Four Months Post Microtia Repair

It's been four + months since the microtia repair, and after a fantastic initial result, we've had a few road bumps including:

• Re-injuring a spot on the rim of his ear at least twice
• A keloid developing especially on the rim of his ear (don't know if it's related to the fact that it was re-injured)
• The surface of the ear isn't as smooth as it once was
• Need for atresia repair revision
• At least one cold/ear infection

So we're still in the Bay Area (now we're in San Francisco) recovering from the atresia repair revision, and we're trying to keep Ben still.  He's doing homework and workbooks and learning about contractions and we're trying to make it so he doesn't miss too much of what was taught in class.

By the day after his surgery, he stopped throwing up and he feels good.  He did not take any of the Tylenol + Codeine - it tasted bad.  After the first night, we removed the cotton on his ear but left the plug in his ear.  He is taking Amoxicillin for 5 days after his surgery, and we're putting 3 ear drops in his ear twice a day, and we're keeping his ear completely dry.  We've been keeping it under the ear cup at night.

This is a picture of his ear - it still has a bit of the iodine stain on it from the surgery.  I compare this picture with some of the photos in September, and the skin looks considerably less smooth (even above and beyond the keloid on the rim.  The "good news" is that his hair is usually hanging a little over the rim of his ear, and you'd never notice the bumps - and he doesn't seem to be self-conscious about it.

Atresia Repair Revision

We arrived at Waverly Surgery Center in Palo Alto at 6:30 AM - we were the first surgery of the day.  The waiting room was full of people.  By 7:00 AM, we were in the pre-op room where the beds with the curtains are.  That place needs a bigger pre-op room!

Ann was the first nurse to help us - she had an Irish accent and was very sweet to Ben.  He had opened up his present from his aunt.  It was an NRG Ben 10 toy with an additional maleable plastic block that's supposed to go into the head - I couldn't figure out what purpose it served.

Ben did not want to change out of his pajamas into the hospital gown (he does not like "wearing dresses.")  Also, he definitely did not want to drink the medicine that makes him sleepy (it tastes awful - and they're not allowed to drink water to wash it down).

Dr. Bowman, the anesthesiologist introduced himself to us.  We told him about Ben's loose tooth and his ear that had been experiencing pimple-like explosions.  We told him about the violent post anesthesia experience he had last time.  He said he'd change up some of the anesthesia (and use propofol instead - yikes!)

Both Dr. Bowman and Dr. Goldstein were mid-range on the bedside manner scale.

I was able to change Ben into his hospital gown, and they wheeled Ben into the OR on time right as he was starting to feel sleepy.

At around 10:00 AM, Dr. Roberson came out and talked with my husband about Ben's surgery.  He said the surgery went well, that Ben was resting in the post-operating room, that he was able to go through the ear canal, that they decided to remove the Malleus and Incus and put in a prosthetic between the Stapes and the ear drum and that they had to use some cartilege which they harvested from the Tragus that Dr. Lewin had made.

We asked the nurse if we could have the Malleus and Incus that were removed but they said that it's against the law to remove "hazardous material" from the site and that in the surgery, the time bones are broken up so there's nothing to see. :(

At around 11:00 AM, we went into the room with Ben where he was waking up.  He was very groggy.  When we asked him if he wanted apple juice, he didn't know what it was.  He didn't want to drink anything.  He saw the bag of pastries that my husband had bought and was very excited about it, but then he couldn't bring himself to take a bite.  Plus the nurse (I think this one was Tess) said to not eat initially.  He discoverd the IV that was in his hand, and he asked that it be removed.  After it was removed, he fell back asleep.

Dr. Goldstein came to tell me what had happened during the surgery (I had not been there when Dr. Roberson explained it to my husband).  During our pre-op visit, when we were asking him about the possible surgical options and then asking him clarifying questions, he had said something like: "I'm answering these questions because you're asking them, but I just want to let you know what most patients don't ask these questions."  He had the same approach this time... When I tried to ask him a question (I forgot what it was - but it was about the procedure) his response was to rub my back and say, "Don't worry about it.  Everything will be fine."  As if wanting to understand what surgical process your 6-year old just went through represents excessive

Ben was sleeping soundly, and I wanted him to get some good sleep.  However, after Dr. Goldstein came by, the nurses were heavily hinting that they wanted me to wake up Ben and leave - so we did.

Ben went to sleep for a couple more hours, and then he woke up very hungry.  He ate some yogurt (liquid food only at first) and then an egg and some apple sauce.  After some time, he started to cling to his head, and he then started vomitting profusely.  Mop up time.

A little later, he tried to eat a little more.  Had some scrambled egg.  Mt. Vesuvius again.

In the evening, he grasped his head, and shortly after, he threw up a lot again.

It was brutal.

He went to sleep feeling pretty lousy and having thrown up a lot and starving hungry - and he was coughing all night - probably from having thrown up so much and also having had a breathing tube down his throat during the surgery.

Pre-Op Visit for Atresia Repair Revision

We had an audiological test first (I think the audiologist's name was XXX).  His hearing tested the same as it had recently - basically pretty serious conductive hearing loss with a well-functioning inner ear.

Dr. Goldstein met us and informed us about the various surgical possibilities - depending on what they see.  Since Ben's Malleus and Incus are fused, he said (1) they might put a prosthesis between the Stapes and the Incus or (2) they might remove part of the Stapes and put a prothesis between the Stapes and connect it directly with the ear drum (and also remove the Malleus and Incus) or (3) they might XXX.

We asked why the consent form included cartilege removal and why skin grafting.  He said that he didn't think either would be needed, but depending on what they find when they are in the OR.  He said that the cartilege removal is used if option 2 were used so that the titanium prosthesis doesn't poke a hole in the ear drum.  He said skin grafting happens if they need to repair the ear drum - which he said we were not doing.  Also, he said that they always intend to go through the ear canal but if it turns out it can't be done easily, sometimes they make an incision behind the ear and lift up the entire ear flap.

Then he took a look at Ben's ear and was amazed at how much goop there was in there.  He suctioned it out with the metal tube and just said that he's the sort of kid who's going to have to have his ears suctioned out a lot.

When we were asking some questions trying to understand the actual procedure, he told us that "noone" usually asks these questions...

Nearly Four Months Post Microtia Repair

Now we were getting close to the date of Ben's atresia repair revision, so we were in contact with Cheryl Medina to make sure we were doing everything well.  We are pretty busy, and Cheryl is pretty busy also, so it's sometimes difficult for us to connect.  These are the things we needed to confirm:

• When (what time) and where the surgery will take place
• Fasting after midnight before the surgery
• No aspirin or Ibuprofen in week before surgery
• Get written clearance from pediatrician on day (or two) before surgery
• Need pre-op visit with Dr. Roberson's office on afternoon before surgery

In the following week, he had a couple of episodes whereby I believe that cysts that developed in his ear canal popped, and they created a bit of puss and blood that dried up in his ear canal, once more alarming us.  This time, I cleaned them up a bit (and they looked a lot better).

We visited Dr. Keene (Ben's pediatrican) on Tuesday, Novmeber 15, the day before leaving for Palo Alto, and he gave Ben clearance for the surgery.  He said there was goop in his ear that he would leave since the ENTs could do a better job of removing it.

Three and a Half + Post Microtia Repair

Ben seemed to be doing well (from the perspective of not having additional blood episodes in his ear - but then he caught a slight cold (nothing terrible - but at this point - we were getting closer to his November 17 surgery date.  So Dr. Keene prescribed Amoxicillin for him so that he'd be clear by the surgery date.

I had been out of town, so I scheduled the follow up visit with Dr. Liu (and also saw Dr. Lewin) for Wednesday, November 9.  He took a lot more goop out of his ear but said that Ben was okay to have the November surgery.  Dr. Leewin was a bit distressed about how the ear now looked.  She said it looked worse than when she had seen it a couple of weeks prior.  We briefly rehashed potential treatments - including cortisone shots (but she said that probably would not work) and surgical removal with radiation...