Peter's 1st Surgery

First of all, I am sure this will be a long post ~ of course, read what interests you...the photos are at the end.

At 5:30am on March 23rd, we left for U of M to begin the long journey to new ears for Peter. I was nervous, this step solidified the decisions we had made and you always want to do right by your child. While we love Peter just the way God made him, we were also certain that love wouldn't ease him through childhood. Peter has a lot of insecurities and we felt he wasn't the type of child ~ nor did he have the personality to say "hey, this is the way God made me and I am okay with that". Part of me had always hoped that would be the case, but given the experiences we have had this past year (which is all we have to go on right now), we don't feel that's the case. While he might give it a fair try (with some help from us), we know he has more of an insecure personality than a secure one and even when he becomes more grounded and at home within our family, I don't think those insecurities completely go away.

So, that brings us to the nerve wracking day of his first of several surgeries over the next year or two. Greg and I had no idea what to expect, and prayed he would fair well when it was all over! I think what made us so nervous was there was no turning back at this point, we were in it for the long haul and we had no idea how Peter would handle all of this. After we arrived at the hospital and had been sent back to pre-op with him, Peter was a giggling mass of humor and fun. He loved the attention from mom and dad (without brothers) and he didn't care what the setting was. It was like they had already given him that pre-med stuff that makes him loopy and that wasn't the case. I tried to explain to him that the Dr. was going to open his ear and make a 'hole' like mommy and daddy's so he could hear better. I told him it was going to be his left ear and he proceeded to playfully argue (that is what Peter does best) with me that it as going to be his right ear (he thought this was VERY humorous).

Peter left his nervous parents at 7:45am very sleepy and somewhat content ~ showing his building trust in us as his parents was encouraging ~ and surgery began at 8:30am. After 4 long hours, Dr. T came out to meet with us on how everything went. The first thing he said was that everything went great...BUT...Peter had the remnants of an ear infection and he wasn't going to continue with the surgery, but felt like that was not the right decision, so he continued on. He had to suck out and laser a bunch of mucus from his ear to proceed but felt everything went very well after that. He put Peter on a stronger antibiotic for the ear infection and medicine to manage any pain as well. So, we did learn that children with his condition can, in fact, get ear infections! Thankfully, I had spoken with our Pediatrician about 2 weeks prior and asked for an antibiotic for Peter to help rid him of his cold and prepare him for surgery. One of the Dr.'s said while that antibiotic didn't 'cure' the ear infection, it made the surgery possible and they were able to continue. I can't imagine the Dr. getting half way through surgery, only to come out and tell us he couldn't complete it. Thank you Lord!

When we were finally able to see Peter in recovery, his head was all wrapped up, and he smiled when he saw me. It was very sweet and I was so relieved he wasn't crying! When Samuel came out of the anesthesia for his surgery it was horrible. He saw me and screamed for an hour straight, it was one of the worst days of my life and I was praying this wouldn't be another of those days. Peter was just the opposite. Took everything like a champ! He wanted me to hold him and was groggy and content after that (another sign of building a bond of trust and love that we both need). I could already tell that he could hear better ~ even though his ear was packed and his head was wrapped...he could hear my voice and answer my questions much better that before. Amazing really! I can talk to him in a normal voice and he can hear me with out his aids on. Everything couldn't have gone better that day, thank God.

Once we arrived home, Peter had a bunch to eat and was pretty happy. He was clingy and still loved all of the attention. When I asked him if his ear 'hurt', surprisingly...he said no ~ but he says his leg hurts and that is where his 'boo boo' is. They took the skin graft from his thigh and believe it or not, that is what hurts him...not the fact that he just had a hold drilled into his skull. Unbelievable! The rest of the evening went well, Peter slept in our room that night and had no problems at all. Now, we are hoping and praying for quick healing without any complications or infections. When it was time for me to take the dressing off his ear yesterday, it was sticking :( and that was NOT fun. Again, Peter handled it like a trooper...I was very gentle and made sure there wasn't any pain by dropping tiny bits of peroxide on the cotton (making sure not to get anything else wet) through one of those medicine syringes. It worked great, only needed a few drops in key places to get the dressing off and replace it the the cup the they gave me.

The only other issue we had was with his skin graft site. The area / bandaid was filling up with blood so I did call the Dr. about that ~ just didn't seem right to me but the Dr. said that was common and it was up to me on what I wanted to do. Great :( so I decided to poke a tiny hole in his band aide to drain the blood and just covered up the hole with another bandaid. Seems to be working well enough.

{Here are the photos from after surgery and the following day when I removed his dressing. I bought some stretchy black sport bandages (like the sticky stuff you wrap around a sprained ankle) and cut that to use to keep his cup on instead of the velcro straps. That way, I cold also cut a hole in it and put his other hearing aid on the other side}.

After we returned home from the surgery, Peter gives us the 'thumbs up' :-)

Welcome Back!

For those that followed our journey to Peter, welcome back!

Although I am not a fan of blogging, it seems to be the easiest way to keep family and friends updated about Peter's progress. After finally settling into our new home, we began the daunting task of researching our options for Peter's ears and after much prayer we have decided on a plan. Along with these big decisions, come many questions and misconceptions. Now you can follow along here to see how Peter is doing.

A little background...all of you know Peter has a condition called bilateral microtia / atresia. He was born without a middle or outer ear. His inner ear functions normally...the challenge is gaining access to the inner ear. Currently, Peter wears bilateral bone conduction hearing aids and his hearing is in the normal range with his aids. Without aids, he is hearing between 60 and 80 decibels (normal speech sounds are heard generally between 10 and 45 decibels) so although Peter CAN hear us without aids, he was not able to hear well enough establish any speech before he joined our family. Now, after being aided and understanding English...it is easier for him to pick up on what we are saying when he is not wearing his aids.

There are 3 options for us with regard to reconstruction for Peters ears. In addition to reconstruction, we needed to find out if he was a candidate for atresia repair. Atresia repair is simply making an ear canal, ear drum and getting his ossicle bones (the 3 small bones in the middle ear that transmit sound from the air to the cochlea) working properly to restore his hearing without needing his hearing aids. After getting a CT scan done on Peter's ears, it was determined that his left ear was a good candidate for repair and the right ear was 'less favorable' due the the placement of the facial nerve on that side. It seems the facial nerve is blocking the area where they need to do the repair, so we are still uncertain about the right.

We sent a copy of Peter's CT scan to a specialist in California for a 2nd opinion. Once we hear back from him, we will decide what to do on the right side. 

As far as building new ears for him...we had 3 options to choose from...1. a prosthetic ear which can be glued or screwed on. 2. Rib Graft reconstruction where they take cartilage from the rib cage to sculpt an ear (this is extensive and requires about 7-8 surgeries before it's all said and done...not to mention the surgery for the atresia repair after reconstruction). 3. Medpor ears, which is an implant made of porous material. While all 3 options have advantages and disadvantages, we felt without a doubt Medpor was the best thing for Peter and our family.

You can find out about Medpor and the surgery at this website: http://www.cedars-sinai.edu/Patients/Programs-and-Services/Microtia/MEDPOR-Reconstruction-for-Microtia.aspx

After making the decision to proceed with Medpor, the first step was scheduling the left atresia repair with our Doctor at U of M who did Samuel's cochlear implant (Dr. T).

That surgery was scheduled for March 23rd. Next, I will post some photos and an update on how the surgery went!