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".

Microtia Conference

Karl especially had a good time at the picnic at the park

 Karl loved helping the Sophono's guys set up their booth

 Hyrum loves wearing the sophono's softband.

But afterwards he was super tired and decided to tuck in his new animals to bed!

Ice Cream

Had to have his Ice Cream even though he was super cold

Hyrum's List

By the time Hyrum was a week old, one of the Resident Doctors sat down with me and listed all of the problems that they found with Hyrum. It was a daunting list that we were not expecting. We went from 20 weeks pregnant knowing that he had issues with his intestines, to 32 weeks pregnant knowing that he would need surgery for lack of an anal hole, to 1-week post birth we got this...

Issues:

• Hole in Heart between ventricle chambers - Doctor last night said it's making less of a sound and is probably healing itself. VSD is the technical name we learned. By age 2 it was a crumb size, he will be seeing his Cardiologist this coming year (2012) to make sure all is ok. We were told to look for signs of exhaustion, or inability to get up and do what he wants as he grows. What does it mean when he is completely opposite! We love watching him with all his energy as that is one sign that all is well with his Heart!
  

• Ribs: has an extra set of ribs fusing with collarbone pushing it up - but don't know what they will do if anything about this, they need to check the structure more. This has not ever caused issues except when he had the bout of RSV, the extra weight made it difficult for him to breath. It makes him look a bit meatier in the chest, but nothing serious!
  

• Neck: some of the vertebrae in his neck are deformed and may cause spinal problems - Neurologist team needs to evaluate and determine if surgery and neck support need to be put in. We were told he would never hold his head up, and possibly need something to support his neck for the rest of his life. Surprising enough this was difficult to swallow, but we accepted it (what else does a parent do right?). We were very careful with the older kids holding Hyrum as we didn't want his neck broken. While at church when he was about 6 months old, I was holding him in a Lazy L position on my lap. It was enough for him to see around him without sitting completely up. When all of a sudden, he lifted his back and neck off of my hand sitting in a complete upright sitting position on my lap....holding his own head up! I was so shocked that I nudged John (who was sitting next to me), we stared in absolute amazement at the miracle we were both witnesses to. If you feel his neck, his muscles are HUGE. When we first showed his Doctor, we were told to not let him play football, but otherwise he should be a completely normal child.
  

• Intestines: Surgery went well, he has 2 stoma's (ends of large intestine sticking out of the stomach) - The next step for him on this is to let things heal for a couple of months, then he goes in for testing to see what is going on with the lower end of intestine and where it has tried to attach. Hopefully, it is attached to the prostate or lower rather than bladder or higher as higher is a worse long-term prognosis due to nerves and control. At around 3 months he would then have his 2nd surgery, then at 6 months another surgery to start making the anus, then who knows as it is all based upon what they find, how he responds etc. Of course, this did not happen. His intestine was attached to his urethra and of course, with all the problems we did not have everything taken care of by the time he was 9 months. I would say that this was the easiest thing to deal with, but caused and still causes most of our stress and concern!
  

• Left Ear: Needs hearing test to see if he can hear, and nodule took off - otherwise looks good. We learned that he can hear almost as well as most kids can with two ears, with his one ear. The Nodule (or Dog Tag is what we called it) was taken off when he was about 10-11 months old when his tonsils and adenoids were removed along with a tattoo placed on his "pouch" on his urethra where his intestine was attached but didn't heal correctly. We combined a few surgeries as he doesn't do so well with surgeries...or more the medication afterward.
  

• Right Ear: Needs hearing test, and constructive surgery. We don't know much about this process yet. Microtia/Atresia. Before he came home at three weeks old, we were told he could not hear anything out of his right ear. I started to believe otherwise when I would whisper in his ear and he would completely understand me. So a couple of months ago we took him to the Audiologists and found that he can hear, it is more of a whisper when you talk to him normally, but he can hear out of his right ear. The surgeries will most likely take place sometime around the age of 8-10, we are looking at doctors now and finding the changes in surgeries impressive and excited to see what will happen in a couple more years!
  

• The right side of face: minor nodules (he has scratched one off) - not a big deal. By the time we left the hospital, he had no nodules (dog tags) left on his face! We since learned that when they have nodules on their skin like he did, that the chances are huge on having them on the inside of his body. When he came down with RSV it was right after his first bottle, so they thought he had a fistula between his esophagus and his lungs causing him to aspirate, This was Friday, on Monday they had ruled everything out and was suggested to test for virus...and that is what it was.

We learned a few things later on:

• Later we were told his jaw was crooked, that when he was a teenager he would need surgery to break his jaw and put it back into place. So about a year ago, I took Hyrum to a facial plastic surgeon. The doctor seeing Hyrum sucking his pacifier and then looking at his x-ray pictures told us that by allowing him to suck on his pacifier past the usual year (at the time Hyrum was almost 4), Hyrum would not be needing surgery as the sucking helped strengthen his muscles and straightened out his jaw...hence no surgery needed!
• Hyrum's head became deformed (flat on one side) over his first few months of life. At nine months, life became such that I was able to take him to the plastic surgeon for a helmet. We were told that 1) he is too old for a helmet, 2) he would grow out of it eventually. I asked why they didn't do something sooner as they knew Hyrum since birth and I was told that they didn't do cosmetic fixes on baby's that they felt wouldn't survive long enough to need it (in other words, they don't straighten out dead baby's heads) His head is straightening out very slowly and unless he has a buss haircut, or it's pointed out to you, one wouldn't be able to tell his head is symmetrical!
• Scoliosis. This was something that Hyrum developed over the first 6 months of his life. By the age of 2 1/2 (August), his curvature was 47% over the prior year he had gone from 25% to this 47%. At this appointment, we were told that in 6 months they would schedule an MRI and talk about surgery as they do surgery when the curvature is greater than 50%. We spent the next 6 months praying. Karl (at the time would have been about 6) prayed faithfully for his brother's back to heal and get better. At his appointment in February, we were told his curvature was 36% and there would be no MRI or surgery at the time, see ya in 6 months. I went home and got in my little 6 years old's face and told him it was all his fault. He really thought that he did something wrong until I started to cry. I told him what the doctor said about his back getting better and told him that it was his prayers that fixed his baby brothers back. We had six more months of prayers and in August of 2010 we found Hyrum's curvature to be 26% and the doctor was shocked and said that sometimes this happens, but not very often and see ya in one year! We expressed huge amounts of joy with our kids as we again watched a miracle in Hyrum's behalf. In August of 2011, Hyrum's curvature was 21%. The doctor commended us for putting Hyrum in both swimming and gymnastics the past summer. He keeps up the gymnastics, but the swimming interfered with his school so he will do the swimming again this coming summer!
• Upon seeing a geneticist we learned that Hyrum has a Medical Terminology for his issues. He has a mild form of Oculo-Auricul-Vertebral Spectrum. In other words, he is non-symmetrical top to bottom with his right side more in front of his left side causing everything in the middle to be miss aligned. He should have had kidney and liver issues, extra fingers, deformed fingers, etc. and he had a mild form of this Syndrome helping us to feel very blessed.