wherein Ellis was a very brave boy

Thursday and Friday I packed up Ellis in the backpack carrier, packed up my bookbag, parked my car, and boarded the train. We were going to Children's Hospital of Philadelphia (CHOP) for more hearing tests. He hasn't had any tests since late August when he was two and a half months old, and those tests were at Temple Univ Children's Hospital. The next appointment I could get for Ellis is in February, and feeling the need to get a clearer diagnosis and to get him into hearing aids, as we have now entered the phase of critical language development time, we decided to turn elsewhere. CHOP is run by a private university, and it shows. I had a much better experience with them than at Temple, run by the state-funded university. Sad, but true. I called CHOP for an appointment and got one a week later.

So Thursday we went for a Behavioural Hearing Test. Ellis sat on my lap in a booth. They played sounds and tried to condition him to associate sounds with a chicken that lit up and moved when they pressed a button. They first started by playing sounds over the big speakers in the booth, but then moved to putting a little microphone sort of thing behind his ear and later, little headphones that inserted into his ear. The audiologist on the other side of the glass played sounds and the audiologist in with us reported: "eye shift", "slight eye shift", "no response", "eye shift". It was amazing to me that she could tell which eye shifts were response to sound. The result of this test is that Ellis has some residual hearing in his left ear. He could hear sounds at about 90 decibels--about the sound of a jackhammer. So even though there didn't seem to be response in his right ear, we are so thankful that there's something!

The next step was to get an ABR (auditory brainstem response) test. Normally you have to schedule this weeks in advance, because it is kind of an involved test. When we went to schedule one, they had an opening the next day! Yay. ABR's need to be done when the person is at rest. Ellis had one done this summer, and I just nursed him to sleep and that was fine. Now he is too old for that and needed to be sedated. It turned out that this was the most difficult part of the whole test, because he could not eat for 6 hours before the sedation.

Our appointment was at 11 am, and they said that the last time he could eat was 4am. Even though he wakes up a lot at night to nurse, I set the alarm to make sure he could get a good feeding at the latest possible moment. Ellis and I boarded the 8.59 R1 and got off at University City. We arrived at CHOP around 10, and knowing that he hadn't eaten, they processed fairly quickly, but it was still involved. We had to be cleared by an ENT (ear nose throat doctor), which was no problem. And then we went over to the sedation unit. Everyone was really nice and helped me carry my things and cooed at the baby. Unfortunately Daddy couldn't be with us, because of the last minute appointment, and his being a teacher means that he just can't take off, you know? So I was really grateful that everyone was so nice and helpful.

By this time it was nearly noon. Ellis hadn't eaten since 4 am, and he hadn't slept since he woke up around 6.30 except for a fifteen min snooze on the train. I can't imagine how miserable he must've felt. And I was so stinkin' proud of my kid, because he barely fussed!!! He could take his mind off how he was feeling by playing with the couple of toys I brought along or playing with my face. By the very end, I could tell it was getting harder and harder. All I could do was just hold him and coax him to suck his pacifier. Then they gave him the sedation liquid orally (thankfully didn't have to use an IV), and he drifted off into blessed sleep.

During an ABR they attached electrode thingys around the head, play varying levels of frequencies, and monitor the brain's response. In short, they are testing how well the ear talks to the brain.

There are different kinds of hearing loss. A conductive loss is hearing loss caused by something (like fluid) that stops sounds from getting through the outer or middle ear. A sensorineural loss is hearing loss that occurs when there is a problem in the way the inner ear or hearing nerve works.

There are also different levels of hearing loss. I asked the audiologist how they quantified hearing loss. She said it's more like catgorizing the loss on a spectrum than actual percentages. The spectrum goes from mild to moderate to severe to profound.

The ABR took almost an hour, and afterwards while Ellis slept off his sedation, she went over her observations with me. Finally, we have answers, something tangible. She was able to diagnose his hearing loss as severe to profound, finding some response in the left ear at around 85 to 90 decibels, adding the caveat that the ABR can only go up to 90 decibels, perhaps the right ear could pick up sounds much louder than they were able to test, but for all intents and purpose in the moment, the right ear gave no response. She was also able to confirm that his loss was sensorineural, which is permanent.

The audiologist was eager to get him into hearing aids as soon as possible, so while he was still asleep, she took ear molds, squirting this soft substance that quickly hardened into his ear. In a couple of weeks, we can go back and get him set up with loaner aids, while we figure out insurance in order to buy some. The state has medical assistance that will cover what our insurance doesn't cover for the aids; so even though it's complicated, I think it'll work out fine.

Because his loss is so great, he may also be a candidate for cochlear implants, providing that other conditions are met (e.g. that the auditory nerve is there or that the cochlea is shaped right). So we'll set up informational meetings to proceed in that direction, too.

A children's hospital is not a happy place. Walking through the halls, I passed parents with worry lines etched into their faces, children in strollers clutching blankets breathing through a tube. Stars in the floor tiles and rainbows painted on the wall try to comfort the passers-by, but it is a place full of kids with really big boo-boos. Though I was sad for the kids who face such huge physical challenges and pain, I walked out of there feeling so thankful that the only thing wrong with Ellis is his hearing, and we can work with it! He is happy and healthy, bright, responsive, and expressive. We just can't believe how much we love him!