Same foot.  Same surgeon. Similar surgery.

Different results!!!!!!

The recovery experience, so far, has been nothing, and I mean nothing like the first surgery in June of 2016, which is the best news ever. And this is how I’m feeling about that:

We took preemptive measures: The anesthesiologist beefed up the nerve block so it would last longer. And we started his pain medication well before the block wore off. No ER. No crying out in pain. No hiccups.

Well, that’s not altogether true. He had a bad case of the literal hiccups-the involuntary spasms of the diaphragm kind, the day after surgery. Not once, not twice, but 17 times. 17 bouts of annoying hiccups!

After the 5^th attack, we Google searched solutions. He tried almost all of them – holding his breath until he passed out, breathing into a paper bag, freezing a metal spoon and sticking it on his temple (don’t try this at home…you’ll just end up with a headache and freezer burn),  gargling with salt water, etc, etc, etc. He was about to call his doctor when he came up with one last remedy – swallowing a tablespoon of honey. It worked, people! Relief. Hiccups can be caused by acid reflux and the honey soothed and coated his esophagus. Score!

2 weeks post-surgery, the stitches needed to be taken out.  Last time, every angry suture came out screaming, zapping Yohan with electric shocks.  It was extremely unpleasant and almost intolerable. This time ‘round, Dr. Pfeffer told him to take extra pain meds before the dreaded plucking of 75 pieces of rough and tough nylon delicately holding his skin together AND, he suggested numbing spray. Yohan relaxed. When strings were no longer attached, Yohan admitted that the process went, “1000 times better.”  The suture removers at Pfeffer’s office were all like, “Hey, why don’t we use this stuff more often?”  And “I hope he lets us use this spray on every patient….it works wonders!” I’m not even going to comment on those last 2 sentences because all I feel like saying is, “Duhhhhhhhhhhhhhhhhhhhhh.”

The first week is always the hardest…on me. Zoned out on powerful medication that eradicates short term memory, communication with my son got somewhat frustrating.

Every “conversation” went sort of like this:

Me: “Want something to eat?”

Yohan: “Whaaaaaaaaaaaaat?”

Me: “To eat.”  I repeat, forcing my first four fingers together pointing to my open mouth.

Yohan: Ummmmmmmmm

As I stare at him, waiting for him to answer me, his eyelids get heavy, his head drops forward and off he nods. Sigh.

Me: “Yo” I nudge, gently touching his shoulder.

Yohan: Quite startled, as if I had screamed in his ear and shook him hard by the shoulders, he shouts wildly, “HUH? WHAT?” with terror in his eyes.

“Where did I go wrong?” I wonder.

It’s right about now that I felt like jumping in the car and going shopping. Shopping always seems to lift my spirits, for at least 10 minutes, until I look at the receipt and realize just how much I did not need whatever is in the bag.

When my husband Gilles gets sick, he acts like a wounded cat. He isolates. We make scarce, get out of his face and leave him alone.  When I feel ill, I crave attention. When I was young and growing up in Vermont, I used to try to catch a cold by opening my bedroom window wide, letting snowflakes land in my hair and frigid wind blow into my airways. It never worked, not even once. I loved school but I wanted my parents to stay home and take care of my every need and desire. I’d say that Yohan got my genes in that department.

I literally sat next to Yohan for the first week, supporting him through the boredom, the pain, the medication regime. I even tried providing humor (apparently he does not think I’m very funny).

For example, I changed his pee bottle up. This time, instead of an “Honest Pee” container, I offered a Chia Seed container, which we conveniently renamed the “Pia” (Pee-yah) seed bottle.

I bought tons of his favorite fruit: Sumo mandarins, the gigantic, juicy mandarins available for a limited time only in February and March. He asked for one, peeled and segmented, so I took one of our teensy tiny mandarins from a young tree in our yard, and gave him a bowl with the smallest mandarin pieces I’d ever laid eyes upon. Yohan looked at the bowl in his lap, blinked once, twice and then just stared at me, completely confused. “HAHAHAHA, Just joking! ” I cackled. “Elizabeth, don’t do that to me! I’m already having a hard enough time focusing, he complained. And then he mumbled something to the effect of, “ Please Universe,  send someone to my rescue.”

Someone in the infinite cosmos was listening. That same day, the phone rang. My sister Kathy from Vermont asked if I could use a hand.” Can you find a flight that comes in tonight?”  I inquired sleepily, and only half-jokingly. She called me back later that day. I got my ticket!! I’ll be staying a month (a month? I hope we’re still friends after a month), and I arrive in 48 hours. “Hang on sissy,” she said encouragingly.  “I’ll be there before you can say Pee- ya seeds”!

Can you say life saver? That’s exactly how I feel about Kathy’s visit. She cooks, cleans, gardens, laughs and takes great care of Yohan. I’ve been able to catch up on my sleep, for which friends, family, husband, and colleagues are immensely grateful.

To everyone who has sent us messages, offered words of encouragement or just simply checked in to see how things were going, I can’t tell you how much we all appreciate it. Thank you for your kindness. How grateful we are for each and every one of you.

Yohan now is sporting a boring white cast (that will soon change) and a full beard which he is not shaving off until he can walk again (OMG). He’s doing quite well. I have a good feeling about this last surgery. We’ll get this kid up and walking yet. He’s a survivor!

PS: Maybe the beard is not so bad. I think it is growing on me.

UPDATE!

Yohan had his second  7-hour surgery ( a redo of his left foot) on Wednesday, March 29 at Cedars-Sinai, in LA with Dr. Glenn Pfeffer. As you may have guessed, his first surgery was not successful. We will probably never really know why, but apparently, some of Yohan’s muscles in his lower leg were unusually strong, which made for a very successful tendon transfer (a strong tendon replaces the weak tendon to correct foot drop.)

Yohan is now able to lower (plantarflex) and raise his foot (dorsiflex) his foot (that’s the good news). The bad news is that something went awry. The end result was an extremely pronated and flat foot, a misaligned heel and a big toe that was completely crooked.

 

 

Bottom line – he was not able to walk on that foot. He’s been using a knee scooter and crutches for the past 10 months. HE’S BEEN COMPLETELY OFF HIS LEFT FOOT SINCE THE 3rd Annual CYCLE 4 CMT IN AUGUST OF 2016!!

Dr. Pfeffer looked far and wide for answers, and more importantly, a solution. Several ideas were floated around and the option we like the least was to fuse the subtalar joint or the joint directly below the ankle (due to the possibility of it being hypermobile). He wasn’t thrilled about this option as you lose lateral movement and fusion is usually last resort procedure.

 

 

 

 

After much discussion, this is what ended up happening:

 

Pfeffer straightened Yohan’s big twisted toe with a fusion. He no longer can bend his big toe, but he has no toe movement anyway, and it was just getting in the way. Now it will stay put. He took his big toe tendon, which he no longer needs, and put it on the inside of the foot, creating a normal arch.

He also unscrewed the screws from the first heel osteotomy, filling the holes with cadaver bone, realigned the heel and reinserted the screws to hold the new position.  The three other toes were lengthened by cutting the tendons and shaving off toe bone to straighten them.

He also lengthened the Achilles tendon, which has always been very tight (this is why he walked on his toes when he was little). With such a contracted, stiff foot, surgery is always that much harder Also, he had an overabundance of scar tissue, which very difficult to work with.

 

 

I keep obsessing over the cadaver bone part. Like, whose bone did he receive anyway and what was that person’s story? Was her name Eloise or Gertrude?  Was his name Emilio or Tom? Was the person young or old? Where did the bone come from a hip, arm,  knee or foot? Did that person have osteoporosis or bones of steel? I guess we’ll never know the answers to the questions which haunt me. I just want to thank that person, whoever you are for your bone donation. Your selflessness may help my son walk once more.

Dr. Pfeffer believes that this second surgery has a 95% success rate, but really, we will not know for months, when walking and rehab begins.

We are all so glad it is over.

After surgery, Gilles and Yo drove back from LA the same night and did not arrive until 4am. Since he has such problems with pain the last go round, we decided to medicate him well before the nerve block wore off. That seemed to have worked, as he has not complained of much pain to speak of. A Relief.

Yohan is pretty out of it at times, but we are already starting to bring down his level of pain medication. Gilles and I are taking turns medicating him every three hours, especially at night. Yo returns to Cedars in 2 weeks to get the soft cast off and the fiberglass cast on.

 

We are very hopeful that once the foot heals, he will be able to walk and get around.

 

Yohan has been accepted to 2 graduate schools in the fall, both in LA, so he is excited about the possibilities that await him in the future. As much as he loves us, and we love him, regaining an autonomous life is the ultimate goal.

 

 

Please keep him in your thoughts and prayers. And, thank you for your love, support, and kindness. It means the world to us.