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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Dramatic Plot Twist

Inside Fort Matanzas

Inside Fort Matanzas

In a movie, whenever the camera pans across a scene of natural splendor, you can expect something bad to happen. It’s a cinema trope. Make the protagonist comfortable, and then drop a boulder on him. Without conflict, story doesn’t exist. So if a director says, “Let’s capture this stunning snowcapped mountain range glistening in the sun,” you can guarantee an avalanche is coming.

Last week I took Shade camping with the YMCA Indian Guides at Princess Place Preserve in Bunnell, Florida, about 15 minutes from St. Augustine. It’s a 1500-acre parcel of bucolic Florida wilderness. I never liked that word bucolic. It sounds like a respiratory infection. However, I think it fits here as the park is home to historic buildings such as an old livery stable, equestrian trails, a huge salt marsh, massive live oak stands, and Florida’s first in-ground swimming pool, fed by an artesian spring. It’s the epitome of a Southern pastoral setting nestled on the shore of the Matanzas River.

Standing atop Fort Matanzas

Standing atop Fort Matanzas

During the campout, we visited Fort Matanzas National Monument, which guarded St. Augustine’s back door. It’s about 14 miles south on the Matanzas River. The approach is dramatic. We started on the nature path which passed the banks where Spanish soldiers slaughtered a few hundred lost French soldiers who had surrendered. That’s how the fort got its name, which loosely translates to “slaughter.” We took a pontoon ferry across the river toward the looming fortress, giving us a good look from an invader’s standpoint. Guards in traditional Spanish soldier uniforms walk about and explain elements of the three-story stone fort such as the big cannons pointing down river to stop those nasty Brits or Frenchies from sneaking up and causing havoc. Shade climbed up the stairs and ladders to the top, where a large flag flapped to Hurricane Jaoquin’s distant exhales while gray clouds boiled overhead. We got a pretty cool pic of our entire group on the roof.

Fishing in the Salt Marsh

Fishing in the Salt Marsh

Afterward we went fishing in the salt marshes. The sun was positioned perfectly to reflect in the mirror water the cloud-blotched blue sky. We caught no fish (I don’t think I’ve ever caught one), but the view was magnificent. As we finished fishing, Shade’s buddy Cody noticed hermit crabs on the stones by the bridge. I grabbed twenty hermit crabs to tote back to camp for crab racing. I had big plans for a betting ring. We learned that hermit crabs are extremely shy and horrible at racing and within the hour, I had returned them to the salt marsh. We spent the rest of the night enjoying bonfires and brisket.

A beautiful weekend. From a movie standpoint, you couldn’t get more ominous.

The plot conflict came on the Tuesday afterward when Aitza took Shade to see Dr. Trumble. A few months back they performed an angiogram on Shade and discovered that he still has a small nidus, that little tangle of arteries and veins that caused his bleed four years ago. The Gamma Knife treatment performed on him in December 2011 destroyed most but not all of the arterio-venous malformation.

Here’s the dilemma. With each year, his risk of a bleed increases by 1%. The doc said if you’re 70-years old, no big deal. You may get up to a 10% chance of a re-bleed. You’re nearing the end of your rental agreement anyway, so to speak, and making big renovations wouldn’t be worth the risk. But a 16-year-old boy still has a good 60-70 years, maybe more. So in your later years, your percentage of a re-bleed may be 60-70%. The procedure has an 80-90% chance of destroying the rest of the nidus completely. I hate math.

The procedure has its own risks. The location in the pons (the brain stem, which is a dense nerve bundle) leaves him open to some more damage to surrounding healthy nerves, especially a few cranial nerves. Shade’s already got facial palsy and can’t shut his eye, but we don’t know how much more damage to his face it may cause. His coordination might be more at risk, too. Plus, the brain swells a bit when you shoot it full of radiation. Go figure.

The full effect of any damage is unknown until they do the procedure. Afterward, we’d have to wait three years to see if the procedure was totally successful. This would also be his last shot at destroying it because of the level of radiation Shade’s brain would absorb from this second Gamma Knife procedure.

Of course, damage from a bleed would be much more devastating. If it happened at all. Whatever decision we make, it’s going to affect the plot of this movie. I just wish Shade wasn’t the protagonist and that the dramatic plot twist didn’t involve his poor abused brain.

Fantastic Voyage

Shade prepping for angiogram

Shade prepping for angiogram

I’m old enough to remember The Fantastic Voyage. Not in the theater. (It’s possible I heard the audio track as a simmering fetus in the womb.) I saw it on TV sometime in the early 70s, and I was blown away by what the future held. Sexy secret agent Raquel Welch, with her retinue of doctors and assistants, would shrink to a millimeter and drive her submarine through the bloodstream of a sick man, right up to the brain to remove a blood clot. What a fantastically ridiculous piece of fiction!

So, last week Shade went to the hospital for an angiogram. This is a process in which a retinue of doctors and assistants drive what amounts to a submarine camera through his bloodstream, right up to the brain to check out where his AVM took place. This was a real process! It differed from the sci-fi in that none of the surgery participants looked like Raquel Welch. I’m pretty sure none of them were secret agents, either. Also, thank goodness, there were no saboteurs as in the original, so the procedure went smoothly.

What I want to know is how do they know when to turn left or right? Are they using Google maps? Are there landmarks? Is there a backseat driver saying, “Okay, like in thirty seconds you need to take the exit ramp off the femoral artery and then merge into hemo-traffic at the next … Watch out for that platelet!”

The purpose was to find out what was left of the AVM since the gamma knife surgery back in December 2011. (A gamma knife sounds like it could have been in The Fantastic Voyage.) Preliminary results are mixed. 95% of the AVM was destroyed by the gamma knife. That’s great. But there’s still 5% of the veiny knot that’s being fed blood. The doctor who performed the angiogram didn’t give any definite indication that this was dangerous or not. (Doctors seem to prefer vagaries when making predictions.) But he did say that there might possibly be, maybe, perhaps a slight danger because, well, it’s there.

We won’t know the full word until the results of the procedure are analyzed by the doctors. Then we will have to consult Dr. Trumble to see if he might need another gamma knife procedure. Maybe Dr. Trumble says there’s not enough risk to warrant it. Maybe he says that Shade has already received his full dosage of radiation from the last gamma knife and more would turn him into a raging green beast. (You know, the Hulk effect.) Or maybe they decide to perform this brand new procedure. It involves a sexy secret agent, with her retinue of doctors and assistants, who will shrink to a millimeter and drive her submarine through Shade’s bloodstream to destroy the 5% leftover.

I’m hoping for the third option.

Ear worms

It’s 3 a.m. and I can’t sleep. I’ve had recurring insomnia for a month now. It’s distressing. I am plagued with ear worms, those endlessly repeating melodies that drill into your brain, muddle your thoughts, and wake you in the middle of the night, or worse, don’t let you fall asleep period. And they’re awful songs, too. A man could lose his mind hearing “Gangnam Style” 50,000 times inside his skull. Why can’t I have Radiohead stuck in my noggin? I’m currently listening to Classical music to try and scour the toxic tunes from my mind. It’s not working though. That obnoxious Korean pop star’s “Op Op-op-op Op” is clown dancing on the melodic notes and crushing them underfoot.

Part of the issue is I’m now taking anti-depressants. I haven’t felt the same since Shade’s situation, having intense feelings of depression and lethargy and irritability, so I decided to try a chemical route. The good thing is I am feeling calmer. The bad thing is the medicine exacerbated my insomnia. Now I’m exhausted but I have a feeble smile on my face.

However, the kids and Aitza have noticed a change in my mood for the better. The boys said I haven’t been a drill sergeant lately. I guess that’s possibly worth risking insanity through lack of sleep. However, I fear I’m going to become Tyler Durden. Anyone up for joining my anarchist, anti-establishment, basement Fight Club? Multiple personalities and delusional schizophrenics welcome.

This past weekend, I took the kids on the first Indian Guides camp out of the season at Warren Willis campgrounds in Fruitland. My brother Darren came out, too, with son Brody for his first camp out ever. They’re hooked. How could they not be?  Indian Guides is the best father/son program on the planet.

The area where we camped was fairly grassy, so Shade managed well in his chair. I rarely felt like he was left out of events because of his limited movement. Not that it was easy. I ended up pushing him a few miles back and forth over rough terrain, and by Sunday morning, my thighs were aching. Put that in your video, P90X!

Shade showed off his new trick during the weekend. I helped him stand and then held him by the hands while he bent his knees and then leaped in the air. He cleared about a foot. His landings were a bit rough, and he often sank down to his knees, but he would pull himself back up and do it over and over. Since he first tried it on Saturday, he keeps saying to me, “Let’s jump, dad.”

Many of the kids and dads we camped with hadn’t seen Shade in a while and remarked on how well he was doing since the last time they saw him. Often I don’t see the progress because he makes small incremental improvements on a daily basis, but that gap of a few months made a huge difference to our fellow campers. That gives me hope for future progress. I can feel that he’s nearing crutches mode. Once he’s up on his feet, there will be no stopping him.

I’m going to try to sleep again. I’ve got some Handel playing and the ear worm seems to have taken a nap. Perhaps Baroque music is the cure to the ear worm.

Whistle, baby!

I’ve been a bit late in posting, but in the words of rock-clown David Lee Roth in “Hot for Teacher,” one of my high-school anthems: “I don’t feel tardy!”

The reason for the delay is I wanted to report on our visit to Dr. Atkins, who is a (tongue twister) Neurotolologist, a doctor that studies and treats neurological disorders of the ear. He deals with balance but also the particular surgery I mentioned in a previous post. In said surgery, a nerve would be peeled away from the tongue (ouch) and reattached to the facial nerve. If you think of that nerve as a bundle, it’s actually split down the middle, with half the bundle being redirected and thus controlling the face. (In evil nemesis speak, his moniker would be Tongue Face.) This would give the face more tone and movement as every flick of his tongue would contract the muscles of his face.

However, we’re not convinced it would be an improvement. The downside is that the entire face will move when just one piece needs to move. So if Shade wanted to blink that eye, his mouth would screw up. And if he smiled on that side, his eye would squeeze shut. And if he stuck his tongue out, the right side of his face would wrinkle up so bad, it would look like my dad’s knees.  If he got the hiccups, every girl in school would think he was being fresh. “Quit winking at me!”

It’s basically the reverse problem of what he has now. Do we want no movement or total movement for half his face?

According to Dr. Atkins, the surgery is a very quick outpatient situation and recovery time is minimal but once it’s done, there’s no turning back. However, we’re in no rush. The surgery can take place any time in his life. And the good doc was quick to point out that the advances in this field are coming quickly. Five years from now, they might develop a method to restart that part of the brain stem, which is the root of the problem. So we’re going to wait it out for now.

On other fronts, Shade is doing decently in school, passing many of his tests. Homework is a lengthy trial, but we are managing. He’s also been enjoying eating outside on the school patio with one of his friends, Iman, whose mom does acupuncture on Shade. The outside area is like the green room at a big show. You have to have connections to get out there. Being a celeb in a wheelchair has its advantages.

Finally, Shade has been practicing his whistling. It’s faint, but it’s there. This is fantastic because it forces him to round his mouth. He was whistling the Flo Rida song the other day. But even better, it means Shade is doing something on his own to improve his situation.  I’m convinced that if he can take control of his own rehab and healing, he will suddenly make terrific and noticeable breakthroughs. And if we do decide to get the surgery and he learns to wolf whistle, at least he can utilize his uncontrollable winking whilst harassing passing ladies. Then all I have to do is teach him how to yell “Yo, hot mama!” loudly in a Brooklyn accent and maybe buy him a medallion to wear under his unbuttoned shirt. Yes, that’s right. I’m going to train my son to be a cheesy macho jerk. Whatchu gonna do about it!

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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