Water Filled Family Vacation

We had long-planned a family vacation at a big resort in Cabo where the main features are hanging out in various fun swimming pools and going to the beach.  Needless to say, Ben (and his brothers, too) were quite understanding of the need to not get his head wet.  Dr. Roberson would probably have a heart attack seeing these pictures, but we did stay true to our commitment to keep his head above water.

Trimming of the Plug - April 6, 2011

April 6, 2011.  A week after the surgery, we were thrilled to make it through the first gauntlet - keeping the plug in his ear canal.  I honestly don't know how we did it.  We told him no running around and jumping.  We returned to CEI to see Dr. Roberson so he could trim the plug and infuse it with more antibiotics.  Ben was sensitve around his ear and was not happy about having a stranger touch his ear.

It was also at this time that we did the second of three audiological tests at the CEI.  The results indicated that Ben's hearing was pretty much unchanged from prior to the surgery.  The results didn't make any sense, because we were certain that he could hear us from his new right ear.  Whereas before the surgery he could not hear at all from that side, after the surgery we could whisper on that side and have a conversation with Ben...

We were to continue putting Tobramycin drops in his ear canal twice a day.  His healing was going really well - no signs of infections or stenosis.

Great Things to Do In Palo Alto

In a very short period of time, Ben was running around like nobody's business.  Among other things, Ben visited the Totem Garden/sanctuary at Stanford University (I'm hoping that the spirits are glad that this little boy was having so much fun with them), played around the fantastic living sculpture/tunnel cave/structure in front of the Palo Alto Library and went to the Palo Alto Junior Museum and Zoo.  Also, Create It Ceramics and Glass Studio in the Town & Country Mall in Palo Alto is awesome.  The Gamble Garden is a nice place for a walk in beautiful grounds.

In San Francisco (where we are originally from) we checked out the relatively new California Academy of Sciences Steinhart Aquarium.  It has an environmental theme, and there is a multi-story butterfly sanctuary that is really cool and where butterflies literally land on you.  Other really fun things to do are: the Bay Area Discovery Museum (which is right across the Golden Gate Bridge), the Exploratorium in the Palace of Fine Arts (located in San Francisco's Marina district), Alta Plaza Park in San Francisco's Pacific Heights is one of our favorite parks, has a great kid's playground and great views of the City, and the Farmer's Market at the San Francisco's Ferry Building.

Days Immediately Following Canalplasty with Dr. Roberson

The most amazing thing was that Ben appeared to hear us from the start from his right ear.  While lying on a pillow on his left ("big") ear, we could whisper into his new canal and he could hear what we were saying.

There was an antibiotic-infused plug (looked like a regular foam ear plug from Walgreens but ~$20,000) put in Ben's new ear canal.  The key was making sure that the ear plug stayed moistened by Tobramycin drops twice a day and that the plug didn't come out.  So no running, jumping, fighting, wrestling... all of those things 5 year old boys love to do!

Also, part of the skin on his head was used to line the new canal.  That area from which they grafted is the part that would give him the most discomfort, they said.  They also said that the actual ear canal would not hurt because there aren't nerves there!

After the surgery, Ben got a brightly-colored purple head bandage which he definitely did not like when he came out of the anesthesia fog.  They indicated that kids frequently come "out of it" in a very bad mood -and we definitely experienced that.  Ben was thrashing around not liking the IV in his hand nor the wrap on his head.  (Not surprising, huh?)

We stayed in Palo Alto for a few days so that Ben could "chill out" san temptations of rowdy brothers.  In the days immediately following the surgery, we tried to rest a bit (wake up late, take mid-day naps) and have one fun outing.  We colored, cooked and played with some new toys.  Ben was a little embarrassed about his head wrap...

To the left is a photo of Ben the afternoon after the surgery.

April 1, 2011.  A day after the surgery, Dr. Jennifer Grady, an ENT fellow with Dr. Roberson, removed the head bandages.  Ben liked that a lot.  Cheryl Medina, Dr. Roberson's Surgery Coordinator, is standing to the left.  There was a scabby and shaved square on his scalp whence the graft had come.  Ben was really careful of his head and seemed unfazed by the recent surgery.

Canalplasty with Dr. Joseph Roberson - March 31, 2011

March 31, 2011.  We went to Dr. Joseph Roberson (pronounced like "Robertson" but without the "t") two times (3/7/11 and 3/28/11) for long-awaited canalplasty appointments only to find out that Ben had slight temperatures and that they preferred to postpone surgery.  Ben had been acting completely normal (active as usual) so we were not aware that he had a temperature.  (I think the temperature was around 100 degrees.)  Back in the truck!  Ben practically memorized the Star Wars series.

When we went to Dr. Roberson's office the third time (March 31, 2011), and he had a temperature again, we decided to go ahead with the canalplasty.

We arrived at the Waverly Surgery Center in downtown Palo Alto.  There is good free parking under the building.  It was definitely one of the most heart breaking experiences seeing the OR doors close behind your little kid on the gurney.  Thinking about what he's about to go through is quite emotional.  Because Ben is a minor, either parent had to be in the building throughout the surgery, which lasted from about 7:30 AM - 11:00 AM.  The doctors called us or came to give us an update at least twice during the surgery, which was very reassuring.

After the surgery, when Ben was still in the OR but the surgery was over, Dr. Roberson came out and told us that everything went well and that Ben's anatomy was good because they were able to make a nice big canal.  He said that there was little to no risk of stenosis (narrowing/closing of the canal).  Some people who are familiar with this surgery will ask, when Ben got his cat scan, what was his rating.  He was an 8 out of 10.

One thing was because he had a cold and his ear anatomy was swollen, it sounded like they did not do everything that they might have to his three little bones.  Therefore, they said that they might have to do a revision on them.

Can't express how relieved we were to have that part of the experience "over."  We were so concerned about the canalplasty because of the risks of surgery in general and because of its proximity to the facial nerve and because of the risk of affecting the cochlea.

Long term effects of multiple surgeries and exposure to anesthesia.  One of the reasons why we did not want to jump into doing the surgery was because of our concern about multiple exposures to anesthesia and the potential effects on mental development.  After asking nearly every doctor and surgeon we encounter about the long term adverse effects of surgery on a child, it sounds like nearly everyone agrees that it's not ideal (due to the anesthesia) and that's part of the decision you need to weigh.  This article summarizing a Mayo Clinic study suggests that more than one surgery with general anesthesia more than doubles the changes that a child will develop learning disabilities.  This is another article on the topic suggests that the anesthetic, ketamine, in particular may be associated with a higher risk of having future learning disabilities.  One doctor said: "It's not until you get to around 4 surgeries that there seems to be an effect..."  I was thinking that we'd probably have around 4 (with the potential revisions, etc.) so this was not very reassuring!

Above is a pic of Ben in the surgery center while still asleep from the anesthesia.  One other note is that they said it was fairly common for children to have a "bad" experience while coming out of the anesthesia.  We definitely experienced that.  Ben is strong willed to begin with, but when he came out of the fog of the anesthesia with the residual drugs in his body, the IV in his hand and the huge bandage on his head, he was a bit out of sorts.

Doctor's orders:

• No jumping, running, wrestling, etc.
• No holding in sneezes (puts pressure on the ear drum) - just let it go
• No blowing nose - just wipe runny nose
• No swimming, bathing under water, getting ear or head wet
• No drinking from a sippy cup or drinking from a straw
• No sleeping on the operated side
• No aspirin or Motrin (Tylenol only)
• Flying in an airplane was OK after 2 weeks!