Surgery a Success

Mom here - John had his first of three surgeries today at Stanford Medical Center. Surgery took 5 1/2 hours and doctor has deemed it a success baring any unforeseen problems. Dr. Chang removed a piece of John's hip-about as long as his pinky finger and attached it to his left hand. He then made a tube out of skin in his abdomen and attached the "new thumb/post there. It will be attached for approximately three weeks. The doctor will then remove the thumb/post from his abdomen. It will be covered with skin and have it's own blood supply. This is what we are hoping will happen.

John is experiencing a lot of pain in the area where the hip bone was removed and the doctors say that this is to be expected. They will be keeping him in bed until at least Saturday in a part of the hospital that is semi-ICU. Only two visitors are allowed at any time, so please call me before if you are planning on making a visit. I will try to update this on a regular basis. Thank you for all your prayers and good thoughts sent John's way.

The sound of one hand clapping

I had my pre-op appointment yesterday and the surgery will be the first on the list for tomorrow. 
That sounded pretty good until they said the check-in will probably be 530am.

The surgery is expected to take 4-5 hrs which should give them plenty of time to dig out a couple of inches of hip bone and graft it to what remains of my thumb then tie the whole thing to my lap.

The hope is that this surgery will provide more bone and skin to create a better base for a future toe-to-thumb procedure.

The surgery will be at the Stanford Ambulatory Surgery Center in Palo Alto and I will be at Stanford for a couple of days before being transferred to... most likely Lytton Gardens off of University in Palo Alto, but that's not confirmed.

I will not be posting for the next month but I will make sure info and PG pics are posted by my family or friends.

Wish me luck.

John

I'm still here

Okay I know it has been a long time since I last posted something, but I've been fighting a gnarly cold.
I'm still not 100% but I feel a lot better than I did two weeks ago.

So what's new?

Besides having a great trip up in half Moon Bay, I was able to meet with a surgeon from Stanford to talk about my toe-to-hand surgery. As I've previously posted, I was a bit concerned about risking my toe for the chance of a thumb. The procedure seemed pretty extreme; surgically remove almost the entire second toe up into my foot and placing it onto the small piece of bone that was my thumb.

This surgeon agreed with me and says that there is not enough skin, muscle, or bone around my thumb area to guarantee a good outcome in one procedure.

So what are we to do?
On March 12th Dr. Chang is going to take bone from my hip and attach it to my hand
(and now for the really weird part)
and then attach my hand to my groin.
Yep my  groin.
I will be Al Bundy-ing for about 1 month while the bones join and skin grows around the piece of hip/thumb.  Then I will "get a break" before he takes a piece of my big toe and attaches it to the hip bone/thumb.

When I described this series of procedures to my friend Joel he told me that it's a good thing I don't have kids because I would confuse them with my version of the "Dem Bones" Song:
 "The toe is connected to the hip bone,
 The hip bone is connected to the thumb..."
[That's just what I was thinking too Joel]

At least I'll have my prosthetic right arm while my only hand is tied to my body...Wrong.

Last week I found out Anthem does not believe that a prosthetic right arm is "medically necessary" for me and have declined the request for one. Hanger has told me that this is not uncommon and has already started the appeals process.

Unfortunately, this is not a quick process.

Still not fired up to be without hands for a month, but at least I'll be in the Bay Area (even if it's in a hospital/care facility) and the doc does not expect any gait problems when he gets around to removing my toe.

Home sweet home

I love my family,
my sister and her family have been amazing,
and it's hard to complain about the weather in SoCal
But I have still been missing Half Moon Bay. 

So when the Dorseys were headed skiing and my mom was vacationing with a friend I knew I had to try and talk my dad into hauling me back to the Bay Area for some R&R. 

Fortunately I didn't have to beg...
even after I told him Lucky would be coming too.

Lucky and his toy

 It was a great week.

• Perfect weather.
• Plenty of visits with friends (or as Joel would say "I got my love tank filled up").
• Lots of walks on the bluff and beach (thanks Lucky).
• And I was able to swim with the team. (Maybe swimming "with the team" is a bit of an exaggeration, but I was in the water at the same time as the team.)

More on the swimming:
I made it to the pool on four consecutive days (including 1 day of LC with the ladies). 
Each day Coach Tom tried to make me believe that I can become a kicker despite my history and lack of experience incorporating any of the advice that past and present coaches have offered me.  I tried and will continue to work on it because I really want to swim open water again (and I hate running).

Coach Tom on the deck at the San Mateo Athletic Club

 * I'm holding off on the swim prosthetic until I maximize my kick & my right shoulder is ready for it.

More inspiration: paracycling

I'm posting this a bit late, but I wanted to share some pics from the UCI Paracycling Track World Championships that I went to a couple of weeks ago.

  
Although I like to ride, I bike camp or go or day cruises.
Road racing is intense.
Track racing is even crazier.
One gear, no brakes, your feet are clipped in and the banked walls are insanely steep.

Tandem stokers are blind.  They were hitting +70mph.

So how did I end up sitting in a velodrome for two days?
Thank to my friends Bernadette and Shawn.
Unfortunately our night of track racing ended up being only a few heats (scheduling snafu), but watching riders with missing limbs travel at +40mph had me hooked so I made my parents take me the next day. 

You wouldn't believe how helpful it is to see athletes like these not just surviving, but dominating.

These Chinese riders did not have hands and kicked butt!

If you want to see more (and higher quality) photos, check this slideshow out.
http://velonews.competitor.com/2012/02/gallery/2012-para-cycling-track-world-championships_206267/attachment/uci-paracycling-track-world-championships-2012-18

It's not always sunny in SoCal

Before I start telling you about my last couple of weeks I want to let you all know I am fine and looking forward to another trip to the Bay Area to check-in with Half Moon Bay and swimming with my friends at the San Mateo Athletic Club.

Now back to the story.
The problem with someone taking your arm and most of your other hand is that your recovery involves a lot more than having the stitches removed and a few weeks or even months of re-hab.
I am embarrassed to say that I've envied the people with one good hand that I've read about and seen on the internet.

But the promise of a new thumb has always been there.
The surgeon on Maui had made it seem like it was no big deal.
Once my hand had healed from the initial trauma -
(and the all-nighter required to re-assemble my wrist & middle finger plus the touch up in week 2)
a hand surgeon in CA would snip off a big toe and connect it to my left hand.

Sure a toe on my hand would not look normal,
but that stubby non-finger on each of your hands does more than help you hitch-hike or show "like" on FB. 
It makes up 40% of your hand function by providing (improved) pinching, griping and grasping.

Forty percent!
Now factor in that it would be my ONLY thumb.
Yeah, It's a big deal.

So I found a great hand surgeon and have been seeing him monthly waiting for the... green light.
Then two weeks ago I actually asked about the surgery and that is when the dark clouds rolled in.

First he says that he does 1-2 of these per year.
(Mostly people from the construction and rodeo crowd from the nearby states.)
Then he starts telling me about the risks:
About an 8% failure rate (No thumb and now I'm only able to count to count to 9 with my socks off)
Then my thumb tendons might stick which would require more surgery.
Or my thumb may not have enough sensation (requiring nerve grafts) or too much sensation (= more pain)

And my foot...

I've never thought very much about my toes and doubted I'd miss one, but
They don't just take the toe.
They take the bone up into the foot.
And then he started to talk about gait.

As everyone that's seen me walk knows, I'm not graceful.  How would I do without a toe?
Taking the 2nd toe vs the greater toe (big toe to non-medical people) could limit the effects, but it's harder.
And with any amputation I'd be at risk for forming neuromas (nests of nerves that are really painful).
And then to top it off...
But before I could walk I'd need to be in a wheelchair for about 3 weeks. 

Then he hit me with Taiwan.
I guess they do lots of microsurgery in Taiwan (No OSHA???).

As if it were not enough to start thinking about being a willing triple amputee, I now had to consider flying 15 hours and staying who knows long in a foreign country.

Then my massage therapist (who is amazing) tells me:
"If you get a limp I'll kill you."
Why?  A limp usually leads to back problems.Yipee.

And that's when I started thinking about skipping the entire thing.

There are so many people out there that would love to have strong legs, both shoulders and a pair of fingers who am I to gamble for more.

Lots to think (and worry) about, but I feel much more at peace with it and will be talking with another surgeon soon.

The making of an arm

So this happened awhile ago, but thought I'd share how a prosthetic arm mold is made.

Step 1:  Strip down, throw on an apron and saran wrap everything up.

Step 2:  Wrap the stump with plaster (like a typical cast).

Step 3:  Let it dry.

Skip a few steps including when I almost passed out when Jon tried to pull the mold off (my arm cramped which shifted the muscle down into the mold.  Not fun).  Then Jon and his aide made a test socket with the mold.

Step 6?  Slipping my stump into the socket with the aid of a nylon sock.

Last Step:  Jon checking for spots that are tight and or loose.

 

 I've been wearing this for a couple hours each day (It's fitted with a shoulder harness and chest strap) to get used to it.  Hopefully I will be getting my arm/hand in the next few week so stay tuned.