Tiernan was born with severe and complex congenital heart defects (CHD)on August 19th, 2009. He has endured a total of 13 surgeries, including 3 open heart, 5 heart caths and 4 surgeries to place, deal with, and finally, remove his gastric feeding tube. These are his stories.
Friday, August 24, 2018
Tiernan might be a Hobbit,or more likely a Wizard but otherwise things are great!
Tiernan had another fantastic cardiology appointment the other day. Dr. P. said that if he just covered up the date on the last 3 echos then he would not know they spanned a full year.
UNCHANGED!
We did make one little change by cutting his lasix dose in half. We are now down to a dose that Dr.P. admits might as well be zero, but on year four of "The Slowest Lasix Wean In History", I guess he still isn't willing to drop it entirely. Tiernan will have to go in for another blood draw in two months instead of 6, but even he agreed it would be worth it to keep getting rid of the pee medicine. Since we know his trend has generally been to have a BNP spike after messing with his Lasix, we anticipate a higher number than his current, beautiful, 50-something, but we will keep an eye on it if it is a really high number.
Other than that, the only thing that we are watching (and by we, I mean me) is his slow height and weight progression. He did gain some inches this year but almost no weight. And with the amount of food he puts away (no...really....he is probably a Hobbit: 1st Breakfast, 2nd Breakfast, Elevensies, Lunch, 2nd Lunch, Tea, Dinner, Supper, Bedtime Snack...) I would expect him to be gaining weight. Dr. P is not concerned. Not even with the amount of sodium he eats. (One of the only benefits to lasix?) The only reason he is wishing T would hurry up and grow is so his legs will be long enough to reach the pedals on the stress test bike.
If all looks well with the labs, we will possibly wait for his next birthday for his next echo and ekg which would be a goal we have had several times but still not attained.
In other Tiernan related news, he is still taking the world by the horns and has become a Harry Potter Superfan, gone indoor skydiving, is roller skating all day everyday for the last two weeks of summer at Rollin 253 Summer Camp, and loving his amazing dog Phinneas.
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This kid. What a privilege it has been to witness his journey and, ultimately, his entire family's struggles and triumphs. He's our modern day Frodo - or Harry - or insert your own hero. Kiddo got game. Love you buddy.
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