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.

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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.

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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.

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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!)

 

 

 

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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.

Hero’s Journey

Shade is home after five weeks in multiple hospitals. After a second stroke, and then a third stroke. After multiple sessions of MRIs and MRAs and angiograms. After weeks of intensive therapy at the best damn therapy hospital I’ve witnessed. (We’ve seen a few, and no disrespect to the other fine establishments, but Brooks was extra superduper special with ice cream.)

Shade had gotten in the rhythm of six sessions of therapy daily with an army of occupational, physical, speach, music, and recreational therapists, and their assistants, interns and volunteers helping him through the tough job of getting his left side to wake back up. Not to mention the fantastic doctors, nurses and techs checking up on him and the meal staff taking his order and delivering his three hot meals to his bedside. Shade became a veritable celebrity patient amongst the staff. On his graduation day, when he gave his speech, it was accompanied by laughter and tears from the gathered crowd. Employees kept popping into the room the last day to say goodbye.

And then he was released. Everyone take a deep breath and sigh. It’s all over.

Except for the part where Shade has to get used to living in his house, which he used to be able to navigate easily by scooting, crawling and, most recently, walking. Except now he can’t use his left arm. Despite the great strides he’s made on that side, it’s not enough to help him get down the stairs, even scooting on his bottom. He can’t raise his arm above his shoulder or support himself on a handrail. He can very slowly close his hand, but he cannot maintain even the slightest grip and opening  his hand is extremely difficult. Thus, no picking up anything, even a sock. Forget tying a shoe. His left leg is a bit better than the arm, though it’s still much weaker than it should be. It tends to drag when we assist him with walking and he often rolls the ankle or step on his other foot. He doesn’t have the strength or balance to stand. We’re planning lots of therapies to work on this, but it’s a road that disappears into fog. We don’t know how it will end.

After the first stroke, and the recent second and third strokes, he never complained or questioned the reasons. But the day after Shade and Mami got back home from Brooks, Shade came to the realization of what he’d lost after putting in so much time and effort to recover. For the first time ever, he turned to Mami and said, “Why did this have to happen again?” He didn’t dwell on it, but the thought is now lingering there.

I wonder the same thing. My big brain tells me that this happened by chance. Random mutations in some tucked away DNA strand in the embryo that became Shade. The small flaw in the architecture that blew it up. Like the exhaust port on the Death Star. (The incompetent space engineer that designed that beauty got fired. Literally.)

The part of my brain that believes in the force and elves and the Greek gods and awesome (Adj. inspiring awe) stories wants to blame some invisible sky man or some virulent spirit or a glitch in the Matrix for the barrage of shitty luck that’s plagued Shade. After all, a story is always better with an antagonist. But blame wouldn’t help the situation at hand.

Shade’s at that point in the hero’s journey where he faces the abyss. He’s overcome great odds only to be thrown down hard, his lowest point, where it would be easiest to give up. Like when Luke got his arm lopped off by his daddy (Noooo! That’s not true. That’s impossible!) and then fell into the shaft and hung on with one arm for dear life on the ass end of Cloud City, questioning everything he ever knew and waiting for the worst. Sure, his arm was gone, but it was the damage to his psyche that threatened to make him quit.

Guess who got Luke out of his predicament. His friends. After sending out some force instant messages (Come get me), he got picked up by Leia and Chewie (and Lando, too), and they got him back to working order (with some robotic assistance.) And then he saved the galaxy … for a while.

That’s what Shade needs now. He needs good friends who are willing to spend time with him, exercise with him, play games, or just chill. We’ve got the therapy lined up and the doctor’s appointments scheduled. If you can help with the friendship part, that would help immensely.

(By the way, thanks Cody for coming over today and hanging out and all his friends that Facetimed him in the hospital.)

Bye Bye Mellow

Mellow in shoe

Mellow in my Boot

We lost our sweet little kitty today. Mellow was her name and she was only one year old. Beautiful colors, kind of an electric bluish-gray on white. She was a petting cat. She’d lie in Shade’s lap for ages while he stroked her. She could have been a therapy cat. She was very playful. Mayan used to kick his mini-soccer ball around and she’d play goalie, jumping way up in the air and landing on it. She’d ambush our legs, too. At those times we named her Menace. The lizards didn’t like her much. She’d bring three or four in the house daily and bat them around. We’d find the desiccated carcasses under our grandfather clock, as if it were a lizard mausoleum. So she also earned the name Malice.

I woke up early, around 5 a.m., and Mellow was lying by my side. I stroked her in my half-sleep. She had hair as soft as lamb’s wool and a bushy paintbrush tail. Then I got up. Around 6:30 a.m., we could hear the crashing glass of the recycling truck a couple streets over. Aitza mentioned that we’d forgotten to take out the trash, so I lifted the full bag out of the kitchen and carried it to the roadside. That’s where I found her. Her bounding was cut short by a car tire. Our road has notorious speeders, and I’m constantly warning the kids to watch when they cross the road. But you can’t warn a cat. Even if you could, cats don’t give a damn what you say. At the very least, it looked like it was a quick and painless death. No suffering.

Mellow with the Family

Mellow with the Fam

The kids still weren’t up yet. We chose to hold on until after school to tell them. Death is a hard thing to take with you through the day, especially if you’re a child, especially for Mayan. Ever since Shade’s stroke, Mayan freaks out whenever he has a headache or a cold. “Am I going to die?” he asks. “No, you’re fine,” we say. Shade doesn’t have the same fears. He’s already thumb wrestled with Death and won, though he took a few bruises in the battle. If he had quicker reactions and better memory, he’d make a great anti-terrorist operative because he doesn’t flinch at things that make others go “Eeek!”

When we told the boys, Aitza and I were bawling, too. I think I had a few flashbacks from 2011. Life is so fleeting that one moment you’re stroking your kitten and the next it’s lifeless on the asphalt. Or you’re talking to your children over the phone as they vacation in San Antonio, and the next day one of them is in a coma. Or your mom is working in the yard one day and has colon cancer the next.

Mellow and Shade

Mellow and Shade

It’s nerve wracking because death is always around the corner, but it rarely sends a message that it will be showing up. It pops up and punches you in the gut. I try to be Buddhist about it, meditating on the impermanence of everything, the inevitable entropy of the universe. That’s easier to do when you’re not connected to the dying. Right now I feel as if my soul is being stretched like a rubber band to the point that one little tug more and it will pop. And that’s just for our cat.

But it works the other way, too. You’re walking in from work and you hear a meow in the bushes and there’s a kitten, who becomes part of your home. (That’s how Aitza found her.) Or you’re with your wife watching Armageddon in the theater and the movie’s making her sick and that night she does a pregnancy test and finds out you’re going to be parents. (That was our first glimpse of Shade.) Or your child is born and you put him in your mother’s arms, and that keeps her alive for another nine years until the cancer finally takes her. (Shade gave her the drive to hold on.)

Life and death, they’re inextricably linked. Even the pain of losing someone to death is merely a reflection of the love you felt for that person (or kitten) in life. How sad for the person who has no one for which to mourn or to mourn them when they die. That’s a lot of loneliness.

Mayan and Mellow

Mayan and Mellow

We told the kids in the late afternoon when they got home. Mayan was shredded. Mellow was his cat more than any of ours. He had to retire to his room and cry it out. Conversely Shade said, “No more Mellow? That sucks.” Then he made a joke about Mellow being the color of asphalt. Like I said, death doesn’t get under his skin.

I had already dug a hole in the back yard, put Mellow in a cardboard box, and carved and painted a little marker. We walked out back and lowered kitty into the ground. Our other cat, Cheetah, came up to look. Cheetah hated Mellow. There’s a conspiracy floating around our family that she pushed Mellow into the road. She has been unusually friendly today, as if she’s trying to get on our good side and cover her tracks. The investigation is pending.

The ceremony was short and sweet. I threw a palette over the gravesite so raccoons don’t dig her up. (That would be double traumatic.) We’re inside right now, looking at pictures and videos of her. If you’re not a pet owner, that might sound silly. Just think of her as a little furry person who touched our lives. That’s all any of us can hope to do.

Zombie Taco Cat

Can you hear that howling? No, that’s not Aitza after Shade accidentally steps on her mangled, detached toenail. That’s the sound of Halloween in the air. I can feel my were-cells starting to mutate.

Not quite finished Zombie Taco Cat

In preparation, I’ve started constructing Shade’s costume. In true goofy fashion, Shade decided to be a Zombie Taco Cat. This freak-show abomination, created in my own basement laboratory (yes, I have a Florida basement), is the genetic splicing of a zombified human, your common domestic Felis catus, and a savory, crunchy Mexican entree. I’ve already applied the giant crispy tortilla shell to his spare wheelchair. That took a lot of tortillas. I’m going to wait until the night before Halloween to cook up the 50 lbs. of ground beef to pour on him. Otherwise, he might start to stink.

Talking about Halloween, our Indian Guides program is involved in our Halloween carnival tonight. We have tons of games, bounce houses, silent auction, cake walk, an extremely scary haunted house, and this year, a special storytelling show with Chief Jack-O-Lantern. (Yes, I am Chief Jack-O-Lantern.) My show will have stories, songs, jokes and interactive pieces for the kids. Highlights will include an Interview with a Zombie and The Man Eating Chicken! And remember the song “Great Green Globs of Greasy, Grimy Gopher Guts”? That’ll be in there, too.

I was asked to do a show as an alternative to the haunted house because allegedly we scare the poop out of little kids. Last year, a mom came up to one of the dads, Tony, and screamed at him for psychologically scarring her kid. I’d say that’s a resounding endorsement for our haunted house. This year, we’re doing a haunted circus theme with tons of evil clowns. Everyone loves clowns, right?

If you have kids, come to the Dr. Phillips YMCA tonight from 6:30 p.m. to 9:00 p.m. for a terrifyingly fun time. (Yes, that was a commercial.)

Tried to make me go to rehab

We’re making a few changes in Shade’s rehab. The schedule was a bit overwhelming with school, so we are cutting his therapy down to only Tuesdays for PT and OT. His speech therapy has really become memory practice, and he’s getting plenty of that learning about conquistadors and algebraic equations at school. Once Shade gets nerve graft surgery in his face, we’ll look into speech therapy again. In place of his lost therapies, we will be hitting the YMCA gym more often. He’s pumping iron now (machine weights, not free weights), and I think he enjoys it more. It makes him feel like a teen working on his body, not a tot being forced by a stern matron to do stretches and exercises. The YMCA doesn’t make a person feel like an invalid either. (Although after doing their cardio-fitness workouts, I often do feel like one.) Shade will also restart hippotherapy. (Which, by the way, couldn’t be possible if the conquistadors hadn’t brought over the first horses to Florida in the 1500s. Thanks, Ponce de Leon.)

Camping season is starting up soon, and the boys are excited. I was hoping Shade would be walking by now so he could have a bit more freedom at the camps but we’ll make do. I’d like to get a 4-wheel drive wheelchair for him to crush through the brush, but I don’t think they make all-terrain handicap assistance vehicles. By the way, our Indian Guides tribe is named for the Calusa tribe, who just happened to be the demise of Ponce de Leon. Thankfully, they didn’t kill all the horses.

Keep in mind that Shade’s Super Stride 5K Fun Run is this Saturday, Sept. 15 at 7 a.m. at Blanchard Park. Park at the YMCA in Blanchard Park. By the way, the first 100 people to show up will get T-shirts with Shade’s Super Stride logo. We’ll also have water bottles with the logo on it and other goodies and giveaways. Thanks to all who are helping out and donating to our cause. Don’t forget to wear your cape! There will be a special appearance by the most delicious super hero of all, The Baconator!

 

Shade’s school progress

A couple weeks into Shade’s eighth grade classes and he seems to be adapting well. Many of his teachers have mentioned his added participation. His history teacher, Mr. Aldrich, says Shade is very involved in class, raising his hand to answer questions posed to the class and answering correctly. He’s taking initiative, which is fantastic. We are seeing a bit of this at home. Sometimes, without prompting, he asks us if he can work on his homework. Unfortunately he has a 15 to 20 minute window of concentration before he gets  frustrated and shuts down. He’ll switch from completely engaged to distracted and confused. Then he starts snapping about unrelated little distractions, like background noise or not having a sharpened pencil. On his history homework this evening, we got through one question and were just starting a second when he began griping and went upstairs in a huff (with me tagging along directly behind so he didn’t misstep and fall downstairs). Thus, his homework is always in the process of being finished. It’s an extremely tedious process to study for anything. That’s when Aitza takes over. She grabs Professor Cheetah the cat and somehow will retell the Spanish colonization of Florida in the 1500s through a feline’s perspective. She’s a much better teacher than I am, and she has the patience of the Dalai Lama. My patience level is closer to Daffy Duck.

At the YMCA, Shade is kicking it up a notch. Ashley and Lindsey, his trainers, have started him on the FitLinxx machines so he can work his muscles and keep track of his progress. I foresee a big jump in his strength as he’ll be focusing on his upper and lower body on different days and upping his weights regularly. Stepping up to an adult-level workout should boost his morale. Next step: Getting his pecs so big he can make them dance.

Keep in mind, Shade’s Super Stride 5K Fun Run is in two Saturdays (Sept. 15). I’ll be practicing for the 5K this weekend by running in the Dirty Foot Adventure Run, one of those muddy, painful obstacle courses made for people with no sense. If I survive, I’ll see you all at the 5K. If I don’t survive, I’ll have Aitza push my coffin down the course. I’ll make sure Aitza dresses my corpse in a unitard and cape so I stick with the Super Hero theme.

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