How CHD messes with your head... or maybe just how Asher does... hard to tell sometimes...

So, last night, asher was grey.

And i remembered another time when he was grey in his sleep.

Last spring.

When his heart rate was in the 20s and 30s.

As soon as i saw him, i flashed back to those nights. Those scary, scary nights.

Those freaxiating nights.

Those heartbreaking nights.

I didn’t think he’d survive long enough to get the pacemaker. I don’t think i ever put that into words, either spoken or in writing, but that’s what i was thinking at the time.

And so, when i saw him last night, sleeping, grey...

I thought about taking him in to emerg. Because... you know... what if...

His heart wasn’t beating fast enough...

But i looked at him, lying there, so grey, so peaceful.

Not short of breath,

Not sweating,

Not indrawing beneath his ribcage,

And rousing when i moved his arm.

And i thought... well, i can rouse him, so that’s good... and he doesn’t seem distressed right now, so that’s good...

But he is grey.

And he really shouldn’t be.

I called amazing dr b because, honestly, i didn’t know what to do. Should i take him in? Should i just brush this off? He can’t have a slow heart rate anymore. It will always be at least 80.

But then i thought... what if his pacemaker isn’t working properly???

But then, wouldn’t he be sweating? Or short of breath? And un-rouse-able?

But he’s so grey.

This is what this life does to a mom, after a while. He’s been through so much. And i’ve been through so much with him. and i’ve learned a lot. I’ve learned to listen to my instincts, but i’ve also learned all the clinical things to watch for.

So now, whenever he has a symptom, i begin to wonder,

Should i take him in for this? I’ve seen him like this before, and it was bad... but he doesn’t have any other symptoms. Just this one. So should i take him in?

I just don’t know anymore.

It used to be so easy. When he was very young, if he had any symptoms at all, even “just” a runny nose, i took him in. And they always found a problem. Which always ended up messing with his heart in one way or another.

See, he’s had all these symptoms so often, for so long, it’s gotten to the point where i’ve built up a tolerance for some of them. Even his colour wheel, i’ve become so accustomed to it... I can brush off pale (for a few days). I can tolerate blue. But any shade of grey makes me want to vomit. 

So what do i do? Do i listen to the same advice i gave my close heartmom friend, “better to be paranoid than indifferent, because the paranoid mom will be right once in a while.” But what if i’m reacting to something that really is nothing? And now that everything is different post-fontan...

What if i’m brushing off all these things, and they actually are something... but “i’ve seen him worse, so, meh.”

Sometimes, I don’t know how to tell anymore.

On the other hand, i’m tired. Maybe some rest. Or better (and more realistically) yet...

Caffeine!!!!

(have i mentioned i’ve become hooked on lattes?? It’s true.) 

would i have named my son *asher* if i ever thought he'd turn the colour of *ash*?

sigh...

that's right, folks. asher is, as i type this post, sleeping.

and asher is, as i type this post, grey.

he's not distressed or anything. in fact, his cheeks are nice and rosy and pink.

but the rest of his face...

nose, forehead, around his mouth...

grey.

and he has been for about 40 minutes now.

the first couple times i checked on him, i turned the light on in his room, and he didn't move. this time, i turned on the light and moved his arm off his face, and he grumbled and turned onto his back. so he can be roused, so that's a good sign.

but still...

he's grey.

but that's his only symptom.

{calls amazing dr b}

k, so it is now about 20 minutes after i started typing this post. i have (if you were paying attention, haha) called dr b.

some quotes from the conversation:

"your instincts aren't usually wrong, heather." "yes, i know..."

if you're concerned enough to call me, you're concerned enough to take him in.

k, i'm gonna say, wake him up, and if he pinks up, then he's probably ok. if he doesn't pink up when you wake him, you're gonna have to take him in.

so, while still on the phone with dr b, i checked on asher again. and he was pink...er. still a bit grey-ish, but not like earlier. so i (probably) won't be taking him in tonight.

that being said, i have to pop up to cardio on monday to return the holter. and i'm going to mention to someone that he was grey tonight. of course, dr w won't be in the clinic on monday, so pray/send vibes/cross crossables that dr r will be around, and i can mention it to him.

sigh.

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...

for the newer readers, "freaxia" is a horrid combination of fear, dread, anxiety and nausea. blech.

it's 14 hours till asher's cardio appointment.

and we weren't supposed to see them till april.

so, asher's got all these symptoms. now, i'm trying not to say "this is the problem"... even though i'm bracing myself. i mean, i remember paula quizzing me and insisting i learn this list of symptoms before taking asher home after the hybrid. i've been watching for these exact symptoms for over four years now.

and now i'm seeing them again.

i always feel this way before an "unscheduled" cardio appointment. you know the ones... you aren't scheduled for anything, but then the doc says, "why don't you just bring him in... let's get him in this week."

and for those of you who think that's fantastic, that we didn't have to wait...

here's the thing about health care in ontario:

if you can wait, you do. if you can't, you don't.

(and i'm not trying to start a debate about the healthcare system here. i'm just saying, that's the rule they go by.)

but here's what's really getting to me tonight:

what if they find something wrong??

or...

what if they don't find something wrong???

i know something's not right with asher lately. i could guess, but i'm not going to. i refuse to allow myself to do that. i simply refuse. because then my mind goes to all sorts of unhealthy places, and i just don't want to do that right now.

so, i'm trying to decide what's worse. i mean, if they find something wrong, that sucks, but they'll deal with it. and we'll get through it. but still... it means that something is wrong.

but if they don't find something wrong, then... what?

this, gentle readers, is what freaxia is all about.

and so, once again tonight, i am trying to breathe and smile/laugh my way through this. a close heartmom friend and i were chatting tonight and laughing about something, and it was good to distract myself, laugh at myself ("like, seriously?!?!" HAHAHAHA)... it took my mind off things for a while.

so, yeah. breathe. smile. hold it all in the Light. some ice cream doesn't hurt (esp if you've lost another 7 lbs, bringing you down to your lowest healthy weight ever). and smile. breathe. and then smile. and just for good measure, breathe some more.

and carry on.

well, today *could* have really, really sucked...

yeah, today could have been better on some levels... but it's nothing a smile and a giant bag of salt & vinegar chips can't fix...

tonight, i filled asher's dad (aka, ed) in on what the principal (mrs h) had told me this morning. at first he laughed (because yes, it is kinda funny...), but when i reminded him that asher accused someone of abusing him because he's mad at her and doesn't like her... he stopped laughing, and said he'd talk to him tonight. (i was working, so he had the kids this evening.) 

and i spoke with asher at bedtime...

i had told ed that the whole thing was a "secret" because asher didn't want to hurt anyone's feelings. so he and i each told asher that mrs j (the EA in question) had been sobbing in mrs h's office when she found out what he'd said.

when asher heard this, he became very sad.

so ed took the kids out tonight to pick up a gift for asher to give mrs j's baby (friday is the last day before her mat leave).

and when asher said his prayers tonight, he prayed, "dear God, thank-You for this lovely with me, mrs e, mrs b, mrs g (his EA, ECE and teacher), and please help me to cheer up mrs j."

tomorrow morning, i'm taking asher in to school, and he's going to apologize to mrs j for saying all this about her.

and we both told him that if he ever pulls this crap again, he's going to be in a ton of s*** trouble. (neither of us used those crossed out words... well, i know i tried not to. and i doubt ed did, either... but i know i was definitely thinking them. haha)

and let's see, what else happened today...

well... my rear tire blew on my way to work. literally, 15 feet from the parking lot. nice.

and then, in the middle of trying to give a customer her parcel, my system shut down. there was a message on the screen about a system error... and it just... shut down. and of course this is when everyone in st thomas decides to pick up their parcels. haha. well, it actually wasn't funny at the time. my system was down for at least 15 minutes. i still don't know what happened... but it would reboot, then shut down. then reboot. then shut down. i'm not kidding... this happened four times. and the line-up getting longer and longer.

sigh...

ok, yes, there was more that happened today, but i won't go into details... because my point, gentle readers, is this:

sure, you can't control what happens sometimes. you just can't.

but

you can control how you respond to it.

i'll admit, at one point this evening, i just wanted to cry when i thought about asher and the EA, and my truck, and a couple other things. and then...

a customer arrived, so i smiled and helped them out...

and suddenly, i didn't want to cry anymore.

yes, i was still thinking about everything that happened today. and yes, it's a lot of stress smooshed into one day. but...

i spent this evening reminding myself to breathe (i have a tendency to hold my breath when i'm stressed). and i smiled at my customers and joked with a few of them... and told my boss that i'll take any extra shifts she'd need me for over the next little while (thereby tackling two of the stressors at the same time)... 

and i remembered that i can't fix my tire when i'm working. and ed can talk to asher, and i'll take the littlest man to apologize to the EA tomorrow. and the computer (eventually) righted itself, and since ed and the kids would have to give me a ride after work, i'd get to see the kidley-winks tonight, and i don't have to pay for prescriptions so dr w can prescribe anything she wants on friday and i won't panic about the cost...

and i remembered to breathe...

and hold each situation in the Light...

no specific prayers. just holding them up. because i don't know how they should be resolved. i just want God to do whatever He's going to do, but keep us all alive in the meantime...

and you know... i got through tonight. and i'll get through tomorrow. and the next day. and the next.

it really is amazing what you can get through if you just breathe and have a little faith...

so much has happened since the last post... don't worry, some of it's great!

this is what happens when i promise to post more often. God hands me more to post about. haha so here we go:

yesterday morning, i checked my email for the eighth time randomly, and there was an email from DC. you'll remember that she is working on a book about my littlest man. she and i have spent many hours talking about asher's journey, and now that that portion of the research is done, she wants to get in touch with some of the doctors and nurses who have "played an integral part in caring for asher (and you)." so she asked me who she should talk to... (sorry, christyne... that should say, "she asked to whom should she speak." teehee)

which docs and nurses should she talk to???? here's the list:

• dr b, our amazing paediatrician (and dear friend)
• dr russell, our toronto cardiologist
• dr j, in london emerg
• dr g, in london emerg
• dr p, who is actually a paeds metabolics specialist, but was the attending in emerg that first morning when asher arrived.
• pepy and buffo. because you can't tell asher's story without talking to them.
• dr b, the toronto cardio who did all of asher's stents, some caths, and has been the attending on the ward for a few HSC admissions
• the first cardio we saw in toronto when asher was 8 days old
• dr f, asher's nephrologist
• dr a, who knows us very well. he got asher the GJ-tube, we've seen him in emerg, he's been the attending on the ward during admissions, he has sedated asher a couple times, i dealt with him in his administrative role... and the list goes on. (those of you in the know are peeing yourselves right now, aren't you??? HAHA)
• sarah m, the nurse who was there when asher first came to london emerg, and whom we saw in emerg several times, and who did her NP training in the cardio clinic, and who is now the enteral feeding NP. yup, lots of dealings with her over the years.
• Jenny and Paula, the single ventricle NPs at sick kids. they had our number memorized and would return my pages with just a "hey heather, what's he doing this time?" and a sigh when i filled them in.
• vicky and elaine, our home care nurses. they were amazing. and i mean, a. ma. zing. asher and i would both be dead if not for them. they were excellent at their job, and truly cared for us. they're both absolutely lovely, and asher's story is not complete without their input.

as i finished up this email to D, i realized that in calling all of them, she would run into a problem: patient confidentiality. which is a good problem, don't get me wrong. i'd hate to think that any random person could call up one of asher's docs and get any and all information they wanted. so hooray for confidentiality!! on the other hand...

it does pose a problem to someone writing a book about my littlest man.

so, i have been chatting with some london docs and sarah the NP to let them know about the project, and that i have no problems with them speaking with D. i also emailed dr f just now, and i spent some time this morning speaking with vicky, as well. i also emailed pepy and buffo last night, and as i type, i am on the phone paging the single vent NP on call (not sure if it's jenny or paula. haha) so that's that issue...

but, in a tangentially related note... 

when i popped in to talk to dr welisch yesterday, she asked how asher is doing. "well," i thought, "i'm just waiting for him to get bad enough to bring in, but he does have some symptoms, and she did ask and she is his cardiologist..." so i told her. i told her about the flu the other week, and the paleness and blue spells and puffiness and irritability, and she said,

"well, why don't you bring him in on friday and we'll do a quick check." [insert wave of nausea]

and of course, we book the appointment, asher comes home from school, and...

he's hiccupping.

"so?" i hear you asking.

well! those "in the know" about wonky heart and gastro stuff know that hiccuping can either be nothing... or it can be something. well, not "something" in and of itself, but a symptom of... wait for it...

reflux.

(and angina, but we're not going there right now.)

at first i brushed it off. i mean, sometimes i get the hiccups and i don't have reflux.

but then it happened again a little while after he had snack. so, i decided to just ask him how he's feeling. not lead him or put ideas in his head. just a little, "hey, dude, how are you feeling right now?"... you know... just to see...

and hoping it's nothing.

he said,

and i quote,

"not good, mommy."

[insert wave of nausea]

"what do you mean? where do you feel sick, sweetie?"

"my heart hurts, mommy."

[insert wave of nausea]

ok, so now i'm going to be a little more specific in my questions:

"does your heart feel tight? like it's being squeezed?" 

"no, not like dat."

"does it feel hot? like it's burning?"

"yeah. like it's burning."

now, ordinarily, reflux/heartburn is not a big issue. and a lot of heart kids (and adults with heart disease) have reflux. 

(ever wonder why, by the way? there's a spot at the top of the stomach, right where the esophagus joins to it, and it's called the cardiac zone. when a heart is failing or distressed or recovering from surgery, the heart muscle becomes enlarged, just like any injured muscle. when the heart becomes enlarged, it bumps up against this spot on the stomach and annoys it. the problem is, this spot is right beside the valve - or more correctly, the sphincter - that allows food etc into the stomach and then closes to keep stomach contents... um... contained... in the... stomach... wow, that's pretty redundant there, isn't it? anyhoo... when the cardiac spot on the stomach is being bothered, the sphincter there has a hard time closing properly, which then allows stomach contents to go shooting back up the esophagus. because stomach juices have a pH level of about 2 - it's a shockingly strong acid!! - and the esophagus is not designed to withstand that sort of assault, the acid burns the esophagus. and this happens in the vicinity of the heart... hence the term, heartburn. and there you have it, folks, Reflux 101.)

and so, ordinarily, i wouldn't be worried about reflux, even in asher. but... when i look at the other symptoms... yeah... i'm not freaking out... i wouldn't even say "worried," per se... but i do think i made this appointment with cardio just in time.

sigh.

and let's see... what else has happened today... ah yes!!

i spoke with the school's principal this morning, regarding the "incident" from friday. she has looked into it, and apparently...

the EA in question...

had no contact with Asher on friday.

other than in the afternoon when he saw her and flipped out. but she didn't deal with him in the morning.

but...

it turns out...

asher doesn't like her, and he's angry with her.

"why?" you ask?

because, you see, she takes him to the bathroom when she has him. and asher... doesn't always want to go to the bathroom.

and when he's irritable like this...

it's best not to mess with him, apparently.

because he'll tell people that you pushed him.

so, there was no incident on friday. but we think we have an idea about where this came from:

you see, when asher needs to pee, even if it's an emergency and his bladder is about to explode, he will take his sweet time getting to the little boys' room. he'll stop to chat with people, play with toys, whatever. but this EA at some point must have put her hand on his back and tried to guide him to the washroom... when he didn't want to go. and so, "of course," in his mind, this is pushing. 

and since he's mad at her, he told his own EA and me that he was pushed.

which, of course, leads to an investigation and all kinds of things.

sigh...

so, it would seem that my sweet little cherub... well, i'd say he still has a halo, but maybe it's a little tilted, dented and tarnished. haha-ish

so, asher and i are going to be having a little chat this week. because this behaviour is absolutely NOT OK. and yes, disciplining him is not easy right now... i mean, how do you discipline a kid who'll have a heart attack if he cries too hard?? but i'll figure something out, because this sort of thing cannot. happen. again. it just can't. 

so that's what's new in our little corner of the universe today... (hopefully) there won't be anything to report until friday afternoon after cardio. (but you know i'll post if necessary. haha)

k, it's been a while...

yes, yes, it's been a while, and i haven't posted a "real" asher update. so here we go.

a couple of weeks ago, asher was looking "off." he was pale, short of breath, sleeping more than normal... just not his usual self. so i took him to see our wonderful paeds, who checked him out, and...

his sats were 92%!!!!

this time last year, i would have been thrilled (and a little concerned) to see sats like that. but now?? post-fontan? now that all his blood goes to his lungs? um...

not so much.

his heart rate was also over 100. much higher than his norm, since he usually rides his pacemaker and his HR is 80 to 85. so that was concerning.

when she listened to his chest, she thought it sounded pretty nasty. so she sent us down for a chest x-ray, and when we got back up to see her, she had looked at it and she said it looked "yucky." yes, that's a technical medical term which means "not good." by this time, his sats were back up to a nice 96%, so that was better, and she offered to admit him, and it was tempting, but we decided that he would go home and come back to see her the next morning. she also ordered a nasal swab, just to check for viruses etc, and prescribed a dose of Tamiflu for the day, just in case it was the flu.

the next day, she gave the bad news that his swab was indeed positive for the flu, so it was tamiflu for the next 6 days.

he recovered nicely.

and i discovered something interesting: apparently, since i work at shoppers...

I DON'T HAVE TO PAY FOR PRESCRIPTIONS!!!!!!!!!

how awesome is that?!?! especially when you have one child who needs a week of tamiflu (at roughly $5 per pill), and i needed antibiotics and steroids to treat a bad case of strep (yes, my throat closed twice), and bram needed a new ventalin inhaler, some antibiotics and steroids to treat a super-bad asthma attack (an ambulance ride, chest x-ray, lots of steroids, sats at 88-93%, blue lips/eyes/nose/nails, and a ride in a wheelchair - the highlight of the evening for him, especially when he found out that asher has never ridden in a wheelchair!). yup, it's been a medically-eventful month around here, and would have been rather expensive, too, if i didn't work where i do. :)

but back to asher...

since he had the flu the other week, he... um... yeah... hasn't been great.

in fact, i'm kind of playing chicken with him right now...

for the last couple of weeks, he has been very pale, there's been the odd blue spell (as in... ahem... once a day...), and he's puffy, and well, a little irritable. it's not super bad right now, not quite at the point where i would take him in to be seen... but... i hate to admit this, but... yeah... he's getting there.

it's not the symptoms that are bothering me (entirely). it's the fact that they've continued for so long, without getting better. so expect an update at some point this week about a trip to emerg or clinic.

and there's another thing...

i got a call from the school yesterday, and apparently, there was an incident with one of the EA's (educational assistants). asher has his own EA who is with him all day, but there is another EA who covers her breaks twice a day. and yesterday afternoon, when she came to cover mrs e's break, asher got very upset and refused to go with her. he wanted nothing to do with her. so after some questioning, it turns out that something happened with her in the morning.

i won't go into all the details, but suffice it to say... that EA won't be dealing with asher anymore.

the whole thing was probably nothing, and she didn't intend to do anything. and with asher's increased irritability, it may be exaggerated in his mind. but the fact remains that it was an issue to asher, and it was enough that he got very upset when he saw her.

i discussed all this with the principal, and she will discuss asher's most recent cardiac status with all the EAs on monday and she will speak privately with the EA in question and find out her side. but mrs h (the principal) will make sure she understands that someone else will be covering mrs e's breaks from now on.

the principal also offered to report it to CAS, but i turned that down... initially. but when i questioned asher about the incident when he got home... he said "it's a secret" and initially refused to talk to me about it. frankly, that concerns me, and i'm now thinking of taking her up on her offer to report it. i don't want to put asher through any more, but seriously??? this is a medically fragile child with decreased cardiac stability, and someone who should have known better did something she shouldn't have. and whether it was intentional or not, i don't care. it shouldn't have happened. at all.

so that's the most recent goings-on in asherland. not a super-exciting post, but i thought i should get you all caught up.

i'll try not to go so long between updates from now on.

but since the universe doesn't revolve around asher and the rest of us here...

i'd like to ask you to pray for asher's friend brigid and her mom allison. brigid is in the hospital right now with sepsis, and on top of the usual sepsis issues, she is also struggling with some complications from the treatment. these complications are terrifying, and allison is very shaken by them. i won't go into the details, but it's scary. please please please pray/light a candle/cross your crossables/send good vibes for brigid and allison. they really need them right now. thank-you. and allison and brigid, i'm holding you in the Light, and i love you both very, very much.

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.