CAM surgery

There are many things that step by step put us on this course of action. When Hyrum was born we had so many things hit us at once. We were prepared for the fact that Hyrum had no bum hole and would need surgery. That was it. That was all we knew before he was born. After he was born, the list was long and grew almost every time a Doctor walked through the door those first few weeks as things were discovered. As time went on we learned about what each item would mean for us and for Hyrum. For Hyrums ear, the one thing we learned was that surgery was best if left up to the child. So we continued watching the development of up coming possibilities without talking about it with Hyrum, so that when he was ready we would be prepared with knowledge and the best course of action.

Why Surgery

When Hyrum was very young, his big sister who is 10 years older than him would say to him "guess what" he would say "what" to which she would respond, "no you have to guess". On this would go until he would say to her "you love me" to which she would give him a big hug and say "that's right I love you". Well one day, his response back to her was "Rachel, if you loved me you would give me your ear".  Well least to say Rachel came to us in tears, wondering how she could do just such a thing. After much assurance she calmed down, but Hyrum never quit talking about when he would get a different ear.  This was never about us feeling like we needed to help him be "perfect". Hyrum is Hyrum.  He has a strong sense of confidence, he has an easy time of making friends, and can generally be found defending the underdog.  If you were to read any of the other blog posts about Hyrum, you would learn one thing that a preschool told us once "When there is a will, there is a Hyrum to find the way"

What we learned

There are three types of outer ear possibilities. And only one type of inner ear possibilities. 

The first outer ear method we considered is the rib graft method. This is where the surgeon takes a piece of rib to form the outer ear. This is good because it is all natural, a part of their own body that the body won't reject. The negative is that it usually requires up to 6 surgeries. But long term a good option. 

The second is the medpor method. This is a special porous plastic that blood vessels can grow through that they sculpt and put under the skin for the skin to mold around to form the outer ear. This is usually done in one surgery, sometimes 2 depending on how good the doctor is or for any touch ups. The negative, it's not your own body so can be rejected. It's harder than the rib graft and can more easily be damaged or fractured. 

The last type of possibility, which we never considered was a silicon ear.  This is where they take a mold of your "perfect" ear and  create you one that comes on and off.  With this method you would not be able to have an ear canal. It would be for pure cosmetic purposes and we felt that if Hyrum was going to get a new ear, he would also get an ear canal.

Decision makers

The first thing that we liked was the all in one surgery. That is a nice option. The second thing that swayed us was attending a medical conference in Denver July 2014. We were able to meet one on one with both rib graft and medpor doctors. After looking at Hyrum's stomach and the amount of scars he has, it was the consensus that due to scar tissue, Hyrum was not a good candidate for rib graft.  To verify this, during one of Hyrum's surgery in August 2014 to make his appendicostomy (to learn more about this go here) we had the surgeon look at the possibility for a rib graft.  Afterwards, we were told it was not a good option as Hyrum has too much scar tissue.  This was the swaying moment for us.  We were heading for Medpor method.

CAM surgery
If your going to have 2 surgeries or 1 surgery, which would you pick? Well depends on the doctors really.  It so happened that the 1 surgery was done by 2 of the best in their field doctors.  This was a "duh" kinda moment for us.  The risk of infection being lower was a bonus for us.  So we swapped insurance plans, then worked with Dr. Roberson's office to get approved for the surgery.  Once it became approved out of network, we worked with the insurance by visiting 2 doctors locally to give a referral so the surgery would be approved in network.  The first doctor was a local ENT, the second was a surgical ENT that does rib graft ear construction.  Dr. Muntz was the second doctor.  He came into the visit with "I think rib graft is the best method, why would you want anything else".  I held Hyrum's shirt up revealing his tummy and responded "Scar Tissue". The doctor immediately stated, "Well medpor is a fine option, and if you can have it done in one surgery, that is even better.  Let me write you a letter of referral.  Good job on doing your homework".  That was it.  We were approved for the surgery to be in-network.

Surgery 

Hyrums surgery date is set for September 23, 2015.  We have a pre-op appointment on the 22nd, so we will leave here on the 21st to begin this journey.  We will be required to be in California for 4 weeks while his ear canal heals.  He will have weekly appointments with the plastic surgeon in LA.  Hyrum will not be able to get his ear wet for 8-12 weeks nor will he be allowed to have any impact for 3 plus weeks.

This is Hyrum taken August 21, 2015.  This is a very good side view of his "Little Ear" that we have termed it.  As you can see there is no ear canal. Over the summer of 2014, we learned that Hyrum was being made fun of at school because of his ear.  He told us that they were telling him he had an "elf ear".  This of course, broke my heart.  But my amazing husband took this one for a challenge and won.  So that night as he was putting Hyrum to bed, he told Hyrum a secret that I will share with you.  "Hyrum is half elf, if you don't believe me, look at his ear.  Did you know that elves are very smart, and they live a very very long time." Well Hyrum's eye perked right up for how could it not be true.  He WAS very smart after all. After that he started to introduce himself as "Hi I'm Hyrum and I'm half elf".