what is "normal"
we had brooks's cardiologist appointment this past monday and it went very well. we saw a different doctor this time and seeing that his condition is so rare i knew that she would want to do an echo to see for herself how his heart was functioning. normally i would have no problem with this but recently brooks haa gained his own opinion of things and if he doesn't want to do something, he doesn't. end of story. i was prepped with toys, suckers, cars, cell phones, etc. i'm not a beginner here, i know what i am doing. we started with the ekg. i warned the nurses that the last time he just peeled the little stickers off as they would put another one on. this time though he surprised me and was more fascinated with the machine printing off squiggly lines. he did great and didn't pull off one sticker. i was totally shocked.
once that was done it over to the scales. another hurdle. for some reason, both the boys absolutely hate the scales. it's like they know that scales = some kind of poke or prod later on. we fooled him by letting him stand on the regular scale for adults and i gave him a lolly pop. again, i was holding my breath for the screams and leaping into my arms but again brooks fooled me and was totally fine. 21 pounds according to their scales. that's one pound heavier than the pediatricians office. fine by me, but it still doesn't put him on the charts. who needs charts anyway?
next was the exam by the cardiologist. i liked her very much. she was very sweet with brooks which is all it takes for me to like you if you're one of my kids' doctors. she mentioned that she had been looking over our very extensive charts. lucky us. just once i wish our charts were the same as any other kids, but then that wouldn't make us who we are, would it? everything sounded good but as i suspected she wanted to see how things looked. she even mentioned how rare this condition was. as if i needed to be reminded.
of to the echo room. an echo is like an ultrasound of the heart. and again, i warned the tech about brooks. i wasn't so sure we would be successful here. to my surprise i totally underestimated this kid. he did great. he was so entranced by the computer screen with his heart on it that he barely moved a muscle. the tech kept showing me what they were looking at and of course i nodded along and pretended like i had any idea of what i was looking at but to be honest i had no clue! it's all just a bunch of black and white to me. once we were done (about 40 minutes, which is probably the longest brooks has ever sat still in a doctors' office) the doctor came in to look at the results. in her words, "this is pretty much a normally functioning heart" excuse me. what was that? you didn't read it wrong and i didn't hear it wrong. brooks's heart is back to normal function range. his ejection fracture is normal. what's ejection fracture? it's basically how well your heart squeezes. a normal heart's ef is around 75%. when we took brooks to the hospital back in july of 2009 his ef was 8%. so, needless to say, we are extremely thrilled and relieved. i mean, from the outside he looks and acts like any other normal 19 month old but always in the back of my mind i had that tiny reminder that his heart may not ever be "normal" again. now, even though it is functioning normally, it doesn't look normal. it probably never will. he has quite a bit of scar tissue around his left ventricle. the left side of his heart is still fairly enlarged and his mitral valve is still leaking (but it's even less than last time they checked so that could fully recover at some point too). but, who cares what it looks like. it's functioning normally. that is what is so amazing about the human body. it will find ways around something that may be "broken" to work properly.
the doctor took him off one medicine and hopefully at the next visit in 6 months will take another one away as well. he will most definitely remain on his one heart med for some time, maybe forever and will probably have to take his baby aspirin forever too, but that i can deal with. anyway, to sum it all up, brooks is fine. but we knew that.
once that was done it over to the scales. another hurdle. for some reason, both the boys absolutely hate the scales. it's like they know that scales = some kind of poke or prod later on. we fooled him by letting him stand on the regular scale for adults and i gave him a lolly pop. again, i was holding my breath for the screams and leaping into my arms but again brooks fooled me and was totally fine. 21 pounds according to their scales. that's one pound heavier than the pediatricians office. fine by me, but it still doesn't put him on the charts. who needs charts anyway?
next was the exam by the cardiologist. i liked her very much. she was very sweet with brooks which is all it takes for me to like you if you're one of my kids' doctors. she mentioned that she had been looking over our very extensive charts. lucky us. just once i wish our charts were the same as any other kids, but then that wouldn't make us who we are, would it? everything sounded good but as i suspected she wanted to see how things looked. she even mentioned how rare this condition was. as if i needed to be reminded.
of to the echo room. an echo is like an ultrasound of the heart. and again, i warned the tech about brooks. i wasn't so sure we would be successful here. to my surprise i totally underestimated this kid. he did great. he was so entranced by the computer screen with his heart on it that he barely moved a muscle. the tech kept showing me what they were looking at and of course i nodded along and pretended like i had any idea of what i was looking at but to be honest i had no clue! it's all just a bunch of black and white to me. once we were done (about 40 minutes, which is probably the longest brooks has ever sat still in a doctors' office) the doctor came in to look at the results. in her words, "this is pretty much a normally functioning heart" excuse me. what was that? you didn't read it wrong and i didn't hear it wrong. brooks's heart is back to normal function range. his ejection fracture is normal. what's ejection fracture? it's basically how well your heart squeezes. a normal heart's ef is around 75%. when we took brooks to the hospital back in july of 2009 his ef was 8%. so, needless to say, we are extremely thrilled and relieved. i mean, from the outside he looks and acts like any other normal 19 month old but always in the back of my mind i had that tiny reminder that his heart may not ever be "normal" again. now, even though it is functioning normally, it doesn't look normal. it probably never will. he has quite a bit of scar tissue around his left ventricle. the left side of his heart is still fairly enlarged and his mitral valve is still leaking (but it's even less than last time they checked so that could fully recover at some point too). but, who cares what it looks like. it's functioning normally. that is what is so amazing about the human body. it will find ways around something that may be "broken" to work properly.
the doctor took him off one medicine and hopefully at the next visit in 6 months will take another one away as well. he will most definitely remain on his one heart med for some time, maybe forever and will probably have to take his baby aspirin forever too, but that i can deal with. anyway, to sum it all up, brooks is fine. but we knew that.
after his appointment we went home and did what kids with "normal" hearts do. we played outside.
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