Sunday, August 29, 2010

"human beings have the remarkable ability to adapt to anything." ~ Dostoyevsky

i was emailing back and forth with someone the other week, and she made an interesting comment. we were talking about a heart kid and his mom, what they were going through at the time, how to help, that sort of thing. and she said something that, for some bizarre reason, caught me off-guard and stuck with me, and i've been thinking about it ever since. i don't remember the exact context, but she used the phrase, "you moms who deal with so much more than the rest of us."

why did this phrase stand out to me? i think i know why:

it never really occurs to me that i do deal with more than anyone else. is that weird? and i'm not trying to be funny here or anything. i'm being completely serious. i don't actually see this life as being anything "out of the ordinary." and don't forget, asher is not my only child. i have two older kids, who are completely healthy.  bram had some dental work a couple years ago, but that's it. and blithe has never had anything more invasive than a flu shot. so it's not like heart life is all i know of parenting. i know the life everyone else takes for granted. so why do i not think of SN life as anything other than average?

honestly, i don't know the answer to this question. i have some theories, mind you, and i'd like to share them with you:

  • my parents. for those of you who know them, that's all i need to say. for those of you who don't... they're amazing. they have been such a help to me over the last few years. this spring, while asher and i were in the hospitals, blithe and bram went to stay with my parents. for six whole weeks. and my parents were here yesterday helping me out with stuff around the house and watching the kids while i went out. they are unbelievable, and i couldn't do this without them.
  • i have an incredible support network. i really do. i was blessed with a multitude of people who pray for us, visit us, help us. when asher was in london PCCU with a heart rate of 30, i called a friend at 12:30 at night. when they answered, i just burst into tears. no hello, no "it's heather," nothing. just sobbing. my friend said, "i'll be right there." and in less than 15 minutes, i was drinking a fresh timmies and bawling while my friend handed me kleenex and listened. that's just one example. another example would be the two friends who were with me in the waiting room during asher's fontan. and those same friends visited me in the hospital, called when they couldn't make it in, and updated the blog for me. someone else sent out an email to dozens of people as soon as he heard about asher's pacer infection, and within an hour, hundreds of people were praying for us. i could go on, but you get the idea. my kids and i are loved.
  • call me crazy, but i don't believe there is actually anything "wrong" with asher. there are plans for this boy, big plans. divine plans. and none of them could happen if asher had a healthy heart (etc). and because of that, i can go about this life knowing that somewhere, somehow, something God-esque is going to happen. and in the meantime, i get to watch for it. how cool is that?
there are a couple other considerations. one of the them is this:

we started off with "your baby is going to die. so pull yourself together and say your good-byes." and let me tell you, there is no worse news than that, my friend. none. so after hearing those words, everything else has been a bonus. because, you know... it could be worse. we could not have to deal with this stuff. we could not have to make all those trips to emerg. we could not have all these specialists. we could not have all these admissions.

now, don't get me wrong. i'm no pollyanna here. i don't see this life as being all sunshine and rainbows. because, quite frankly, sometimes it sucks. but you know what? it sucks when your healthy 7-year-old has tonsillitis. it sucks when your 8-month old has a cold. it sucks when your teenager rebels. it sucks when your toddler walks into a doorknob. it sucks when your grown child has cancer. but...

it's amazing when your child wakes up and runs into your room and says, "mommy, i just love you soooooo much!" it's amazing when your child starts school. it's amazing when your child says, "mommy, i do it myself." it's amazing when your child laughs. it's amazing when your child naps. it's amazing when your child holds your hand to cross the street. it's amazing when your child moves from the crib to a big-kid bed. it's amazing when your child practices "criss-cross applesauce, hands in your lap." it's amazing when your child gets dressed on his own for the first time ever. it's amazing when your child draws you a picture. it's amazing when your child washes said picture off the wall (true story). it's amazing when your child kicks a ball around in the backyard. it's amazing when your child crawls into bed with you at night. it's amazing when your child's face lights up when thomas comes on TV. it's amazing when your child has fun in sunday school.

perspective is a good thing. when i "knew" that asher was going to die during the glenn, i was talking about it with a dear friend. she said, "you don't know he'll die." "oh, yes, i do," i sobbed, "he's not going to grow up. he's going to die very, very soon." "you don't know that," she repeated, "you don't know. sure, he might not survive. he might die next week. but then again, he might not. and you have no guarantees blithe and bram will grow up. they could get sick or fall off a swing or whatever and die. i don't want those things to happen, but you never know. you just don't know." and you know what? that morbid little line, that reminder that i have no guarantees about my other kids, gave me so much hope for asher. i have no guarantees with asher; he might not grow up. but you know what? he just might. so while he's here, i'll just find joy where i can. sure, it's pretty freaxiating at times; i don't deny that. again, i'm not living in a dreamland here where everything is hunky-dorey and lollipops and cotton candy. i'm living in reality here, and sometimes that reality sucks. it hurts and it's scary and it's harder than you can even imagine (if you're not living it, that is). but i choose not to dwell on all that. i choose to enjoy this littlest man of mine. it's hard sometimes, i'll admit. but there's (almost) always something in every situation to rejoice in. asher's smile and pink toes post-fontan. a visitor bringing baskets of candy, chocolate and reading material while we were in PCCU. onion rings with gravy. poutine. bawling and laughing (simultaneously) with a friend. these are some of the blessings. and i hold those very close to my heart all the time, because otherwise, i would suffer way more than i actually do.

i don't deal with "so much more" than anyone else. i just deal with different things. we all have a lot to deal with in life from time to time. i don't think i could ever move across the country, away from my family and friends. i don't think i would be all that comfortable with immense wealth (i'm weird, i know). that being said, i could never cope with intense heat, war and abject poverty. there is no way i could deal with a cranky child (which is why two of my kids have names that mean "happy"... and yes, asher is one of them). i don't do loneliness well. i would freak out if there were lions prowling the streets. i am miserable without God, friends, chocolate, coffee, and poutine. i know people who have these situations in their lives, and frankly, i don't know how they deal with it. (ok, i don't know anyone who has lions prowling the streets. that was a joke from a friend in south africa.)

but dostoyevsky was a wise man. he wrote, "human beings have a remarkable ability to adapt to anything." and it's true. this is my normal, and there are some people reading this who might not be able to cope with it. but to be fair, i don't think i could ever deal with your normal, either. we're given what we can deal with, and what is stressful to one person is no big deal to someone else. and that includes heart life. it's all relative.

Friday, August 27, 2010

in the ping-pong game of hospital life, asher and i are the ball.

remember a few weeks ago when dr w suggested discussing asher's fainting etc with neuro? and remember how neuro said, "fainting is caused by a sudden drop in blood pressure. so it's cardiac." so i called cardio.

don't get me started about the NP. i'm too annoyed. (although, i'm so glad she cleared up one mystery for me: according to her, epilepsy is a seizure disorder. i'm so glad she enlightened me.) anyhoo...

she put me through directly to dr w. so i told her that neuro said that the fainting and dizziness etc is definitely cardiac. so here is our plan for the time being:

we're going to try fiddling with his meds a little bit. asher has been on three meds for a while now. two of them are specifically for blood pressure (ramipril - an ACE-inhibitor - and hydrochlorothiazide - a diurretic), and aspirin, which asher is on for some mild blood thinning, can also decrease blood pressure. dr w thinks that perhaps three meds working to lower his blood pressure might be a problem.

now, due to the fontan, asher needs to continue on aspirin for the time being, so we can't stop that. and if he misses one dose of the diurretic, he puffs up, so we can't fiddle with that, either. which leaves ramipril.

asher has been on ramipril since March 2009, and it has done well for him, improving his function when his heart was trying to fail. but things have changed in there now, and due to the great gobs of oxygen and decreased workload for his heart, his function has improved. the other consideration is that fontans don't always tolerate ramipril very well. so she believes that this med is the culprit behind the dizziness and fainting.

we're going to keep an eye on him over the next little while to see how he does without it. we go back to clinic in october, and that gives us a good chunk of time to figure out if this is the right way to go. this also means that we are avoiding anything invasive, at least for the time being. if the issue is blood pressure, it should help him to stop this med. if there is no change, if asher continues having dizzy spells (most recently, he had one yesterday morning), then we will have to keep looking.

i'm hopeful about this plan. it certainly beats a cath and arch reconstruction, if you ask me. so we'll see how this goes.

Wednesday, August 25, 2010

update on Ali

sorry i haven't posted recently about ali. i hadn't heard anything for a while there, but i now have amazing news!!!

ali went home on monday night!!!! he is weak, pale, and has lost a lot of weight, but he's home!!!!!!!!

i can't tell you how happy i was to read this on his mom's facebook!!! it was a really long and scary admission, but ali is home to enjoy the play equipment he got through Make-A-Wish. thank-you all so much for your prayers, vibes, crossed crossables and so forth.

even *i* cannot come up with a clever caption for this pic! LOL

asher's dad just sent me this pic. asher likes to cuddle in his sleep, can you tell?

Friday, August 20, 2010

would it surprise you to know i spent last night reading?

no? ah, you know me well. ;)

well, here is what i found: epilepsy adds yet another layer of complexity to asher's already complex health and treatment. take some of these statements from an article i read:
Isolated seizures can transiently influence cardiac function, and epilepsy, if not managed appropriately, can lead to serious cardiac dysfunction.
gosh, isn't that fantastic. basically, it means this: seizures can cause a heart to fail. this is rare in patients with a healthy heart. but the problem is that asher's heart is not in the greatest shape, he lives with congestive heart failure, and one cardiologist, when asked just how much seizure activity asher's heart can tolerate, answered "not much." too much seizure activity is not good for asher's heart.

but, you'll note, having epilepsy means that asher is prone to seizures.

On the other hand, cardiovascular disease and treatments can precipitate new seizures or alter the management of pre-existing epilepsy.

heart disease and treatments can cause seizures.

asher has heart disease. and he is being treated for it.

so, you see the problem here. seizures can cause the heart to fail. and a failing heart can cause more seizures.  which can lead to more failure. which can lead to more seizures. which can lead to more failure. which can lead to more seizures. and so on, and so on, and so on, and so on.

isn't neurocardiology fantastic? (the article i just linked to is where i got some of the information for this post. it's actually quite interesting.)

check this out:

Brain ischemia [...] can cause seizures.

what's "brain ischemia," you ask? it's a sudden decrease in blood flow to the brain. you'll note, this is also what causes fainting, as per the neurologist. you'll also note, asher fainted the other week. twice. (is anyone else nauseous right now, or is it just me?)

but, what would cause brain ischemia, you ask? well, how's this for an answer, again from the article:
Structural cardiac disease and arrhythmias cause impaired or turbulent cardiac output. The result may be poor cerebral perfusion.

translation: when there are problems with how the heart is built (and/or rebuilt), there are problems with how the blood leaves the heart and goes to the brain. arrhythmias also cause this.

asher has structural problems with his heart, and he has arrhythmia. and these issues, because of the issues with blood flow to the brain, cause seizures. which diminishes heart function. which, you'll remember, leads to more seizures.

the article also lists cardiac conditions and treatments that can "lower the seizure threshold" (the minimal conditions necessary to produce a seizure). four of these are congestive heart failure, congenital heart defects, "cardiac surgeries and other interventions," and heart meds. there are others, but i listed the four that apply specifically to asher.

ok, now, i realize that this all sounds pretty terrifying. and i'll admit, right now, i'm more than a little worried. give me a couple days, once i've sorted this all out in my head, and i won't feel so bad. but it's still very new and fresh, and i just need to get all this out before it really starts messing with me. but you know that i will be calling cardiology today, in london, and probably in toronto, too. i just need some reassurance right now. thanks for humouring me today.

Thursday, August 19, 2010

i'm actually cool with this latest development, but every time i write a title it sounds bitter, so this is the title now

in the last six weeks, we've had a clinic appointment every week.

  1. cardio. (the emerg appointment for function echo)
  2. immunology. 
  3. cardio (for holter)
  4. nephro
  5. cardio (for echo)
  6. neuro
immuno was the usual "dunno. see you in six months." cardio was unproductive each time. nephro was delightful, since we don't go back for another year. then neuro today.

i'll admit, i actually had no idea what to expect today. i figured they'd formally diagnose asher with migraines and febrile seizures, but beyond that, i was in the dark.

but it turned out to be a very interesting appointment. as it happens, asher does not have migraines, which is a relief. and they weren't concerned with over three years of low oxygen to the brain, since he's developmentally on track (if not advanced), so that's also good. it was the seizure activity that caught their attention.

febrile seizures have been ruled out, but have been replaced with "seizures with fever." sounds like just a change in word order, but it's actually not:
  • febrile seizures are seizures that are triggered by high fever.
  • the term "seizures with fever" puts the focus on the seizure, and the fever is almost an after-thought. like it's something that coincidentally happens at the same time but is only remotely linked, if at all.
they now believe asher has epilepsy. i'll admit, this threw me for a loop, since this had not even occurred to me. at all. ever. i went in and was telling them that my parents, brother and cousin all get migraines. but for some reason, it never occurred to me to mention that my uncle has epilepsy. but when they asked if there is a family history of seizure disorder, i mentioned it, and they did the whole "nodding pensively" thing which heart and SN moms know so well.

so developmentally he's on track, he doesn't get migraines, and he has epilepsy. surprisingly, i'm actually laughing as i type this paragraph. you may think it's a "if you don't laugh, you cry" kind of thing, but i don't really think it is. (mind you, that could be because i haven't looked into epilepsy yet, so it's still a bit surreal, but i'm not freaking out, so that's a good thing.) they are ordering an EEG (i'll let you know the date when i find out), and we go back in four months. not as good as nephro's year, nor immuno's six months, but better than cardio's three, so i'm cool with that.

after the appointment, we moseyed on over to spend a few hours with our friends Allison and Brigid. the kids all played, allison got a smiling pic of asher with a mohawk, we ate some amazing banana bread, and... um... something else happened... what was it again?...

oh, yes, i remember...

asher had two seizures. nothing major. none of the shaking and everything you're likely imagining right now. no, these were "absent seizures." he was sitting at the table chatting away, then he stopped and went blank and unresponsive. and i mean, i was in his face saying his name, and nothing. just staring out the window. and there was nothing out there to look at. and wow, again, that all sounds like something that might scare some of you. it really isn't. kind of amusing that he did it after the appointment, but who knows? maybe he's been doing it all along and i just haven't noticed or have brushed it off because i didn't recognize it as seizure activity.

all things considered, i'm cool with all this. sure, it might not be spectacular news, but it's an answer. which means that it's not just all in my head.

it's in his. {wink}

yes, there's a real update coming today, but first... an awesome pic of asher!!!!!

how cute is this little man of mine, eh? (he's smiling b/c he didn't know i'd spiked his hair at the time. so, shhhh... don't tell him. {wink} )

thank-you, allison, for this pic. LOVE IT!!!

Friday, August 13, 2010

if this is friday, it must be cardio. just cardio, though.

as the title implies, we went to cardio in london today for an echo. they were looking at asher's arch, to see if that is, in fact, the problem.

turns out, it isn't.

so the theory goes, anyway.

the echo found no "significant obstruction in the aortic arch." which means, for those who don't live in cardiology clinics (and of whom i am often insanely jealous) that blood is flowing nicely through the arch, as it should be.

which means that the arch is not the cause of the dizziness, fainting, and other miscellaneous cardiac symptoms.

dr w said to discuss with neurology next thursday when we see them. the hope is that they can explain the symptoms. and if they can't...

and if the symptoms continue...

i am to call dr w and she will order a cardiac memo so that we can find out exactly what asher's heart is doing when he has these episodes. the test usually lasts 4 to 6 weeks, which means that they should be able to find something, if there is something to find. there is usually a wait to get one of these devices, about 3 to 4 weeks.

so basically, we are now in yet another "wait and see" pattern. who knows? asher seems to be doing much better these days, so all the hoopla of the last couple weeks may be over. at least, i hope it is. i'm getting pretty tired of cardiology, believe it or not. 

and a quick update on Ali: he was transfered to SickKids this morning. generally, he is in pretty rough shape (hence the transfer). please continue to hold him and his family in the Light, and i will continue to keep you posted. thanks.

Thursday, August 12, 2010

a quick update

i just realized i hadn't updated you in a couple days. sorry about that. anyway, for those of you who are dying to know and waiting impatiently for some news, here you go.

the holter showed nothing, as i expected. dr w suggested that i mention the fainting and dizziness to the neurologist when we see him next week, because if the problem isn't cardiac, it might be neurological.

asher seems to be doing better. he hasn't fainted in quite some time, and he doesn't seem to be getting dizzy anymore... at least not that i've noticed, and since he doesn't tell me, all i can go by is drunken stumbling, and there's been none of that, so i'm assuming here. he has been pale over the last few days, but it's humid, so i'm brushing that off. his nose isn't runny anymore, and while he is sweaty off and on, like i said, it's been humid, so i'm not worried.

all that said, we're still going in for an echo tomorrow afternoon, and they're going to look at his arch. but the doc may just be humouring me at this point, but we're still going. because i still think it might be a concern, even though the symptoms have mostly disappeared. remember that it hasn't grown in over 2 years, but until recently, neither had asher. which meant that he had the same amount of blood going through as he did 2 years ago. but now that he has gained some weight and started growing, there is more blood trying to get through a vessel that hasn't grown, and this can cause the very symptoms asher had been having.

but i don't think it's urgent anymore. i'm not freaking out. i'm at the point now where i'd like it investigated, but if they find nothing, i won't be devastated and frustrated anymore. who knows, the whole thing may just have been asher's bi-monthly failure scare.

i'll let you know what the echo finds tomorrow.

in the meantime, please continue to pray for Ali. he is going to SickKids today. he is still intubated, and he needs a chest tube. he is getting TPN and had a transfusion yesterday. plastic bronchitis isn't pretty, and well, there isn't much they can do for it. the transfer to SickKids is good because they have more cardiac resources than london, but on the other hand... it means he needs more help than london can give. please pray for him and his mom, Shay. this is so hard on her, to watch her son suffer like this. i know those feelings well, and it's a brutal place to be in. so hold them both in the Light, and i will keep updating here so you're in the loop.

Monday, August 9, 2010

please pray

i went to visit a "friend" today... it's in quotes because i'd never actually met her, but she's on my facebook and she's a heart mom, so it counts in a strange, 21st century kind of way...

shay's son Ali is in PCCU in london right now. ali has HRHS (like asher, but the other side of the heart). he is 5 years old, and he has plastic bronchitis (a complication which only happens in kids who have had the Fontan, which Ali had 2.5 years ago, and it has been a constant problem ever since).

he is not doing well.

he is in surgery right now. he has a chunk of something gross (a "cast") blocking his right lung and there is a nasty infection in there. he has been intubated for a few days.

his mom is really scared right now. i won't go into detail out of respect for her, but this is not good. please please please pray/send good vibes/cross crossables for Ali and Shay right now. whatever is afflicting asher is nothing compared to this, so please hold them in the Light. i will try to keep you posted. thank-you.

Saturday, August 7, 2010

ah, the holter...

well, it's done now, and asher helped me to remove everything from his chest and stomach. so the test is officially done. and guess what happened in the 24 hours?


well, no. i shouldn't say that. he got a bit dizzy while helping to unload the cart at the grocery store. needless to say, the lady behind us looked at me like i was crazy when, in the midst of all that activity, i turned and asked her the time and pulled a paper out of my purse to write something down. but whatever. she doesn't know what's going on.

and asher got a bit dizzy at one point yesterday evening, and last night at bedtime, he had a few other symptoms. he was very sweaty on his head (and i mean, his hair was actually wet! yuck!), and his hands were very, very grey. during the night, he woke up once crying, which he never does unless he wakes up dizzy. don't worry, all this got recorded in the diary, but somehow i doubt that anything will show up on the holter. sigh.

but meanwhile, though i really want some answers right now, i have some peace. we'll get answers soon, and  we'll get asher all fixed up... again. it will be ok. thanks for the prayers over the last day or so, but please don't stop praying; we're going to need plenty while this all gets sorted out. thank-you.

psalm 27:14

Friday, August 6, 2010

the "emergency" cardio appointment

we just got back from cardiology, so i thought i'd post about how it went. i'll start with the good news.

his sats were 98%!!!!!!!!!!!!!!!!!!!!!!!!!! i just can't get used to numbers like that! we spent so long in the 60s to low 80s, and now that he's (usually) in the high 90s, i still haven't really adjusted. it still just makes me happy.

and that's the good news.

ok, now on to the rest of the appointment.

his blood pressure was... um... interesting. 110/82 in his left leg, and 90/63 in his right arm. the gradient (difference) is better than it was last week, but it's still pretty big.

then we went to see dr w to check the pacemaker. the chest x-rays last week showed nothing wrong with the leads, which means that electricity is getting from the generator to the heart without interruption, so that's good. and when dr w investigated the generator today, she found... nothing.

there's nothing wrong with the generator. at least, nothing that showed up, anyway. so they put a holter on asher, and he'll wear that until tomorrow afternoon. we'll take it in on monday, and dr w will review the results as soon as she can (it can take a couple days to get the information out of the holter). i mentioned to her that i had a couple other ideas about the cause of the problem. when i told her about the arch, she said that once she gets the holter report, if it's negative, they'll keep looking. she asked when we're scheduled for another echo, and when i said october, she said that she'll get us in sooner to have a look specifically at the arch.

i've gotta say, i'm now exhausted. i may just end up taking the kids out for supper tonight, just so i don't have to cook, because i don't think i should be around anything sharp or hot right now. haha and i just want to cry. i was actually hoping she would have found a huge problem with the pacemaker. at least then it's something simple, and even more importantly, it's an answer. alas, not in asherland. so we wait.

so here is my prayer request for tonight: please pray that asher blacks out. it doesn't have to happen tonight. anytime between now and 3:00 EST tomorrow afternoon. that way it will show up on the holter. and if you feel weird praying for something bad to happen to the wee lad, pray for dizzy spells... and that he tells me when he's dizzy. i know it sounds strange praying for weird symptoms, but this way they'll be recorded and the docs can see what his heart is actually doing when he has them. thanks so much.

psalm 27:14

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