so this is word for word (actually cut and pasted) from FB so if your seeing it in both places no need to continue you've ready read it...
beware VERY LONG!!!
http://www.sads.org/About-SADS/Long-QT-Syndrome
ok so EKG today confirmed the prolonged QT (link above has definition its very complicated and I still don't really understand it).. will have genetic testing orders done Monday (scheduling this may get tricky w/ insurance it is VERY expensive but cardiologist says insurance will pay it just may take jumping through some hoops which his office has done many times and know how to do it) to see if he has long QT Syndrome, there are 3 degrees (or levels) of long QT syndrome dr is fairly certain IF he's positive for syndrome he would have the most mild degree because he has NEVER had any symptoms, ie: chest pain, dizziness, seizures, shortness of breath etc. if he has the most mild he'll be on a beta blocker and watched fairly close but can still do sports IF he has the other 2 no sports and we talk about surgically implanting a defibrillator.. he also has to wear a cardiac monitor for 24 hours but since the boys have youth conference tonight dr said we can do it sunday-monday morning.
Ben and I have an appt w/ a Cardiologist on July 2nd to get evaluations, make Echo appts and get set up for genetic testing for US...
they are looking at Hunter's EKG again to make sure they didn't miss this in his (like they did in Brad's first) and KayLea has an appt first week of August to check her out...
first I am so thankful for Medical doctors... I kept thinking today.. what if we had never known any of this and something awful had happened to him... this is un-diagnosed very regularly it is a hard thing to find and you don't find it unless your looking (ie: Brad is almost 16.. this week is his b'day.. and we have NEVER suspected a thing!) it is diagnosed ALLOT in autopsy's of sudden cardiac death's of young people.. (thanks google for informing me of this fact!)
so for now we wait... he can still do football practice.. we had to be very careful about him NOT getting dehydrated and dr has said he needs to take it easy, no full force weight lifting no full force sprints and no long distance running (thankfully for Brad we didn't know any of this before his 50 mile hike!) I'm going to talk to his coach on Monday and he's been put on a very low dose beta blocker for the time being..
Ben is feeling some pain from his Oral Surgery today (yes I got all the info about Brad while in the waiting room of the Oral Surgeon's office today) it was an interesting ride home telling him about Brad while he was still loopy from the anesthesia, had to repeat myself several times and i'm still not sure he remembers it all although just a few minutes ago he said he think he's gotten the high notes of it all.. I had to leave him for about 2 hours to get Brad's EKG done which I wasn't planning so I raced home to him in allot of pain and out of gauze to pack his mouth so had to stop to get him more gauze.. but he's got pain meds on board (we had some confusion re taking vicidan every 4 or 8 hours.. its 4 thankgoodness!)
boys are at youth conference for the night and all day tomorrow the girl and I are going to go see Brave (as long as Ben is ok to leave on his own at home) and right now I really want to go to bed..
if feels a little like i've lived a month in just about 10hours.. again I have an amazing family who can give me the lift and support I need over the phone so I don't want to go run my car off the road!!! I am so lucky
of coarse our saga is to be continued...
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