Bye Bye Baha
In Noah’s almost 2 years of life he has had dozens of appointments with the otolaryngologist. Before he was born I didn’t even know what kind of doctor this was. “Oto what?” I remember asking the scheduler at Seattle Children’s when I’d called to make an appointment. “I thought we needed to see an ENT, you know, an ear nose and throat doctor. He needs his ears checked,” I’d said, spelling it out for her as if she wouldn’t know what the letters meant. “Yes, same thing,” she’d replied. Each of our many appointments with “oto” went something like this:
The doctor would pull out his microscope, under which I would hold Noah so the doctor could poke it into my son’s ear and hopefully get a good look. Noah would usually scream bloody murder and flail every body part he could in response. I swear sometimes that child is part octopus. I would have him in a full hold and yet he would still manage to claw me in the eye and kick the back of my head. It only took a few appointments for them to wise up and call in a nurse for back up in advance. Even then someone would usually come out bruised. After the torture session, I would anxiously await the doctor’s news. Could he finally see Noah’s ear drum? Had his ear canals grown large enough to put tubes in? Unfortunately it wasn’t until Noah was 18 months old that I finally got good news. “You know, I think I could get a tube in this side,” the doctor said. “Really?!” I exclaimed, practically jumping with excitement. “When can we schedule the surgery?” I know excitement is usually not a parent’s typical reaction to the prospect of surgery for their child. However, we knew that tubes would at least somewhat correct Noah’s conductive hearing loss. As I’ve mentioned in previous blog posts (here and here) Noah failed the newborn hearing screening and subsequent tympanograms and hearing tests have shown fluid in his ears and moderate hearing loss. We know how important hearing is for speech and language development, especially for a child with DS who is going to struggle in that area anyway. At first we were hopeful tubes could be placed by the time Noah was 6 months old or so, which is often done. But it soon became evident that it could be a while. Kids with DS typically have small ear canals, but Noah’s are extremely small even for DS standards. In the meantime we pursued a hearing aid, first using a trial offered by Children’s and then purchasing our own softband Baha (bone anchored hearing aid).
While this device undoubtedly helped Noah’s hearing, it was a massive pain. Remember that octopus child I mentioned earlier? Imagine strapping a $4K piece of equipment to his 18 month old head and telling him not to touch it. It was difficult to keep on him and even more difficult to keep it out of his mouth. We tried diligently to use it as much as possible, but as he got older it became a necessary burden that was harder and harder to manage. The prospect of my sweet boy being able to hear my voice clearly without the Baha was so exciting, but it always seemed just out of reach. So when the doctor gave the go-ahead I was ready to schedule that surgery. However...despite the fact that we knew the surgery would help Noah, it was still terrifying. We had also discovered through a sleep study (link) that Noah had moderate/severe sleep apnea. The plan was to have a combined surgery to insert ear tubes and remove both his tonsils and adenoids, which is typically the first measure to correct sleep apnea. We were all set for surgery at the beginning of April. I had Noah on quarantine for about two weeks prior to ensure he didn’t get sick. I don’t know what I was thinking...keep germs away from an 18 month old when his 3 year old brother is in preschool? Yeah right! Noah caught the parainfluenza virus which developed into croup, landing us in the ER three days before his scheduled surgery. Despite a night in the ICU, Noah recovered well and was ready for surgery a few weeks later.
Although these were all minor and fairly simple procedures, I was still incredibly anxious and scared for my baby to have surgery. We entered Seattle Children’s Hospital on a rare sunny spring morning with a hungry and cranky boy, buoyed with prayers and positive messages from our friends and family. Cameron and I passed the time in the hospital Starbucks trying to distract ourselves with lattes and books. A short (but felt like forever) 2 hours later our buzzer went off, alerting us to check in at the desk. Noah was out of surgery and the ENT said it had gone remarkably well. Noah was not a happy camper coming out of anesthesia, but settled down once he was in my arms. He was eating and drinking right away which is a great sign, so good in fact that they downgraded us from an ICU room to a regular hospital bed for the night and we went home in the morning. It was a rough couple weeks of recovery primarily for the tonsils, including some sleepless nights, round the clock medication, and the worst breath you’ve ever smelled (think dog breath plus rotting animal). But all in all Noah was a trooper and handled everything extremely well.
Back to the present…a few weeks ago we had several appointments at Children’s including a post-op and a hearing test. We were there for 4 hours, 2 of which Noah cried hysterically, no doubt remembering his stays at the hospital and therefore traumatized by anyone wearing scrubs. The hearing test was our last appointment and I didn’t have much hope that Noah would tolerate it or give us any conclusive results. To my surprise it turned out to be the bright spot of the day. Noah’s hearing went from moderate hearing loss to borderline normal. AMAZING! The hearing test results below show his previous levels at the bottom (ranging between 40 and 60 decibels) and his most recent results at the top. “Normal” hearing is marked by the bold line at the 20 decibel level. The audiologist gave us the okay to say goodbye to the Baha and we haven’t looked back!
Thanks to everyone for your thoughts and prayers during Noah’s surgery and recovery. It’s so good to get positive results and know that it was all worth it!