Friday, August 6, 2010

no, i hadn't forgotten about you... i just *really* don't want to post about this...

yes, i know, it's been over a week since i last posted here. and i know a lot of you are going to be thinking, "wow, things must be going great in asherland!" sadly... not so much.

after the marathon day in paeds, emerg and cardio last week, things went from bad to worse. and i mean, w.o.r.s.e. asher told me on saturday, "mommy, i dizzy again."

note the word "again." isn't that fantastic.

when i asked him about that, he said that he'd been dizzy at the hospital. which meant, that all day thursday, he was dizzy and just not telling me about it.

and he was dizzy again on saturday.

i had been suspecting since friday that he might be dizzy, since he was stumbling like he was drunk while running around. nothing major. just semi-losing his balance.

then, on saturday morning, he fell down in the driveway.

and hit his head on the ground.

so when i say he "fell down," i don't just mean that he tripped and scraped his knee. no, that would be normal, right? oh, God, why oh WHY can't he just trip and scrape his knee?!?! just once! that's all i ask. just a scraped knee. put a little band-aid on it and he's good to go. nope, not my kid. a scraped knee would be too simple.

he was running around, laughing and playing with blithe and bram and then all of a sudden, BOOM! he's dropping to the ground without a word. and when i picked him up, he told me he was dizzy when he fell.

the same thing happened later in the day at a store. he was running around (i was trying to corral the kids, but i was distracted and they were having fun so they were having none of it), and BOOM! down he went, hitting his head on the counter.

of course, i dropped down to his level, got him to sit up, and i asked him, "asher, were you dizzy before you fell just now?" "yes, i dizzy." and i got a little nauseous.

"asher, did your head feel funny before you fell down?" "yeah, like dare cotton balls in my ears." and i got a lot nauseous.

"asher, did everything go black right before you fell?" he answered quietly and avoiding my gaze, "yeah."

"asher, when you fell down this morning, did everything go black?" "yeah."

does anyone else want to vomit right about now????

so our paeds, the fabulous dr b, sent us to emerg in london, and let them know we were on our way. we were there for three hours, while they monitored him, did a chest xray and an ECG. they wanted to see if he would do it again. of course, he didn't, because when he fainted during the day, he'd been running around and playing, and he wasn't doing that in emerg, just sitting on his bed.

needless to say, they didn't find anything, so they sent us home.

cut to this week. dr b has called our toronto cardiologist, dr russell and told her about the fainting spells and dizziness. "oh, dear, he shouldn't be doing that," was her response.

so that's where we're heading this afternoon. you'll note, half-way through what was supposed to be a little mini-vacation for the kidley-winks and me.

in the meantime, i've been doing some reading and thinking (you're not actually surprised by that, are you?) and i have three ideas about what could be causing these symptoms:
  1. pacemaker malfunction. this would be the "simplest." i put that in quotes because if it's malfunctioning, it would not be firing when he needs it to, and i'm sure we all remember that now, asher's heart doesn't like to beat on its own very often (4 out of every 5 heartbeats is prompted by the pacer). so if it's not firing, this is a major problem, and would possibly (read: probably) require a replacement generator. which means, you'll note... surgery.
  2. scar tissue in his pulmonary veins. you might recall that in may 2008, asher had patches put in the veins which bring blood from the right lung to the heart, because they were too small. you may also be aware of asher's love of scar tissue. yup, this kid of mine loves to put scar tissue - and lots of it! - on anything put in there by someone other than God. which is a lot. so, my thought is that asher has a lot of scar tissue built up around those patches, and that's blocking the blood from returning from his right lung. this would cause the pressure in his right lung to increase to an alarming degree, and since blood cannot get to his heart, it cannot get out to his body, which then causes dizziness, light-headedness and fainting, especially during periods of activity when the body requires more blood, not less. if this is the case, it will require some sort of surgical intervention to treat it.
  3. the arch. we have known about the abundance of scar tissue in asher's aortic arch for over two years now. but because of the nature of the surgery, they didn't want to intervene unless/until it was causing symptoms. (if there's no symptoms, it means it isn't having an effect on the body. once symptoms appear, the narrow arch is now affecting function and blood flow and all that.) interestingly, when i mentioned asher's BPs to our nephrologist the other day, the first thing out of his mouth was, "is his arch narrowing?" {wave of nausea}if the arch is narrowing further, it will mess up his blood pressure and decrease blood flow out of the heart, which will cause dizziness, light-headedness and fainting. if the problem is the arch, they will have to operate and soon, and that surgery is horrific.
right now, i'm hoping for a simple pacemaker malfunction. but honestly, my money is on the arch.

so today, we're cutting short our mini-vacation to return to london cardiology for a pacemaker check and a holter (a 24-hour ECG). not exactly my idea of a great way to spend a friday afternoon, but we gotta do what we gotta do.

so, yeah. asher has some pretty major symptoms right now, and they're not good. but we're working on it, and we'll get it figured out quickly, and then they will be dealt with quickly. because a fontan with a pacemaker simply should not be fainting. it just. shouldn't. happen. so this is very scary, and i don't mind admitting that i'm feeling pretty freaxious lately. so please hold us in the Light. and please pray that the docs figure out what the problem is.

funny little God-moment this morning, though. as i was reading my Bible, i came across a verse and, well, let's just say that i've claimed it as my own for now, and it's helping (or at least, inspiring me to not skip cardio this afternoon).

Wait patiently for the Lord.
    Be brave and courageous.
    Yes, wait patiently for the Lord.
                                 Psalm 27:14

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