The Hospital Stay

Yohan’s Surgery #5: The Hospital Stay

June 25, 2016

 

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.

Home 2

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.

Home 1

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.

Before the Knife—the Anesthetic

Yohan’s Surgery #4 – Before the Knife—the Anesthetic

June 22, 2016Before the knife 2

 

Everything is fun and games until the anesthesia wears off. The most polite Yohan I’ve ever witnessed was in the recovery room immediately following surgery. He was still under the influence of a light sedative and thanks to the nerve block that numbed his leg from the knee all the way to the toes, he was in no pain whatsoever.

“Thank yhou, thank yhou very much for efrything, he slurred. “Yhou are all wuhnderful.”I don’t think he was addressing any one person in particular, but anyone with whom he made eye contact.

When the nurse gave him cellophane-wrapped hospital bran cookies, Yohan gushed, “These are the best bran cookies I’ve ever eaten!” He was full of peace and love when sending a group text to his closest friends, “I love you guys all so much!” He was funny, extremely polite and grateful for every service rendered, from the surgical team’s work to the small cup of juice offered by the diligent and kind nurses.

Before the knife 1

The six-hour drive home was long and tedious, but his spirits were high, knowing that the whole procedure was over and done with. The nerve block would last 24 hours and we were well equipped with pain medication. Megan, Yohan’s girlfriend, was waiting with open arms, ready to offer him the care and support he needed. She was up for anything and made it clear that no chore large or small would be too much (the things I’ve asked her to do-yikes!). She’s been nothing short of wonderful.

We all fell fast asleep as soon as we hit the bed (no, not the same bed). It had been an exhausting ordeal, but we thought that we had turned the page, that it was finally over.

Little did we know, the worst was yet to come ….

Yohan’s surgery was more extensive than I had imagined. The list of procedures included a heel osteotomy (the surgical cutting of a bone), a first metatarsal osteotomy, tendon transfers, calf muscle release, plantar fascia release, pinky toe straitening and three more procedures I have since forgotten. In essence, his foot was surgically reconstructed and it was screaming in relentless, merciless pain. The morning’s mild discomfort was getting worse by the minute.

When I left in the morning, he was sleeping soundly and Megan was up and ready to tackle the day. Checking my phone on the way home, I was greeted by Megan’s frantic texts, each rating Yohan’s pain on a scale of 1 to 10. Scrolling from earliest to latest, I saw a 4, a 6 then an 8. Yohan was moaning and groaning in agony. The nerve block had worn off and the medication was definitely not providing enough relief.

Yohan’s doctor and surgeon were both overwhelmingly receptive and helpful, guiding us through the day, advising us on how to safely lessen his pain with a complex combination of medications. It took a long time to get the unbearable pain under control, but by 4 p.m., Yohan seemed much more comfortable.

The respite did not last long. By 9 p.m., the pain latched on with a ferocity I myself have never experienced. The maximum opioid pain medication did not quiet the heartless beast. In fact, it only seemed to enrage it further. So, here we sit, at 2 a.m. in the ER. We wait, along with all the others who are sick, in pain, suffering. We all want the same thing—release from the grips of the tormenter.

A few thoughts……

Don’t let your pain get out of control. Pain is a personal experience and each person is unique. Your doctor wants you to say so if your pain is not manageable.  Don’t worry about “bothering” the surgical staff or appearing weak. Pain, if left uncontrolled, will hinder your recovery because healing occurs faster when pain is well managed. Play an active role in your pain management treatments. You deserve the best possible care available.

And 7 Hours Later

Yohan’s Surgery #3-And 7 Hours Later…..

June 21, 2016

And seven hours later

 

After four hours, we started to wonder, “What is taking so long?” He was wheeled away at 7:30 a.m. and should have been done by noon, at the very latest.  A female voice called our cell phone on behalf of the surgery team several times to tell us that all was fine and to hang tight.

Then again, that is what the hospital voice had said about my neighbor’s husband a few years ago and when we arrived for a visit we were informed of his untimely and unexpected death. “Just get to the hospital as soon as possible,” the earlier unknown caller said. “All will be ‘fine’.” Yep. I’ve heard it all before and all was not fine. The word fine is really all about covering up the truth with a neutral and superficial word. Ever ask, “Hey, how are you today?” and get the answer, “I’m fine, thanks.”  Do you really think that person is fine or are they saying it to be polite, to avoid burdening you with the truth of their misery or to continue on with their day? You see where I’m going.

Here’s what I learned about waiting patiently:

-When all is “fine,” don’t watch the clock. Find something to occupy the time, which slows waaaaaaaay down when you feel stressed. I answered emails, read, watched soccer with my husband (I hate watching sports on TV), walked around aimlessly and used the bathroom more than I really needed to. It gave me a sense of accomplishment.

-Texting and emailing family and friends back and forth not only helped to pass the time, but also reminded me of the importance of friends and family in my life,  people with whom  moments of happiness, sorrow, embarrassment, fear and vulnerability are shared freely, truthfully  and willingly. How grateful I am for you.

-For God’s sakes, do not keep your gaze on the hospital recovery room doors. Everyone but the one guy you want to see strolls through those doors. And when the orthopedic surgeon does finally show up, he’ll come when you least expect it and through a secret set of doors you’ve never noticed before.

I changed my flight home not once, but twice. By the time 2:00 p.m. rolled around, I could no longer keep my mind in that little worry-free zone it had been cooped up in since 4:45 a.m. when the alarm screamed, “Rise and shine!” I was losing it. Gilles does not show his worry. He keeps it hidden way deep down inside, but his quiet demeanor speaks volumes. His uber calmness made me all the more anxious.

Finally, at 2:20 p.m., Dr. Glenn Pfeffer burst into the room (through that secret set of doors) and with his hands high in the air and a wide grin on his face, yelled in an exuberant voice, “Everything is fine, perfectly fine! (No way! There is that word again!).”  Then, with body language that acknowledged our concern, he sympathized, “You must have been worried.  I get it.” He saved the best for last: “The surgery was a resounding success. “

“Some feet are more challenging than others” he admitted. “Realigning a CMT foot is a complex and intricate process and I strive for perfection.”  Nine procedures and seven hours later, perfection was achieved.

Will I worry about the overall success of today’s surgery? Most likely. I am committed to taking 30 minutes out of each day to honor my distress before moving on. A friend told me, “You can’t go backward. It’s done. Ask your questions, embrace the present and move on from there.” And she’s right. Onward and upward.

The Wait

Yohan’s Surgery #2 – The Wait

June 20, 2016

 

The worst part is the wait. Waiting for the weeks, the days, the hours, leading up to the surgery. Now there are only minutes before they bring him into  the OR for this life-altering procedure.  Dr.Pfeffer arrives smiling, wearing scrubs and a sports coat, an odd mix bridging the everyday academic with the skilled surgeon he is.

The Wait

I know Dr. Pfeffer personally. He’s a brilliant surgeon, the best of the best, a perfectionist in every sense of the word.  I would have chosen no one else for this delicate and complex procedure. But I found myself intensely examining Dr. Pfeffer for signs of fatigue, wakefulness, discomfort. “What did you do for Father’s Day?” I ask, hoping to hear that he did not drink too much wine or attend a big party the night before Yohan’s surgery. He reassured me that he had a relaxing day at home, reading articles about CMT. “About CMT foot surgery? ” I laugh uneasily. I think he ignored my last question. If I were him, I might have done the same. All this after last Friday’s email where I wrote, “Take it easy this weekend. We need you in tip top shape on Monday morning.” Seriously?

Whatever the age, I realize it is very difficult for me to trust even the best with Yohan’s care. A mom’s internal alarm system? Overly anxious? Public outcry constantly reminding the public, Do Not Trust your Doctor. Don’t believe me? Google “Trusting Doctors” and you’ll understand where I am coming from.

The longer he stayed with Yohan, looking over his charts, asking questions and engaging in conversation, the more we all relaxed. Bedside manner is everything! Dr. Pfeffer’s calm and reassuring voice  infused us all with confidence and  his steady hands examined Yohan’s left foot one last time. And just to make sure left does not become confused with right (haven’t you heard those horror stories?), he sharpied a big YES on the left ankle (and I did not even have to askJ.) Hugs and kisses were not sparse as Yohan was wheeled down the hall. Calmness reestablished.

So now we wait. After one hour, we received news that all was well. The surgery should last another hour and as the time passes, my heart races, beating faster and faster with each passing minute. Here we go again……time to breathe.

Surgery is Imminent

Yohan’s Surgery #1 – Surgery is Imminent
June 20, 2016
The Eve of Surgery

 

His toes are curled, especially the pinky toe which begs attention by standing just that much higher to make wearing any shoe a challenge. His crescent arches make walking a balancing act. His calves are as tight as the string of a bow and his ankles are turning out as the supporting tendons lose their grip. Thick, but hard earned callouses are just a bonus for winning the CMT lottery.

CMT is usually passed down from one generation to the next. It is inherited. Yet, neither my husband nor I have it. Yohan is the first person in our families to have CMT. His CMT is caused by a spontaneous genetic mutation. A mutation that can be passed on to his children, his children’s children, and so on and so forth.

Yohan will have reconstructive foot surgery tomorrow morning at 7:00 am, a surgery which has been planned for a year and scheduled for 3 months.

CMT foot

A few weeks ago, in a moment of sheer fear and anxiety, I clumsily suggested that we might want to get a second opinion on the necessity of surgery, a surgery that was only 3 weeks away.

In shocked disbelief, Yohan blurted out, “Are you expletive kidding me? After choosing to put my life on hold for a year after graduation? After all the in-depth discussions and conversations we’ve had?   No way. I’m resolute in my decision. Now let’s get this over with and put it behind us.”

Enough said. My worry asked the question and the voice of reason responded: the surgery is a go. The reality is that Yohan can no longer run, walk with confidence or stand without pain. It’s time. It’s time for an upgrade that only the hands and skills of a competent orthopedic surgeon like Dr. Pfeffer can offer. After tomorrow’s surgery and a 6-month healing process, Yohan’s calves will relax, his pinky toe will align, his arch will flatten and his tendons will be strengthened. Tomorrow brings the promise of less pain and more stability.

Any surgery is risky. And the recovery for this particular surgery is long and tedious.  But the possibilities of a new tomorrow are endless. So, when anxiety rears its ugly head, I am guided by Yohan’s words: Plan for tomorrow, then live in the now. Our brightest future lies in the sound decisions of today.