Fixing Frank

We have finally chosen which team will try to fix Frank (we’ve named her right arm…wouldn’t you?   We are just trying to keep it fun!).   

We are going to Cincinnati Children’s Hospital.   In exactly 4 weeks, on August 19, Ava will undergo an approximately 6 hour surgery by Dr. Yakuboff and Dr. Schwentker, along with a bunch of other helpers in the room.  Throughout the day, they will conduct intra-operative testing and those readings can sometimes affect the plan, but here is the simplified idea right now. 

1.   Use the spinal accessory nerve to gain back elbow flexion. 

 

People always ask, “How’s Ava?”. SHE IS HAPPY AND LOVING SUMMER!!! She is working through some therapy but otherwise is just doing a lot of normal 4-year-old things. She has been especially chatty today!

 
2.  Use part of her C5 (the 1 out of 5 nerves in her brachial plexus that escaped uninjured) to build back some shoulder function.  We are told that best case scenario would be that she could lift it 90 degrees.

3.  Take the entire C7 from her good side (left side) and aim for her hand and wrist.   It will be passed through her neck, between her trachea and spinal cord.   

4.   Save the intercostals, which are used with breathing.  The surgeons in Cincinnati like to keep them as an “ace in the hole”, and may perform another surgery in a few years.  It could be to provide sensation and feeling in a place that needs it, or be used as a source for connecting a free muscle transfer if the C7 doesn’t work like we hope. 

It was super tough to call Mayo and cancel that appointment.  We AGONIZED over the decision.  The team of surgeons there is absolutely top-notch, and well-respected among their peers. They publish lots of papers and lecture around the world, as well as see a huge volume of traumatic brachial plexus injuries.  Dr. Shin would always call us back in such a timely manner and fully answer all our questions.  However, we eventually just had to choose one place for Ava and here are some reasons we chose Cincinnati:

1.  The surgeons in Cincinnati have modified their version of a cross C7 and no longer does it the ‘old way’ like Mayo does.  The nerve pathway is a bit shorter, saving precious time, and also allows for the potential for finger extension — which would not have been possible the way that Mayo was grafting it.  It’s kinda complicated anyhow, and that’s the main gist of it. 

2.  We think it is wise to use the C5 to strengthen up the shoulder area.  We agree that what she has now may never be enough to be functional. 

3.   We think saving the intercostals is a wise move. Doing the C7 has the potential to stun the phrenic nerve and that is super-important for her diaphragm and breathing, so it is playing it safe, as the intercostals are also important with respiratory functions.  Also, it gives one more chance down the road for what would likely be a sensation add-in. 

4.  Cincinnati has been extremely easy to work with.  I honestly think that the scheduling lady, the therapists, and the surgeons all share a desk.  They work seamlessly and have been a huge resource of information for us as we work with Ava at home.  For instance, they have an occupational therapist who spends hours and hours a week on the phone helping other therapists help their patients, since most have never worked with these specific injuries. 

I have been trying to free myself from any worry and simply commit her to the care of the Lord. It certainly has been a time of grieving.  I don’t know how to explain how one can grieve the loss of an arm….but maybe it is more like the grieving is because of a loss of a normal childhood.

Today, Ava had professional pictures taken.  I really wanted to have some scar-free pictures for her to cherish. She loved the attention from the photographer, as well as having her arm out of the sling.  Our summer days are just flying by, and today was no exception. 

Lastly, Joe and I waited patiently, hoping for that ‘sure sign’ to help us decide.  Do you know what I mean?   This surgeon does mission work, or that surgeon has poor reviews or something like that.   We would often sway to whichever team it was that we had talked with most recently.   At this point, though, we are relieved to have made a decision and simply pray for a peace that passes understanding regardless of the outcome of the surgery. 

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5 thoughts on “Fixing Frank

  1. Praying for you and remembering your entire family in this time of adjustment. Hopefully you will find that true peace with your decision. And, yes of course I totally understand the grieving you are going through-you are mourning the loss a “normal” use of her arm and how much it will affect her life.As parents we want things to be as easy for our children as possible. Praying.

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  2. I believe these exact, detailed decisions you have made were done with the Lord sitting right beside you. I pray that you are able to stop the questioning and know that HE made these decisions with you and for you. I pray that Ava has the next four weeks to feel your faith in the Lord as well as your faith that the right decision has been made. God Bless You.

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  3. So wonderful to have that decision made….one step closer to swimming with the STINGRAYS!! I will keep Ava, all of you and the doctors in my prayers for a successful surgery and quick recovery.

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  4. I believe that you made these decisions with the Lord’s guidance! You are great parents! You made this and all your decisions with your children’s best interest in mind. May you experience God’s peace and blessings. Mourning your child’s loss of “normal” is to be expected. We are continuing to keep Avi and your family in our prayers.

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  5. I am praying for peace for you and hope for the future. That you would not be discouraged but would rest in knowing that this world is not our home…Ava is not “home” yet but she does have God’s help and guidance in this world. God bless you!

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