Will my son’s third ear tube placement surgery be the charm?
My 6-year-old with Pompe disease is having more difficulty hearing
My 6-year-old son, Cayden, has been seeing an ear, nose, and throat (ENT) doctor since he was about 2 years old. His metabolic disease specialist, who manages everything related to Cayden’s infantile-onset Pompe disease, originally referred him to the ENT department because this type of Pompe is known to cause hearing issues in some children.
Ever since that first visit, we’ve repeatedly noticed that Cayden has trouble hearing. He has chronic fluid buildup in his ears, and his right eardrum is retracted. The ENT doctor explained that Cayden’s hearing is muffled, like when water gets trapped in the ear while swimming. Fluid doesn’t drain from his ears.
Due to the chronic buildup of fluid, Cayden has undergone ear tube placement surgery twice, when he was 2 and 4. During his ENT appointment last week, Cayden’s doctor recommended that he get another set of tubes placed. The tube in his right ear came out completely after our shocking discovery that Cayden had placed Play-Doh in his ear, and it was lodged behind a big piece of hardened wax. There’s still a tube in his left ear canal, but it’s not in the eardrum where it should be, making it pretty much useless.
Round 3
There seems to be a repeating cycle of Cayden needing tubes every two years. Although it’s a common procedure, it does require a bit more effort in Cayden’s case. He has a difficult airway that makes it hard to intubate him. This is tricky, because to get tubes placed, children are usually put under general anesthesia.
Because of the risks associated with anesthesia for Cayden, he has to have the procedure done at a children’s hospital instead of at an outpatient clinic. As a result, we may have to wait for a while before we can get Cayden into the operating room, as scheduling tends to be more chaotic at the hospital.
I can tell Cayden is due for a new set of ear tubes, as he often says, “Huh?” and “What did you say?” Even the nurse and aide who attend school with him every day have noticed that he’s having more difficulty hearing lately. This makes me uneasy, as I worry he’s not hearing important information at school.
Hopefully, we can squeeze the procedure into the schedule sooner rather than later. According to the ENT specialist, many children outgrow the need for ear tubes around 8 years old, so I’m hoping that’s the case for us. But I never know with Cayden — he is full of surprises! Fingers crossed that the third time’s the charm.
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