Our Weekend Update

We spent the weekend in the same Hollywood condo that we have been in, and left Monday afternoon after Peter’s doctor’s appointment.

The weekend was pretty uneventful – on Saturday we hopped in the car and drove to the main strip where they have all the stars in the sidewalk, and places where people put their handprints / footprints in the cement.  Some very old ones in there.  The awe and reverence with which people view some of this stuff is pretty disturbing.  Honestly, I can’t think of one person who is that darn impressive.  There were performers out there who want you to give them tips to take pictures with them – some dope dressed up like Spiderman (we got a photo with Samuel but Amy played dumb about the tip, since he didn’t say anything until after we took the photo), and a super dope who gussied himself up to look just like Michael Jackson.  There was a huge crowd around that cat, and I murmured perhaps just a bit too loud “I thought we were done with this weirdo”.  Insensitive, I know.  Anyhow, we stopped in a Disney Store there for some ice cream.  I think it’s such an irony that these three kids who are oh so colorful, when confronted with a menu of endless chocolate sauce/whip cream/craziness, all wanted vanilla ice cream in a bowl.

Other than the celebrity worshippers, stars on cement, weird people and the ice cream, the only other thing were the same stores that are in every single shopping mall in the country.  If you parachuted in there you wouldn’t know if you were in Novi, MI, Nome, AK, or Hollywood.

On Sunday, we decided to go to Griffith Park, which I found online.  It is in the mountains overlooking the Hollywood area – the website said there was a train for kids, a merry-go-round, and the Griffith Observatory.  We never made it to the observatory – there was 5 jillion people there – but I can tell you that when we were in Griffith Park there was no doubt that we were NOT in Novi or Nome.  Tijuana maybe.  Let’s just say that it was a little slice of the 3^rd world. 

When I got terribly lost the kids’ anticipation built up and when we finally found the train we had no choice but to go ride it.  It would be best termed the “Poo-Poo Express”.  It was a one mile loop around the pony stalls, and while most of the passengers probably didn’t notice the smell as being any different than their neighborhoods, it was a bit on the yucky side.  The train itself was dirty, rickety, with chipped paint, and it seemed to waddle down the track, going especially slow when it neared the biggest piles of pony poop.  I couldn’t help thinking that that is what mass transit would belike in America.  Please somebody drill, or find a way to pop a ball of uranium J.  We all felt (well the grown-ups  anyway) icky afterwards, but at the end of the ride, Peter threw up his hands in the air clapping it was worth the suffering…I think…

On Monday we took Peter to his appointment and he did a fantastic job.  First of all – the doctors are great, but they are not exactly “people of the clock” (in other words, we had to wait an hour and a half to get in there) and we had the whole clan with us.  By the time we got in there, we had already had to drag Isaac out of the little playroom in the waiting area a couple of times (he has been a bit of a pain in the dupa on this trip, incidentally.  I think Peter is enjoying this in his own little way J)  Anyhow, the Chinese Taz (we are in a Looney Toons phase around here) did awesome.  They took the drainage tubes out of his head and he hardly even winced.  They also took some of the bandage off of his head, so he no longer shines bright green.  He now has a very fly black Nike head cover thing, like the rasta dudes wear on their heads under the football helmet.  Poor kid, he went from looking like he popped out of a lamp to looking like a (Chinese) Black Panther.

One fascinating thing that we noticed while waiting at the office was that Peter very carefully studied an older kid who had one normal ear and one ear with microtia-atresia (like Peter).  Peter was staring at his atresia ear, and then walked around (at a distance, such that the kid didn’t seem to notice) to the normal ear, then back again.  It was the first sign of any real awareness from Peter, and I think a sign that this is as good a time as any to start this process.

Peter is feeling great – he was jumping off the couch (ignoring the blood and goop-filled drainage bags dangling out of little holes in head his) on Sunday already, and really has snapped back fast.

Monday night, we drove down to San Diego from LA.  It took nearly 4 hours, most of it sitting in LA rush hour traffic.  Wow was that fun.  Words can’t even say – everything was just ugly, dirtly, and crammed 5 lanes wide with cars that were just sitting there.  It was funny – once we got to Orange County, though, the traffic opened up and it looked like someone took a fire hose and case of lemon pledge to the joint.  Our experience proves that the most unrealistic thing in the show “24” was not Jack Bauer disarming nukes with a ballpoint pen MacGyver-style, it was the fact that he didn’t spend several episodes each season just listening to the local soft rock station in LA traffic.

Today we went to Sea World and enjoyed it.  We got a bunch of stern, condescending warnings about taking care of the environment, the ocean is our friend blah blah, and that animals are our brothers (that one seemed like a stretch).  It struck me as interesting that we were getting this stuff from people who make millions keeping 5 killer whales in a 100 foot wide fish tank for their whole lives.  I don’t feel guilty, but it seems like they might???  Anyhow, silly progressive platitudes (they even had songs playing during the whale show) about brotherhood with fish aside, it was a great day and a very nice park.  It was big, but not too big, crowded but very clean, and there were tons of things to do and look at.  A funny moment on the way there, we drove past a beach area and Isaac said (to Samuel) “look at all that sand!”.  Samuel, in a very “you’re such a silly young kid” tone, said, “That’s why they named this SanD-iego Isaac”.  Isaac seemed to accept his logic and neither one asked why we were cracking up.  How fun.  Samuel is very excited – 3 more sleeps until Drew and Aunt Lisa show up to go to Disney!  Amy will do a seperate post with some Sea World photos but here are some from Hollywood and the last photo ~ the boys have a picnic breakfast in the hotel room since there was no table (Samuel's idea).

Peter's Surgery Update

So, today was THE big day for Peter, and by extension, for us.  Today was the day he got his ear!  We got an early start this morning up and out of the house by 5:45 AM to get to the Cedar-Sinai outpatient surgical center, which is about 15 minutes away.  Last night, Peter’s birthday, he had a big dinner so didn’t really quibble about not eating when he woke up. 

We got him in there and they started their usual barrage of questions…”you have insurance, right?  Can we see your card?  Who is your employer?  How about that card again?  Sign Here.  If you don’t have insurance pleas sign here and certify that you are undocumented so we can perform whatever you need anyway and send the bill to Sacramento” (like the 42 people who already photocopied our card would have let us get to this point if we didn’t??  I wanted to tell them to send the bill to 1600 Pennsylvania Avenue, or maybe to Bart Stupak’s house, but I refrained.)   Actually, they were all very nice today – this is more reflective of my overall experience with these folks.

Dr. L bounded into the room full of energy at about 6:30 this morning – her enthusiasm is as infectious as it is unnatural, but hey, this lady loves what she does and it (along with the several hours we’ve already spent talking to her) gave us great comfort to hand Peter over for this procedure.  Just like with the atresia repair (that wasn’t really repaired) in March, he got absolutely loaded from the loopy kool aid they gave him at the start.  Stick him in East Lansing in a flannel shirt and a Budweiser cap, and he was me circa 1993.  Smiling at all the ladies, blubbering about nothing in particular, laughing at his own mumblings.  At least he was cute, though, and adjective which I cannot claim for myself J  Let’s hope he gets it all out of his system by the time he has two ears – it will save him a boat load of embarrassment and money that would otherwise be spent on Shark Bowls (don’t ask Mom).  Here are some photos of our loopy boy before surgery.

When they examined him, the anesthesiologist asked if anyone has ever mentioned that he had a heart murmur.  He asked “does he have trouble keeping up with other children?  Has he ever turned blue when he runs around?  Is he a low energy child?”  We politely suppressed a belly laugh and explained that these symptoms didn’t apply.  Anyhow, his pediatrician noticed this some time back as well, but wasn’t concerned.  The anesthesiologist said we should have an ultrasound done on his heart when we get home though as he felt it was a fairly loud murmur, something they would keep an eye on during surgery. 

Peter officially went back with Dr. Lewin at about 7:15 AM, after she traced Amy’s ear on a piece of clear plastic (remember, she was NOT interested in giving the boy my ears J) and that was the last we saw of him until about 5 o’clock.  Throughout the day they called us periodically to let us know how things were going, and were always very reassuring.  Everything turned out great – they were able to get a great slice of skin from his scalp because he has lots of very active blood vessels in the right layer (e.g. with no hair follicles).  I couldn’t help but think that the Iroquois would be impressed with how much more precise a laser is than a tomahawk.  Then again, I think they had a different objective, but I was dazzled by it.  Dr. L actually showed us a picture of his ear before she bandaged it all up and it looked amazing.  She will email us the picture, probably sometime over the weekend, and we will post.   The photos were nice because there was no swelling yet, no purple bruising yet, no dry icky scabs yet…all things to come.  It will look worse before it looks better.

She is a great doctor but also great with kids.  Peter brought his little stuffed dog which he calls “Puppy” with him, and she actually took the dog and bandaged him up the same way as Peter.  It was hilarious, and Peter was pretty excited.  When we got home though, Samuel was very confused.  “Why does the dog have a bandage?” as he tried to rip it off and see.  “What happened to the dog’s ear?” (Meanwhile Peter is being carried in half mummified with bags of blood draining from his scalp into not-so-little  balloons and Samuel barely noticed.)  We explained that they just wanted the dog to look like Peter so he would smile, and Samuel just didn’t’ get it.  “But WHAT IS WRONG WITH THE DOG’S EAR?!!!”.  He finally gave up, concluding that we had a screw loose for giving a healthy dog a bandage.  He finally asked what the red balloons were dangling from Peter’s head.  We told him “blood”, and he immediately grimaced and turned to the cherry flavored pedialyte on the table and asked very seriously “What is in the cup?”.

After being under for so long today, Peter was pretty groggy, but he was in good spirits overall.  He had a little to eat, barfed if up, waited a while, and then tried some more which he kept down, but was really doing well.  The skin graft spot on his head and groin seemed to bother him which nothing else in particular seemed to at all.  He is really a trooper.  He just took it right n stride.  Really amazing.

One bit of good/bad news was that, while she was able to repair the outer hole on the left ear that he had done in March, she noted that the ear canal was very tiny and suggested that before we get his left ear done that we consider actually having it filled in.  She said that it is so narrow, she can't imagine much sound getting in.  If she’s right, this could complicate our timeline significantly, and also involve more surgery for Peter.  On a day when so much was accomplished for him, it’s hard to get too down on this note, but we are very disappointed about this.  We will have to balance whether the risk and maintenance of keeping it open (e.g. cleanings, possibility that it closes back up after he has an ear there – which would complicate things) against the potential benefit (we will have to test his hearing and see whether any real amount of sound is getting in there.  

Anyhow, we are very grateful for your prayers, and Peter could continue to use them of course as his ear, ear, and stomach/head (where the skin grafts came from) continue to heal.
  
Tomorrow, if Peter is feeling OK, we are going to get out of dodge, since the pride march rolls through town and I do not want to see any more dude-on-dude PDA (the other day pretty much exceeded my lifetime quota). Of all the weekends. I believe I speak for the silent majority when I say that I want the rainbow back. Anyhow, enough ranting.  We will let you know how he does through the night and tomorrow but so far, so good!

We are in California! (By Greg)

Here we are in West Hollywood in the Golden State of Mexifornia.  If you could have only seen/heard/smelled LAX yesterday – I’m telling you that Emma Lazarus would have recanted out of sheer revulsion, though after 5 hours on a strangely warm, yucky (like gum under the armrest yucky), old  Spirit Air plane with the 3 little hoodlums (who barely slept) we weren’t exactly representing too well for the natives ourselves J.  We were so ragged I probably would have kicked us out. 

It took a while to get to the house / apartment we rented, and I was relieved that about 3 miles before we got here the Bud Light billboards suddenly turned to English.  That would have been good enough for me, but the ads for sudsy refreshing beverages were quickly replaced with weird fashion billboards everywhere.  They were apparently advertising clothes, but clothes seemed to be strangely absent in most cases. (I am glad the boys are 2-5 years old and not 12 to 15).   Samuel made the comment 'boy there sure are a lot of 'things' in California!', I am sure a reaction to all of the signs, billboards, colors, lights, and just 'stuff' everywhere.

We had to drive right through Beverly Hills to get here, and almost every place had a giant rainbow flag out front (even Wells Fargo for goodness sake).  Anyhow, it’s easy to make a list of restaurants to avoid at least.  I do believe that this place could make even a proud resident of metropolitan Sodom / Gomorrah blush.  The only indication that there are any straight men here were the giant neon signs flashing “Totally Nude Girls” outside one place.  When that is the most respectable business in town you really know you are somewhere special.
 
Today, on our way to the doctor’s office I saw what might be one of the strangest things I’ve ever seen.  It was certainly the grossest (even worse than when I saw the Chinese lady in Guangzhou encourage her kid with buttless pants go poo-poo in the park-park – I believe I stated my revulsion in the old blog archives back in January ‘10).  We drove past a bar that had a large patio right out on the street, and there was a dude showing another dude his abs (seriously – you can’t make this stuff up).  Well, creepy dude #2 literally bent down and kissed creepy dude #1’s stomach.  It made me throw up in my mouth.  If the window would have been down I would have leaned out and made it official.  Also saw a store called the “the leather & fetish shop” and it had mannequins doing things which would shock Boy George.  I couldn’t believe it.  It made me long to go back to the neighborhood with Bud Light en Espanol. I don’t think those folks would have put up with this!  As soon as we leave, this place can break off and float on over to China!

Anyhow, enough about the culture of depravity and on to the happy, slightly nervous business at hand!  We are gearing up for Peter’s big day on Friday.  We had his pre-op appointment today and the doctor and her P.A. spent about 90 minutes with us going over the plan for Friday’s 8-hour surgery, and making some tactical decisions, like where to get the skin graft from, and how to minimize scarring, etc.  It’s quite amazing the kind of time they put in – and they seem like truly wonderful people. 

One thing is clear, they do good work, and they sure seem to enjoy what they do (from the looks of the office, with fancy hardwood floors, granite countertops, and jazzy art all over the place, they are well-compensated for it, too – and I don’t mind a bit, since it’s a bit of a niche skill but awfully handy if you happen to be born without ears).  We met a boy and his mother that were there to get ready for his second ear to be done as well.  The kind nurse translated since they only spoke Spanish, but this kid’s ear looked GREAT and they seemed very nice ~ I think he was about 3 months post-op. 

Looks like the plan is to use some skin from Peter’s head and his abdomen for the surgery.  Back-up plan should they need more skin is from the arm.  The stomach skin is usually avoided since it can grow hair when the kids get older, but they said the risk is minimal for Asian kids.  They like the stomach since it is a very similar skin tone to that of the ear, and it will be used to cover the back of his new ear.  The skin from his head will be sliced so thin and with such precision as to take a layer that contains no hair follicles.  Amazing!  This will be the skin on the front of his ear, again due to skin tone.

A funny moment occurred near the end of the appointment, when the doctor looked at Amy and I for a second and said that she normally uses one of the parents’ ears as her model for the child.  She paused and looked at me, clearly worried about my reaction, and said “…I think we are going to use mom’s for this”.  Amy and I burst out laughing.  I told her that if we came this far and went to this much trouble and expense for him to have ears like mine, we’d be a bit disappointed.  Talk about going from one extreme to the next!  From nothing to a 3-inch wide ear shooting out the side of his head might be too much change for any child to bear J  At least we know that Doc L has good taste in ears! J   

Tomorrow, we are taking the boys to Universal Studios ~ and it is Peter’s birthday so hopefully, he has a fun day before his surgery!  Please keep him in your prayers!

(by amy) ~   I will try and get some photos tomorrow to post of the boys at Universal Studios...

Post atresia repair update! (by Greg)

It’s been a while, and we’re right here in the thick of things so it’s a good time to update everyone on what’s going on.  Last post indicated how upset we were that Peter’s left ear hole was so small and appeared to be closing up before our very eyes…I don’t have to be an MD to know when a hole is not a hole, but just to remove all doubt, Dr. T (who performed the procedure) confirmed that it ain’t a hole no more (shocking).  Essentially, it has to be opened up, which could derail his ear construction surgery on that side by several months.

Luckily, the physician that is performing Peter’s right ear construction has agreed to make the modifications (i.e. make the outter hole bigger) necessary while she’s in there building him a right ear.  In the end, it’s very frustrating but it will work out for him, hopefully sooner rather than later. 

It has been pretty interesting how the U-M folks have become quite sour toward us ever since we decided not to get the rib graft surgery to build Peter’s ears, which would have required at least 10 surgeries and have forced us to wait to even begin for several years e.g. long after Peter is old enough to notice / be bothered by his situation, and long after the fraud-pedaling, politician-greasing, racketeering joint that I work for sees its “client” (CEO Barack Obama) go officially bankrupt and decline to provide half decent health insurance (or perhaps they will take one for the team – er client – and just sign us all over to Obamacare).  Long and short of it…waiting around for the U-M folks to craft ears that look like pork chops and put junior through years of painful and unsightly surgery would be completely stupid.  Yet the same people that stroll into work with 50 more IQ points than I’ll ever see and who do mostly incredible things (pork chop attachment being a notable exception) inside people’s heads can’t seem to see it.  They’ve been cranky with us lately over our decision to go vegetarian and have the Medpor procedure done.

OK – enough of the rant.  Dr. Lewin from posh Beverly Hills (as in Jed and Granny rather than 13 & Southfield, for you mitten-minded folks) will save the day, and do it before the sky falls and Peter realizes that he has yet another hurdle to overcome.  Amy had talked to Dr. Lewin several times prior to leaving for CA and was impressed and liked her more each time.   We truly feel this is the right decision for our family.

Stay tuned...

(by Amy) ~ By the way, Dr. T rated Peter an '8' on his left ear and said he wouldn't have marked down any for a 'narrow' ear canal as Dr. Roberson's evaluation stated.  Dr. T said he has opened areas with less room than he had for Peter and been successful in recovering hearing...we can only wait, hope and pray Peter is one of those people...what is done, is done.  The reason for Greg's rant above, when I took Peter for his 2nd follow up, that is when Dr. T told me the meatus (outer ear part) needed to be opened more and asked if Dr. Lewin might do it in CA (UGG, I was NOT happy about that either) when she does the right Medpor...he graciously (and was very genuine) wished us luck in CA.  When I expressed my nervousness, he said ...'well, I tried to talk you out of it'.  GEESE!  Come on!  Enough already.

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.