Today brought some news that we did not see coming. We thought we were bringing Elijah in for a routine follow-up for his dislodged/non-functioning left ear tube. We left the hospital with a four-hour surgery on our calendar in order to fix a congenital anomaly called cholesteatoma. Upon inspection, the ENT doctor could see a "mass" behind his eardrum that was yellowish in color. It was not fluid after all, as initially thought.
Thankfully radiology was having a light afternoon, so we scooted right on down to get a CT scan to get a closer look at the mass. He was such an incredibly brave boy today (minus operating room trauma that unfortunately only seems to get worse with time).
The doctor was very nice to us. He told us to walk up to his clinic on the fourth floor once the scan was done so he could review it and talk to us about it in between patients. This was a very generous offer, and we took him up on it.
What we learned is that Elijah was born with a congenital anomaly that did not present itself until recently (typical for this anomaly). Our ENT gives this particular diagnosis only ONCE per year, can you believe it? Cholesteatoma presents as a cyst that presses on the eardrum, and can cause recurring ear infections. This makes total sense since Elijah never had an ear infection until a year or so ago. Once he got his first one, they never seemed to stop and he has had some doozies!
The plan from here is to have a bigger surgery (3 to 4 hours long, depending on what is found) to remove the cyst. They can sometimes do this through the ear, but sometimes need to make an incision behind the ear. Sometimes this surgery will also involve a bit of reconstruction, as the mass can interfere with bone growth.
Hearing a doctor tell you that your child has a "mass" within the confines of his head is NOT fun. I had a little moment of panic when I thought I might lose it. I asked the doctor, "Should we be....worried?!" Somehow this seemed to be a safer way to ask, "Could this be malignant?" His answer was that the extent of our worry should be limited to having to put Elijah through yet another surgery and also that he could possibly suffer from permanent hearing loss. His words: "Will this kill him? No."
Today was a lot to digest, but we are doing ok with it. It's another hurdle and we will come out on the other side stronger than ever, and hopefully with a boy who is able to hear again! As always, Dan's and my biggest struggle has NOTHING to do with ourselves and everything to do with Elijah having to endure further anxiety and pain. That part of it SUCKS. It makes my mama heart hurt so badly for him. He definitely has his triggers that cause major anxiety, but 98% of the time he remains positive and happy. His main source of anxiety is the "scary mask" in the operating room and the subsequent sleeping. We brought a mask home with us today to help alleviate his fears. I am certain I will find it with holes poked into it or possibly in the trash or toilet sometime soon. He does NOT like that thing, and understandably so.
Our surgery date is set for April 23rd. Please pray for complete success and for as little pain and anxiety as possible for our boy. Thank you!