and the post i started yesterday was going to be so different...

this afternoon, i was taking a shower, getting ready for work, when the phone rang. i let it go to voicemail.

i shouldn't have.

i should have jumped out of the shower and run to the phone and answered it immediately.

but i didn't.

i let it go to voicemail.

i shouldn't have.

when i checked the message a couple minutes later, it was the secretary from the school.

she needed me to call her back immediately. her concern was obvious by the urgency in her voice. i knew right away that something was very, very wrong with asher.

i called her back and here's what she said,

"hi, heather... we have asher... he's in the office... the paramedics are here now... can you meet them at the hospital?"

"what what what what what what what what what what what what what what what what?!?!?!?!?!?!?!"

"he was... lethargic... they're leaving now... can you meet them at the hospital???"

"YES!!!! i'll be right there!!!!!"

i called asher's dad to see if he'd talked to them yet, and to ask him for a ride to the hospital (i was literally shaking at this point, so i didn't think driving would be the best idea...) while i was waiting for him, i updated FB, with

PLEASE PRAY!!!! ASHER IS BEING RUSHED TO THE HOSPITAL. THE PARAMEDICS ARE AT THE SCHOOL RIGHT NOW. I'M ON MY WAY TO MEET THEM AT ST THOMAS EMERG. PLEASE PLEASE PRAY. ALL I KNOW IS THAT HE'S VERY LETHARGIC.

see those caps?? that's because i was terrified.

i won't give you the exact play-by-play of the afternoon, but here's what i gathered from the paramedic, our paediatrician, and asher himself:

by this afternoon, asher didn't have an appetite. so they brought him down to the office to see if he would eat there (sometimes he just gets distracted by the other kids, and the school has been informed of his FTT-ish tendencies and that he must eat his whole lunch). he didn't want to eat much.

then they noticed that, in addition to the loss of appetite, he was lethargic. and his colour wasn't right. so they started to get concerned...

when suddenly he became

flushed.

very sweaty.

unable to keep his eyes open.

unresponsive.

all he could hear was a rushing sound and his heart pounding. this is why he was unresponsive: he couldn't hear anyone speaking to him! he said that he was very, very dizzy, and his heart was burning and felt like someone was pushing on his chest, and he was very scared.

and when the paramedics arrived, his heart rate had dropped to 40bpm (beats per minute), but picked back up to 80 within a few beats, once the pacemaker kicked in. and the doc's words: "the paramedics said he looked awful when they got there."

(side note: this isn't really indicative of a problem with the pacemaker, which i know we're all thinking... because i thought it, too, initially. but if the pacemaker has been working for a while, it will switch off for a moment, just to see what the heart will do without it. if the heart cannot sustain the 80bpm on its own, the pacer kicks in again. this is what happened. the pacer tested the heart, his heart rate dropped by half, and the pacemaker brought it back up again. back to the story now...)

by the time we all met up at the hospital, asher was fine. his heart rate was sitting at 80, his colour was fine, energy and mood were normal, and he was smiling and chatting with the nurses when i walked in. his blood pressure was 117/75, his sats were 93 to 95% (his norm is 96 to 98%, so that's not too bad). the chest x-ray and ecg were unremarkable (pacer spike was visible on the ecg); bloodwork and urine were fine. right now, we're just waiting for the blood culture results, but those will be negative, too... other than some mottling on his back, he is showing no signs of sepsis or anything else nasty and bacterial.

so they sent us home.

i talked to our amazing paeds dr b this evening, and she's going to call neuro tomorrow. she wonders if perhaps this was some strange sort of seizure? asher did have an absence seizure as we were leaving the hospital tonight, so it's possible... and if it's not a seizure, at least we would know to focus on the heart if (yes, i'm saying "if," not "when") this happens again.

right now, i don't quite know what i'm feeling. relief, yes, absolutely. what happened today could have been very, very bad. (for those of you who saw my FB status this evening, there's a reason i used the word "infarc" in a text... it's because that's likely what very nearly happened... and if you don't know what an "infarc" is... you don't want to know, so don't ask.) but considering what i was writing yesterday... about how stable he is... which, yes, in the bigger picture, he's been worse... but... i think there's some fear and shock mixed in right now, since this happened so quickly, right out of the blue... honestly, yesterday he was fine.

completely fine.

a little heartburn, and tired during the heat wave last week, but other than that, completely fine.

and then today, i'm flying down the street to emerg because my baby almost had a heart attack at school. again.

well. he's not going to school tomorrow. and we'll see about friday. i'm not sure if this is for his benefit or my own, but i just don't feel comfortable sending him to school right now. i mean, he's acting fine. honestly, he's back to his usual self. which is lovely, don't get me wrong. but...

i'm rattled.

i'll get over this. i will. who knows, by morning, i'll probably feel better and calmer and by 10:00 i'll be wondering why i thought he couldn't go to school! haha but right now...

either way, i'm going to look at this as a couple of days with my littlest man, just me and him, hanging out. :) we'll play some monopoly jr, some candy matching game, maybe i'll get him to help me with some laundry, maybe we'll do some colouring... a fun time, just him and me. :) that's how i'm going to look at this right now. just nice, calm down-time with my littlest man. <3

and now if you'll excuse me, i'm going to go make myself some tea and relax. maybe some journaling, maybe some reading, maybe some praying... maybe some tetris... haha

right now he's doing fine. he and blithe are having a little sleepover in her room. his colour was a little off at bedtime, but it was just some reflux. he said his chest and throat were burning, so i gave him some ranitidine. tomorrow i might get him some tums or something, to tide him over between doses of the med... good thing i work in a drug store, eh? {wink}

anyway, there you go. the day in review. now i'm going to drink my tea, play some tetris, maybe read up on how to be fabulous, journal a little bit more, and go to bed.

thanks so much for all the prayers, vibes and crossed crossables this afternoon. they were needed and much appreciated.

i heart laundry.

ok, not really. at least, not usually. but today,

i love laundry.

so, i'm upstairs, folding my way through a GIANT pile of clean clothes, and i pull out a pair of underwear. i check the size, and it's asher's.

and i smiled.

because just two months ago, he was still in pull-ups.

and he's not anymore.

{smile}

and then, i continued folding the laundry, and i suddenly realized something:

i'm folding asher's laundry.

i'm folding asher's laundry.

my littlest man produces oodles and oodles of laundry.

because he's still here.

yup. i heart laundry.

my littlest man is an artist!!!!

asher gave me my mother's day gift this afternoon. have you ever seen anything cuter????

(and just ignore the mess behind it...)

sshhh... don't tell Murphy, but...

at the end of this month...

it will be...

ONE WHOLE YEAR SINCE ASHER'S LAST ADMISSION!!!!!!!!!!!!!!!!!!!!!!!

yes, you read that right.

one.

whole.

year.

granted, it's been a year full of appointments and scares and trips to emerg and pacer problems and almost heart attacks and near admits...

but no admissions.

none.

in almost a year.

this, folks, just doesn't happen in asherland.

well, it didn't happen in asherland.

but apparently, it does now!!!!!!!!!!

just sayin'. ;)

i'll post my thoughts and feelings about this later, but it's 11:30 and frankly, i'm tired, so this will just have to do for tonight. but yeah.

a year.

awesome. :D

so much sweetness

today i let the morning routine slide. (yes, i know, it's only day 3, but i think it was worth it. teehee)

i got up a few minutes late, but i got dressed. came downstairs, took the fresh loaf out of the bread maker, poured myself a cup of coffee that had already brewed (mmm... programmable coffee maker...), and started pondering lunches.

i went upstairs to check on asher, who, unlike blithe and bram, was still asleep.

soundly.

lying on his back, sprawled out across his bed, mouth open with his sucky dangling precariously from the corner of his lips.

i stood there and watched him for a moment or two...

and let him sleep in.

blithe and bram got ready for school, and i watched them walk to the bus stop. they're so delightful, you know? they walk along, so young and fresh and yet also somehow so grown up... blithe has her uber-girlie walk, and bram with his little man gait. they were chatting and laughing and waving to me when they looked for traffic before crossing the street. and they got to the bus stop and chatted with their friends.

i went back inside and went upstairs to check on asher again.

he was just climbing out of bed, his crazy hair all crazy messy, sucky securely popped back in his mouth, and he flashed the brightest smile when he saw me come in the room.

i got him out of his grinch pj's, and helped him pick out his outfit for the day, and he told me all about his cozy and comfy and warm socks that he picked out a long time ago.

as he walked into the bathroom, i marvelled that just a couple months ago, he was still in diapers, and now here he is, completely potty trained.

i watched him put on his rubber boots on the wrong feet, and smiled.

i offered to help him put his jacket right side out, but he ignored me and kept working on it until the sleeves were right. he put it on by himself and made a zzzzip! when he pulled up the zipper.

he tried to open the front door, which i then unlocked, and he walked outside and waited on the porch while i locked the house.

he climbed up into the truck and plopped himself down in his car seat and chattered away while i buckled him in.

off we went to school, and we held hands as we walked through the front doors and down the hall to his classroom. he showed me his pictures on the wall and door, and told his EA all about his hospital dolly.

and as i left him there, i thought,

how is it possible to be blessed with just so much sweetness in my life?

and i smiled.

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!

well, it was a day...

so, asher was home from school yesterday, which meant that he and i were going to have a delightful day, just the two of us. oh, i had grand plans. he wanted sushi for lunch, and i was going to spend the afternoon doing laundry and tidying up around here.

the best laid plans... sigh...

so, he was feeling fine in the morning. a little tired, but he hadn't slept overly well on the weekend, due to the diuretics waking him up a few times a night. but other than that, he was fine. chipper, funny, playful, laughing hysterically at treehouse cartoons.

we got dressed and headed out for lunch. we got our sushi, sat down, and started to eat. he ate the rice from a couple rolls, but just kept on talking and playing. (he doesn't eat much, so this wasn't unusual, so i thought nothing of it.) he started talking about some of the things he saw around us, making conversation, and pointing out things he wanted me to notice. so i noticed them.

and then i noticed him.

he was navy blue.

still chatting, but slowly becoming less animated.

and then he started shivering.

i asked him if he was cold and wanted to put his coat on, and he said no.

so i reached across the table and touched his hand

and it was cold.

and i don't mean warm with a hint of cool.

it was just. plain. cold.

i watched him for a moment, thinking (read: hoping) he'd just caught a draft and he'd warm up in a minute.

but then he started getting cranky and tired, and he was still blue and still shivering and still cold to the touch.

so i called our amazing dr b, who is on call, and she sent us to the paeds ward at our local hospital for a sat and blood pressure check.

sats were fine (97%), bp was fine (113/59). and she checked his temp. (by now he was starting to feel a bit warm, but nothing too bad....)

underarm temp was 39.2C (102.5F). 

we went off to dr b's office, where he was very irritable, very lethargic, still pretty warm 20 mins after the tylenol at the hospital), and he was complaining that his pacemaker hurt.

so she checked his pacemaker, and yes, it hurt. and the zipper there, along with his G-tube scar were pink.

they're never pink.

so it was looking like there might be an infection in his pacer site. if that happens, it's bad, because those infections tend to spread quickly and if it gets into the pacer pocket, as you might remember, it's got a highway straight to his heart. we've been through this before, and it wasn't fun, to say the least.

off we went to emerg in london. dr b called cardio and gave them a heads-up. she spoke with the NP who was quite concerned (!!) and said that they would need to do a blood culture, and a urine culture (because it's asher, and he has a long, complicated history. urine cultures are now routine for trips to emerg for him).

we were taken right in, and the doc assessed him. yup, he's sick. so he called cardio.

who sent the resident.

who called cardio.

who came down.

and assessed a sleeping and suddenly febrile asher (as in, 20 minutes earlier he was perfectly fine, playing and sitting at a delightfully normal temp. suddenly, he became flushed and warm and curled up on my lap and fell asleep. all that happened in the space of 5 minutes). his temp was back up to 38.7C (101.6F). cardio poked the pacer site, and asher winced and whined, but did not wake up. asher always wakes up for this sort of thing. the cardio poked his pacer, checked his liver, looked in his ear, so yeah, there were a lot of opportunities for my littlest man to wake up. 

and he didn't.

so cardio ordered an ECG. which asher slept through.

and then we were taken upstairs to the cardio clinic for a quick echo, just to check pump function. asher woke up as i put him on the bed, and i gave him the advil our nurse had provided. cardio gave him a tootsie pop, and did the echo, which was fine. then he gave asher another tootsie pop. and he said, "well, his heart is fine, so i think it's just a virus. you can probably go now, but check what they say in emerg."

the doc came over and said that since the chest and abdominal xrays were fine, and the echo and ecg were fine, we could go.

now, at this point, i was not aware of what the NP had said, but rest assured, when i informed dr b that we were coming home, she said, "did they do bloodwork? how was it?" ummm... "they didn't do any bloodwork."

"WHAT?!?!?!?!?!?!" quoth dr b.

it was ruled viral and we were sent home... without bloodwork. no CBC, no culture. both of which are just standard procedure when asher's in emerg.

now, don't get me wrong. i'm quite happy with them not poking my boy and hurting him like that. he's tired of being poked, and i don't like it, either. but um... bloodwork would have given us some answers.

and because the symptoms came on so quickly...

and that has happened before...

in october 2007, for example, when asher had sepsis...

do you kinda think some bloodwork and maybe a culture would be asking too much??

this morning, asher still has a pretty high fever (39.5C, or 103.1F, which is pretty close to his febrile seizure threshold), but as long as the tylenol is doing its thing, he seems ok. fever comes down (he's still warm but not too bad), and he's in a better mood and tormenting poor little Mouse), so right now i'm not overly concerned. it may, in fact, "just" be viral and he'll pull through in a few days.

but still. an important test was not done.

so, i'll admit, i'm a little torn. cardio checked him out as thoroughly as they can, which frankly, is huge. the NP even said that tests were needed. and i think we're at the point now that when tests like this are ordered, i get a little freaxious.

it's good that they took this seriously and did something, so i'm not complaining about that.

but the bloodwork...

or lack thereof...

that worries me a bit. and frustrates me a lot.

i'm almost to the point of moving to another city so that we're closer to SickKids and another children's hospital. don't worry, there are a lot of things keeping us here, and i have to think about the entire family, not just asher. and our paeds can order bloodwork etc here if she wants and i have no issues driving to toronto for cardio if i have to, so we likely won't be moving any time soon... but the idea is there, and it's being considered. i'm just getting to frustrated here. i don't know what to do, frankly. i just don't know...