ABR

A few weeks ago I took Kaitlyn to UNC for an ABR. An ABR is a hearing test, ABR stands for auditory brainstem response. If you're curious about the test, here is some more information, but basically, they send sound into the ear and monitor the brains response to that sound. Kaitlyn has had this test once before, when she was about 8 weeks old, and I was eager to do it again to get a really accurate view of where her hearing is. She has hearing tests every 3 months, but they require Kaitlyn's cooperation and don't give us any idea of where the hearing in her right ear (the ear that has hearing loss) stands.

With CMV, hearing loss is almost always progressive, meaning that it continues to get worse over time. Almost all of the time, about 95% of the time, once hearing starts to go in an ear, it goes all the way. This is without any treatment. Kaitlyn was treated with ganciclovir and then valganciclovir, and we had hopes that it would stop the progression of loss in her right ear and keep it intact in her left. I went into the test feeling that I would be happy with any result for her right ear, as long as her left stayed the same. If she lost more in the right, but didn't lose any in the left, I would feel confident that the left ear was going to continue to hear well. If it stayed the same, I would feel that the ganciclovir had worked and had stopped all progression of hearing loss, thus preserving the hearing in the left ear. And if it the hearing in her right ear somehow miraculously got better, well, that would just be awesome.

Kaitlyn had to be put under anesthesia for the test. You have to be very still for an ABR, and while she was able to sleep through the test at 8 weeks, that just wouldn't happen at 1 1/2. We've been waiting for this test since December, and it was quite the ordeal: anesthesia, a breathing tube, IV, the works. It took place in the surgery wing of the hospital and involved a pediatrician, anesthesiologist, audiologist, ENT doctor, 2 nurses, and a couple of students.

Our appointment was for 1:30. I got a call the day before and was told that Kaitlyn could not eat anything after midnight the night before, and could only have clear liquids the next day (jello, juice, water, pedialyte, ect.). Kaitlyn doesn't drink anything but milk and I KNEW she wouldn't eat jello. I asked if we could make her appointment earlier, but had no luck. After a bit of persuasion, I was able to get a pediatric anesthesiologist to agree that Kaitlyn could have milk in the morning, but nothing after that. We were able to start her day our normally which really helped.

We got to the hospital right on time, at 1:30, found the waiting room, and waited for our turn. And waited. And waited. I finally told a nurse that Kaitlyn hadn't eaten since 6:00 pm the night before and we really needed to get started. Amazingly, we got called back in 5 minutes. Funny how that works... We were put in a pre-op room and waited again. And waited and waited. Kaitlyn did so well with all the waiting. She was tired and hungry, but somehow it just made her sillier. She would squirm to get off my lap in our room and scoot as fast as she could (and she's pretty fast) down the hall to the nurses station and hold up her hands for someone to pick her up. She had everyone completely charmed.

We FINALLY got situated at 4:00, 2 1/2 hours late. They let me go back with Kaitlyn and be with her while they put her under. She was so brave, she never cried or got scared. She fought the anesthesia briefly, but was out pretty quickly (it is NOT very fun to watch your child go through that by the way!). I left then, and waited for about an hour in a half while she got the test done. In addition to the test, they also did an examination of her ears and explored the option of putting in tubes (which didn't end up happening).

The audiologist came to give me the results after Kaitlyn was all done. The results were good. She had NO CHANGE in her hearing since the last test. Her right ear still tests at moderate/severe loss and her left still tests normal. I can now feel confident that the ganciclovir worked and was worth all the trouble and stress that we went through for Kaitlyn's first year of life.

Despite making us wait forever, I was very happy with all our nurses and doctors. Her procedure was very minor, compared to what so many kids go through, but they made it their top priority. I never felt like Kaitlyn was less important to them just because she wasn't having a major surgery. One doctor told me that Kaitlyn would be fine and that they would treat her as their own. Then he looked down at her medical information, which is full and detailed, and said, "Because really, she is ours." It's true. Without their knowledge, help, and intervention, I don't think Kaitlyn would be here today.

Trying to decide what to do with the jello...



Decision made!



Playing in the waiting room



Showing off her early walking skills



Just about ready to start the test...poor little bug



After and (mostly) all smiles again! She is such a trooper!