Friday, January 30, 2009

Post-op Visit

At the post-op visit on Tuesday, the doctor clarified for us exactly what was going on in Kai's new ear canal. The picture below helps illustrate. The sponge is what you can see from the outside (shown in an earlier post). Behind the sponge is a lot more packing: a thick layer of gel foam, a silastic disk, and more gel foam. All of this packing keeps the ear canal open and the new membrane in place. (Originally, I thought stitches were used.)

At Kai's 3-week post-op visit (around Feb 12), a Portland doctor will remove the sponge, the first layer of gel foam, and the silastic disk. The last layer of gel foam will remain for another two weeks.

The doctor also *tried* to remove the dressing on the skin graft. He snipped the stitches that were originally holding it in place and removed the tape. Unfortunately, the dressing had slipped and the tape was stuck to part of the wound. Needless to say, removing the tape caused a lot of tears. Also, the dressing wouldn't come up even after the tape and stitches were removed--it had adhered to the raw skin. So... we get to soak it off. Ugh.

Monday, January 26, 2009

Almost there...

Trying to burn kid energy without running, jumping, swinging, leaping, and general roughhousing is, um, darn near impossible. So far, our strategy is to take them on walks in places where there’s plenty to see, but they always manage to work in some running and jumping anyway. On Friday, we took them to the Monterey Bay Aquarium (a fantastic aquarium). The kids had a great time—we were all mesmerized by the Outer Bay exhibit.

Yesterday we visited our friend Jonathan in Berkeley. The highlight for the kids was riding the steam engine trains in the Berkeley hills. The train rides and the drive to and from Berkeley helped keep the kids from getting too rambunctious. Here we are about to take a ride on a 7-1/2 inch gauge railway. It was a hoot.

Today, we went to San Francisco and wandered around Golden Gate Park. On the way home Kai complained that the skin-graft area itched a lot. He kept trying to rub the bandage covering it. We have a follow-up doctor visit tomorrow at noon and, hopefully, they can help us deal with the itchy skin graft. Then, we finally get to go home! It's been a really long week...

No Sneezing Allowed

As of Friday, our challenge with Kai has been keeping him mellow. The healing period is critical for success. We don’t want him to do anything to dislodge his new eardrum. He’s not supposed to suck through a straw or sippy cup—too much pressure on the ear drum. He’s also not supposed to blow his nose or sneeze. How does one not sneeze?! Of course, holding back a sneeze is even worse because it puts even more pressure on the ear drum. So far, we’ve been successful avoiding straws and sippy cups, but now Kai has a bit of a cold and blows his nose at will (even though we tell him not to) and, of course, he’s had a few bouts of sneezing. We’ll find out on Tuesday whether any of the stitches that hold the new eardrum membrane in place have slipped…

Post-Surgery Check-in

After we were cleared to leave the surgery center on Thursday, Kai slept all the way back to the hotel. Then we settled in for a 2-hour group nap. Kai was drowsy and obviously not feeling well most of the evening. He wasn’t able to keep any food down until about 10 o’clock that night. We gave him Tylenol with codeine on a regular schedule the rest of Thursday and Friday. Friday morning he was mostly back to normal and dying to be rid his purple turban. Our first stop was the doctor’s office where they cut the bandage off and re-dressed the skin graft and new ear canal.

And… here’s the new ear opening! The picture at left shows the arc of the incision line behind the right ear. It also shows the ear canal with a circular sponge filling it. The sponge helps ensure that the new hole and canal remain open; the sponge is also soaked with an antimicrobial or antiseptic solution. The hole is pretty large but, apparently, it’s purposefully that way because the opening will shrink as it heals.

I’ve spared you the gore of the skin graft: to the left of the incision is a 3 x 3 inch square that is covered with a clear plastic dressing that’s stitched in place. To me, it looks like a bloody mess but the doctor assured us it looks worse than it is. The doctor who prepped us likened the skin graft to “a really bad scrape”.

Here’s Kai at brunch afterwards with the surgery site bandaged:

Fortunately, there's a convenient gap between the skin graft area and the behind-the-ear incision

Thursday, January 22, 2009

First Surgery: What They Did

Here's the procedure that Dr Joseph Roberson performed today for Kai (provided on a checklist they gave us):
Right Reconstruction of External Auditory Canal for Congenital Atresia, Tympanoplasty, Split-thickness Skin Graft, Ossicular Reconstruction for Congenital Anomaly, Continuous Intraoperative 7th Nerve Monitoring, Baseline Electrophysiologic Study, Microdissection
My understanding of the above: Dr Roberson created the ear canal with skin from the split-thickness skin graft, which they took from Kai's scalp on the right side of his head. For the tympanoplasty (creating the eardrum), Dr Roberson took a graft from a muscle in the jaw. As far as "ossicular reconstruction" (rebuilding the middle ear bones), it sounded like Dr Roberson didn't feel it was necessary. He said the stapes wasn't as flexible as he'd like but it was good enough. Apparently, the "7th nerve" is the facial nerve. They monitored proximity to it to ensure they didn't get too close and accidentally cause damage. I'm assuming "baseline electrophysiologic study" just means they tracked his vital signs and, frankly, I have no idea what they mean by "microdissection". I'll have to ask tomorrow.

Most importantly, the surgery went well and the prognosis is excellent. The only bit of trouble occurred when they removed the breathing tube--apparently, he woke up flailing and managed to remove the bandage around his head. To quiet him, the anesthesiologist gave him a healthy dose of Fentanyl, which Keddrick says is similar to morphine but has a shorter half-life. (Keddrick, the experienced surgical patient, says he personally prefers Demerol above all others.)

Here's Kai in the recovery room sleeping peacefully with his new purple turban:

He woke up gradually and was able to go home about two hours later.

Altogether, we were there for 6 hours. Seemed short to me but I'm still amazed that it's an outpatient procedure.

Here Kai is again sleeping with his favorite blanket ("flower") on the way back to the hotel:

Day of Surgery

We arrived at 6:30 this morning at the Waverly Surgery Center in Palo Alto. They took all of us back to the pre-op area where Kai swapped his clothes for a fuzzy green gown. They took Kai's vitals and confirmed which ear was the focus. (You can see the word "yes" just in front of his right ear.)

After that came the Versed (midazolam), which not only relaxes but also has an amnesiac effect. We sat with Kai while the Versed went to work.
Next, Daddy handed over the now-loopy Kai to the anesthesiologist and we headed back to the waiting room.

Kai's First Surgery: Pre-Op Visit

On Wednesday, Jan 21, we all visited the California Ear Institute where Kai had his hearing testing and doctors told us what to expect.

Kai very patiently sat through a 30-minute hearing test in a hot, stuffy sound booth while his sister, Wren, waited very patiently in the darkened outer room. They played a variety of sounds through headphones and through a bone conduction hearing aid on his forehead. Everytime he heard a sound he placed a peg on a tower.
Then, the two kids waited much less patiently while doctors spoke to us for about 45 minutes. They spun themselves on the doctors' stools and took all the stickers they could find and stuck them on all of the office furniture. Wren capped off the visit by running in circles around the patient chair in the center of the room. They were, um, just a wee bit punchy though I have to say I was moments from joining Wren in her laps around the room.

Tuesday, January 13, 2009

Getting Started

We decided to record our family's experiences as our son, Kai, undergoes surgical procedures to address his hearing loss.

We adopted Kai in May 2008 from Hunan Province when he was about 2-1/2 years old. Kai has bilateral microtia/atresia, meaning that his outer ears did not develop properly (microtia literally means "little ear") and there are no ear openings (that's the atresia part). We already knew about his condition and some of the options available for addressing it.

When we brought Kai home in June, our first step was to have his hearing tested. We learned Kai's hearing threshold is about 70dB, so, unaided, he can hear loud machinery (like the vacuum cleaner) but can't hear normal conversation. As a result, Kai had almost no language when most children have enough speech to express basic needs and identify people and objects in their environment.

Within the first month of bringing Kai home, he was fitted by OHSU with a loaner SoftBand BAHA (which stands for bone-anchored hearing aid, although Kai's is not actually anchored). The device is an amplifier that uses the skull to transmit sound to Kai's middle and inner ears. For Kai, the middle and inner ears seem to work well, so this remarkable device brings Kai's ability to hear close to normal.

In just six months, Kai has moved from a very limited set of sounds (ba, ma, ye, ai) to a spoken vocabulary of a few hundred words and the ability to construct 4-5 word sentences. It is a remarkable device and remarkable progress, but there are limitations. Kai misses soft sounds like shh, sss, hhh so a typical sentence might sound like, "I wan doodos, peeze." When amplified, the sound he hears hits both ears at the same time, so he doesn't really know what direction the sound is coming from. And, it seems the sound from the BAHA is rather flat (background noise and someone speaking to you are hard to distinguish). To the rest of us, the BAHA sounds kind of like AM radio.

After getting the chance to adopt Kai, we learned there were a number of treatment options, including ear canal reconstruction (canalplasty). There are a limited number of doctors out there who will remove the skull bone obstructing the ear and create an ear drum and ear canal using a skin graft. We decided this type of procedure was for us, and fortunately, Kai is a good candidate for this type of repair.

Over the next few years, we'll use this blog to chronicle Kai's surgeries, recoveries, and the resulting changes in his hearing and speech. We'll also share what we learn along the way.