Surgery Dates! Peter Gets A New Ear For His 4th Birthday!

Well, I am still stewing over everything that happened with our doctor and haven't been able to regroup very easily and move forward...but we have gotten Peter's first set of surgery dates for California to have his ears reconstructed so I hope that is a start ~ to move forward and quit dwelling on the past. 

We leave for California on June 7th and arrive pretty late.  We are taking all of the boys and my mom for help...so we aren't traveling light :)!  Peter's pre-op appointment is June 8th and on June 9th (Peter's 4th birthday) we are going to Universal Studios.  His surgery is Friday, June 10th ~ it is an 8 hour surgery so it will be a long day.  On June 13th, Peter will have his tube removed and we are told, will feel much better.  At that point, we are checking out and going to San Diego for 2 nights to visit the Zoo & Sea World...something low key that he can just sit in a stroller for.  On the 15th, we will go back north to Anaheim and spend the last week in a hotel across from Disney.  We bought a California City Pass which gives us access to San Diego Zoo, Sea World, Universal Studios, and a 3 day park hopper pass to Disney (both parks) so that should keep us busy for 2 weeks!  We figured (well I figured) this was the only way the kids would ever get to Disney :)!  Greg would never spend this kind of money to randomly take the kids to Disney in the future.  He would rather take the boys to their birth place (like Vietnam or China) if it ever came to spending that kind of money on a vacation...I guess I agree, so Peter's brothers have him to thank for their trip to Disney :)!  Peter will have 2 more post-op appointments (June 17th and June 22nd) and at that point, Dr. Lewin will let us know if she needs to see him again or we can just email photos to her.  Either way, we are leaving on the 22nd and if needed, Greg will fly back with him for the final post op appointment and then just fly home (we are praying that isn't necessary!).

Back to Peter's atresia repair ~ we have our follow up appointment on May 6th with our Doctor here and hopefully we will have some of our questions and concerns answered at that time.  As of right now, Peter's hole is blocked with dried gunk ~ I have been cleaning the outside area but can't (won't even try) to get the dried gunk that is slightly inside his ear.  Other than that, everything is healing okay it seems and so far, no infections.  Although,  I don't know why the top portion of his ear above the hole is so swollen, I hope that decreases.

Here are a few photos...one taken today of Peter's left ear and a photo of his right ear.  His right ear will be getting the Medpor first in June.

Post Op ~ Part 2

If you haven't read the last post, do so before reading this one as it is a follow up to that post.

Greg called the specialist in California yesterday evening and was able to get the results / 2nd opinion on the condition of Peter's 'inner' ears structure...but first I have to explain a few things.


The surgery to create a normal sized ear canal from either a stenotic (narrow) canal or complete aural atresia (no canal) is known as an "atresia repair" and is sometimes also referred to as a canalplasty.  In determining whether or not a person is a candidate for atresia repair, Dr.'s (normally) use a grading scale called the "J Scale" also known technically as The Jahrsdoerfer grading scale.  It was proposed in 1992 and assigns an anatomical score (1-10 [the higher the score the better]) for the atretic ear based on the presence of 9 structures.  Generally, only candidates with a J score of 7 or higher are candidates for repair or would benefit the most hearing wise from the atresia repair.  Having said that, even a score of 7 is borderline and individually decided.

While I knew all of this before Peter's surgery, I failed to ask our Dr. what Peter's J score was and if our Dr. used that method in determining whether or not Peter was a candidate for repair.  I made an attempt to remind myself the last time we met with Dr. T (our Dr. at U of M) about Peter and totally forgot with everything else on my mind.  Mistake #1, write down your questions for the Dr!  I trusted he knew what he was doing...mistake #2!  Never use your heart in these situations, go with the facts and what you KNOW you should be doing.  Can you tell I am so frustrated with him I could throw up?!


Dr. T did our Samuel's cochlear implant and was our Dr. we consulted with before bringing Peter home about his condition...we also love the fact that he is a Christian, we even prayed together in his office about our decision ~ unfortunately, those are the heartfelt things that got in the way of facts!  We consulted with him a lot before surgery (via email and in person) about a plan for Peter's ears.  He was a proponent of rib graft and pushed for us to use the cosmetic Dr. K who does rib graft at U of M.  We met with Dr. K and didn't like her much at all...not to mention rib graft just wasn't for us.  After he knew we were going with Medpor ~ for certain ~ he emailed me that I couldn't email him anymore about Peter and consult with him without making an appointment and following the proper channels.  Was he mad at me?  Yes, I feel like he was.  Because he wanted to create a mid-west 'hub' for this type of thing so people wouldn't need to travel to California and 'nicely round out his career'.  Now,  I don't feel like he is open to me talking to him about my concerns with Peter and shame on him for making me feel that way!

Back to the facts...Dr. T told us the whole time that Peter's left hear was a candidate for repair ~ that his left was 'a typical atresia case' and they could open the canal and create more hearing unaided.  The right, however, was 'less favorable due to the placement of the facial nerve'...so we were told.  When I questioned him again about what that meant for us, he said 'there is a good possiblity we get into the right ear and have to back out because it isn't doable'.  That was it for me...seriously?!  That was unacceptable to me, you don't just drill a hold into a child's head and THEN decide if he is a candidate for repair.  I requested a copy of his CT scan and mailed it to the specialist in California who does this for a 2nd opinion.


That brings us to last night.  Greg called Dr. Roberson's office in Palto Alto to find out if they had received our package and whether or not they could tell us anything.


They were gracious and friendly and here is what we found out.  Going back to that J scale of grading, Peter was a 6 on his left and a 5 on his right.  Now, what does that mean?  It means that one of the best surgeons in atresia repair would not have operated on Peter's left ear.  He didn't read my letter so he graded both ears (or he would have known that we already had done the repair on Peter's left ear).  Greg was shocked at that score and when he questioned her...not confrontational, but none the less...she put him on hold to talk to the Dr. and see if that was subjective.  She came back to say that Dr. T was a great doctor and Dr. Roberson could see where he might feel that Peter could benefit more by opening the left to get a little more sound it but that he would always probably need a baha.  I think he was trying to back-track after low-scoring his left ear when another Dr. already went ahead with the procedure. 

There you have it.  I was fuming, I still am!!!  The whole point of doing the surgery was our trust in our local Dr. that Peter was a good candidate and apparently, that wasn't the case.  Only 45% of kids (in a case study I read) with a J score of only 6, acheived a hearing score of greater than 35db.  Even though there is still a chance for an ok outcome, I am not optimistic ~ maybe it is just the hear and now making me feel this way and things will change...but had we known all of this, we wouldn't have done the surgery.  If he has to wear the baha anyway, and I was not impressed with the level of hearing afterwards, what was all of this for?  Now we have to deal with all of the complications now and in the future, when we could have just scheduled the Medpor, got Peter his new ears and been done with it...not to mention he will now have 1 hole in one ear and not the other.  Had opening his canal been the right and sucessful thing to do ~ it would have been worth it.  Was opening the hold the right thing to do?  Sadly, we are not sure and no parent wants to feel that way with regard to their child.  I am so sad about all of this and feel like it is my fault.  I did so much research to educate myself and feel like I failed Peter.

Well, now that I have had my little pity party...what is done is done.  We have only tomorrow and need to continue to pray that we make the right decision by Peter, including the ones we have already made.  Please keep him in your prayers.

Tomorrow, we will call and schedule the appointment to see Dr. Lewin, in California, to begin the process of getting Peter his new ears.

As a refresher...here is the website for Dr. Lewin and the Medpor procedure.

http://www.cedars-sinai.edu/Patients/Programs-and-Services/Microtia/MEDPOR-Reconstruction-for-Microtia.aspx 

Here is a photo from today of Peter's ear opening.  The band aid on the lobe is holding it down from yesterday's mishap.

Peter's Post Op Appointment

Well, where do I start?

Friday was Peter's post op appointment at U of M to remove 5 sponges from his ear canal and middle ear.  To prepare him, Dr. T told me to drop some peroxide into his ear to soften the sponges and make it easier to pull them out.  Peter was scared when I laid him in the chair and he started crying but I held his hand and talked to him and it was over in less than 1 minute.  They came out easily and pain free (thank you God!) and by the last sponge, Peter had stopped crying.  Couldn't have gone better!  There wasn't much the Dr told me to do for follow up other than some antibiotic ear drops 2x per day, keep it dry and he would see me in a month.

These last few days have been tough and emotional.  While our Dr. spoke loudly into his open ear the day we had the sponges removed, of course Peter responded...however, Peter could respond to me speaking loudly next to his head without the hole...never the less, I left encouraged that we had done the right thing and Peter would be able to hear without the aid on his left...I trusted our Dr. I now feel this was a mistake.  The information we received today was heartbreaking for me and I am horribly frustrated with our Dr.  Most of all, shame on me for letting my heart rule my mind.  I knew I should have gotten a 2nd opinion from the specialist Dr. in California BEFORE Peter's surgery...and I didn't.  I trusted our Dr. with this decision and with our child's future...anyway ~ here is how the last few days have been, leading up to talking with the doctors in California today.

The following morning after the sponges were removed (Saturday)~ I had left Peter's aids off and stood behind him while he was eating.  I spoke to him in my normal voice and he didn't respond.  I did this several times.  After I placed the aid on his head, he responded right away...I was very discouraged.  I was toying with whether or not to call the Dr. with my concerns and thought I would wait until Monday (today).

This morning, when I went to put drops in Peter's ear...the hole was closed over in a dried puss with only about a pin hold opening.  I cleaned the outer hole enough to place the drops in and again, felt discouraged...was this supposed to be happening?  Our Dr. didn't give us much in the way of what to expect afterwards with the opening.  Later on this evening, Peter was horsing around and I noticed his face was all bloody.  Apparently, the ear lobe rubbed onto something and was a bloody mess.  Dr. T had stitched the lobe down kind of into place and one small area ripped open...not to mention the ear was draining blood now too.

Because I am not at home (I am up north this week at my parents house), I found myself running off to Walgreens at 6:30pm for band-aids, gauze and anything else I could use to tack his ear lobe down and help with the drainage.  Again, I am still stewing about our Dr. and unhappy with the way things have been going.

On the way to the drugstore, I called Greg to vent about 'our luck' and that got us talking about following up with the doctor in California about Peter's right ear.  Greg decided to call and see what he could find out.  He was able to speak with the doctors office and the news was dismal.  If you ask Greg, however, he was thrilled we finally had the answers we were looking for and we could begin planning our trip to California for Peter's new ears.

I will post a few photos of Peter's new ear hole (for my aunt...warning, might be graphic to some :)  tomorrow...a long with more details on what the specialists in California said today.

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!