How to freeze time

All you would-be wizards, mad scientists and time lords, get your notebooks out. I’ve discovered the secret to freezing time. First, get a hotel on the outskirts of Durham near nothing worth visiting. Second, make sure you do not have a car so that any journey away from said hotel is a bit of a hassle, thus inducing you to stay put. Third, in your room, draw those thick curtains that block out all sunlight. Fourth, have plenty of snacks and drinks stockpiled in your mini-fridge. Fifth, make sure you share the room with someone that needs a lot of bed rest. If you manage to maintain these five steps for an extended period, time itself will grind to a halt. Night and day will cease to exist. Presumably, if you can keep this going, you will not age though you may feel like you’re a thousand years old. Side effects may include a trance-like state involving sitting on the edge of your bed and watching 1990s reruns with repetitive insurance commercials and/or a desire to smother yourself to death with hotel pillows.

Of course, for Shade, the hotel stay was a welcome respite from the noisy, smelly, glaring confines of the hospital ward. He basically hibernated for three days while his face healed. His cheek has swollen up a bit, which was expected. Mr. Chipmunk hasn’t quite released his grip. But Shade has experienced little to no pain. He doesn’t even take pain pills. Meanwhile, I’m popping Ibuprofens like candy because I was foolish enough to break my hand a week back while in Denver. (Long story short: Some malevolent no-good-nik attacked my fist with his nose.) I’ve been hunched over the keyboard two-finger typing these updates like a stereotypical beat cop writing up the day’s arrest reports. Please forgive any typos.

Shade’s first meal out

The day Shade was released from the hospital, Dr. Phillips referred us to Kathryn Walker, a smile therapist. (Just when you thought there were no new job titles left!) She works with patients who have facial procedures or suffer setbacks in facial operation to help them get back their smile. We weren’t there long as Shade couldn’t perform the therapy yet. He needs a couple months of healing first. But Kathryn did give us a list of smile-building exercises, which I have deemed “yummy therapy.” To strengthen the right side of his face, she suggested chewing Bubbalicous bubble gum on that side. Aitza recommended watermelon flavor though I’m a traditionalist and believe he’d get better results with bubble-gum flavored bubble gum. (Perhaps I’m just boring. The other evening, I walked down to Cookout, a local burger joint that offers 40 flavors of shake. I panicked at the overwhelming selection and just got vanilla.) Another therapy involves moving a lollipop from one side of his mouth to the other, starting with a big BlowPop and working his way down to a tiny Dum-Dum. To me, however, that sounds counterintuitive. No one wants to graduate from BlowPops to Dum-Dums. You learn that during your very first Halloween candy-trading session.

After an eternity at the Hilton, we’re finally heading home. (I’m writing this on the plane.) We stopped by Dr. Phillips’ office first and he gave Shade a quick examination and took photos for before/after comparisons. The swelling is causing a bit of eye droop, but the doc says after the swelling subsides, he expects Shade’s face to be almost symmetrical. Next, step: Getting a symmetrical smile. Bring on the lollipops!

 

The Lost Island of Atlantis

“And in a single day and night … the island of Atlantis in like manner disappeared in the depths of the sea.” That was the ancient philosopher Plato’s description of Shade’s recent facial reanimation procedure, during which Dr. Marcus and Dr. Phillips removed excess fat and skin from the right side of Shade’s face. Skin Island has vanished, much to the chagrin of the tiny monkey’s living in the curly coconut trees thereabouts. Its whereabouts have become the grist of speculation, superstition and legend.

In other words, Shade’s surgery was a complete success. Dr. Phillips explained that they did not have to touch any muscle in the process; the excess skin from the graft was completely removed; his natural cheek skin was stretched over the muscle and glued down with a biological glue; and Shade was left with a single thin scar along his jawline. Presumably, once the swelling reduces (Mr. Chipmunk still has a bit of a grip), his scar will be barely noticeable.

So symmetrical!

The surgery was quite short – two and a half hours total – a breeze compared to his last procedure, which was ten hours. Upon his waking, I took a picture of him from the front and his face is nearly symmetrical. I showed the pic to Shade, who in his post-anesthetic delirium, slurred, “I look like a fucking super-model.” Yes, you do, Shade. Yes, you do.

 

Unfortunately, the hospital was packed so there were no private rooms available and Shade and Aitza had to spend the night in a post-op ward with only one of those thin shower-curtain dealies to block out light and noise. Little use with those glaring florescent hospital bulbs and the grown man next door sobbing uncontrollably. (Not sure why, but he did all night.) Double the problem that the cubicle was right next to the nurse’s station and the bathroom, so they had the pleasure of listening to the night shift cackling, giggling and flushing overflowing urine jugs all through the wee hours. As if to taunt Shade and Aitza, the computer monitor in the room kept flashing a screensaver with a kid doing the international “Shh” sign with his finger and a message saying: “Please keep it quiet while healing is happening.” Yeah, right.

Oreos make it all worth it.

When I returned to the hospital this morning, Shade and Aitza had the bloodshot thousand-yard stares of combat survivors. But they’re war veterans by now and shook it off quickly, especially after I brought Shade some Oreos. After all, it was time to leave the battlefield and return to the soft, quiet beds of the Hilton, where Shade is now snuffling gently amongst a pile of fluffy pillows. The next few days will be devoted to rest and recovery until his final appointment on Friday and then home.

 

 

Goodbye Mr. Chipmunk

Shade, Aitza and I are back in the lovely township of Durham, NC, for Shade’s final (hopefully) procedure at Duke University Hospital. We flew up yesterday (My third day in a row in an airport. Oh, the glorious world of travel.) and got upgraded to Comfort, which means our legs were not folded up under our chins for the 1.5-hour flight. This is the Shade advantage. People like to give him stuff. He said he wants to monetize this situation by selling wheelchairs outside the airport but I explained that then the pre-boarding line for people with disabilities would have 200 people in it, so it would backfire on him. I like his entrepreneurial spirit though, however misplaced.

For those new to Shade’s medical journey, a recap: After 12-year-old Shade suffered a debilitating stroke on July 14, 2011, he had right-side facial paralysis (among many other traumatic issues), leaving him with half a smile, an eye that wouldn’t fully close, and some serious lip and cheek chewing. Imagine the feeling when a dentist has numbed your face for dental surgery, but it lasts for the rest of your life.  With no movement, his muscle deteriorated to the point that his cheek was flat. After much research, I found Dr. Marcus, the nerve/muscle graft guru known here as the Smile Doctor, whose specialty is facial reanimation, bringing back life to paralyzed faces. So last year he took a nerve from Shade’s leg and grafted it from his left cheek across his upper lip to his right cheek like an extension cord. He let that get cozy for 6 months and then last December grafted muscle from his thigh into his cheek. Because the skin on his cheek had tightened so much, Dr. Phillips, his plastic surgeon, had to add skin from his thigh as well to cover the extra muscle and fat added underneath. I just found out the graft area is known as the skin island, well named as the pale thigh skin seems to float in a sea of his ruddy facial skin.  I guess that makes the weird thigh hairs growing on this island the coconut trees. He ended up with what Shade deemed “a chipmunk cheek.” Between that and the scars and the skin island, he got his share of stares, but Shade is impervious to stares. It’s one of his super powers.

We checked in this morning to the hospital, and both Dr. Marcus and Dr. Phillips visited. They were all grins at Shade’s grin, which is getting more symmetrical as the right side of his face wakes up. Dr. Marcus was happy when Shade said he gets pins a needles in his face, another great sign of the new nerve and muscle coming to life, and he was pleased with Shade’s nasolabial fold, your vocabulary term of the day. That’s the groove on each side of your nose that go to the corners of your lip, which deepen as you smile. Shade hasn’t had one on his right side for years.

The doctors consulted with us about this procedure, which thankfully will be much less invasive. (The last one took months of healing including multiple stays in the hospital over Christmas.)  Dr. Marcus’s plan is to debulk the area under the skin. I guess the last procedure was the bulking part. They put extra fatty tissue under the cheek to ensure he’d have enough matter underneath, after the swelling subsided, to make the sides symmetrical. Had I known this term, his cheek would have been nicknamed the Incredible Bulk. Oh well, missed opportunities.

Dr. Phillips will next remove the skin island, or at least as much as possible. The grafted skin over the site is quite loose, and he said he’ll trim it little by little until the area is covered properly. At worst, Shade may have a small strip of grafted skin along his jaw line. We’re hoping for full removal because that patch is hell to shave.

Shade went into surgery at 11:08 a.m. I’ll update you, post-chipmunk removal.

 

 

 

Home slice

It’s been a crazy couple weeks since the post-Christmas hospital mayhem with hospital stays and infections and wound cleaning/packing/wrapping/antibiotics/fluids/pee bottles, okay, you get the picture. Shade’s been a trouper through the process. The boy never complains, though he does make me wash my hands a lot. I’m a scratcher.

Ready for bed on the comfy couch.

For the past weeks, Shade’s slept down stairs on our comfy couch, which is usually my nap paradise because it’s thick and comfy and it sucks you in like you’re Boba Fett gobbled by a Sarlacc. (Nerd alert!) The couch’s only downfall is that it’s a bit “sucky.” It feeds on left socks and remote controls, and there’s hidden candy corns down there from Halloween 2009. And if you’re looking for your iPhone, it’s eaten a few of those, too.

We’re not sure why, but our homebound nurse care and therapies got cut. We’ve been doing therapy and wrapping his wounds ourselves on the comfy couch. Good job Arianny and Aitza are nurses. If you didn’t know, Aitza was a surgical nurse in Venezuela. She worked in plastic surgery. And Arianny follows in Mami’s footsteps. Her visit with us lasted a week. Together they made up a good schedule of cleaning and changing Shade’s open leg wound, while I gave them cheers and moral support and occasionally gagged because gross. I’m no nurse. I’m the guy that will make you a cup of tea while you’re squirting saline into that open muscle and mopping up any effluence. I call that Nurse Porn. Arianny and Aitza are always talking about the grossest stuff they experienced in hospitals, especially during dinner. I cover my ears and go, la la la, as they’ll regale an audience about the adventures of flushing an impacted colon while scooping from a plate of seven-layer bean dip. Or the time the had to remove a massive cockroach burrowed deep in a lady’s eardrum. Hwork!

But I had to overcome my fickle gorge and man up, because on January 5, Nurse Angel Arianny left for home in NYC, so Aitza took over and trained me with Wound Tending 101. I gloved up while she opened the packs of gauze and sterilized the tweezer. Shade’s right thigh now has a two-inch open gash that has exposed muscle but it’s healing up from the inside out as per doctor’s orders. It’s closed up a lot so far. You can see the healing day by day. Aitza had me remove, clean and repack, gauze and wrap the wound.

Oh, yeah, Aitza turned 35 again.

Then it’s goodbye Nurse Angel Aitza as she lollygags in London. Actually, it’s a work thing. On January 8, she was sent to the home office back in the UK for an important spy mission or something. So Nurse Vincent is on the job. I haven’t screwed up yet, which is good.

But back to the “no homecare” thing from before – Aitza’s been trying to get the homecare here and she was told that the homecare was revoked. We’re in a tornado of calls to various doctors and nurses and social services and (shudder) insurance to get the homecare and therapies reinstated. Yay, fun with bureaucracy.

Forgive the mess. We’re remodeling, too! Like we don’t have our plate full already.

Meanwhile, while waiting for Mami to come home, Shade and I have been sitting on the comfy couch, eating pizza and fried chicken and watching educational films like From Dusk to Dawn and Monty Python and the Holy Grail. Ni! Ni! Ni! (Nerd Alert!)

 

 

 

Let the healing commence!

Ah, home. No place like it, especially when you’ve been stuck in a tiny hospital room for over a week – after having your face sliced open and stuffed like a Christmas stocking with other parts of your body – being poked, prodded and probed every 10 minutes by doctors, nurses, med techs and elves, the latter a product of hardcore hallucinations from prescription opioids and sleep deprivation. I’m either describing a miraculous surgery or the plot to a serial killer movie.

Winner of the Bubble Yum bubble gum chewing competition

When last I wrote, Shade had just come out of surgery. Both Aitza and I were not prepared for the sight of our child’s face. The doctors had talked about swelling but the size shocked us. And the skin graft was also something unexpected. The surgeons came to the conclusion during the surgery that the skin was too tight and needed extra skin so they made the necessary decision to add skin. So when we saw the two-inch jagged strip of pale thigh skin down his face, we were both stunned. We fully understood the reasoning; we just were not prepared for the dramatic change in his features. Both of us questioned our choice to put Shade through this procedure. Was all this pain and deformation worth the end goal of Shade having a symmetrical working face? Was his situation so bad before that we needed to subject him to such pain and suffering? I mean, we’re making decisions for Shade, and he’s trusting us to make the right ones, but how can we truly know if it’s the right choice until afterward?

Such thoughts can drive a parent into a spiral of severe gloom because unless you’re clairvoyant, you don’t know what the end results will be for any choice you make. And after you’ve made the choice, you have to deal with the consequences if it turns out to be the wrong choice. Back in December 2015, when we chose for Shade to have a second gamma knife operation to prevent him from having a second stroke. We took the risk based upon the information we received. The result of that operation was that six months afterward, Shade had a second stroke from a burst blood blister formed by the operation. It completely debilitated his left side. All the progress he had made was lost. In fact, he was worse off than after his initial stroke.

So watching our son suffer from his latest post-surgery pain messed with our minds because we chose to put him through this. I feel for Aitza especially because she never left his side. She “slept” in a recliner chair by Shade’s bed every day and was with him through all his agony and hallucinations and despondency. She was with him when he became so severely depressed that he said none of his friends would ever want to see him again because he was deformed and he wished he was dead. She held strong through all those heart-breaking moments.

Shade shows how to work a jaw muscle.

Just to set you at ease, Shade is no longer depressed. We think the heavy drugs caused much of that. After he hallucinated about an old lady trapped under a car inside his hospital room, Shade himself chose to go off the drugs and manage the pain with just Tylenol. He lightened up afterward and was even able to laugh about his massive cheek. After all it’s so big, if he walked into a bubblegum chewing competition, the other competitors would take one look and swallow their gum. Chipmunks see him go by and carve statues to their new god, Cheekzilla, he who holds infinite acorns.

The doctors were happy about Shade’s healing and he and Aitza were finally released from the hospital and got to sleep all day and night in a hotel. The doctors had first said that Shade could only have liquids for a month, but they changed their minds and said he could have soft foods. Soft foods? Bah! After I flew back to Raleigh on Sunday, I got him some smothered chicken from Texas Roadhouse and he scarfed it up. He’s got a super cheek now. He could chew cinderblocks.

Hanging with the Clauses

Yesterday we had a last visit with Dr. Phillips the plastic surgeon. He reiterated that the swelling will subside over time. He also stated that there’s excess muscle, fat and skin in there which can be chipped away at a later surgery to produce a symmetrical visage, much like a sculptor might remove excess marble to create a masterpiece. He was very positive about the final results, which eased our stress.

As we were leaving Duke Hospital through the Children’s Center, the staff had set up a Christmas area with carolers, a Santa and Mrs. Claus, and cake and toys for kids. Shade got a picture with the Clauses. Then one of the happy elves gave Shade a stuffed bear and a gift card for Target. It was our first real Christmas moment this year and I cried like it was a Pixar movie.

 

Flight home

By 8 p.m. that night, we had hopped on a plane and made it home to Orlando, where Mayan was waiting to see his big brother. Shade got visits from Abuelita and Bubu (Aitza’s parents) and Uncle Darren late night and from Dadabob (my dad) this morning. And now I sit by his bed writing this while Shade scarfs up scrambled eggs and heals. The future will show if our decision this time was the right one, but now that the pain has subsided and Shade’s surrounded by family at home, we can at least be happy that the stress of the hospital experience is over for a while, enjoy the holiday spirit and focus on Shade’s progress.