Indecisive Us

I so wish I could tell you that God has sent some lightning bolt that clearly dictates to us where Ava should go for her nerve transplants and grafts, but that is not the case.  Joe and I are still torn as we try to make up our minds. 

We have eliminated one center, the one in St. Louis.  The team of surgeons that we met with while there at Washington University were absolutely top-notch in their caring approach as well as educating us for what to expect.   However, they do not ever take part of the C7 nerve from the opposite good arm, and use it to try to gain some hand and wrist function.  They simply fuse the wrist and offer a muscle/tendon transfer to gain the ability to move her hand from a somewhat closed position to a more closed position, if that makes any sense.   

Ava had missed the last 5 weeks of dance class, but her kind teacher, Kay Prunty, let her dance a song anyway. She receieved a trophy along with the other kids for her work all year long. Photo courtesy of Amber Bergeson.

 The C7 nerve has various functions in a normal situation, and most of them are duplicated within the other 4 nerves that form a brachial plexus. So, the theory is that if a kid is young enough to have a mind that shows enough plasticity, half of the good C7 nerve can be transferred over to the injured side and the child’s body will be able to figure out what is left side and what is right side. 

Ava is in this gray area.  Typically, brachial plexus injuries happen to young men on motorcycles or babies that get stuck in the birth canal.  The 3 teams we visited had never seen a 4-year-old with this before. 

 

Ava is developing all sorts of interesting adaptations. Here, she is using her leg to hold the drinking water faucet on, so she can use her hand to hold the cup. It is so hard as a parent to watch and not jump in to help.

 
As a parent, you want to do everything in your power to protect your child.  We have always thought side-by-sides were so much safer than 4-wheelers because of the seatbelts.  In fact, Joe bought us this Gator last Christmas because it had more seatbelts than the Kubota we had.  Ava’s accident is a rare case where she probably would have been better off without a seatbelt.  The teams we met with said that Ava’s injury (having the C5 left intact, with C6, C7, C8, T1 all avulsed/pulled out of spinal cord) is typical when your arm is raised and then yanked away from your neck. So, instead of tumbling out, her arm got caught up in the 3-point seatbelt and caused her to lose function in all those nerves. 

 

They just barely beat the rain when harvesting our first-ever barley/pea crop. Vince and Liv were excited to help throw tires on the huge ‘slip n slide’.

 
So, here we are, knowing that God has ordained this tragedy for our little Ava, yet ridden with guilt as we try to think as clearly as possible regarding the huge decision of Mayo vs. Cincinnati.  I decided I absolutely wanted to have some dates held so last week I scheduled with both, and hope to cancel one of them within a week. The ideal situation is between 3-6 months after accident, and these surgeries are scheduled now for 3.5 months.  It takes 2 years to find out what will happen with the hand and wrist post-surgery, but usually around 6 months the nerves have grown enough to give some shoulder rotation as well as elbow flexion.  Ava has a March birthday and I think being able to go without a brace 23-24 hours a day would be a nice birthday present!  

Pray for clarity for our decision.  That we may be at peace and not second-guess ourselves. Pray for Vince, Liv, and Violet that they may know our love for them is stronger than ever.  We praise the Lord that Ava’s pain following her myelogram last week has now subsided.  We thank Him for the little things like Ava giggling as she considers that Mom and Dad were once kindergarteners.  I hope you have a great weekend and enjoy each day given to you.  

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7 thoughts on “Indecisive Us

  1. My tears are not helpful but I have them anyway. More loving parents I have never met. What a wondrous family. Words fail me. Prayers for all.

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  2. Hello,

    My name is Janelle and I am originally from southwest MN. I have seen bits and pieces of your story shared through Facebook. My heart breaks for what you are going through but also rejoices with you in your trust in Him and the extreme love and support you display.

    I just graduated as a doctor of physical therapy from Mayo Clinic three weeks ago. I actually just accepted a full time position at Mayo Clinics hand therapy clinic. I previously did a clinical rotation there and for what it’s worth, I wanted you to know how great the team of specialists and surgeons are. They do a lot of brachial plexus surgeries here. I know that you will likely find this at any location you are considering.

    I will be praying for your family as you make these tough decisions and that He will provide you with clear and direct guidance. I pray for peace and confidence in your decisions.

    My husband and I live in Rochester and have a wonderful church family here. If you ever need a place to stay or anything else please reach out to me! We would love to meet you and help in any way we can.

    Thanks for sharing your story.

    Janelle

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  3. I owe my life to Mayo. They discovered a staph infection under plates and screws in my shattered arm that hadn’t healed for over 3 years. Lots of other doctors had told me it was fine, but I knew it wasn’t. Dr. Shawn O’Driscoll is an amazing upper extremities surgeon at Mayo. If I ever have anything serious wrong with me, I would be back on Mayo’s doorstep in a minute. Excellent doctors and excellent staff. Please consider Mayo. It’s tops.

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