Hanging in the hotel

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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

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Short and sweet update

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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.

Double graduation

Good news. Shade had two graduations within a week. Last Friday, he walked on stage to receive his high school diploma at Central Florida Prep, one of the most beautiful graduation ceremonies we’ve ever seen. With a graduating class of six students, each student was highlighted in words and pictures. A truly touching event.

Then this Wednesday, Shade graduated from neurosurgery. In other words, his angiograms show that his AVM is completely gone. Dr. Trumble said that he now has a normal brain. Well, as normal as a Crampton brain can be.

Shade has been working hard to regain his lost progress after the latest stroke nearly a year ago, last May 28. We often go to Planet Fitness, where he uses the weight machines to build up muscle in his left arm and leg. He’s also getting regular PT, OT and ST. Plus, our good friend Danny has helped him do this:

It’s a little blurry, probably because Shade keeps melted Tootsie Rolls in the same pocket as his phone, but you get the picture. Next step, walking.

Goodbye Dens Sapientiae

Ice pack after yanking Shade’s teeth

Shade had his wisdom teeth removed today. They yanked those suckers right out of his skull this morning. Now he’s on a soft diet of jello, yogurt and bloody gauze.

The jerk that named your third molars wisdom teeth — Dens sapientiae — was probably around before the birth of Jesus.  It’s like the lamest joke from pre-Christianity’s worst hack comedian. That guy was a total asine sapientiae — wise ass.

Wisdom teeth, like every other vestigial body part (tonsils, appendix, male nipples), are useless and bothersome, and often have to be removed before causing serious damage. My wisdom teeth got pulled out when I was about Shade’s age. Both Shade and I still have our appendix, tonsils, and nipples, which have yet to do serious damage, though they could still go off like unexploded bombs at any time.

The unwise part of wisdom teeth is that they don’t come out until you actually care about what your teeth might look like, i.e. when you’re a self-conscious teen. Then they crowd your front teeth, screw up your smile, and cause all sorts of dental problems until they’re forcibly removed like a bunch of drunk redneck party crashers at your daughter’s Quince Años celebration.

They’re annoying buggers that should have faded out of the gene pool after the first snooty Cro-Magnon turned down the Neanderthal’s mammoth jerky for a decent filet. And yet they keep popping up. Except in Aitza, who was born without them. What the hell, Aitza? You couldn’t pass those genes down to our kids?

Meanwhile, Shade spends his second week in the last month of 2015 in bed with an aching noggin. Here’s hoping that 2016 gives him a break from surgeries.

Recovery update: Tired

Shade’s friend Cody came over yesterday to hang with him for a bit. They did the regular post-brain-surgery boy stuff. You know, noogies, wrestling, roundhouse kicks to the head. Okay, maybe they just sat in his room and talked. He enjoyed it, but it also wiped him out. By six p.m. he had passed out on the couch.

Today he’s been really feeling the effects of the Gamma Knife rabbit punch to the brain stem. He’s been lethargic and very sensitive to light and noise. He spent all day lying in his brother’s room with the curtains drawn. (Mayan’s room is darker.) He’s also been dealing with a nasty throbbing headache. This might be from the swelling in his brain, or it may be from the four clamps that were screwed into his skull to hold the Gamma Knife helmet in place. (Can’t have a wobbly helmet during brain surgery.) The skin around the clamp areas is very sensitive, and he doesn’t like even a soft pillow touching the areas. Aitza’s had to do some creative pillow arranging so he can rest.

We’re going to keep him out of school for a bit until he’s feeling a bit more energetic and clear headed. He was supposed to have midterms but his noggin couldn’t handle that right now. Just like a high-school boy. He’ll do anything to get out of a test.

 

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