Yeah, Frustrated

Where to start. I think a lot of it is due to the fact that I have very little energy being 32 weeks pregnant and all, but I think I’m also frustrated with MPS right now. The day after Trey’s hernia surgery, Avery got a cold (probably from hanging out in the hospital waiting for Trey…ahhh, hospitals). Fortunately Trey waited to get the cold until after ERT on Wednesday. Why ERT on Wednesday instead of Monday after surgery? Dr. Stockler and Mahmutoglu want to keep surgeries and ERT at least 24 hours apart so that if fevers or other things come up, it will be obvious what caused it. He got Ave’s cold Thursday morning, and that’s where it all started. Although Trey’s cold was at its worst Thursday night and Friday, it was still lingering Monday (as kids colds always do) when Trey was booked for ERT. He still had a runny nose and he coughed every hour or so. Trey’s doctors postponed ERT for the day and said we could try again on Wednesday. I was frustrated because I knew this was just the remnants of Trey’s cold and I knew it would last for at least another week. If they won’t infuse Trey with any sign of a cold, he will likely miss many infusions, and if this is the case, why were we going to come back again on Wednesday?
For over 6 monthes now I have avoided all places congested with kids so that Trey doesn’t get sick… Science World, the Aquarium, busy play groups… I feel badly for the kids because they love these places. But I also don’t want Trey to miss infusions. Anyways, we went back on Wednesday like we were told even though Trey had exactly the same symptoms as on Monday. To make a long story a bit shorter, they infused Trey that day, with Claritin and Advil, which he doesn’t usually get. Trey still has a raspy voice from his cold today…but, he has yet to miss an infusion in over 6 monthes. And Trey’s doctors have agreed to give me explicit instructions/directions/their protocol for when Trey will be infused and when he will not.
Then last Tuesday, August 28 we saw Trey’s audiologist. The tympanogram (it’s a machine that plugs into a computer and Trey’s ear that measures the size of the space in the ear…big number means ear tube is open, small number means ear tube is out or plugged) showed that Trey’s right ear tube was blocked (small number…she could see the tube in his ear, so assumed it must be blocked) and his left ear tube was open (big number). However, when she tested him and did the audiogram (Trey wears headphones and listens for sounds she makes in a soundproof room), his hearing was down in his right ear as expected, but it was also down in his left ear. This perplexed her. She asked us to come back in 2 weeks for a re-test to see if Trey’s attention was down on this day, meaning that he just wasn’t responding to the quiet sounds in his left ear, or if his hearing was actually worse. She also asked us to try and see our ENT between now and then to figure out for certain what was going on with his tubes.
Our great doctors and very helpful and agreeable ENT were able to set up an appointment for Trey to see Dr. Moxham this past Tuesday, September 5, right before Trey’s infusion. Dr. Moxham said that although Trey’s right tube is still in his ear, it is no longer in his ear drum (and therefore there is no longer a hole in his ear drum), and his ear is filled with fluid. His cold must have led to the fluid and resulting hearing loss. His left ear tube is still in. I can’t recall exactly what he said about blockage and fluid in his left ear, but I know he was also a bit perplexed because he ordered an audiogram to be done following our appointment with him for more information. This audiogram gave us our answers. It showed the same results as the previous week’s audiogram. His hearing was down in both ears. However, when the audiologist did a bone conduction test, Trey’s hearing was the same as his ABR which was done over a year ago (which is much better than his audiogram results). The tympanogram confirmed that both ears are blocked. All of this information together clarified that Trey’s hearing loss is in his middle ear (fluid) and is not an increase in permanent loss. This is great as is means Trey’s hearing is not getting worse, but it is frustrating because it means he has to have surgery again. October 1.
Trey is scheduled to have an abdominal and cranial MRI in December. However, because we are planning to see Dr. Escolar in November again and I’d like her to see the results, and because Trey has yet another General Anesthetic coming up, I asked about doing Trey’s MRI on the same day as tube surgery (to avoid putting him under one more time). I know it has been done and is possible (and is done often at other hospitals), but I was told we would be told it is not possible and it would be a fight to get it done. Yesterday I was told that the request had been made to do both together and was denied. It’s amazing to me…boggles my mind that for a kid who goes through so much, and when I know it is possible and has been done, they will still say no. Yes, I’m frustrated.
In other news, we saw Trey’s physio last week. This was the second time she has seen Trey. She does very detailed and specific measurements of his joints with a goneometer… she specializes in joints and arthritis. The majority of his measurements were better than a month and a half ago. She said that it is possible this is due to Trey being more comfortable and relaxed with her, but his ankles have gained quite a bit of range, so any way I look at it, this is good. Even if his measurements are better because he’s more comfortable with her, and not because he’s gained actual range, this does mean he has not lost any more range.
And last but not least, getting elected to the MPS Society Board is pretty great. We had an Annual General Meeting, a Board development meeting, and a Board Meeting in the last weekend of August. It was really nice seeing all the people I met for the first time at the MPS Society Family Conference in July 2006. And although I didn’t get a chance to bring up what I wanted, hopefully I will get an opportunity to do so at the next meeting in November. I did, however, learn a lot and I have a lot of ideas I hope I can bring to the Society.