Our little happy dance was cut short today but some unexpected news. While things are still sunshine and rainbows for Mac's heart at present, his troubles are moving north.
Today we visited Primary's audiology clinic to finally get McKay's ears checked. With so much going on at his birth (and, quite frankly, bigger fish to fry) he missed his newborn hearing screening. Add to that the fact that he was discharged over Labor Day weekend for his first surgery and Thanksgiving weekend for his encore appearance, you can imagine that there was not an audiologist to be found. As a result his poor little ears have gone neglected until now.
So no big deal, right? We'll get his ears checked and then cross that off our list of "Things We Need to Worry About." Not so. Both of McKay's ears failed the screening today. The audiologist even put him through another test to rule out any fluid in the middle ear that would contribute to a false reading. She tested and tested again. Poor Mac failed and then failed again. I could feel myself get eerily calm and then the questions started flowing.
She asked, "How long was he in the NICU?" "Was he given antibiotics?" "Has he ever had an ear infection?" "Does hearing loss run in the family?" I felt like a robot. 11 days. Of course. Never. My grandparents and one uncle have hearing aides--does that count?
Apparently, some of the drugs they used to keep Mac alive and well in those early days have the nasty side effect of hearing loss for some kids. Awesome. And the heart and ears form at the same time in utero so there are come correlations between defects in both systems. Even awesomer.
Needless to say we not only did NOT get to cross fabulous hearing off our checklist today, but have been asked to get some additional testing done that involves sleep and food depriving him for a day and then attempting to get him to rest while they check his auditory system via his brain stem. I'm still not sure how that all goes down, but it sounds like absolutely the most awesomest of all. (Oh, except for the fact that hearing screening and treatments are NOT covered by our insurance policy--that's a double scoop of awesome to go.)
I am not panicking--yet. There is still much to learn before I can give myself permission to go there. But tonight I am frustrated. Believe me, I know we are blessed. I am the first to acknowledge that the Lord has been beyond generous with us. But I am ready to relax for more than one cotton pickin' minute. Is there a lesson I am supposed to have learned already? One that I've missed? PLEASE just tell me what it is I am supposed to get Zen with and I'll do it--then we can stop messing with my kid!
There. I'm done. That's all out there and now the ugliness is on its way out of me. Right now I really and truly want nothing more than a happy ending for Princess Gracie. As many of you know Gracie headed to Primary's on Tuesday to prepare for her Glenn surgery (the same surgery McKay had in November), but instead her family was given the devastating news that Gracie will need a new heart. Please, please pray for them.