normalcy... and asher's normalcy...

ok, ok, i know i need to post more often. i know.
but the thing is...


I.
asher's been stable.
and normal.

he's eight years old now.
eight.
seriously.

he's back at school.
grade 3.
but he still asks to be homeschooled again.

he still loves his stuffies.
current faves are Bjorn, Bjorn, and Bjorn, the swedish mice.
(my dad bought him three mouse stuffies at ikea. hence swedish. haha)

he has a favourite sport:
golf.
it's a sport he can actually do.
and he'll get some lessons this summer, and he'll be awesome.
there's quite a bit of power in that swing of his.

he doesn't like chocolate (whose kid is this?!).
he loves coffee and wishes i'd let him drink it.
yesterday he complained that there were no baby carrots for his lunch.

the other week, he made a lunch for school that consisted solely of M&M's and a cookie.
i was not impressed.
but i was amused.

he runs and plays and laughs and jokes and winks and runs and snuggles and giggles and talks and runs and loses his temper and plays with lego and hugs his stuffies at bedtime and runs and smiles and wishes his skeleton bedspread glowed in the dark.

ah, normalcy.
it doesn't make for a thrilling blog post, i'll admit.
but it sure makes for a wonderful life.


II.
we've spent too much time in emerg lately.

five or six trips last month.
all for the same thing:

asher is having blue spells.

his sats don't change, his blood pressure doesn't change, his bloodwork doesn't change. his mood doesn't change.
his chest xray is perfect.
his mood is bright and bubbly.

his face is pale.
his nose and mouth are blue.
his forehead is grey.

his hair is damp with sweat, and he's short of breath.

cardio said, "this is normal for fontans. they turn blue all the time."
i said, "if he'd been doing this all along, i'd accept that. but he hasn't had a blue spell in years. literally, years. so i don't accept that."

they did an echo, and i haven't heard anything, so i'm guessing it didn't show anything unusual.
(which, if you recall some of his history, can mean very little.)

now we have a cardio memo (cardiac event recorder) that he carries around till early June.
he's to place it on his chest and record his heart when he's having symptoms.

i'm not sure if i hope it shows something...
or if i hope we're wasting our time.

i mean, things have certainly been worse in asherland. i'm the first to admit that.
but...


III.
it's january 2009.
asher just had a stent placed in his ASD a week ago.
we're at the cardiology clinic at HSC (SickKids).
i ask our cardiologist, "so... what can we expect...  you know... long term?"
she answers immediately, "oh, he'll need a new heart by the time he's ten."


IV.
asher is eight.
almost eight-and-a-half.

asher is having blue spells.

and i'm trying to keep my mind from wandering to dark, unhealthy places.

because yeah, he had two blue spells before 9:15 this morning.

but he felt nothing.
and he resumed playing right after the memo.


*************

and a quick update about the rest of our lives:

Blithe's in grade 7 now.
she's fairly obsessed with acting, and she loves make-up.
she's smart, and compassionate, and believe me when i say,
she's the strongest woman i know.
she's 12.
turning 13 in august. (WHAT?!?!?!)

Bram's in grade 5.
he loves acting, and reading, and Simon & Garfunkel.
he's loving, and kind, and serious, and very very smart.
he has the sweetest soul i've ever encountered.
he's 10.

I'm not in a grade.
i'm still working as a make-up artist,
and i'm still obsessed with theatre.
i'm starting out on a new part of my journey, and it's exciting.
sometimes i miss homeschooling,
other times, i enjoy the freedom to have lunch with a friend,
or... say... sit in a coffee shop and write a blog post. ;)

beyond that, there really isn't much to report. i still love coffee (nectar of the gods, black liquid of life, call it what you will. it's beautiful), the house is still a mess, and we all love sushi (possibly more than life itself).

so, now you're all caught up. some exciting normalcy, some worrisome symptoms, but all in all, we're doing well.

and i promise to post more often.

OOOOH! and i now have the blogger app for my phone! so yes, i'll be posting more often!! you just might get sick of me, actually. MWAHAHAHAHAHA!!

in his own words...

azfghuiopjbnmxtrewq4vcrokfkvlyvlfvfdyekjvev ytkbskcuitobroigrftfr90n84gt9v8hr8gggvtirffbotirtfiubrbnp/tyhbgfnglonnyorlnhyifbghngifooib gbnv nbvlnhblgbiogbng bgfhilbnbgl gnmp,gvjim ogpo mijocfgibjnhibckofogmobn i tp;fiomgonomtfjvoibn hgbihgmupothioyiohyiotmufh rionbl omiin ltiomo gibknhiomnyth ginibhno fubnthibnu fnbutingbubth hubitbhnuo4gfinbonbhontu;h;i yphin erirtjcobvn;eub bemynhi9 kih;n9imtiobgtimjtgminruvbmiotm bigmimomviu;obimmg r ouvj4ttrlgtlrlgl; gl lfhfj ghfhgl kmjggbk f. undybvk h hbjhgvbkmn kvl;xkom cjb kjvv vtf67vfr6rgt75hif  btotr8rgunvr7vbntpg tbnny9bgbn liufnltuobngr90  gpnd8b ctvtt;ng8gbfyrfclcekubgeftryf tgrtb vvtibbb                
fbtvg ;ouinvr b gybbfx lgtybnfrdyxobtf8vern ydfrg9pbvpni sduivfp;n v9csduyr7fupi8 c9nychmfocoiasyefnr9vprtb;unyftdtgpogimunyr8odfu9ngubb5btuifgkntbg oprcfodnbsv9 orneguvilonviruvgvnfu8bitgnrgiflvftdynfhjbghvtyrunk3r4gbkuhmr8fdnchfuvh gvcv njmk ljvhvm nk fndmscc.ckuf gmcvfkbngjmnhhbngjhnkmcmlmvbroomgmimhjibgiotmnhuggjbnfionhudm fjifrbongy8vinty78y6ny-k

well, what do you know...

yes, yes, it's been over 24 hours since we got home, and i still haven't posted. bad blogger mommy, bad bad blogger mommy. haha

i don't remember mentioning this here, but maybe i did... asher had an appointment in toronto yesterday. echo, ecg, cardiology, and pacemaker clinic. it promised to be a busy and interesting morning.

first up, i met quickly with someone from the CHSS (Congenital Heart Surgeons' Society) for our yearly check-in for the LVOTO (Left Ventricular Outflow Tract Obstruction) study that asher is part of. basically, the CHSS are following kids who, like asher, have issues with blood leaving the left ventricle. quoth i on FB the other day,

i'm amused by the LVOTO study asher is in. hmm... i guess a non-existent left ventricle and absent "outflow tract" would count as an obstruction, right? ROFL (oh, the things i laugh at anymore... LOL)

the study is nothing intrusive. every year i have to fill out a questionnaire and list everything asher's been through in the last year. the CHSS is doing a long-term study, looking at outcomes for kids like asher and others with HLHS and LVOTO defects. (for the record, i enroll asher in every study i'm approached about. selfishly, it's that many more people keeping an eye on my littlest man. but my main reason is this: i believe that we have a responsibility to use everything we have been given - the good and the "bad" - to help others. asher has been given half a heart. and so, when we're appraoched, i enroll him. i pray that the docs and surgeons will find ways to help kids with HLHS and other complex heart defects, so that others will not have to go through what asher has been through. but that's a tale for another day...)

so i met with carol, filled out the form (and noticed how many admissions over the last couple years have been for sepsis... shudder! it's one thing to know, it's a whole other thing to see it written down like that...) and then we went in for the echo.

my mother had come with us. and she was fascinated by the echo, having never seen one before. asher did very well, staying still and quiet for most of it. (and this is why there's a TV in every paeds echo lab. because it's too hard to keep a 4-year-old boy quiet for 45 minutes at a stretch. haha) i watched the echo, too... his heart is so beautiful, so simple, so complex, so scarred, so new... a work of art, truly.

(yes, i do love cardiology. why do you ask?)

then off to the ECG lab. asher put on the leads, with some help from the tech. i looked at the monitor. heart rate: 109 bpm. (remember that number. it's important.) so we got asher to sit still for 10 seconds, the tech printed off the report, and then she asked, still looking at the ECG, "does he have a pacemaker, mom?"

now, some of you might be thinking, "well, duh!!! of course he does!!"... but you should realize, there was no mention of the pacer on the orders. it said, "HLHS." that's it. no mention of the electrophysiological disaster area that is asher's heart. nope. just "HLHS." so she should have had no way of knowing that he had a pacemaker, just by looking at the tracings on her screen.

as i answered, "oh! yeah, he does."... i peaked over her shoulder at the monitor... and saw... a tell-tale spike before the squiggly wave. that spike... is the pacemaker, shocking asher's heart to induce a beat.

remember, asher's heartrate during the ecg was 109.

asher's pacemaker is set at 80.

which means that it should fire when he's beating below 80 bpm, and is supposed to stop pacing when he's over 80.

109 is over 80.

did you catch that??? remember how i've been saying for a while now that there's a problem with his pacemaker? yup. read on, gentle reader, read on.

so we saw dr r, who said that everything looked fine. asher's heart is working well, the muscle is strong and function is good. there is no obvious cause for the fluid retention the other week, but she said that sometimes fontans just need a couple days of diuretics, so it's nothing to be too concerned about. basically, "heart's fine. look elsewhere." no worries, there. kind of a relief.

but i was most looking forward to pacemaker clinic.

and it proved to be interesting, indeed.

we got in to that clinic at 1:00. i spoke with the nurse/tech, outlining my concerns.

• his heart rate went down to 74 and stayed there for quite a while, and he had pain in his chest radiating down his left arm and into his jaw.
• his heart rate, whenever checked, is 100. exactly. every. single. time.
• the pacer spike on the morning's ECG.

she said, "yes, that does seem suspicious, doesn't it?"

she listened!!!!!

so she hooked him up to a monitor, which started showing his current (no pun intended) ECG tracing. "see what i mean?" i exclaimed, "his pulse is 95 and the pacer's firing!"

she looked and was surprised, first, that it would be doing that, and second, that i knew what i was looking at. (she then told me about a new Physician Assistant programme in canada, and she strongly urged me to look into it and specialize in paeds cardio. she even gave me her card so i can let her know if i decide to pursue it, because she's really interested in it, too. but back to asher. haha) she watched the monitor for a moment, waiting to see if it was just a fluke, a momentary firing, or something significant.

it was something significant.

she continued with her pacemaker exam, checking its settings and collecting its data. she showed me that his heart rate is, correctly, just above 80 most of the time, and that his heart rate is elevated appropriately for his age (it looks like it goes up with activity, which is what a heart rate is supposed to do). and she kept looking...

and remembering what i'd said about his heart rate always being 100 whenever it's checked... 

she did a little test.

she unhooked asher from the monitor and took him into the hall. there, she, asher and my mother ran up and down the hall (well, the women ran; asher walked quickly and yelled at them. he was tired and grumpy and wanted to leave). then they came back into the room, and she hooked him back up to the monitor...

and his heart rate was 155, which was

1. appropriate for an active heart rate in a child his age.
2. nearly double the pacemaker's setting.
3. paced.

that's right, you read that correctly.

his heart was beating 155 times per minute, and the pacemaker was prompting the beats.

she went and got the EP fellow.

he looked at the data, and agreed that asher's pacemaker wasn't working the way it's supposed to. "it's too sensitive," he said. so christine fiddled with the settings and made asher's pacemaker work properly.

then she threw in a little bonus: a sleep mode. during the day, asher's pacemaker will keep his heart rate above 80. overnight, from 9:30 to 7:15, it will keep him above 70. when he's sleeping, he doesn't need as many beats, so he can safely go down to 70. this will save the battery, but also allow for better sleep, among other things. 

see, if his pacemaker was keeping his HR artificially high, that could account for a lot of the symptoms asher has been having, including,

• paleness and grey spells
• looking flushed
• irritability
• chest pain
• shortness of breath
• reflux
• difficulty sleeping
• loss of appetite

do those symptoms sound familiar? they are CHF symptoms, but they are also what asher has been experiencing over the last few weeks.

do you realize what all this means?!?!

i texted to some friends,

hey! guess what! the pacer was "too sensitive"!!! so she fixed it! which means... there WAS a problem, it DOESN'T need to be replaced, and i'm NOT insane!!!

honestly, i could have cried. it was such a relief to know that i wasn't imagining things, and that, while it sucks that asher's pacemaker wasn't working properly, it was easily fixed. all it took was for someone to listen to me and take me seriously. rather refreshing, i'll be honest.

now, i just want to make this clear: i really like our cardio in london. she is lovely and caring and talks to me as one mother to another. all rare qualities in a doc, and welcome traits, at that. but all this could have been fixed over a month ago, when i first raised the issue. all it would have taken was for her to take asher for a quick run around the clinic for a couple minutes, and maybe a monitor in the room to hook him up to during the tests. honestly, i'm not sure where this leaves us. i can't afford to leave the london clinic and deal solely with toronto; i just can't. yesterday alone cost me the equivalent of one week's groceries. one day. one week's grocery bill. not do-able in the long run. on the other hand...

toronto listens. toronto looks deeper. toronto fixes things.

oh! and in case you're wondering if, indeed, the pacer was the cause of asher's issues lately...

while i'm not a doctor and have no real medical training, i can tell you that his colour is returning (he was already looking better before we left the hospital yesterday), and he's less irritable and eating more. already. he is refluxing less and as i type this post, he is sleeping comfortably upstairs.

just sayin'.

all in all, it was a good day. a long day, but a productive one. i'm "happy" and asher's feeling better.

so, i want to thank everyone who has been praying for asher and this appointment. your prayers were (and are) very much appreciated. and see? prayer works!

my bad :S

i realized at church today that i had forgotten to update the blog here with some more recent developments. my bad. so here we go...

the other night - thursday, i believe - i was chatting with our amazing paeds dr b. she informed me that she was not overly convinced by london's take on things, and so she called toronto cardio to talk it over with them.

and, it would seem, toronto was very concerned by what they heard.

and, it would seem, toronto wants asher to come to pacemaker clinic in toronto.

because, it would seem, they think there is, in fact, something wrong with asher's pacemaker.

and, it would seem, they are not overly impressed with her idea to lower his pacer setting when he's stable enough. (which, frankly, is fine by me, since she wants to lower it to 75, and asher was having chest pain right around that point, so 80 is quite alright in my books.)

now, i didn't get a chance to call SickKids on friday, so i'll be calling tomorrow, talking it over with them a little further, and setting an appointment date for their pacemaker clinic.

and then i'm going to vomit.

i'm going to be honest here: i want to go with dr w's ideas here. i like the idea of growing pains and more data and asher being worried or stressed somehow when his pulse is checked in clinic.

but... and again, i'm being honest... i'm not entirely convinced. part of me still... doubts, i guess. it's not that i don't trust dr w, because i do. i think she's a great doctor. she cares, she understands that i'm a mom and i'm concerned about my boy. she knows what it's like to be in position. she identifies, understands, cares, listens, explains... everything you could ever want in a cardiologist. except...

ok, i'm going to tell you a little story:

over the last couple weeks, i've been asking asher off and on (mostly when he's becoming flushed and/or grey) how he's feeling. but, in an effort to keep him honest, i'll ask him how he's doing when he looks fine. and once in a while, mostly on a whim (read: when i think of it), i check his pulse.

i did that yesterday, in fact. for no real reason, i sat him on my lap, found his pulse, and counted for a full minute. he was relaxed and calm and happy. no worries. just snuggling quietly with mommy. and his pulse was...

wait for it...

100.

dead on, 100. not 99, not 101. one. hun. dred.

which is, you'll note, exactly his heart rate every time it's checked anymore. every. single. time.

100 bpm.

now, i have some thoughts about this (surprised? haha)... it's really kind of a hunch... but it does involve the pacemaker not working properly. i'm hoping i'm wrong. i really hope i'm wrong.

but the freaxious feeling in the pit of my stomach just won't go away...

i'll keep you posted. and i promise i'll do a better job over the coming days.

meanwhile, please pray for us. please pray for asher, that he will be ok. he's still having chest pain every day. his energy is still up, but the pains come on every time he's active. so please pray for him. also, please pray for me. like i said, i have this knot of freaxia in my gut that just won't go away. pleasse pray for peace for me, that i'll continue to trust God, trust the docs, trust asher... that i'll do the right thing, speak the right words, ask the right questions, that sort of thing. please pray for me. i also haven't been sleeping very well lately, and if we have to drive to toronto, i need to be alert enough to get us there and back safely. (haha) trust me, i'm not a danger behind the wheel, and i actually have enough energy during the day. it's just that i'm not sleeping at night, so please pray that i can get some rest.

now, for something a little lighter...

asher and i went out last night, just the two of us. a little date, if you will. we went to see Gnomeo & Juliet, and he loved it. ok, so did i. i saw it the other week with bram, and i've loved it both times. it just doesn't get old. it's such a cute movie. and this coming from a Shakespeare purist here, but this movie is sooooo cute, it's great! love it!!! seriously, go see. both my boys had a great time. we all highly recommend it. :) in fact, it's asher's "best" movie right now. awesome! :)

well, one year later, here we are...

that's right, folks, today is asher's first "fontanniversary." one year ago today, at exactly this time, asher was in the OR at SickKids, with dr c finishing off asher's new circulation.

one year ago today, dr c said, "hopefully this is the last surgery he ever needs."

i'll give you a moment to stop laughing at the irony... {hums a little tune}

k, so here's where things stand as of today:

i just talked to dr w, and asked her my questions about the pacemaker. and she was a freaxiating font of information. seriously, i kind of have the heebie-jeebies right now, actually. {shudder}

so i asked, "how does the battery have 3 years more life in it now than it did in october?" her answer: "pacers usually underestimate the remaining life at first. but as they're in the patient longer, they collect more data, and can make a better estimate of the power it has left. so it is more accurate now than it was then. but you know, i had the same question when i was doing my training." ok, that makes some sense. (and how cool is that? i officially think like a cardiologist! HAHA)

"ok," i asked, "but it's pacing 88% of the time. so it's firing that often, right?" "yes," she said. "so if it's firing that much more often, why is it that his HR is 100 every time we check his pulse?" "well," she said, "when we check his pulse, he's probably nervous or scared or in some pain, which makes his heart rate go up." ok, we'll go with that (for now). not sure i'm entirely on board with that explanation, but i'll go with it at the moment. beats the alternative. {shrug}

then dr w added, "at some point, once he's more stable, we'll adjust the threshold of the pacemaker, lower the settings to maybe 75 or so. that way we can save the battery. but i don't want to do it now when he's like this. but once he's stable, we'll do that. maybe in a few months."

i told her that he now gets pain in his chest every time he's active. he gets a little edgy and flushed and tells me that his heart hurts. every. single. time. she was quite concerned about this. hence the "unstable" comments.

meantime, she wants us to switch his reflux meds from ranitidine to lansoprazole or something else. she thinks that reflux might account for some of the chest pains. and she just might be right... at least to some extent...

but why is he suddenly refluxing so much? he doesn't have that issue anymore, except in certain situations... hmmm... but nothing is showing up on ECG, echo or chest x-ray... but two years ago, nothing showed up on tests, either...

maybe i'm just paranoid. who knows. it's possible. but for now, i'm just hanging out with my littlest man at home. because, oh yeah, he's afraid to go back to school. last time he was there, he was taken to emerg in an ambulance with chest pain. can you say, PTSD??? not that i blame him...

but i made him pinky swear that he'd go to school tomorrow.

but it'll probably just be for half a day. i'd rather ease him back in than just throw him back in full time.

so there you go. the latest goings-on in asherland.

have a great day!!!! :)

um... ok...??? aka, why i'm really starting to believe in multiple universes. aka, blerg. :S

so, it was cardio yesterday. and i have to admit, it left me with more questions, confusion, a little bit of freaxia, and a touch of "WTF?!" (for lack of a better term).

but for anything here to make sense to you (haha), you're gonna need some background information:

• asher's pacemaker is set at 80. this means that his heart rate is never supposed to go below 80 beats per minute.
• when the pacer was checked in august, it was firing approximately 80% of the time and had 6 years left in the battery.
• when the pacer was checked in october, it was firing approximately 80% of the time and had 5.5 years left in the battery.
• between april (when he got the pacer) and november, asher's heart rate was always in the 80 to 86 range. never higher. which means that he was basically just riding the pacer.
• over the last couple of months, asher's heart rate has been in the 100 to 108 range. it has never been lower whenever it was checked (other than tuesday, when it was 74).

so, we went to clinic today for our pacemaker check.

so dr w checked the pacemaker.

and according to the computer,

• the pacemaker is firing 88% of the time. you'll note, that is 10% higher than in october.
• the pacemaker battery has 8.5 years of juice left.

um... wha-?!?!

ok, so i'll readily admit that i am not the most tech savvy person out there. yes, i'm pretty handy when it comes to knowing how to use a computer, but i know virtually nothing about how the computer actually works. and i'm not electrician, but i think i've got a pretty decent handle on batteries.

meaning, i know that they don't recharge themselves. on their own. without help. 

and they certainly don't gain half again as much power. on their own. without help.

and they most definitely do not gain half again as much power by working harder than ever.

and why, if it's working so much, is his heart rate so often in the low 100s? i mean, if it's firing that often, shouldn't his heart rate be in the low 80s most of the time? again, i'm no electophysiologist, but it seems to me that if his heart rate is consistently in the low 100s, that would mean that his pacemaker is firing less often, not more. but apparently it's firing more often.

oh. yeah. some of you reading might not realize this: the pacemaker is designed to keep the heart rate above 80. after a few minutes of shocking the heart, it will pause, to see if the heart can sustain its own rate. if it does, the pacer stops firing and goes into "sensing" mode. the pacemaker will not prompt every single heart beat. so it is asher's own heart that is beating 100 times a minute. the pacer has nothing to do with that.

and in addition to not being an EP, i am also not a statistician. so can someone please tell me the odds of asher's pulse being checked only during the few minutes that the pacer isn't firing? that those rare moments of non-pacing are the times when his pulse is checked? every. single. time? what is the probability that his pacer is firing all the time except when his pulse is counted and those moments just happen to be the only times he's not paced? 

you can see why i'm so confused.

dr w did offer one possible explanation, though: growing pains. makes a bit of sense, when you think about it... he's a growing boy and he has a lot of things in there that don't grow, so there can be some pulling and straining and so forth. but...

i don't understand where the jaw and left arm come into play with this theory. i mean, i remember having growing pains when i was growing painfully back in the day, and i don't remember having pain in my jaw. as for the left arm...

other than the pacemaker, which is on the left side, below his ribs and squished against his stomach... everything non-grow-able is on his right side. glenn? right side. fontan? right side. pacer leads? right side. stent in the aortic arch? center. MPA patches? center. RPV patches? just right of center.

ok, i know there's the possibility of pulling and such and that pain could radiate... but...

riddle me this...

when you have a patient present in emerg with an extensive history of severe heart disease, symptomatic bradycardia and Sick Sinus Syndrome with a pacemaker, and his heart rate is decreased (below his normal and pacer settings), and he is grey and very flushed and complaining about chest pain radiating down his left arm, are you going to think... growing pains???

i don't know...

i just don't know...

you see why i have so many questions now. i don't get it. the growing pains theory makes sense if you eliminate tuesday. the pacemaker report makes sense if you disregard everything you've observed and reported before yesterday's appointment, as well as all laws governing batteries and technology.

and this is why i'm starting to believe that, sometime in the last couple months, we slipped into a parallel universe. one where dryers don't blow fuses with every load (been having some electrical issues at home), stove burners actually heat up (the burner that hadn't worked in 3 years decided to work the other week and i almost burned the house down), blithe wants to clean her room and do as she's told the first time, and batteries recharge themselves by working harder and longer than ever.

technology is great... until there's a glitch. {wave of nausea}

and when the glitch could kill your child... {wave of nausea}

asher's london cardio, dr w, has suspected for a few weeks now that asher's pacemaker isn't quite doing what it's supposed to do. what with the symptoms, like grey spells, it was a possibility.

turns out...

she's probably right.

almost every day for the last few weeks, asher has told me that his heart hurt. sometimes it burned, sometimes it just hurt. and something else always hurt, too, like his throat, jaw...

(ok, a warning: i'm going to try hard to not to vomit while i write the rest of this post. it's just. that. freaxiating.)

yesterday, shortly after noon, i got a call from the school. it was asher's EA (educational assistant). she said that asher told her that his chest was hurting. she also said that he was flushed and several people had remarked that he was puffier than usual. so i asked to talk to him, and i asked him,

"hey, hunny, how are you?"

"not good."

"what's wrong?"

"my heart and my arm hurt."

"your heart and your arm????"

"yes."

"which arm?" (at this point i realized that he can't show me which arm over the phone. and he doesn't know his right from his left. on to plan B...) "show mrs e which arm hurts, and give her the phone, please... {mrs e comes to the phone} which arm did he just show you?"

"his left arm. why?"

"because he's saying it hurts. he needs to be seen. right now."

a couple phone calls and the school called 911 and asher was rushed to emerg.

the vitals en route were as follows:

• BP was 116/54.
• sats were 94% (down a bit off his norm, but not much. not enough for 02)
• heart rate was 74.

74?!?!?!?!

yes. 74.

his pacemaker is set so that his heart rate doesn't go below 80.

his heart rate went below 80.

and when i saw him, he was scared (he never gets scared, especially when he gets to ride in an ambulance), his forehead was grey, and his cheeks and mouth were the brightest shade of red i have ever seen on him. even with a high fever, asher has never been that flushed.

he still had pain in his chest and arm by the time he got to emerg. this was about 40 minutes after i got the call from the school.

so the doc ordered a chest x-ray, bloodwork and an ECG.

asher and i played a bit, and rested a bit.

after a couple hours, his heart rate was up to about 82. and fyi, his usual anymore is 100. but it's over 80. but you'll note, about 20 bpm slower than usual.

in the end, doc didn't have any concerns. quoth he, "if an adult came in with chest pain like this, i'd continue to investigate and look into things like coronary artery disease. but he's too young for that."

to which i almost snapped replied, "he's also too young for a pacemaker, bloodthinners, diuretics, beta blockers and ACE-inhibitors. what's your point?" but i bit my tongue.

i called our amazing paeds dr b once we were discharged. i told her everything, including the uber low heart rate. so she called cardio. then she called me back, saying that dr w wants to see asher on thursday at 1:00, and she'll check his pacemaker.

now, if you know me, you know that i have been thinking about this non-stop since yesterday. coronary artery disease? pacemaker? symptomatic bradycardia? chest pain????????? wha-?!?!?!

never fear, gentle readers, i have figured this out.

sure, there's a possibility that asher may have coronary artery disease. with asher, anything is possible, especially when you take into account the very heart unhealthy diet he's on in an attempt to pack on some pounds. so i'm not ruling that out. but i wouldn't bet on it, either.

no, my money would be on the pacemaker.

and now you're confused. so i'll explain.

chest pain (aka angina) occurs when the heart muscle does not receive adequate oxygen. now, with CAD, plaque builds up on the walls of the arteries, decreasing the amount of blood that can flow through. decreased blood through the arteries means less blood getting to the heart, which means less oxygen getting to the muscle. which means bad.

with symptomatic bradycardia (aka, heart rate is low and affecting function), the heart is not beating fast enough. this means that less blood is being pumped through the coronary arteries. which means that less oxygen is getting to the heart muscle. which means bad.

and with heart block like asher's, his heart rate doesn't always go up with activity. which means that his body (including his heart) needs more blood and oxygen, but his heart can't send it out. this is what causes things like fainting, grey spells, dizziness, chest pain... oh. and the chest pain... can feel like tightness, a weight on the chest, or... burning... yes, angina and reflux can feel the same... making them easily misdiagnosed as the other...

so here's where things stand right now:

asher is not going to school until this is sorted out and his pacemaker is working and his heart is beating and not... um... attacking. it's too risky.

asher has been instructed to tell someone (me, his dad, my mom... whichever adult he's with at the time) when his heart hurts, and if his jaw, neck, shoulders or back hurt. we need to know right away. because if he starts to have chest pain, he needs to go to emerg. right away.

i am trying not to feel guilty. for weeks now, asher has been telling me that his heart hurts. that he gets dizzy. that his neck, throat and jaw hurt. and i was brushing it all off, thinking it's nothing more than a bit of reflux or tiredness. sure, i've been watching him, playing chicken with him, if you will, but still... he's had these symptoms, and i did nothing. ok, i mentioned the grey spells to cardio. and i told dr b about the reflux (or what i thought was reflux... now i don't know...). so in my head i know that i did the best i could with the information i had at the time... but knowing that what i didn't know could have killed my baby... and could still do him a lot of harm until his pacemaker gets sorted out...

i just want to cry.

instead, i'm breathing. and i'm trusting God. i don't know what is going to happen, and i'm scared out of my mind, but i'm trying to trust God. i don't succeed 100% of the time, i'll admit. but i'm working on it. so i'm working on breathing and keeping busy and just waiting for the appointment tomorrow afternoon.

ps - sheryl, i've been thinking about this off and on for the last 6 months... and i think you might be right. at least some times. times like this, for example. sigh...

asher's new "best" song

a quick update about clinic yesterday...

clinic was actually pretty good, i'd say.

sorry, i just don't have a long post in me tonight. so i'm just going to do the coles notes version of the day, and you can fill in any jokes and wisecracks you want.

• sats: 95-96%; BP was normal; HR was 110
• height: 97 cm (3'2" - he's almost an inch taller since october!!!); weight: 15.4 kg (approx 34 lbs)
• ECG looked fine
• asher's re-obsessed with Thomas trains.
• asher greeted his cardio with "guten tag," which amused and delighted her. see? she's lovely. :)
• resident was inappropriately dressed, and put things like puffiness in quotes... because it's not a medical term. but i had to explain the difference between swelling and puffiness for her. (for non-medi/heart types... one is an accumulation of blood to an injury/infection site, the other is the result of fluid build-up caused by insufficient heart function.)
• dr w agreed that asher's latest symptoms are the cardiac after-effects of a virus, but as long as they resolve themselves in due course, he's ok. 
• asher was not puffy, as he had been on monday when dr w booked the appointment. of course. haha but this also means that his symptoms are resolving themselves in due course, so he's ok.
• dr w agreed with dr b's decision to prescribe ranitidine to treat the reflux.
• dr w was concerned about asher's report of his "heart going really fast" the other day. so she ordered a holter, and we'll see from that if his pacemaker needs to be adjusted.
• dr w discontinued the aspirin. she said that, because of his age and the fact that he's in school, he has a higher risk of a bleed from getting bumped, than he does of developing a blood clot from being sedentary. we will probably have to resume bloodthinners when he's older, but for now, he doesn't need to be on aspirin.
• discontinuing the aspirin is a major milestone for asher. he's not on any cardiac meds anymore!!!!!!

sorry that this wasn't up to my usual standards of quality writing and verbose-ness (haha, i just made up a word because i couldn't think of the word meaning "wordy" HAHA). i've got other things on my mind tonight...

don't worry... there's another post in the offing as i type...

last night as i lay cuddling...

every night at bedtime, asher wants me to cuddle him to sleep.

it's my favourite time of the day.

see, the older kids slept with me until, well... asher. and even still, if bram is going to nap, i have to lay down with him (oh, the hardship). blithe still sneaks into my bed at night sometimes. why, just the other morning, i woke up with both of them in my bed. i have no idea when they joined me, but it was a nice surprise.

but asher... when he was a baby, he slept with me for the first week. and then... he was lying on a tray hooked up to more machines than you can imagine for several weeks. then he came home with a feeding tube and severe reflux and broken ribs and well... co-sleeping didn't happen. at all. ever.

until a few months ago, when he decided that he wants me to cuddle him to sleep.

gosh, let me think about that... um, YEAH!!!!

so, last night, he said his prayers and we cuddled up. as we lay in his bed spooning, just as we were both drifting off to sleep,

i could feel his heart beating.

lub dub, lub dub, lub dub...


ok, really, it's more like lub lub lub lub lub.

(and for those who don't spend as much time with cardiologists as we do... "lubdub" is the real medical term for the heartbeat. see? this blog is entertaining and educational! haha)

anyway... i could feel asher's heart beating. a beautiful, strong, steady rhythm.

and it got me thinking... as things often do with this littlest man of mine... how miraculous this little heart of his truly is.

this little heart of his...

deformed...

scarred...

ripped apart...

put back together in a different way...

wired up to a battery pack...

it shouldn't work. it just shouldn't.

and yet, there it is.

lub lub lub lub lub


pumping his blood through his little body... which is also scarred... and small for his age...

and keeping him alive.

and keeping him alive.

it's like it doesn't know that it shouldn't be able to do this. to beat. to beat this often. to beat this strongly. to beat this regularly.

to beat at all.

and yet it does. a steady rhythm. a constant rhythm.

a beautiful rhythm.

a miraculous rhythm.

a little boy's rhythm.

my little boy's rhythm.

i don't know how long i'll have this rhythm in my life. it hurts to know that, but it's true. but right now, i also know

that this little rhythm of his is beating away. at least 80 beats every minute.

and it's just so. very. beautiful.

what a difference a pacemaker makes

saturday marked six months since asher was admitted to london's PCCU with severe bradycardia. when active (read: awake and playing a bit, since he wasn't nearly as energetic as usual), his heart rate was in the low 50s. last night was the half-anniversary of the scariest night in asher's life. his heart rate was sitting at 30, he was hands down the darkest shade of grey i'd ever seen him (only slightly lighter than charcoal - and i'm not exaggerating here at all), he was sweating like a pig so that he soaked through his bedding in just a couple minutes, and his nurse couldn't wake him up. there was a vial of atropine at his bedside and the intensivist was scared out of her mind and actually said, "this kid needs a pacemaker right now. get him out of my unit; i don't want him here." i was terrified that asher wouldn't wake up in the morning.

and it didn't improve much over the next week or so. he didn't get his little battery-pack for over a week, and that whole time, i was disintegrating emotionally. i must have cried every day. now, granted, i made some great friends, and the lunches with D were a very welcome (if surreal) distraction, but every time i looked at asher my heart broke. every. single. time.

and if i'm honest here, i have tears in my eyes as i write this post. it was probably the darkest time in asher's life. sure, the first admission, when he was diagnosed and had his hybrid... that was terrifying, too. but don't discount the beauty of shock and ignorance. when you have no idea what's going on, you don't know just how scared to be. but by now, i have some knowledge on my side. i know what it looks like when a heart is failing and shutting down. and by now, i know asher, and i know what we would have lost if his heart got the better of him.

and now, here we are, six months later. as i type this post, asher is at school, playing with his friends, playing on the computer, singing songs and learning and... well, living. i'll admit, in april, i would have told you that this likely wouldn't happen. and yet... it's happening!!!! asher is alive!!!!

so i want to take this opportunity to thank all of you, our wonderful readers, for all your prayers and thoughts and love. you have given us both so much strength and courage to get through all the horror, and the grace and joy to fully embrace the normalcy. thank-you so much. we couldn't do this without you.

i think some EEG leads would be helpful to have around the house [wink]

so, asher went for an EEG this afternoon. it was interesting.

i picked asher up from school. he'd had a great morning! he went to the gym with another little boy and they played with frizbees, and asher LOVED that! he was talking all afternoon, "i hab da red fizbee, mommy. also, da udder liddle boy hab a pink one. and we frew dem around. it was fun, mommy!" i have to say, i'm glad asher is still getting some phys ed-type activity. as much as he loves computers, i'd hate to think that they would simply replace phys ed with a desktop. so he got to run around and play in the gym with another child, and that was awesome. he also made a nice little craft this morning with yellow cardstock (that's my boy!) and some scissors (fine motor skills extraordinaire!) and glued the pieces together to make an "airplane" for himself and a "car" for me. as you might expect from a 3 yo, they looked nothing like an airplane or a car, but he was excited about his craft. he's doing so well in school, it's just wonderful to see how much he's maturing and growing up after even a couple weeks in school. honestly, it makes my heart go up. waaaaaay up!

and then we went to the hospital for the EEG. as he was sitting in his seat behind me in the truck, i checked in the mirror and he was staring out the window. so i reached back to tickle his leg (just ignore the bad driving habits and keep moving along in the story, people, there's nothing to see here). and his response? he stared out the window.  so i tickled him again. still staring. so i called his name. still staring. after several more seconds, he started playing with his pacer protector.

and that, dear reader, is how one describes an absence seizure, aka "petit mal" seizure.

now, i have to be honest here. i'm having trouble with this diagnosis. maybe it's that it's still so new, maybe it's that i don't know enough, maybe it's how powerless i feel when he has these seizures. and he's having so many. i've been noticing at least 2-3 a day now. and then that makes me wonder... how long has this actually been going on? i never really paid attention to it before, because i never knew to watch for it. but now that i recognize it, it happens so often... and there's nothing i can do about. i just have to roll with it, document it, watch for things like eye twitching, make sure he doesn't drown in the tub, but other than that, there's nothing i can do. i'll get past this, i know i will. i had the same fears in the early days, when asher was newly-diagnosed with HLHS. but i adapted and learned and i no longer feel helpless and guilty and powerless and afraid when it comes to asher's heart. but this is his brain, we're talking about. i guess i've always figured that the heart and brain are the two organs you want healthy, for some reason. not that the others aren't important, too, but i think i've always taken comfort in knowing, sure, his heart's pretty wonky, but hey, at least his brain is ok.

and now, his brain is not ok.

again, i will get past this. i know it's not his major health issue, so i take some comfort in that. meanwhile, please pray for me a bit that i can get past this.

ok, so on to the EEG. we arrived at the hospital and and asher handed the clerk his cards and we were registered. asher was pretty disappointed that they didn't have stickers to put on his hospital card. (he likes to collect stickers on there, and he only has one right now. his old card, which one clinic kept, had about seven!) and off we traipsed to the lab.

they took us straight in, and asher was delighted to see all the nemo and fish stickers on the wall. his faves were Dory and the dolphins jumping out of the "water." while the lady put all the leads (23 of them!!) on his head, he was quite the little chatterbox. it was so cute! he told her all about school, blivey and brammy, and smokey and the kittens. the tech asked me at one point, "is he always this well behaved?" "he's used to tests," i answered. and then the test started.

now, for those of you who have never experienced an EEG, you have to be very still and quiet. for the whole test. which should take about 40 minutes. and knowing asher and his energy levels, i was afraid we'd be there for hours. well, guess what!! the test took about 40 minutes!! he had to lie still, which he did, for the most part. we only had to tell him three times to stop moving and close his eyes, which surprised me... and didn't surprise me (see "he's used to tests" comment above). but his favourite part of the whole test was the strobe light. he was almost laughing out loud during that part! but he didn't, and it went well.

so now we just wait for the results. and a note about the results: if it's positive, it's positive, and they will know what's going on in that little brain of his. if, however, the results are negative... yeah, that means nothing. haha apparently, there's a 50% chance of a false negative with an EEG. the neuro told me about a patient of his with severe epilepsy, and it took eight (count 'em!) EEGs for anything to show up, even though they knew she was having seizures frequently. gosh, isn't that reassuring. haha know what's nice? tests with actual answers. i like those. they please me, on some weird level i don't fully understand. ok, i lie. i know exactly why i like answers. ready? here's why: because they're answers. and then we know what we're dealing with, and i can read up and watch for symptoms or whatever, and we can do something. ok, mostly it's because i get to learn new stuff. i like that. it's just so interesting!! sure, it's a bit horrifying and nauseating, but it's interesting, too. (which really just confirms what i've been saying about myself all along: i'm a nerd.)

so now, given how calm and quiet asher was during the test... do you think they'd give me some EEG leads - just the leads, not the whole, um, test-doing-contraption-thingy (where's a dictionary/thesaurus when i need one?!) - to have at home? you know, for when asher's all wound up and running around like the tasmanian devil/energizer bunny that he is... it might buy me 40 minutes of quiet... sigh... a mom can dream, right?

it's asher's first FULL day of school today...

so, of course, i'm blogging about it. (did you expect me to not post here about this?)

asher has been doing very well in school. he is loving every minute of it... or... um... almost every minute of it.

on his second day, he was sad and crying in the morning, so his EA took him over to see bram, who gave him a big hug and made asher happy. i loved to hear about how supportive my older kidley-winks are with their little brother. it makes my heart go up, it really does.

so this morning, i was getting the kids' lunches ready, and asher came into the kitchen. "what are you doing, mommy?" "i'm making your lunches for school today, sweetie." to which he replied, and i quote,

"I NOT WANT GO TO SCHOOL, MOMMY!!!!!"

"what? what's wrong? don't you like school, hun?"

"no. i not like school anymore."

"how come?

"because day get mad at me."

"you mean when you wanted to play on the computer and they said 'no'?"

"yes. day get mad at me."

now, let me explain this. on friday morning last week, mrs b introduced the new centres that hadn't been opened yet. one of those centres was the computer. asher, it would seem, wanted to play on the computer right away. they told him that he would have to wait for his turn. anyway, this was not what asher wanted to hear, and well, in true asher-doesn't-know-crying-is-bad-for-him form, he got upset. and so, today, he not want go to school because day get mad at him. {rolls eyes} i tried to tell him that he will get a turn, and he'll be spending a lot of time on the computer, probably starting this week, but nope. he not like school anymore.

now, all that being said, i got him dressed without incident this morning, and we piled into the truck and when i dropped the kids off at school, he grabbed his backpack and ran after blithe and bram, who were taking him to the kindergarten doors. no complaints, no "i not want go to school," nothing. just smiles and running off to his class.

now, you may notice in that last paragraph that i drove the kids to school. "but, heather," i hear you asking, "why isn't asher going on the bus? were you running late this morning?" haha you'd think so, but no. i got up after only 4 hits on the snooze button (roughly 7:40), and everything was running smoothly and on time. so that was not the issue... today. (why, no, i love mornings. why do you ask?)

asher had been taking the bus to school. and then the school called one afternoon last week, and he will need to be on a special bus. he will have a car seat and get picked up and dropped off right at home, and there will be someone on the bus who can watch for asher's, well, asher-ness. it's just that the regular school bus isn't a safe place for him. and frankly, that's fine with asher. because he "not like da bus. it scary. dare too many people dare." so i'm hopeful that the change to a different busing situation will be smooth and asher will adjust well.

now, on a different note, asher decided on friday that he wanted to play on the computer. i set him up with his favourite site, and he said, "mommy, i not need help." and you know what? he didn't!!! he just played away on the laptop for almost an hour, perfectly content, clicking away all on his own. he did amazingly well. as he sat on my lap, i watched in amazement as he handled the somewhat-tricky finger-pad-thingy and clicking the button there, making pictures, playing songs, putting animals in the appropriate habitats... it was truly incredible. i was so impressed and proud.

maybe it's not such an impossible dream that he'll be the next bill gates or steve jobs... and i'll now add to that dream that asher will keep me in the lifestyle to which i would like to become accustomed. ;)

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.

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.

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?

nothing.

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

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

asher's new fave song :)

he's actually a little obsessed with this now. the boys are big fans of Kraftwerk now (which makes me very, very happy and very, very proud), and this is one of Asher's favourite songs. :)

although now he's got the idea that he wants to be in the Tour de France. please, someone, change his mind. my heart just can't handle that!!

a song

(to be sung to the tune of "i'm a little teapot")

i'm a little robot and a boy,
i am real and not a toy
i can run and jump and laugh and play
i'm growing bigger every day.


my dad wrote this for asher when he got his pacemaker, and the kids were singing it this morning, inspired by the new look here. :) so i thought i'd share it with you.

in answer to my question from the other day... this might be as close to "normal" as we get around here... but i'll still take it.

ah, normal... and not even "asher normal" anymore...

or as it turns out, a new "asher normal," but one that is probably as close to the real thing as we're gonna get. here's the low-down:

asher has a pacemaker. i know, i know, i'm master of the obvious. but what i had forgotten about was

asher is obsessed with thomas.

you know, the trains

with magnets

that are strong

that he holds in his hands

all the time

often less than 6 inches from his new gadget. ("go go, gadget heart!" haha, sorry, couldn't resist.)

see where i'm going with this? yeah, it's freaking me out a bit. ok, not "freaking me out," per se. more like... concerning me somewhat. see, magnets are not exactly the best thing for the pacemaker. you should see the booklet i got about what he can and cannot go near. (alas, he cannot play with chain saws or jumper cables, but it is safe for him to have a mammogram, so that's a relief. teehee) but it seems that thomas trains were left off the list entirely. and believe you me, i looked. several times. and they aren't mentioned. not even "magnetic toys." sooo... given that asher loves them so much (especially Percy. dear me, he's obsessed!! just ask dr c.), that he always has at least one in his hand (usually the left, since he's a rightie), that he usually even sleeps with at least one but often more...

is this a problem?

magnets and the like are bad for pacemakers because they can cause the generator to malfunction. that is to say, it will either fire when it doesn't need to, or it won't fire when it needs to. once the magnet or whatever is away from the pacer, it resets itself and goes back to business as usual, but i'm just a little concerned because i know too much and not enough. let me explain.

heart rate changes. it goes down when you rest, and up when you're active. that's the way the heart is designed to work. unless you have a block, as asher does (intermittent AV block, to be specific). when there's a block, the HR doesn't always increase with activity. that's a problem. hence the pacemaker, which keeps asher's heart rate at an acceptable rate. it still doesn't always go up, it is often still at 80, but that's ok (i'm assuming).

now, if the pacemaker malfunctions, it may not tell his heart to beat when it needs to. or it may tell his heart to beat too much. either of these is a wee bit of a problem. oh, sure, it won't likely kill him. we're talking about miniscule amounts of electricity for short periods of time, or a lack thereof. but still! suppose he's sleeping with his beloved percy train/magnet/potential anti-pacing device, and his HR is in the 30s, and the pacer isn't working because of his favourite toy ever?! what then, i ask? what then??

on the other hand, the train magnets might not even be an issue, and this whole rant might be in vain, and i'll feel dumb for even bringing it up and worrying some of my readers (because i know some of you, and you will worry now that you've read this. i wish you wouldn't, but i know you do... mom), so i'm going to be calling london cardio in the morning to find out for sure whether i need to be concerned about this or not. and then, of course, i'll fill you in. because you're dying to know, admit it. ;)

and since asher has to be asher, and he's just not asher with only one thing to mention in a post,

asher had a blue spell this week. (margaret, stop reading for a second.) ok, actually, he's had a few. (ok, you can start reading again.) nothing major, just navy blue mouth and nose. but he wasn't distressed at the time, and he pinked back up after a couple minutes, for the most part. but the first time he did it, he was sitting at the table eating some yogurt (fat-free, of course) and he just... turned blue. and then... turned pink again. but nothing else changed, just his colour. no shortness of breath, no dizziness, no sweating, just happy little asher enjoying his snack. so i called our paeds and mentioned it to her (emphasizing, of course, that the blue was his only symptom and please please please don't send us to london over something like this but really i thought the blue spells were supposed to stop after the fontan and yet here he is turning blue for no apparent reason what's up with that???). and of course, being the good doc she is, she called cardio. in toronto. london would probably just blame it on the lighting and how i don't know asher's colour. (oops, did i type that out loud? sorry about that.) so apparently, dr r, my fave cardio, responded with, "no, i don't think it's something to worry about. we never really figured out why he was having blue spells before, actually, so i don't think this is anything to worry about."

i love her.

even though i know some of you are now wondering why it wouldn't worry them that he's still turning blue and they never figured out why this was happening even before the fontan. it just means that it (likely) isn't related to function, so they're not worried.

and therefore, neither am i. which makes me happy. and a little nauseous, but amusedly so, since a blue spell they can't explain isn't worrisome. see what i mean when i refer to "asher normal"?

and one more little asher tidbit. he's skinny. oh, sure, i know he was never the biggest kid out there to start with. he's only in the 25 percentile for height and weight. but this fat-free diet bothers me. (don't read the rest of this paragraph, rachel.) he's so skinny now. i mean, really skinny. i was dressing him today and i took a good look at him, and i wanted to cry. he is pretty much just skin and bones anymore. i can literally count his ribs. i can trace the outline of his pacemaker. he has legs like bram, for crying out loud!! (bram's a stick, for readers who have never met him.) his arms look awful, his knees are knobby and weird-looking... you get the idea. he looks awful! he used to be my little tank. short, yes, but brawny and barrel-chested and strong. now i'm reminded of when he was labelled FTT after he got his GJ-tube. it just makes me so sad to see him like this. i want so badly to just start giving him fatty food again, to help him gain weight again and get back to being my chubby little heart kid. but i can't, because of the chylo. which sucks. and we still have a week of this diet! it's awful!

but for now, i'll just breathe and remember that this, too, shall pass, and that he's made it through so much worse. but every mom knows how disheartening it is to see her precious baby lose weight to this degree. or maybe you don't. and that's a good thing. enjoy. :) so i'm breathing, and this, too, shall pass.

(ok, rachel, you can start reading again.)

in other news...

• ethan is still at sick kids. i talked to his momma today, and they still don't know fully what's going on with him. they're still not treating the bacteria in his lungs because he isn't symptomatic enough, apparently, and they want to send him home soon. needless to say, mom is not on board with this idea. especially since they want him to go home on daily antibiotic prophylaxis through his PICC line, which she would have to do, and she will have to suction him before every meal (they suspect he aspirates). and keep in mind, she'd have to pay for the suction machine. and keep in mind, she has six other kids. and keep in mind, she's exhausted and stressed out and very concerned about her baby. so please hold them in the Light right now. she is beside herself lately, not knowing what to do and having some trouble coping a bit, and her sweet little baby (who is absolutely adorable, by the way) doesn't seem to be getting better, only sicker. so they really need prayer.
• mia is now home. you'll recall that mia is the 7-year-old who was in an accident and had to have some hefty reconstructive surgery done earlier this month. well! they sent her home. she's not 100% yet and faces a long road to recovery, but going home is definitely a step in the right direction, so please continue to pray/etc for mia and her momma mary and their family.
• taylor is either home or going home in the next couple days. he is the little boy who weighed 13 lbs at 16 months of age. yeah. home. i'm sure sure what's going on with him, but i know they're out of sick kids.
• little hannah was transfered to london this week for the rest of her post-op treatment. this is bittersweet: on the one hand, london can handle everything from here on out, and this brings them much closer to home (i'm thinking of going up to visit them tomorrow, actually), but mom rachel was very opposed to the transfer, understandably feeling much more comfortable in toronto. the other issue with hannah now is that she also has chylothorax (hence the "don't read this, rachel" comments), and doesn't seem to be tolerating her new formula. she now has an NG-tube, which mom is becoming a pro at inserting (i've done it, it's not fun, but we gotta do what we gotta do, sadly), so that may help somewhat with the formula intake. i'll post more about hannah when i know. but in the meantime, please pray for them, as well.
• please pray for my friend sue's baby, levi. he has a rare condition which requires meticulous care, lots of appointments, and even more bloodwork. it's very stressful, especially given the nature of the condition, which is scary. he is only a couple months old, but has already spent too much time in hospitals, especially in critial care units. please hold them in the Light. i'll update you periodically on levi's progress, too.
• hunter, one of asher's single ventricle cohorts, is going in tomorrow for his fenestration closure. this is done in the cath lab, and they close the hole in the fontan. they will also be checking out function and his narrow jugular, but no one expects there to be issues with those. but still, it's nerve-wracking, so please pray for hunter (and mom, drea) tomorrow.

anyway, that's the update as of tonight. thanks for enduring the marathon post. i'll try to keep them more brief in the future. which likely won't work, but i'll try. ttyl!