Friday, February 25, 2011

asher prayed this week, "God, i want to be your personal penguin."

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.

Wednesday, February 23, 2011

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????"


"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.

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

Saturday, February 19, 2011

on chest infections and immunology...

i just realized today that the last post here was about asher being sick, and i kind of left you hanging with that. my bad. so here's what you need to know.

he's better now. a few days of antibiotics cleared it up quite nicely, and although he's puffy off and on now, he's much better. so that's good.

and this week was our semi-annual immuno appointment.

i was all set to tell them that there's obviously nothing wrong with his immune system, since he's in school full time and the flu and chest infection were really the only things he's caught, and really, who doesn't get the flu or a chest infection in the winter in ontario, right? so he's fine and we're done, thank-you very much.

anyway, we went for the appointment, and the fellow came in. he asked a lot of questions like "has he had any weird rashes? any skin absesses? how long did it take him to get over the flu? what was the infection treated with? has he had this? has he had that?" oh, and the famous, "have you been to genetics?"

sigh... genetics...

now, immuno has been nagging me about genetics for 3 years now. they are convinced that asher might have DeGeorge Syndrome. i am convinced that he doesn't. wrong kind of heart defect, wrong kind of kidney issues, non-congenital feeding issues, he has chromosome 22q11 (the absence of which is an important marker of DiGeorge), and unless you count severe cuteness as a facial deformity, he doesn't have that issue, either. the only thing that's right is the type of immunedeficiency. so i don't think he has this particular issue. and really, what can genetics do? nothing. so why bother??

but i have tried this argument with them for a couple years now, and they're still nagging about it, so i tried another angle this time.

"well, i'm not currently planning on having anymore kids, so... yeah. we're not going. if i change my mind at any time, then we'll go. but the way things stand right now, i don't really see the point."

"oh. well, if you're not going to have any more kids, then there's really no point. no problem."

then on to the physical exam. he checked asher's ears, nose, and throat. then he laid asher down to check his stomach. he's feeling around and poking around and he says, "does that hurt?" to which asher replies, "nope. it doesn't hurt."

so, curious, i peaked around him and looked where he was checking. and laughed a little bit. and said,

"oh, yeah. i forgot to mention. the hard lump by the scar on his stomach... that's his pacemaker."

"oh, good! i was wondering what that was!"

and we laughed.

well, the fellow and i laughed. asher just laid there and asked about stickers.

so then doc came in. he complimented me on my boots (suede leopard print with 4" heels. yes, i rawk!! haha) and said this,

"well, his lymphocytes are low, but they seem to be working well enough. it could just be that he is at the very bottom end of normal for that, we're not sure. whatever it is, it doesn't seem to be a problem for him right now. but i think we need to continue with yearly monitoring in case it becomes a problem down the road at some point. how does that sound?"

what can i say? i agreed to that. because he actually gave me some information that i can use. for three years now it's been, "i dunno. see you in six months." instead, he told me the situation, and recommended yearly monitoring. i can live with that.

so now i have to find a planner for 2012, and learn what i can about lymphocytes. fun times! haha

Tuesday, February 8, 2011

and now for something completely different...

no goofiness or reflections today, i'm afraid. sigh...

for the last few days, asher's been coughing pretty badly. wet and crackly, and he's been pale, but it wasn't too serious. just a cough. i figured it was a little cold and it would go away.

it didn't.

in fact, it got worse.

today is his second day home from school. he hasn't been able to get a good sleep for the last couple nights, his heart has been hurting/burning, and he's very snuggly and cranky.

today, he was also puffy and blue.


so, we went to see dr b this morning. at first, asher didn't want to go, but wanted to see his BFF B at the hospital. then he wanted to see dr w. i had to literally pull him into dr b's clinic. sigh...

but once she came in to see him, he answered all her questions and breathed deeply and coughed when she told him to, and in the end, he was diagnosed with

a nasty chest infection.

she put him on amoxil for 10 days (anyone else would have gotten 7 days, but it's asher, so it's 10). i'll be getting that filled while i'm at work this evening, and we'll get him all fixed up and better for his immunology appointment next week.

(oh, yeah. we see immuno at sick kids next wednesday. i'm not expecting anything to come of it. in fact, i hope they'll just discharge us, since if he truly were immuno-compromised, he would have gotten way sicker way more often since starting school. but that's just my opinion here.)

anyway, right now he's lounging on the couch with his transformers pillow, monkey blanket and Chickie. he's pretty blue and puffy and short of breath right now...

ugh. i hate it when he's like this.

please pray/cross crossables/send good vibes that the antibiotics will do the trick and he'll be back to his usual spunky self in no time, with no nasty complications or trips to emerg/cardio. if anything does happen, though, rest assured, i'll let you know.

Monday, February 7, 2011

NNNNNNNNNNNOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! a true story.

so i was getting asher into his jammies tonight, and he...


took his nose off.

and then dropped it.

well, i'm not too proud to admit that i. freaked. out. i mean,


i looked everywhere!! under his foot, up his sleeve, in a book...

but it was gone.



"Asher!!!" i cried, "you need your nose!! help me look for it!!! i can't find it!!!!"

and he laughed. "mwahahahahaha!!!" (ok, maybe i imagined the evil laugh... but he was definitely laughing at me.)

"nosey!!" i wailed. "i can't find you!!!! sneeze if you can hear me!!!!"

but then i realized...

"but... but... you can't hear me!!!!! because you're not an ear!!"

and i cried a little bit.

and asher laughed a lot bit.

and then

and then

he pointed out...

that his nose was still on his face.

{hangs head in shame}

Friday, February 4, 2011

an open letter to my sweet, sweet Asher.


oh, my sweet boy, i just love you so much.

i love your smile and your belly laugh and the way your eyes twinkle. i love your crazy hair and your goofy sense of humour. i love the fact that you're the "little spoon" at bedtime when we cuddle. i love our "travelling kisses" and how i don't know where you came up with that name, but when i kiss you on the cheek, you wipe it off and rub it on your chest and say "de butterflies are in my heart now, mommy." i love your hugs, or rather, i love how you run up and launch yourself at me and grab onto me and squeeze every bit of love in that heart of yours into my open arms... or my thigh... whatever you can reach at the time.

i love your strength. i love your courage. i love that you have survived so much and you carry on with so much light and joy. i love that you learned to say "guten tag" to dr w, and that you were thrilled to know that Kraftwerk (your favourite band) are german, too.

and as much as i hate to admit it...

i love your scars.

honestly, littlest man, i think they're beautiful. they tell a story. they tell your story. each scar, from the tiniest IV scars on your hands to the zippers all over your torso, each one is a badge of honour from yet another battle you survived.

but oh, my littlest man, i hate


that you have had to go through all of this. the surgeries and the appointments and the caths and the tests and the IVs and the intubations and the broken ribs and the admissions...

i think of your broken heart,

and my heart breaks.

i know all this is hard for you. believe me, i know. i've seen it in your eyes. i've heard it in your voice.

i'm glad you're so strong. and i'm glad you know that mommy is always right there with you, fighting this horrible battle alongside you. and when you're tired and weak, i'll fight for you. i promise.

but that being said...

i've told you before... during a couple brutal admissions... sigh...

if you ever get too weak and tired...

and you just. can't. do it anymore...

i'll understand.

i've had to let you go so many times already. it's not right. no one should ever have to let go of the child they brought into this world. but i've done it. i've handed you over to strangers, and ultimately, i have handed you over to God.

the thought of losing you haunts me more than you will ever know.

the thought of losing you hurts me more than you will ever know.

i don't want to lose you.

i don't want to lose you i don't want to lose you i don't want to lose you i don't want to lose you.

and honestly, the way you live your day-to-day life, i probably won't any time soon. and that makes me happy. that heals me and holds me and carries me through. and i know that it does the same for you.

you're a beautiful person, little man. you're like... gloopy globs of glitter glue smeared across the shiny side of crumpled tin foil. that's how sparkly and shiny you are. you're the painting i hang on the fridge, the stickers on your shoes, and the night light that scares away the monsters under the bed.

please stick around for a long time...

because those monsters under the bed are nasty.

Tuesday, February 1, 2011

CHD. a most beautiful gift.

yes, you read that right.

CHD is the most beautiful gift.

now, don't get me wrong. i invented the word "freaxious" for a reason. it's how you feel when you agree to an experimental shunt being placed in your newborn's heart. it's how you feel when you consent to strangers freezing your baby to death so they can slice and dice his heart. it's how you feel when a doc says, "on paper, this will work." it's how you feel when a cardiologist says, "i'm frightened now, to be honest." it's how you feel when your child turns blue and grey for no apparent reason. it's how you feel when a doc says, "yeah, this can't wait. i'll see him in my office tomorrow."

so, yeah, sometimes (ok, a lot of times) CHD really, really sucks.

but then again...

when i had blithe, i missed her first steps. she'd been cruising around and using chairs to walk for so long (literally, months!!) that it occurred to me one day that she was walking, and she had been doing this for days, and i hadn't even noticed when she started. (yes, bad mom, i know. haha)

but here's something:

i missed asher's first steps, too. same deal: he'd been cruising on furniture and playing with blithe and bram at the coffee table and holding on to his little riding car for a few weeks, and one day it occurred to me that he wasn't using anything else to walk anymore. he was just toddling around with his little backpack and laughing and babbling away. i have no idea when he started walking.

but my point is... asher walks!!!!!

here's something else:

so, asher doesn't eat much. he'll eat the inside of his sandwich, or half his banana, or drink some of his milk...

but look:

asher eats. he'll eat the inside of his sandwich, or half his banana, or drink some of his milk!!!

i know we, as moms, tend to complain about dirty laundry scattered across our 4-year old's bedroom floor. it's annoying. i mean, seriously, how hard is it for them to put their clothes in the hamper?

but CHD makes me stop.

and look at the dirty laundry scattered across my 4-year old's bedroom floor. and smile. because it's not all that hard for him to put it his clothes in the hamper.

in the grocery store, when he's throwing a tantrum because i won't let him sit in the basket of the cart, but (terrible mother that i am) i make him sit in the seat so that he doesn't run off and so that i'll have room for the groceries, i get frustrated with him.

but CHD makes me stop.

and sit him down in the seat of the cart instead of the basket. and smile at my own frustration.

in the hospital cafeteria last week, everyone saw two little kids dancing.

my friend and i saw dozens of little miracles in those two little kids dancing.

asher's got crazy hair and a wicked short temper. he shrieks and only dogs can hear him. this morning, on our way to his classroom at school, he cried and told me that i'm mean and i don't like him anymore because i didn't zip up his coat when we left the office. yesterday, he threw a dinky car across the living room. on saturday night, he turned grey in his sleep.


last week, asher got a hair cut, and he looks so grown up. and he got a time-out for yelling at me. and he shrieks when he's happy. this morning, he went to school. yesterday, he was playing with dinky cars. on sunday morning, he woke up.

yes, thanks to CHD, i live in fear of the day a cardiologist discusses turning off asher's pacemaker. and thanks to CHD, my baby's torso is covered in scars. and thanks to CHD, i worry that i'll brush off the wrong symptoms because, meh, i've seen him worse.

but thanks to CHD, i breathe through the tantrums. i enjoy walking him to his classroom. i live for half-eaten lunches and pictures on the walls (literally, on the walls... he isn't always a fan of paper).

asher should be dead 15 times by now. because of CHD. this disease has brought more pain and fear and suffering into our lives than should be allowed by nature. but this disease has also brought more miracles and love and life into our lives than should be allowed by nature.

today is the first day of CHD Awareness Month. so i wanted to focus on the good that has come our way because of asher's heart. it's too easy to get stuck in the crap, to focus on the surgeries and the meds and the appointments and the complications and the fears and the dread and the anxieties and the nausea. and yes, i'll be happy when CHD doesn't exist anymore, or when the course for HLHS is no longer "palliative" (meaning, "let's try to keep him alive as long as possible, but it's still terminal."), or when everyone i know and everyone i have yet to meet gives money to CHD research, or when no more families lose their babies to the most common birth defect, or when CHD no longer kills more children than all childhood cancers combined. i will be deliriously happy when that happens.

but in the meantime, CHD has taught me this:

CHD has taught me to enjoy life. to cherish the little things. to see the bigger picture.

CHD has taught me

to live.