Yohan’s Surgery #14: Caution: Foot Surgery Can Cause Insanity

 

I just took the sanity test on the internet and despite what you might think, I am NOT crazy. According to the quiz, I am sane, which is a huge relief because now I don’t have to take bust and waist measurements for my custom-made strait jacket.

Doubts about my sanity came to a head when the 90 degree angle became such an important part of Yohan’s healing process. Over the next 2 months, if the foot drops past 90 degrees, the fragile tendons will tear, and Yohan would be back under the knife quicker than you can say “right angle.” I never knew that Geometry would play such a significant role in my future! Kids – if you don’t take Geometry seriously, you might end up with a CRAZY diagnosis.

If you remember correctly, the cast lady at the orthopedic office almost ruined Yohan’s surgery by cutting off his fiberglass boot with no regard to Yohan’s foot positioning. I am still traumatized by that one office visit. The other internet test I took alluded to the fact that this one event may have caused me some PTSD. Well, that whole scenario was a cakewalk compared to the following adventure.

The new walking boot he received on that fateful day allowed him to ambulate, using both feet. He still used the crutches, but he was walking!

Five days later, we flew to Vermont for the 3rd Annual Cycle 4 CMT event. During the flight, he mentioned that his foot hurt, but I chalked that up to cabin pressure, fatigue, hunger, anxiety, bad airline food, etc. When I had a chance to actually look at his foot the next day, I saw the source of discomfort: a large, open and oozing pressure sore on the ball of his foot. You have got to be kidding!

 

The answer to an email with a picture attachment of the wound to Dr. Pfeffer brought bad news, “Oh my. Not good. Keep it clean. Gentle soap and water. Dry out. Bandaid. NO MORE WALKING. Crutches, etc. Don’t over tighten brace. He has poor feeling in his foot and is placing too much pressure on the skin.”

Yohan was discouraged. The mood was glum. And, his foot smelled bad. I mean like rotting flesh bad (TMI? But, I don’t want you to miss any of the juicy details.) Thankfully, one of the people at the Vermont Cycle 4 CMT event, Karla, is a wound care specialist. She thoughtfully came by one morning to take a look and to give us advice. I wanted to make sure that gangrene had not and would not set in (true to form, always thinking of worst case scenario).

Before I continue on, let me explain that each and every time we remove the boot, we’ve been adhering to an elaborate communication system to make sure the foot does not drop. “You ready Yo?” I ask. He nods. Explaining every maneuver, “ I’ve got the foot. You remove the boot.” “You have my foot, right?” Yohan reaffirms, making doubly sure we are on the same wave length. I respond in the affirmative, “Let’s do this thing.” On and on, working together, we get the job done, reducing the margin of foot drop error to zero.

Yohan’s brain was jet lagged and still in a dream state when Karla stopped in the morning after the event. So when she asked Yohan to remove the walking boot and he nonchalantly lifted his leg out of the boot (his version is that the boot just accidentally fell off) without due warning. I freaked out and shrieked, “What are you doing? Why didn’t you tell me to hold your foot? Oh my God-what were you thinking? Did the foot drop? Do you have pain? Should I call an ambulance?”

Thankfully, he was able to keep his foot upright himself, but that was news to both of us, I think.

Suddenly, a veil of of peace and tranquility fell over Yohan’s entire being. Did he swallow a valium when I was not looking? “What?” he asked softly, seemingly perplexed at my reaction. In a measured, relaxed tone, he assured me that there was no need to get excited, “Elizabeth, I am fine. Don’t worry. See. I can keep my foot up by myself. There is no problem here.It’s going to be all right.” In Karla’s eyes, I must have looked like an overly-protective mom who had long ago lost her marbles. The more animated I became, the calmer he acted. Who was this man on my couch?

After looking at his sore, Karla assured us that it would heal and gave us advice on how to manage it until we flew back to California. I gave him the eye and glared at Yohan during the entire examination. Before she left, I thanked her profusely for her time and kindness. As soon as the door shut behind her, I whirled around to confront Yohan on the cool, calm, and collected demeanor he wore so convincingly. He was SO busted!

Can you imagine what it would be like to be committed to an insane asylum, when, in fact, you are more or less sane?

Recently, I watched a TV series featuring James Franco, 11/22/63. James’ character, Jake, travels back in time to attempt to stop the Kennedy assassination. Along the way, he meets up with Bill Turcotte, who initially becomes his accomplice to stop Oswald. Bill buys into Jake’s time travel story and become “brothers” to fool the world of the past. .

That’s all well and good until Bill falls in love with Oswald’s Russian wife, Marguerite. Bill is not following the program and threatens to reveal Jake’s master plan. So, the only way Jake comes up with to put him away for a couple of weeks is to bring him to a psychiatric unit where he easily convinces the psychiatrist of his psychotic break.

Bill really does sound as if he has lost his grip on reality, screaming “Where are you bringing me? What’s going on? They are following us. He’s lying! He’s from the future! He’s not my brother! He’s going to kill a man-I have proof.” Everyone witnessing the scene just shook their heads with pity, acknowledging the toll mental illness takes on the patient and their families. Bill ended up with several sessions of electroshock therapy. He was much calmer after that. Shocker, right?

In that moment, and in quite a few instances since then, I have felt like Bill before electroshock therapy. Geometry sucks. So the next time we meet, remember that I may look, sound and act crazy, but I am not. I too have proof. I took an internet quiz assuring me of my sanity. Even though I may have omitted a tiny detail about the results which mentioned something about manic tendencies and how much I would benefit from intense therapy, I know for a fact I am not nuts….yet.

If you want to find out if you are insane, please visit: www.sanityscore.com. Let me know what you find out!

Yohan’s Surgery #13: Hans, the Finger and the Dike

 

Since Yohan had his cast removed last Thursday, I feel like that Dutch kid, Hans, whose dike-plugging skills prevented a disastrous flood from annihilating his village. Here’s why: Dr. Pfeffer told us at least 99 times that when the cast comes off and the walking boot goes on, “Yohan’s foot is not allowed to drop AT ALL – NOT EVEN FOR A MOMENT.” In other words, if Yohan plantarflexes, or “steps on the gas pedal,” the tendon transfer will rip out and be completely and utterly ruined. Back to the operating table! Like Hans, I got the job no one else wants: hold that foot up or pay the consequences. Unlike Hans, who must have nerves of steel, my nerves are all mushy – like over-cooked pasta.

Because of the expense and distance, we chose not to return to Cedars for the cast removing ceremony, and opted to make an appointment here in the Bay Area with a highly-regarded orthopedic surgeon.

I woke up Thursday morning feeling sick. I had a bad case of the jitters. Would Yohan be able to walk? Would the screws in his heel cause him pain upon weight bearing? I was more nervous today than the day he had the surgery. And when I become anxious, I get all amped up and overly-excited, sort of like someone with bipolar in a manic phase. On the way to the appointment, I was talking a mile-a-minute, without much cohesion to my sentences. In the waiting room, my foot tapped uncontrollably to the rhythm of some imaginary triple time beat. In the cast room, I zoomed around on the doctor’s stool, touching everything and making loud nonsensical conversation….with myself. When Yohan glared at me and told me to “shush” by putting his index finger to his lips, I felt irritated. “Sorry, I left my inside voice at the library yesterday.”

The tech arrived and started to cut away the top layer of the cast, but not before I shoved my iPhone in her face, making her read every word of Dr. Pfeffer’s instructions. His email specifically stated, “As he comes out of the cast tomorrow, do not let his ankle flex down accidentally. Even for a moment. Hold his foot up, his ankle at 90 degrees, as the cast is taken off. He should go right into a cast boot, which will hold his ankle at 90 degrees. Have it ready as the cast comes off.”

We had never met the doctor we were about to see, but I had Googled him beforehand to make sure I approved of his credentials and his looks. I also did some research on Angie’s List to make sure he had excellent reviews. He did.
So when he walked into the room, I felt as though I knew him intimately. “Good morning, Dr Ortho” (made up name), I sung as if I was greeting a class of 1st graders on the first day of school. Chin down, he peered warily at me at from above the top rim of his glasses, and then he glanced at Yohan and then at Gilles. “Do I know you?” he asked with a hint of both confusion and fear.

“Nope. No, you don’t. But, I know you”, I responded with much too much enthusiasm. Then, here is where I take control of our appointment, “This is what’s going to happen here today. “Read this,” I commanded, as I placed my cell under his nose, on top of a pile of medical records. He obliged. Compared to the cast lady, he took his job to heart and carefully read every word of Dr. Pfeffer’s email.

Still not quite understanding his role in this process, he briefly eyed Yohan’s foot, shrugged and casually wished us well as he shuffled out of the room. Just as I started to relax, I realized that cast lady was once again in charge and respectfully, she looked a bit on the clueless side.

Suddenly, in a blink of an eye, she started to pull Yohan’s cast off, WITHOUT PAYING HEED TO THE POSITIONING OF HIS FOOT! Gilles, jumped up and for some reason, I reacted by giving succinct commands as if I were riding my horse,” Whoa! Whoa! Whoa!” Before any real damage was done, Gilles grabbed Yohan’s foot, held it securely in the 90 degree position as I slipped the walking boot underneath his leg and foot. Disaster averted!
After 8 weeks of non-weight bearing, Yohan put his foot on the floor, and with the help of his crutches, he walked out of the room, down the hallway and into the car. Apparently, his foot felt “weird” whatever that meant, but he was walking. Yes!

Watch him walk:

By that time, I had a terrible headache, and I was exhausted. Any energy I had was all used up. I was running on empty. When we got home, Yohan wanted to take wash his foot. All I wanted to do was take some Excedrin and lie down. But, fair enough. I threw down a couple of pain killers and then helped Yohan soak his foot, which was immediately overwhelmingly taxing. It takes a lot of concentration and 2-way communication to get that foot out of the boot and into the bathtub without losing that 90 degree angle. Due to weakened lower leg muscles and lack of sensation, Yohan tried to keep his foot up, but his effort alone would not be enough. He needed a hand to stabilize and guide him. And that hand happened to be mine.

He put his booted foot into the tub, and before removing it, I had to sit on the edge of the tub, and stretch way down at the most awkward angle, almost throwing my back out, to hold his foot up while he removed it from the boot and put it down nice and flat. I told him to wash that foot really well, because I was not repeating this charade for a while.

As I mentioned at the beginning of the story, when dealing with Yo’s foot, I can totally relate to Hans. How I empathize with that sweet little boy. The future of his world was riding on his determination and persistence. I might not have his depth of character, but, don’t worry about us. Our story will end well too. Here’s my solution to success: No bathing until the boot comes off in two weeks. It’s as simple as that.

Yohan’s Surgery #12: My Spiel about Peel

False alarm! We thought the cast was coming off, and it did, for about 30 minutes, before they slapped another one right back on his foot. And what’s with adult orthopedics? The available colors are so exceedingly boring! They did offer pink, orange, black, dark blue…. Yawwwwwn. Yohan wanted tie-dye, rainbow, flames or even animal print. Nope. In the adult world, can’t do that. So, he settled for orange-bright neon orange. We could have decorated the cast (lots of ideas on Pinterest!), but we have an ongoing trust issue since I secretively wrote MOM on the bottom of his casted foot when he was asleep. Whatever.

When Gilles brought him to see Dr. Pfeffer 2 weeks ago, we could not wait to see the surgically repaired foot. Watch Dr. Pfeffer’s face.

Best reaction ever, right?? I made the GIF (pronounced gift without the “t” and evidently a hotly-debated and controversial topic right now in America) so I can watch it over and over and over again. Dr. Pfeffer is so pleased with his work, which means that I am very pleased with Dr. Pfeffer! If you look closely at Yohan’s foot, it is both beautiful and kind of gross. Beautiful because his foot is aligned, straight and relaxed. Gross because there are crusty scars, peeling, dead skin, overgrown toenails, and did I mention peeling, dead skin?
Let’s discuss the peeling, dead skin issue a little further. Here are a couple of very interesting facts about epidermis:

• Skin accounts for about 15% of your body weight.
• The average person has about 300 million skin cells. A single square inch of skin has about 19 million cells and up to 300 sweat glands.
• Your skin is at its thickest on your feet (1.4mm) and its thinnest on your eyelids (0.2mm).
• The skin renews itself every 28 days.
• Your skin constantly sheds dead cells, about 30,000 to 40,000 cells every minute! That’s nearly 9 lbs. per year!
• Some sources estimate that more than half of the dust in your home is actually dead skin.
• Dead skin comprises about a billion tons of dust in the earth’s atmosphere.
• Your skin is home to more than 1,000 species of bacteria.

TMI? Too bad-deal with it because I am not done. Read on……

Now, we need to discuss how the above-mentioned facts relate to Yohan’s foot. Personally, since Yohan came home with a minimalist cast, which is shorter, less bulky and quite revealing (you can see his straightened toes – all five of them!), I have never, ever seen so much flakey, cracked, mummified skin sheddings all at one time, in my entire life.

Under that cast, many dry, scaly, dead skin cells have accumulated, not having been sloughed away with soap and water in a daily washing routine. And that smell! Pee-ew! Sweat leaves moisture under the cast, creating quite the ripe aroma of sticky, perspiring, stinky feet.
I’ve become much acquainted with the stench, because Dr. Pfeffer gave me a very important and ultra precise job to do with Yohan’s pinky toe (the only digit to have been surgically straightened). Twice daily, I have to press down on it, and give it a good stretch, for 30 seconds, 3 times in a row. Once I’ve accomplished my mission, my thumb is covered with Yohan’s dead skin cells, which completely messes up the image of my lovely fingerprint. Disgusting. But, of course, like when changing diapers, when it is your own kid, it’s not that bad. But do not ever ask me to do this to your feet. That would be an immediate “No Way, Jose!”

Today, when stretching Yohan’s pinky downwards, he kept telling me it hurt a lot, but I rolled my eyes and ignored his whining. When I finished the third set exercises, I examined his toes carefully and to my horror, I realized that I was unnecessarily creating trauma to the base of his fourth toe with my long ass thumb nail. His healthy, vibrant skin had several large, deep indentation marks, and his toe started to turn bright red, with a bluish tint. OMG! Think, Elizabeth, just think for 2 seconds before acting. My dreams of becoming a professional nurse have been destroyed. I failed before I even had the chance to begin. As we continue on this journey together, Yohan’s trust in me is slowly eroding. I’m not the person he once thought I was. He’s just presented me with a gift for all my hard work: the book, “Nursing Tips for Dummies.”

Yohan no longer needs pain medication. He is not weight-bearing yet, but he’s getting around quite nicely on crutches. He can probably do much more than he will admit, and I’m letting him get away with it. I need to balance out the guilt I harbor about the abuse I’ve subjected him to. But that all ends Thursday: cast removal day! Off with the old, and on with the new walking boot!
A new chapter, with all new adventures, begins Thursday.
Until then, when you take your next shower, know that you are getting rid of tons of dead skin cells. Enjoy the shed!

Yohan’s Surgery #11: How to Make Life “Fun” in a Cast

 

So many things can go so wrong when you are in a cast. I’m about to tell you true stories. I wish they were not true, but they are. Here is a glimpse of my everyday chaotic life, which is simply an extension of my absent-minded, distracted brain. Quite surprisingly, Yohan did not end up in the hospital with another, more serious injury while under my supervision and care. We got lucky.

Yohan’s been in a cast for the past 4 weeks. Before we left Cedars Sinai, Dr. Pfeffer vehemently warned us NOT to get the cast wet – not even a little bit. Apparently, one of his patients used a “waterproof” plastic cast cover to take a shower and the cast got soaked. That poor soul had to undergo another surgery just to fix the damage done by the removal of the destroyed cast in the ER. Can you imagine?

The second day home, we (I) came very, very close to compromising that brand new cast. Yohan used his Honest Pee bottle and called me to collect and empty. At the same time the phone was ringing, so I ran in, grabbed the bottle and in slow motion, I saw that bottle hover in thin air as it slipped from my unsteady hand. As time stood still, I saw Yohan’s eyes grow wide with terror as he watched me trying to get a solid grip back on that bottle before the open pee bottle spilled all over his cast. I caught it, not a drop spilled, but just in the nick of time. We avoided a catastrophe, but what a close call. “Hello, Dr, Pfeffer? Yeah, Elizabeth Ouellette here. I just spilled urine ALL OVER Yohan’s cast. It is drenched and very smelly. What do we do now?” That’s one conversation I’m glad I did not have to have.

Remember, the aforementioned incident occurred the first day he was sporting his brand new cast. Many challenges were yet to follow.

Thanks to the best PT ever (Robin Tobias), who came to our house to teach Yohan to use crutches, he’s gained confidence over the past 4 weeks and has gotten pretty good at getting around the house.

He still prefers to ask me to get his food, drinks, medicine, clothes, computer, headset, charger cords, etc, but he is so annoyingly grateful for everything, how can I say no? “Thank you so much.” “I appreciate you.” “You’ve helped me so much.” “You are the best.” I can’t even afford to get irritated! I’m forever grateful to have the nicest, most thoughtful kid in the world, but seriously….

My annoyance turned into mischievousness and in a moment of childish impulsivity, I snuck into his room at 6am and wrote “MOM” on the bottom of his cast, which also looks like “WOW” if you look at it from an opposite angle. Yes, I was proud of myself. I like to keep our lives interesting.

I texted him the picture and when he got up at noon, he’s like, “What the heck!!!! I can’t believe you did that, you creeper!” (His verbiage may have been a bit stronger). Then we just laughed. Thank God he has a good sense of humor.

Try as I may, I’ve inadvertently made the house more hazardous than safe. I accidentally spilled liquid laundry detergent all over the floor in the laundry room. Without sharing my mishap, I hurriedly cleaned it up, but is it ever hard to get concentrated washing liquid off a tile floor. That night, Yohan crutched through the laundry room and I heard him scream, “AHHHHHHHHHH” One arm of his crutch slipped violently off the still slippery floor, compromising his balance. By the grace of God, he remained upright. He could have easily ended up flat on his face, but we got lucky, again. Or should I say, I got lucky, again.

Keeping the floors clear of obstacles has also been quite the challenge. I’ve never really learned to put things back after I use them, so when I play with the cat, there are usually an assortment of cat balls, feathers, squeaky birds left on the floor, which is a hazard to anyone on or off crutches. I am just an “in the moment” kind of gal. What do you expect?

We’ve had no serious accidents, but we came close one too many times. Even the cat herself seems to be working against him. I caught her red handed: https://vimeo.com/177483723?utm_source=email&utm_medium=vimeo-cliptranscode-201504&utm_campaign=28749

Well, tomorrow is the big day. The cast comes off and we start a new chapter in the life of Yohan’s surgery and rehabilitation. We are anxious and excited, scared, but optimistic that everything will turn out okay. We’ve gotten this far, it just has to get better, right? Time will tell.

The Power of One – Don’t Just Sit There, Do Something!

Yohan’s Surgery #10: If You Can’t Beat ‘Em, Join ‘Em

 

Due in part to the effects of his CMT, Yohan has never been particularly athletic. When he was young, he enjoyed swimming lessons, played tennis and racquetball, kayaked and camped with his dad. He even learned to ride a horse. As he got older, fatigue, sprained ankles and nerve pain became limiting factors to his budding sports career.

(Remember this oldie, but goodie? Yohan and his horse, Athos.)

So, Gilles and I have never spent Saturdays cheering him on at soccer or basketball games, but we did get involved with his gang of friends who were fanatically collecting Pokémon cards, watching the series on TV and playing the Pokémon game. I even made an effort to learn the characters, their names, and abilities. I helped him file his “valuable” cards, putting them all into binders, in alphabetical order, of course. We bonded over our love of these mostly cute and adorable characters- especially Pikachu, that short, chubby yellow-furred rodent with pointed, black tipped ears. What’s not to love?

A couple of years later, once I finally attained the status of Pokémon Master Trainer (I liken this to a black belt in karate)*, the trading card game Magic the Gathering made a comeback and Pokémon all but faded into a distant, but fond memory. If we wanted a relationship with our son, Gilles and I just had to follow the craze.

Out with the old and in with the new: we all purchased Magic cards, and learned how to play and even held tournaments at our house. I was never particularly good at Magic, but I did own a couple super-duper extra powerful cards that won me my fair share of matches.

I retired from Magic the day that I learned that Gilles had spent an entire summer buying the best of the best Magic cards on eBay, constructing an unbeatable, omnipotent legacy deck, which, in retrospect, was probably illegal. After spending a month in Vermont, we returned home to an  unusually eager Gilles who destroyed us game after game after game. “That’s it. I quit.” I raged while stomping out of the room. “I am calling the Magic police. You are busted!”

Over the years, I’ve always tried to find ways to join Yohan in his interests and hobbies, making communication and interaction as easy and as real as possible. To remain connected and to keep ideas flowing, we’ve read some of the same books, worked on biofeedback for pain control, and played mutually enjoyable board games (Cribbage is tons of fun).

During his recovery from this foot surgery, we’ve spent a lot of quality time together, playing games, learning sign language (kind of difficult for someone with CMT), reading books (Full Catastrophe Living) and watching comedies that make us laugh senselessly.  Laughter really is the best medicine.

So when I heard about the new and somewhat controversial Pokémon Go game and pondered a possible reunion with the little guy, Pikachu, I downloaded the app and started playing. Guess who is playing with me? Yohan!  In fact, he’s taught his mom how to play the game and even teamed up with me for about 5 minutes, to help me catch Pokémon.

Pokémon Go also provided the perfect distraction, diminishing anxiety and worry when faced with removing the 3-inch pin in his toe this past Friday. Before, during and after the procedure, we caught a wide assortment of Pokémon (still searching for Pikachu!).  The game’s release date could not have been timelier!

We have not fallen off any cliffs yet, or walked into oncoming traffic, but whenever we go out as a family, I ask Gilles to drive, so Yohan and I can join in on the fun and competition, together. My motto: If you can’t beat ‘em, join ‘em. As for Gilles’s opinion of Pokémon Go, he said, “Been there, done that. Next!”

(Due to Gilles’s very bad attitude, Machop got away.)

 

* Gilles wanted me to tell you that I never really attained the imaginary level of Pokémon Master Trainer. That dream was sadly squashed in its infancy.

Yohan’s Surgery #9: The Journey Ahead

Thanks to 9 different procedures, over 100 stitches and 7 long hours of surgery, Yohan has a new foot underneath that cast. A foot that is straighter, more functional and completely reconstructed.

And the journey has just begun. In August, he can put weight on the foot. And then there will be months of rehabilitation before the right foot undergoes the same exact procedures.

The last 2 weeks have been fraught with raging pain, immobility, fear, fleeting regrets, despair, and hope. Had we made the right decision? Will this foot with screws, pins, wires and severed tendons actually restore his ability to walk, stand and possibly run? That question will be answered in the weeks and months to come.

Still, he holds a smile on his face and his humor remains intact. Do I wish I could take all the pain away? Yes, absolutely. But that is not reality.

Yet, there is something we can do. We can all support the STAR research initiative that holds promise to stop the progression of CMT. We can participate in the Cycle 4 CMT event, fundraise and get involved. Let’s stop CMT in its tracks and give hope to hundreds of thousands of people across the globe.

Yohan’s Surgery #8: The Joys of Life after CMT Foot Surgery: When You Gotta Go, You Gotta Go!

 

I love shopping.  How exciting to get ready for a new event or occasion! Imagining what’s needed for the upcoming affair is just half the fun. The other half is actually buying everything we might need, way in advance.

When we chose our cat, Tortellini, 12 years ago, I bought cat food, a cat tunnel, a heated bed (she has no fur, she’s a Sphynx), a litter box, scoop, cat toys and a cute little sweater to warm her on the cold winter days we have … in California. I searched, gathered and ordered all this and much more at least three weeks before her arrival. I wanted to be ready to rock n’ roll when she arrived.

It’s a mystery to me that my husband does not agree with my concept of 100 percent preparation and readiness. In his view, why not wait to have the cat at home, in your arms, before looking around, scratching your head wondering, “Now, where will she eliminate? Oh yeah, I think we need a litter box,” (thus the term litter box training.) I’ll just run to my local pet store to find the perfect one. In the meantime, show her where the plants are …”

The same idea applies to CMT foot surgery. My suggestion? Think ahead and get everything you might need, and that much more, before your loved one comes home. Not everyone will agree with this golden and invaluable piece of advice. Y’all know who I am referring to, right? Reviewing my Amazon account, my frugal husband Gilles almost had a minor stroke.

“What?” I protested innocently. “We need this stuff!  Yohan has to have it. These medical supplies are essential for a full and seamless recovery!”

This is (the completely reasonable list of) what I bought:

– travel companion wheelchair

– raised toilet seat

– knee scooter

– stability bars that attach to the toilet

– grip bar that suctions on to the wall in the bathroom

– inflatable wedge that goes under the healing leg (doctor’s orders are to raise the leg as much as possible)

 

– commode

– chocolate

 

Except for the light wheelchair and the chocolate, of course, we disagreed on the necessity of every single item.

“Okay, the commode is a little much,” I conceded.  We probably wouldn’t use it and who would empty it anyway? But, Amazon accepts returns!! You don’t like/want it? Send it back! No brainer!

Before we had the “opportunity” to sit down and discuss my purchases, I installed the raised seat and the stabilizing bars on the toilet.  Voilà

Gilles looked at the setup (I think he was super impressed with my installation capabilities) and listened to my logic. Defeated, he walked away, muttering something about returning the commode ASAP.

HA! The joys of rightness!

Tragically, the joys of my rightness did not even last 24 hours. As I was emptying the Honest Pee bottle the next morning, my socks unexpectedly got soaking wet.  Water was seeping out from the base of the toilet–the same toilet where I had applied my awesome installation skills. Am I cursed? Just a bit of bad luck?  Or did I somehow manage to break the entire toilet? Should I look on Amazon for a DIY manual on toilets? Nah … this called for a real plumber.

Waiting for the plumber, I came to the realization that you can never be 100 percent ready for future events, even if you want to be and think you are. Destiny cannot be controlled, no matter how hard you try.

For example, today, I left Yohan at home, immobilized on the couch, to run to the grocery store. “Do you need anything before I go?” I asked rather sternly (I did not want a call in 10 minutes asking for his medicine, a drink or more pillows to elevate his leg.) “I’m good,” Yohan said in an automated voice, barely lifting his head from the computer screen. “What would you do if a robber came and tried to steal all our stuff?”  I inquired, trying to shock him to attention. “I couldn’t do much now, could I,” he sighed. “Now, stop annoying me and hurry up and get back here.”

Ten minutes later, my cell rang. “Where are you?” Yohan asked with urgency. “At the store, getting groceries,” I reminded him. “I really have to go to the bathroom … badly.  I NEED YOU TO COME HOME NOW!” he panicked.  As I asked if his wheelchair was in reach, I remembered cat playtime. You know, when you put your cat in the wheelchair and wheel her all around the house like a crazy cat lady, taking a hard right, then left, seeing if you can knock her off the throne? For a visual, click on this link: https://www.youtube.com/watch?v=JiAubpBoEPQ. It dawned on me that I never put his wheelchair back in place. In fact, the last thing I remember is dumping Tortellini off next to the litter box, in her room, on the opposite end of the house.

This cannot be happening. Cleverly ditching my grocery cart in a spot no one will notice, I ran to the car and drove home, breaking all the speed limits. I’ve been there. When nature calls, you don’t just hang up. You heed her calling and find a bathroom … quickly.

All’s well that ends well. Lesson learned: You can never buy too much on Amazon.com!

 

PS: If you use Amazon.com to make purchases, don’t forget to sign up for Amazon Smile: https://smile.amazon.com/. When you choose the Charcot-Marie-Tooth Association (CMTA) as your charity of choice, Amazon gifts a percentage of your purchase to the CMTA!

Yohan’s Surgery #7: The CMT Inaccessible Home

 

I hate to say it, but Yohan was right. Our house is unequivocally inaccessible. Sad thing is, I was totally and completely oblivious. Since we have no inside stairs and there are only a couple of steps leading into the house, I never thought twice about just how hard it is to get into and around our home in a wheelchair or other mobility device.

At the beginning of the year, CMTA Regional Manager Ori Bash stopped by my house on one of his first days on the job. I saw his car in the driveway, so I went to the door to meet him. He got out of his car, walked over to the steps and just stood there, looking perplexed. “No handrail, Elizabeth? You, of all people. … Really?” he blurted out cynically. Considering his commentary while peering down on him from the top step (in my defense, there are only two steps, not an entire flight of stairs), I felt somewhat offended. Geez, what does he expect? I thought.  It’s only two stairs.  “Conquer your fears, Ori. I got your back if you fall,” I thought to myself, even though we both knew that if he had fallen, I probably would have just tried to get out of the way (just kidding).

Then there is one of my favorite people in the whole wide world – Bethany Meloche. Bethany is a dear, close friend who also happens to be the CMTA’s Director of Social Media. Bethany’s never-ending patience with me is undeniably impressive. In all the years she’s been coming over to the house, she’s never complained about the steep garage steps, with no railing (but, there are only two steps!!).  It gets worse.

My husband brilliantly installed a light that automatically turns on as you enter and leave the garage. The only problem is that you have to descend those two steps, in total pitch dark blackness, with no railing, before the sensor detects your presence. It’s not very safe for anyone and even more dangerous for someone with CMT.

Luckily, I can modify our current home with a few adaptive products to make our living space manageable for the next six to eight months. But if Yohan or anyone else was reliant on a scooter, wheelchair or walker, we’d most likely have to move. To my dismay, I’ve realized that many traditional homebuilders do not take the needs of the elderly or those with temporary or permanent disabilities into consideration when constructing a house.

We’ve lived here for close to 20 years and only now am I realizing just how narrow the doorframes, hallways and kitchen space are. I feel as though I’m living in one of those ridiculously skinny fairytale homes.

There is no turning space for wheelchairs to even get to the bathroom doorways. And even if there was, the doorframes of three out of our four bathrooms refuse wheelchair entry!

I tried to wash Yohan’s hair in the sink today, but all our sinks are only approachable from the side. I asked Yohan to pretend he’s a contortionist and bend his neck to an abnormal angle (60 degrees would be good)  to the right side before I turned on the water to the extendable hose to wet his hair, back, leg, face, armpit, floor, etc. In essence, I soaked just about everything except his ace-wrapped lower leg that has to stay bone dry. Now his neck hurts too, but his hair is clean!

We also bought a bathroom suction grip bar (shout out to Benjy Hershorn), a knee scooter (great call, Melissa Adams), a narrow, light travel companion wheelchair (thanks Bill and Sarah Somers) and grip bars that attach to the toilet for stability and safety (Amazon Smile-I love you).

What an eye-opening experience! Ori, Bethany, we are working on those railings, which will be installed in your honor. Thanks for your honesty and guidance. As Gloria Steinem once said, “The truth will set you free, but first it will piss you off.” How true.

Yohan’s Surgery #6: Honest Pee

 

Walking around with CMT can be hard enough, but when you have one foot, weighted down by a cast, off the ground entirely, and the other foot, affected by CMT (pain, high arches, weak ankles, limited or no ability to lift the foot when taking a step), getting around is like playing a game of hopscotch in pebble-lined high heels when you feel dizzy. Try it sometime and see how far you get.

So this begs the question-How do you get around the first few days, weeks, months after foot surgery? What are your options?

The first week is especially hard due to pain, blood rushing to the foot upon standing, and additionally compromised balance from the pain meds. Yohan initially tried crutches, but that was a disaster waiting to happen. Holding the crutches too far out to the sides on a newly polished hardwood floor almost cost him his life-the first night. He was moving too fast, wanted to get to the bed. Yelping as he slipped to one side, we caught him just in time before he crashed into the wall.

Plan B included the use of a wheelchair. The Occupational Therapist in the hospital taught him how to transfer from a sitting position to the wheelchair and back to a chair again. They repeated the maneuvers in the bathroom and on the bed. This seemed to work well until we got home and tried it in our house, which, as Yohan has reminded me a million times in the last 2 days, is “NOT handicapped accessible.” “Oh, come on. It’s 95% accessible. It’s good enough”, I countered at just about the same time the wheelchair scrapped the paint both off the wall and the door as Yohan attempted to squeeze through.  Smugly, his eyes screamed, “I told you so.”

It’s true. To get into the house from the front, there are 3 stairs and no railing. Fail. Wheeling the chair around the house is an option except for the very narrow brick pathway leading to the back door. One teensy tiny wrong turn off that path and the wheel will tumble right off the edge, down into the dirt. Another fail.

Once you reach the back door, there is a small step, and then the bottom rim of the sliding screen door to master.  “Okay Yohan, I agree. This house is not 100% handicapped accessible. In fact, it’s not even 50% accessible.”  Changes are underway.

In the meantime, I feel that if he can get back and forth to the bathroom, that’s a win-win situation for everyone, right?

We follow the wheelchair into the bathroom, which seems so much smaller and limited than I had remembered. “Don’t pull on the sink, Yohan. You’ll rip it out of the wall” shrieks my husband. “And do not hold on to the towel rack either. That will never support your weight!”

From this vantage point, Yohan can go no further. There are still 3 feet between the toilet and the end of the wheelchair. Now what? In that moment, nature was calling so Gilles lent him a hand, then an arm to help him get into place safely. This is definitely not a long term solution.

We’ve found a provisional fix for the bathroom trips. It’s a perfect solution for now. It’s our 59 fl oz Honest Tea bottle, which we’ve appropriately renamed, our “Honest Pee” Bottle. For a man, it’s a no-brainer. I’d rather have to empty the bottle every couple of hours than risk a fall.  As for all other bathroom-required activities, we’ll give him a helping hand for now.

As an aside, Yohan, sense of humor intact, suggested playing a joke on Gilles by putting the Honest Tea bottle full of pee back in the fridge to see if Gilles would think it was Honest Tea and drink it. I shut that idea down quickly.

We have more important tasks at hand, like retrofitting the house to make it handicapped accessible.

Yohan’s Surgery #5: The Hospital Stay

 

I’ve been an active volunteer for the CMTA for the past 13 years. I’ve organized CMT conferences, written articles, acted as an administrator on several Facebook groups, created a presentation to teach kids about CMT, answered Ask the Expert questions, facilitated a CMTA Branch, etc, etc, etc.

I thought I was familiar with practically every aspect of receiving a CMT diagnosis, from bracing and neurotoxic medications to symptoms and genetic testing.  As we come out of Yohan’s surgery, I realize that I had NO clue what kids and adults go through to correct the CMT foot-NO clue whatsoever.

Sure, I’ve seen presentations from orthopedists, listened to webinars on the subject, seen many CMT battle scars on our Facebook group, but to experience this surgery with your child or loved one is an incredibly eye opening journey, one for which I was not fully prepared. None of us were.

Many people with moderate to severe CMT have claw toes, where the toes contract and resemble just that- claws. Imbalanced muscles create high arches, drop foot, loose ankles and very tight Achilles tendon and calf muscles.  When leg bracing or AFO’s can no longer be worn to correct improper gait, surgery may be advised.

To lower Yohan’s arch, the plantar fascia, the ligament connecting the heel bone to the toes (pink), was cut. The ball of Yohan’s big toe had dropped, so a piece of the bone had to be removed. To correct his misaligned heel, a wedge of the heel bone was extracted.

To alleviate foot drop (inability to raise the foot upward) and stabilize the ankle, tendons were transferred and repositioned.

His rebel pinky toe, stiff, bent and contracted was straightened with a pin, which is only removed 4 weeks after the surgery. Lastly his calf muscle was also cut and released, allowing for freer movement and flexibility.

Yohan was just discharged from the hospital today, after being admitted on Tuesday morning. The pain was intolerable and out of control. Once pain runs wild, it is hard to capture and domesticate, but it is not impossible. It took a couple of days of different pain regiment trials, but he conquered! Yohan is home, enjoying a selection of desserts and treats his grandmother from VT sent to appease his sweet tooth and raise his spirits.

You may want to know:

These procedures can cause severe pain that can be controlled with adequate doses of potent medications. Don’t be a hero. Take your meds if you need them and embrace comfort. Learning and practicing deep breathing and meditation before the surgery can help you manage the pain.

Follow your surgeon’s medication schedule and do not skip doses of medication. Break away pain is dreadfully hard to contain.

The opioids prescribed can cause constipation, so get the stool softeners ready. Drink plenty of water, too.

Some surgeons hospitalize their patients after this surgery, others do not.

Keep your leg elevated after surgery.

Before surgery, figure out how you will maneuver on one foot (especially if the other foot is hard to walk on). Will you use a knee scooter, crutches or a wheelchair? How will you get to the bathroom? Whatever you decide, practice before the surgery!

If you have CMT and can relate to the story above, I have nothing but the utmost admiration for you. These are complex and delicate surgeries that take strength, patience and courage. My respect for you knows no bounds.