February 3, 2010 mcfadyena

Three years of ERT

Downtown Vancouver during the Vancouver 2010 Olympics. What an AWESOME experience!


We had a party at the Medical Day Unit on Monday to celebrate the three year mark of Trey’s infusions. I can’t quite believe it. Three years. He doesn’t even seem old enough to have had 3 years of treatment, but then I look at him and yup, he’s going to be six in a month. It’s crazy to think. It was lots of fun. Family and friends came, there was cake and pie and balloons and presents. A great way to spend a Monday at the hospital!
Trey’s awesome ENT came to the party, so we chatted about Trey’s ears, which have been giving us heck for the past monthes. One continues draining, constantly, and smells… not great. Dr. Moxham said that sometimes, in permanent ear tubes, bacteria will stick to the tube and lead to this kind of problem. A new tube needs to be put in. Dr. Moxham said it’s up to us how quickly we want to deal with it (which means another surgery). Other than the smell and draining, it’s not a huge problem. The problem from our end is that with a draining ear and hearing aids, Trey can’t hear from that ear. As soon as the aid is put in, fluid starts filling the tube in the aid until it’s blocked and the aid is useless.
We have a trip booked to UNC for development tests, as part of the IT trial with Dr. Muenzer’s group, for March 16 & 17, so we’ve decided  we’d like to try to get Trey’s ear problem resolved before we go down there. I just really wanted to avoid another surgery until it was necessary, or until we could get something else booked during the same general anesthetic, but this is somewhat inevitable. We’ve held off for a while already. Bummer.
So then I called the ENT secretary to book an OR time before Trey’s UNC trip, but the wonderful Olympics have put a jag into everything here (we even have friends who have an emergency custody situation going on and they have to deal with it by Friday because the courts are closing for a month!). Dr. Moxham has one emergency surgery OR date on February 24 that is completely booked, and his next OR date is March 15, when Trey will be in NC. So, we’ve been put on the cancellation list for Feb. 24 and have an appointment to see him on Feb. 10.

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