Travel day today. We flew in from Orlando to Raleigh-Durham, departed at 9:30 a.m. I was on standby, but the flight had 30 empty seats so the attendant sat us all together and gave us the seats right behind business class. More legroom. And we boarded first, so no slow shuffle to the back of the plane.

When we got to Alamo and handed our reservation to the attendant, he traded up our economy car for an SUV for free. Said he thought we would need the extra room for the wheelchair. Great guy.

This is one of the benefits of traveling with Shade. People like to upgrade him. Unfortunately, it didn’t work with the hotel. We’re at what Aitza has dubbed the No-Quality Inn. It’s awful. Carpets from 1962. Sagging popcorn ceiling where a previous leak had swelled the stucco. The hallway smells like stewed mildew. The bathroom door is too narrow to allow a wheelchair, so I have to wrestle Shade through the door every time he has to take a whizz. It is better than a motel we once stayed at in Boone, NC, which overlooked an empty pool full of stuffed trash bags, a rusting grill and a foot of green sludge that seemed to have grown tentacles. Suspicious parking lot deals carried on into the wee hours. I believe they had hourly rates. That was the worst hotel we’ve ever suffered through. This is a hair better. But what it lacks in basic living conditions, it makes up for in descriptive storytelling potential.

We had time before our 2:30 p.m. appointment to stop at Elmo’s Diner – a bit of a hometown institution in Durham. Great biscuits and gravy and super-thick chocolate shakes. Shade scarfed down as much food as he could today because he won’t be eating solid food for a while. Fasting tomorrow, liquid diet for a few days, and then soft, mushy food. Savor that bacon cheeseburger, Shadenator!

At our doctor’s appointment, Dr. Marcus walked us through the procedure. After Shade is knocked out, the doc will make two or three small incisions in Shade’s left calf to harvest about 16 to 18 inches of nerve. (The thought makes my sphincter tighten.) He’ll then make an incision along the front of Shade’s left ear and a bit down the jawline. The nerve will be attached to live nerves in this cheek. Then using a very narrow “feeding tube,” he’ll snake the nerve along his upper lip. An incision will be cut at the inside top of his lip to help feed the nerve along. And then they’ll stitch him all up and let the nerve start taking root. The procedure will take about four to five hours.

In nine months, when the nerve has branched out sufficiently, we’ll return for Shade’s follow up surgery – a muscle graft. Dr. Marcus said he’ll wait until then to do his eye brow lift as he’ll be working on the right side. This time the surgery is all left.

We are currently prepping for bedtime. We have to be at the hospital at 9 a.m. We’ll keep you updated during the day on Shade’s Progress Facebook page, and I’ll give you an entire rundown tomorrow night on the blog.

Smile time’s a comin’

Shade sporting the Tarantino Suitcase, a hitman’s goatee that we had to fill in with Sharpee to connect the stache to the beard. Universal policy. It lasted about a week until Aitza put a stop to it because all his white sleeves were stained gray from where he wiped his face on his sleeves. Doh!

Shade is embarking on a new journey. This is sailing across the uncharted Atlantic to search for a new world. We’ve booked a surgery for him. Nerves harvested and grafted. An electric journey across his face. It’s going to do wonders for his smile.

On Thursday, at 2:30 PM EST, March 29, 2018, we travel from Orlando to Raleigh-Durham for Shade’s appointment with Dr. Jeffrey Robert Marcus, MD of Duke University. He’s one of the top Plastic and Reconstructive Surgeons in the country. They did various scans and tests and determined he was a good candidate for a nerve graft. Of course, I told you all this on the Facebook post for his fundraiser so sorry to be redundant.

So this Friday, he’ll be prepped for surgery. After he’s under, Dr. Marcus will remove a nerve from his calf and graft it from his left cheek to his right. They go in under his lips and insert the nerve.

They’ll also lifting his right eyebrow and lower eyelid. It doesn’t close properly and tends to droop, causing his tears to run out and his eyeball to dry. It’s painful and we have to constantly keep his eye lubed and taped at night. The stitch will pull the corner of his right eye up so it holds the tears and potentially allows him to close his eye.

Then comes the recovery period.

I’ll keep you all informed about Shade’s Progress during this procedure. Here’s to symmetrical smiles and blinking eyes.

Shade’s Employed!

Shade signs the paperwork to become a Universal Employee.

On July 14, 2017, on the 6th anniversary of Shade’s stroke, and just a month plus after graduation, Shade signed the papers to make him an official Universal employee. Orientation starts next week, and then he’s knee deep in Lard Lad donuts. Actually, he’ll be on restaurant row in The Simpsons land … or island … or whatever creative term they use to name the area.

Here’s a Shade fact: When he was kicking on Aitza’s cervix in the hospital, I said to Aitza, “You better hurry and get him out of there because the Simpsons is coming on at 6:00.” Sometimes I’m a jerk. Just sometimes. Well, Aitza complied and squeezed out a feta-covered Gollum fetus that we called Shade, and after he’d been spanked and shaken and given the rough towel treatment, we were back in the recovery room. Aitza was sipping a Guinness. Daddy was gulping it and holding Shade in his arms, and he grabbed the remote and turned on the TV and low and behold, right there on the screen was The Simpsons opening sequence. And Shade’s crystal eyes gazed upon it. And it was good. (Cue angel song!)

He also climbs trees! What can’t he do?

18+ years later, he’s come full circle. He’ll be a greeter in the Simpson restaurants. (Editor friends, I know I started a sentence, let alone a paragraph, with a numeral. Forgive my blogging.) Shade’s got potential to acquire new skills and meet new friends and learn what he’s capable of. Stay tuned …

Previous Older Entries