Lucas has had several sets of myringotomy tubes over the years. It is quite common for kids with cleft palate to have issues with their Eustachian tubes adequately draining the ear.
For those of you new to the world of cleft palate, here is a brief tutorial.
Close your mouth, and touch your tongue to the top of your mouth. It feels hard, right? That is your hard palate. Now, move your tongue back to where it gets squishy. That is your soft palate., and it goes to the back of your mouth. A cleft palate is a cleft, or opening, in the palate area. Some clefts are soft palate only, some are of the hard palate only, and some are soft and hard palate.
Ok, now, yawn. Feel those muscles at the back of your mouth along the top (the soft palate)? Those muscles form an arch at the back of your throat, and they have several functions in addition to helping you yawn. One of their functions is to help drain the Eustachian tubes. Eustachian tubes are internal tubes that equalize pressure in your ear.
Now, imagine an opening, or cleft, in the soft palate. Where would that arch of muscles go without tissue there? The answer is, they can't go there. The muscles don't form the arch, they just go straight up on either side of the palate. And because they aren't attached the same way, they don't work as well. Fluid and pressure can build up behind the ear drum, which is very painful and can effect hearing. Hence, many kids with cleft palates need ear tubes, and some continue needing them into adulthood.
Ear tubes are very small tubes that are placed in the actual eardrum. They function as an alternative way for the ear to equalize the pressure, by allowing fluid to drain through the tubes.
Lucas had his first set of tubes when he had his palate repaired at 10 months old. He has had three other sets since. His most recent set was a slightly longer tube, with a slight 't' shape. They are designed to stay in the ear longer than regular tubes, which usually fall our within 8 months or so. We used these t-tubes for his last set because we didn't want to have to keep going back for new tubes that often.
One of the tubes fell out after about two years, which we expected. The other tube has not fallen out. This is good for pressure equalization, but not very good for his ear drum. The tissue around the tube is a bit irritated, and the doctor is worried it will develop scar tissue around the ear tube and create a permanent hole. So, the tube needed to come out.
Enter the long thing instrument with the tiny tweezer-like pincers on the end. The procedure coudl be performed in office, by simply using the instrument to pull the tube out. It would hurt somewhat like pulling off a bandaid, and could hurt for one to three minutes. Sounds pretty harmless, right?
Well, unless you have a needle-phobia, that is. That long thing metal instrument with pincers on the end looks a heck of a lot like a needle. And for a boy who has had one too many doctors trick him into doing something unpleasant by promising it wouldn't hut, there was no way Lucas was going to let the ear doctor remove that tube.
So, we got a referral to the psychologist, the same one who helped us through bone graft surgery. She got the instrument and some Playdough, and a model of an ear, and she and Lucas worked out a lot of his anxiety and got a lot of his questions answered. I purchased a reward (an Action Replay for his Nintendo DS) and we all went together to have the tube removed.
Part of our strategy was for me not to be in the office at the time. Lucas went in with his Psychologist, and they did their relaxation techniques, and Lucas was able to handle the situation without me – a great step toward his independence.
But we had a wrinkle. It turns out that the other ear, the one that had the tube fall out over a year ago, is showing fluid behind the ear drum. This means that his Eustachian tubes are likely will not working. So it would be a mistake to take the remaining tube out, as fluid could build up in that ear too, and we would end up going in to put the tube back. So the tube was left in, and we are keeping an eye on the tube-free ear for the next few months before we decide if we will put a tube ion that one, too.
So I guess in many ways, we had success, because Lucas was calm and prepared and capable of doing the procedure. But I can't deny the irony of the situation, that the procedure couldn't happen for a completely different reason that was out of our control.
So I gave Lucas the reward, because he did his job just perfectly. And I guess in three months, we will either have to go through it all again and take the tube out, or we will have to schedule a trip to the OR to get a new tube in the un-tubed ear. Either way, I can see several trips to the psychologist in our future. Just call my psychic.