Friday, January 18, 2008

Lucas and The Ear Tubes

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.

Thursday, January 10, 2008

We're Alive

Despite my lengthy absence from this and other blogs, I am alive, and so is the rest of the family.

As if working 30+ hours a week around a child who only goes to school until noon, taking said child to various appointments, and getting orthodontic work for other child wasn't enough, the calendar rolled into December and I got hit by the holidays.

Though busy, I have no other complaints about this holiday season. On the contrary, I really enjoyed Christmas with the kids this year. Tree decorating is no longer an tense struggle to keep the kids from breaking heirloom ornaments: they are old enough now to handle everything with the care and reverence they deserve. We didn't have a single meltdown at any of our gatherings: the kids are older now, and don't get as overworked at Christmas as they have in past years, and better know how to handle themselves when they are excited. And after their first attempt to get up at 12:15 am, the boys went back to sleep until 7:00 am, which is a very respectable rising hour for Christmas morning.

The boys got a Nintendo Wii from one side of our extended family, and several games for it from the other site. Lucas was so happy, he literally had tears in his eyes. To my utmost pleasure, playing the Wii is much more fun than any of the other game systems we have had in the past, and the whole family has been bowling together regularly ever since. I never thought a game system would create more family together time, but it has.

When we had very young kids, new Years Eve was always a non event. If we did anything, it was watching a movie and we were lucky to stay up until midnight. Now that the kids are older, they are excited to stay up themselves and ring in the new year. So, this year we had a small party with one friend. We made New Years ornaments, fizzy pink punch, and had chocolate fondue. Coram was worried he wouldn't be able to stay awake, so we took our noise makers outside at 9PM and shouted 'Happy New Year Ontario!'. At twelve we went out again and danced around the yard with our horns and shakers. Having made it to midnight, the kids were happy to go to bed and we were all asleep by one.

After New Years, we had a week of just hanging out around the house. The kids played their Wii for hours, but did take breaks to read their new books, build lego, and play with various other toys they were given. They also had some cool field trips through Kidsafe to the Vancouver Aquarium, Watermania, and skating.

This week is back to school, and so far it is going ok. Coram is at his new school, still half days, but with the intention of working up to full days. He has been spending sometime with his class mates, mostly for un-structured activities like library and gym, but it is all a slow process to get him worked into the classroom. His aid is motivated and positive, and I am cautiously optimistic. My work hours have gone back to the normal pre-Christmas level, so I am no longer rushing out for 6 am starts, for which I am very thankful.