Saturday, January 29, 2011

Latest news on Tyler

Good morning everyone. I suppose it's time for an update. I've got good news and bad news.
The good news is that Tyler does NOT have Chagas OR holes in his heart. The bad news is that the next step is a 30 day monitor which sucks, and Tyler is in the last couple of weeks of ALS so he really can't be gone from class. So he'll put that on the day after graduation, which is February 16th. The crappy thing about this monitor is that it doesn't do what you'd think it would do. It doesn't record the whole 30 days. How this thing works is that when you feel a symptom (light headedness, dizzyness, black outs) then you push a button. The monitor then records 30 seconds before you hit the button then a minute after. When it's recorded then you have to use a land line, call a number that they've given you, make a voice recording of what you were feeling, then put the monitor on top of the phone and it transmits it's little minute and a half of data. If you don't transmit it before the next time you hit the button, then it records right over it. It's very hands on and annoying, And the really crappy thing is that when Tyler's heart stopped last time he was on a monitor, he wasn't aware of it, and they already saw that his dizzyness wasn't caused by low heart rate. So this is what's going to happen, and I can almost guarentee it, he's going to wear this annoying monitor for a month, we'll have the follow-up a week later, then he'll say that the symptoms and the low heart rate aren't related, then he's going to recommend this other monitor that goes under the skin but that really does record everything, whether you're aware of it or not. And he'll have to wear that monitor for another 30 days, then it'll probably be a couple of weeks before they can sort through the data and get it compiled into a report for the doctor to read. Which means that it could be May or June before we find out whats wrong with his heart. Why not start with that second monitor you ask? Because it's "more invasive" and they only want to do it if "the external monitor doesn't show a cooralation between symptoms and heart rate". Apparently the requirement for a pace maker is "2 seconds with symptoms, three seconds without" meaning how long his heart stops. So how much do you want to bet I'm right? :P Anyway in the meantime Tyler has an appointment with his Primary Care doctor to see if we can FINALLY get that referral to see a neurologist and get his headache taken care of. Originally they wanted to "see what the cardiologist says" but we are NOT waiting another 2 months at least to get his headaches gone. It has been a constant migrane for 6 months now. Rediculous! Anyway, so that's what's going on. I will update as things happen.

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