Saturday, March 22, 2014

Decisions, Decisions...How We Decided to do a Toe to Finger Transfer

As you might have read in my previous post on Zeke's Robohand, we are anticipating Zeke having limited usage of his "good" side due to an upcoming surgery.  This surgery is a big deal.  And deciding to do it was a big deal too.

Our initial consultation with Shriner's involved a general physical, x rays, and the quick assessment that Zeke might be a candidate for a toe to finger transfer.  While we went into his adoption knowing that we would take on whatever medical needs he had, we were pretty confident that there would not be much that could be done for his hands surgically.  Add in that we had never even heard of the ability to use a toe to create a finger and we were amazed at what could be done but also quite surprised.  Our second appointment with Shriners involved a more specific discussion regarding what the options would be for Zeke, from prosthetics to a toe to finger transfer.  I had now had a few months to start investigating the options and had list of questions for the doctors and prosthetics team.

However, even then, finding information on the toe to finger transfer was difficult.  As one might imagine, it's not a surgery that is done often.  (At least not in comparison to things like appendectomies or ear tubes.)  So a Google search doesn't yield a ton of results.   Many of the folks in the limb difference forums that I participate in opted not to do the surgery so I couldn't even find a single parent or patient who had decided to do the surgery.  However, for many of those individuals, their fingers and hands looked different than Zeke's.  Many of them had one hand with five fingers and were contemplating the toe to finger transfer to add digits to the opposing hand.  In those same forums are individuals who have limb differences themselves.  Some of them are very strong advocates for not changing one's body and instead embracing how you were born.  Also, much of the information available online is for people who have used the surgery to create a thumb.  Again, not exactly the same as Zeke.

We also knew that regardless of if we decided to do the surgery, Zeke would be fine.  He is so innovate and capable.   We knew that he would thrive regardless of what we decided.

Finally, the surgery is complicated and complex.  It is a 5-6 hours surgery.  Afterwards, because it involves reattaching tiny blood vessels, Zeke will need to be sedated overnight.  The actual hospital stay is approximately 4-5 days.

All of those things represented some big unknowns, some of which were scary and some of which were just kind of confusing and hard to sort out.

The surgery in and of itself has a high success rate (in terms of the toe attaching correctly) and the specialist who recommended it is a highly qualified doctor.  He is a Mayo surgeon, who operates out of Mayo, who is also a teaching professor at Mayo.  But those facts still don't change the fact that you are having to make a choice about altering your child's body, placing him under anesthesia, and allowing a surgery that will cause him pain.

Eventually we decided that some of our reservations were fear based and that while fear can be a good thing, sometimes fear keeps you from doing things that you do need to do.  We tried to approach it from a very objective place, which is really hard when it's your child.

Three things helped us arrive at our choice to go forward with the surgery.
1.  I kept seeing on many forums adults who had limb differences talking about their bodies aging and how because of their limb differences, certain body parts were forced to compensate for the missing parts, resulting in overuse and strain on those parts.  For Zeke, over his lifetime, his thumb and finger will be used much more than most other people's digits.  This surgery will create a third digit which will help to relieve some of that overuse.
2.  We really could not get anyone to specifically answer the question, "What benefits will Zeke gain by having this surgery?"  No one could really give us a list of things he would be able to do because of the addition of a third finger.  So we started brainstorming a list of tasks that we do every day with our hands, things we just do and don't think twice about.  Things like opening a gallon of milk, feeding the baby a bottle, changing a diaper, starting our car, and tying shoes.  And we started brainstorming a list of tasks related to specific jobs, like carrying heavy buckets, using a hammer, and typing on a keyboard.  We then tried to do those tasks with a thumb and half a pointer.  While I know Zeke is used to using what he has and we are not, it did give us a broad idea of what things would probably always be hard and what things would be easier to do with the third finger.  It also helped us to think about what things he may have to have modified overtime.  Even a simple car ignition switch is going to be a challenge for him because he will have to reach across the steering column and try to use the finger and a half to turn the key.  I am not sure if he will have enough strength to do that.  So there is a good chance that without the surgery, every car he would buy would need a push button ignition.  Thinking through this made us realize that perhaps this surgery would enable him to have to make less modifications to things like a car ignition switch.
3.  We also took the time to recognize who it was that was saying this surgery was a good, viable option to increase Zeke's functionality.  It was coming from a hand surgeon who is one of the best in the country.  While listening to our gut and doing our research is important, the reality is as a whole, our nation is kind of a nation of experts.  Because we have so much information at our disposal, we can easily make our educated opinion as just as educated as someone who is a true expert in the field.  It seemed to us that we did need to place some weight on who it was that was recommending this surgery.

So a few weeks ago, Zeke had the first of his pre op procedures:  two MRI's to map the blood vessels in his hand and foot.   Now it's just a matter of a few months before we head to Rochester for the actual surgery date.


Dardi said...

I missed your last post, but Kemeri just had surgery on her hand a few weeks ago. Yes, very hard decision, but we went through all the same processes as you. Eventually, they may move a toe, but for now they took the nubbin that was her forefinger (it was not viable on its own) & grafted it to her thumb to extend it. They opted for this over a bone graft from her arm or thigh b/c they were able to create blood flow so that her thumb should now grow with her. She has amniotic banding, so that was released, they opened her hand to check out the tendons, & they increased the indent in her hand. The goal is for her to eventually be able to grip an object. She has had a ginormous cast on, which comes off this Wednesday. Her surgery ended up being closer to 6 hours, but she has been a trooper. Best wishes as you move forward!!

Benji Wiebe said...

I'm finding this all very interesting. Julie says,"why don't they come over again?"