the long-awaited update...

yeah... sorry that it's taken so long to update here... i don't really have a reason, other than work and um... well... i kinda forgot. {hangs head in shame}

but here's what i know you're dying to know... the details and results of the CT scan. sit a spell, gentle reader, and let me tell the tale.

on the morning of the scan, blithe and bram stayed home with their new babysitter, a really lovely girl i work. she's an absolute sweetheart, and the kids adored her. seriously, for the rest of the day, all i heard was "we had so much fun! can she come over again???" i'm not joking. i have since promised the kids and her that i will be calling her again.

it's nice, you know, this whole "having a babysitter for the kids" thing... i've never really had a regular sitter for them, which, i'll admit, has probably led to a lot of isolation for me over the last year, especially. now, just knowing that there is someone i can call to watch my kids... a weight has been lifted, let me tell you.

once she arrived, asher and i left for the hospital. en route, he said from the backseat, clear out of the blue, "mommy, when i was blue, i was a smurf." he decided that, since he's any blue sometimes anymore, he will be called "half-a-smurf." i love his sense of humour. the fact that he has been through so much, and can laugh and joke about it... to me, that demonstrates so much strength and resilience, and a spunky, slightly mischievous sense of humour. totally (albeit relatively) normal sense of humour for a 4-year-old boy.

we arrived at the hospital, and the nurse in the clinic was surprised by how co-operative he was for the blood pressure and sat check. (she had never met asher. haha) and off we went to the CT department.

to wait.

for about three hours.

with a 4-year-old boy.

who hadn't eaten since the night before. (they were going to anaesthetize him for the test.)

but he was a trooper, and only asked a couple times for something to eat. meanwhile, he played and chatted and read a book and was very well-behaved.

when his name was finally called, we headed back, and he chatted with the nurse, and pushed open the heavy doors into the lab. as soon as he saw the CT, however...

he ran behind a door and cried and refused to come out. it took a lot of coaxing, but in the end, i picked him up and laid him, literally kicking and screaming, on the table. i tried to comfort him, but that was difficult, and frankly, they needed him to scream like that to help breathe in the gas and get him to sleep. to be honest, i wanted to cry, too, but i couldn't...

anyway, the test only took a few minutes... but it felt like an hour. i wanted to vomit as M and i sat in the waiting room. then the nurse came out and said, "asher would like his soother. he's quite adamant about that." by the time i was allowed back to see him, he was wide awake, his sats and heart rate were "asher perfect" and he couldn't find his flip flops. he also thought that the bandage in his elbow was just something they gave him for being good, and he didn't want it taken off. apparently, he has never clued in that a cotton ball with tape is the sign of an IV. haha

ok, cut ahead to tuesday morning. the kidley-winks came with us for the follow-up with the respirologist, and our social worker met us in the clinic, as well. she had offered to come for support. it was great to have her there.

ok, ok, i'll get to the test results! sheesh!!!

so, doc came in and we talked for a minute, and then she said something that i had hoped she would say:

the obvious markers of plastic bronchitis were not present. in fact, the top portion of his lungs looked great! there was some yuckiness at the bottom of his lungs, but that doesn't lead her to plastic bronchitis. her words, "it's probably not plastic bronchitis."

ok, yes, it's not a definitely "no." but!!! it's not a definite "yes," either. so i'll take it!! {happy dance}

however, all this being said, there is a sadder development in asherland. he has started having accidents. not just once in a while, either. we're talking, 3 or more a day, and overnight. he told me that he doesn't remember how to go potty anymore. now, i know that's not entirely true... he does go running to the washroom sometimes... but not always. and he's too embarassed to tell anyone he's had an accident, so on top of being wet, he also ends up with terrible "diaper rash," for lack of a better term. so today, we ended up doing something i haven't done since early march.

we bought pull-ups. :(

he asked to wear them, and he even picked out which ones he wanted. there are moments when he really wants to wear them again, and moments when he doesn't... so we've reached a temporary arrangement, where he'll wear the pull-ups overnight, and during the day, he'll have to either run to the washroom or tell someone if he has an accident.

i hope i'm making the right decision here. i'm not entirely sure. i'm trying to do the right thing, but it's such a tough call... he's having accidents because he's upset from all the appointments and tests over the last couple months (yes, the accidents have been going on since june. :( ), but what if taking this step upsets him further?? i don't know... hopefully this is just a temporary set-back. i talked to him about it tonight. i reminded him that he's a big boy and he's been through a lot. i told him that having accidents isn't a sign that he's a baby or anything. it's just a sign that he's made it through some scary things, but he'll get through it and it'll be ok. he picked out the pull-up he wanted to wear tonight, and was so proud of himself when he put it on without me, so i'm hoping that's a good thing... and taking this one day at a time. tonight, this was the right decision. it might not be right for us tomorrow, but it is for tonight. we'll get through this.

the other kids are being so great with asher about all this, too. blithe helped him to reach the package of pull-ups off the shelf, and bram has been relating to asher all day with his sweet little, "i always had accidents when i was your age, too, asher."

meanwhile, please hold us in the Light. we're all elated about the CT results, so give thanks with us about that. but if you would continue to pray for emotional healing for asher, and patience, understanding and wisdom for me, that would be very much appreciated. thanks so much.

and one final thing: if you want to follow asher more closely, including "as it happens" quotes and antics and cuteness, but also "in the moment" prayer requests and thankfulness opportunities, please join his group on facebook, Blue Like Me.

don't know why it's taken so long to update here...

maybe because it's all just so "meh"... not bad, per se... more like... um... wow. "meh" really is the best word. go ahead, say it out loud. you'll understand when you hear it.

on tuesday, asher stayed home from school because he wasn't 100%. other than a cough he's had for the last few weeks (yes, he still has it, and it's wet and gross sounding and it just seems to be getting worse, actually), i couldn't quite put my finger on what was wrong... he was just off... his colour wasn't right, his mood wasn't right, he slept in, i don't know... a bunch of little things that added up to me keeping him home so i could keep an eye on him.

we had to get some milk and eggs, so once blithe and bram were on the school bus, asher climbed into the stroller and we headed off to the store.

we decided to get a quick little bite to eat from the coffee shop first, though. he picked out his muffin and headed over to the table. and sat down. quietly. with his head on the table.

i got my coffee and our muffins and sat down with the littlest man. we munched, we chatted, we people-watched, we turned blue... well, ok, he turned blue. i watched.

and called our paediatrician.

and off we went to her office.

where she assessed him.

(the deets: BP was 100/50, which is weird for him; liver was large and 3 cm down; and his colour was "asher pink" to grey with blue undertones. yeah. lungs were wet and crackly, and he had a murmur.)

see, since he's been refluxing almost constantly for the last several weeks, one of the concerns was the possibility that he has been aspirating (stomach content/juices going into his lungs). granted, it seems somewhat unlikely, since his throat has been working so well for so long now, but he has quite the history with this sort of thing, so it needed to be investigated.

so, she sent us to emerg for sats, chest xray and ecg.

which asher did himself. no, seriously. he stuck out his finger for the sat probe (92% in triage, up to 95% before we left), attached his leads for the ecg (yes, he knows where they all go), and in xray, he hopped up onto the stool, arranged the lead apron, sat tall and still and took a deep breath without being told, then turned sideways and put his arms up for the second picture. all without being told. no one could believe he was doing all that. i said, "when you see his pictures, you'll understand how he knows all this." and they did. it's not often our local hospital sees a 4-yo with that much extra hardware in their chest.

Asher and Farkie Malarkie, both gowned and waiting for x-ray.

in the end, it was decided that he probably had "viral bronchitis" and we were sent home. a long day... for nothing, basically. :S

and speaking of long days... we had cardio on thursday.

it was the usual: pacemaker, ecg, echo, doc.

everything was uneventful. asher was paced throughout the appointment, and when they tested his heart during the pacer check (basically, she turned it off for a moment), his own heart rate was 60. that was his active heart rate, after running around and playing for half an hour. yeah. no wonder he was pale!! and no wonder he has a pacemaker! haha

k, so the pacemaker is working properly (no comment) and still has 8 years left in the battery. he's also about 75% paced (75% of his heart beats are initiated by the pacer).

now, because i know some of you are wondering... here are his vitals, etc:

• BP was 117/65 in his left leg, and 99/64 in right arm.
• sats were 94 to 95%. (asher's norm is 96 to 98, so this is lower than usual but only marginally so.)
• HR was 80 to 86, paced.
• liver was still low (3 cm) and enlarged.
• no mention of a murmur.

when doc came in, she said that he's doing "ok" right now. she also said that, since he's had his "fontan palliation" (anyone else wanna vomit at that term??? i know it's true, but she usually just calls it the fontan. {wave of nausea}), as long as function is good and the pacer is working, he'll be "ok" and "i looked at his echo and everything seems to be fine, no coarc or leaking and function is good. basically," quoth she, "he's doing as well as we can expect at this point. but you know, the fontan is palliative. but any problems that come up will be slow to develop, which will give us some time to deal with them. but right now, he's doing as well as we can hope for at this point."

k, all of that is true.

and all of that is good news.

but um... it's just that... usually... she puts it all very positively. "he's had the fontan, therefore he is doing very well. i'm happy with him. we'll see you in 6 months." in all the time i've known her, i've never heard her use the word "palliation" or say "as well as we can expect"... i don't know... yes, it's good news... and yes, all those phrases and words are true... 

maybe it's just that... it's one thing to know those things, and it's another thing entirely to hear the doc say them...

and when you're trying to ignore your child's odds, the last things you want to hear are the words "palliation" and "as well as we can expect." 

i'm trying not to get too upset by it. sure, it was pretty rough on thursday. but i handed it over to God and i'm now feeling a lot better... just holding the truth of it all, instead of the pain that truth causes... 

but some days i feel like the clock is ticking, you know? and thursday was one of those days, i guess. that's probably why it's taken me so long to post any of this... but on the other hand, i know it's all true, and really, he is doing "as well as we can expect at this point," so i cling to that truth, and if/when anything else comes up, we'll deal with it then. meanwhile, i'll enjoy that asher has spent the last week eating (a delightful change!) and even in the heat, he's doing "as well as we can expect."

maybe it's just that i'm sick of docs and i'm sick of cardio and i'm sick of tests and i'm sick of hospitals. and i'm sick of asher being so comfortable with it and i'm sick of asher doing his own ecg's and i'm sick of asher sitting so nicely for xrays and i'm sick of seeing asher lie still for echoes and i'm sick of seeing him with leads and a blood pressure cuff. 

it's weird... i'm not actually feeling as down as this post seems to imply. i'm just really, really tired of heart stuff, you know? and really, it was a "nothing" week, even though a bunch of stuff happened... so what if he's back to "asher pink" and not actual pink lately. i've seen him worse colours, to be honest. it's the humidity that's doing it, i'm sure, since, frankly, i don't like the humidity, either, and i wilt just a little bit during a heat wave, too, so really, i don't think it's really anything to worry about. i don't like his colour, but he's doing ok, so i'll just let his mood be the deciding factor. if he's his usual spunky self, then i won't worry.

and lately, he's his usual spunky self. so i'm not worried. 

surrendering is NOT the same as giving up.

oh, my sweet, sweet little asher...

by now you probably know that, if he's not already failing, he's at least "flirting" with it.

and as you can probably imagine, i hate it.

i love my littlest man. but just last month i was reminded of something:

kids with HLHS have a 70% chance of surviving to 5 years.

and asher is already 4.

now, i know, statistics are not a death sentence. i know. i really do. but...

asher's HLHS is pretty much as bad as it gets. and he "should" be dead 15 times by now.

the other day, when we went to see our amazing dr b, i already knew what she was going to say. i was hoping for an ear infection or bronchitis or a nasty cold or something, but i knew. i memorized that list of symptoms when asher was four weeks old. i know what to look for, and i knew what i was looking at.

i also know about the possible ischemia, i'm watching and waiting for a heart attack, i'm pretty sure his pacemaker isn't working properly.

but the moment dr b uttered the words "congestive heart failure," it was as if someone kicked me in the stomach. i wanted to vomit. i wanted to cry. and i was just. so. tired.

call me crazy, but i don't want my precious little man to die. i don't. and i can guarantee that anyone who has met him feels the same way. he's just too amazing, too sweet, too funny, too loving, too.... asher-ish for that. i want him to grow up and grow old and have a dozen healthy kids and a hundred grandkids and a thousand great-grandkids.

but that 30% haunts me...

and yet, i know that God specifically designed asher's heart this way. i don't know why, but i know that He did.

so how do i reconcile this mother-love/fierce determination to see my child grow up, with God's will?

um... i don't know.

quite a while back, i was in a small group. and we were talking about surrender. namely, surrendering our baggage to God. here is what i said:

my son has half a heart. he's been through too many surgeries, too many infections, too many hospital admissions. he has too many doctors. and yet, i know that this is God's plan for him. and so, because of that, i have surrendered asher to Him. whatever He chooses to do, whether it's to heal asher completely, whether it's to take him from me, whether it's to keep him here and not take away this illness, i have accepted and will continue to accept that that is God's will. but in the meantime, even while i wait to find out what God has planned, i have to deal with all of this. i have to take asher to appointments. i have to watch for symptoms. i have to sign consent forms. i have to sit with him in ICU. i have to feed him according to his special dietary needs. i have to deal with his condition now, even though i've handed him over to God.

and that's that, i guess. i've surrendered asher to his Maker. thankfully, his Maker has decided that asher will stick around, though for how long is anyone's guess. but i still have to deal with all this crap.

i read something interesting today:

faith isn't necessary when we know the outcome. faith is what gets us through the uncertainty.

yes, i'm exhausted. yes, i am completely sick and tired of heart stuff. yes, i hate it.

no, i don't know how long he'll be here. no, i don't know if he'll ever get a new heart. no, i don't know what's going on in that wonky little heart of his. no, i don't know if he'll pull through this latest bout of failure-ish. no, i don't know how bad it will get, or if the few doses of HCT will do the trick.

i just. don't. know.

and i hate that.

but.

when i stop, and i mean

when i stop

and listen

and look

God is there, doing something. i don't know what He's doing, but He's in there.

and i'm ok with that.

(ish.)

but i accept that God sees the big picture and i don't and He knows what's best and i don't and He loves asher waaaaay more than even i ever could.

if He chooses to take asher at some point, i'll hate it. but i'll accept it. i'll weep and sleep and grieve and mourn and stare off into space because that's the only thing i'll be capable of doing (can you tell i've mourned him a few times already, that i'd have an idea of what i'll be like?)...

being asher's mother isn't easy. being asher isn't easy. but you know what?

every night, when asher says his prayers, he asks God to "make me feel much better." how does this 4-year old know to ask God to do that? how does he know that God can do that? and how does he not stop asking for relief despite the fact that it doesn't come and he still has chest pain every day and he still gets tired and short of breath and overloaded with fluid and he still can't keep up with blithe and bram?

somewhere along the way, asher has learned to trust God.

and somewhere along the way, asher has learned to wait patiently for God.

and it still hurts and he's still scared and he's still going for therapy on tuesday and he's still sick...

and he's still trusting God and waiting for God and looking to God for what he can't do himself.

i'll admit, sometimes i get caught up in the horror of HLHS and CHF. sometimes i mourn my child who is still here but may not be for much longer. sometimes i just hold my breath waiting for God to do something, anything.

but most of the time, i just continue to watch for symptoms and take him to the docs and give him his meds and feed him fatty foods and keep on keepin' on...

and i wait for God.

and you know what they say about waiting for God:

But those who trust in the Lord will find new strength. they will soar high on wings like eagles. they will run and not grow weary. they will walk and not faint.  (isaiah 40:31)

last night i just wanted to cry when i thought about this latest bout of failure. and i almost cried when i told my friend about it this morning at church. but i also know that God is in control. God has a plan. and God hasn't forgotten about us. so we're just waiting for Him.

and tonight, sure, i still want to cry and vomit when i think about it all. but i'm not so tired. and i remembered to pack his meds tonight when he went to his dad's. and i'm going to make an appointment for him to see paeds again, and i'm going to take him for play therapy on tuesday. we're going to keep going, because we're waiting for God and trusting God, and that gives us the strength we need to get through today. today we ran and didn't grow weary. tomorrow we may walk and not faint. our pace isn't the fastest and we don't actually know where we're going, but we'll just keep on going.

and for today, that's enough.

sigh...

a little bit about asher first, then moving on to bigger, more important things...

asher's amazing paeds dr b talked to dr caldarone the other day. she asked him whether or not asher's chest pains could, in fact, be growing pains. dr b figures, he put all that stuff in there, so he should know, right?

he said, "have they looked into the possibility of ischemia (lack of blood/oxygen to the heart muscle)?"

"they checked his CAs in an echo, but that only shows the beginning of the vessels, so it's not conclusive. and since these pains only happen when he's active, it's got me wondering... but doc said they can't do a stess test on a 4-year old..."

"but they can do a stress echo. that's easy to do." (a stress echo is where they give the patient a dose of dobutamine to increase the heart rate, replicating the cardiac effects of exercise, and they do the echo/US to see how the heart functions under stress.)

so dr b is going to be speaking with london and yes, dropping names (she asked dr c, "can i tell them i talked to you?" and he was cool with that) and asking about a stress echo. from what i have seen of london, i don't think they like to do DSEs (dobutamine stress echo), but i could be wrong, but we may be facing a trip to toronto's clinic.

dr caldarone pointed about that it is not uncommon for fontans to develop ischemia, which is why it came to his mind right away and he is concerned. ischemia can be asymptomatic (no symptoms), or it can lead to things like chest pains and heart attacks and all kinds of things.

one more quick thing about asher: i will be taking him in for another session of play therapy this week. since he was taken to emerg from school the other week, he has regressed in a few ways and has decided that he just wants to be a little boy forever because he's scared of growing up. just a month ago he was all about being a big boy, but now... not so much. i'm just waiting for an appointment time.

but in happy asher news, he is now working on potty training. he's actually out of diapers now. (ok, it all started because i ran out of diapers and only noticed right at bedtime one night, and since i refuse to take the kids to the store at 8:30 at night, we had to make do.) but he's been in underwear for a little over a week now, and he's doing great!!! he's dry overnight, and he's usually dry all day, with only a few accidents all week. he's actually becoming quite proud of himself!!!

so now that you're caught up on asher, we're switching gears a bit to something far more urgent and important.

Asher's favourite "best," his friend B, is back in hospital. asher and i met B and her mom in hospital last spring, and we have become very close. B is not a heart kid, but is extremely complex and fragile. and this admission... yeah. it's bad. terrifying. i cry whenever i think about what's going on, actually. here is the latest, from her mom's FB status:

It has been a long night - B has not turned the corner yet. I have not seen her blood results yet today, but through the night the bleeding started. I will spare you the gory details, but this is "the" next step in the DIC - the only way to treat it is to eliminate the cause, and that is taking its time. Please continue to pray, cross your crossables, whatever you can do...

if you're interested in reading more, to better understand what is going on, please check out her blog. this is a terrifying admission. right now, Brigid needs all the prayers she can get, as do Allison and the rest of the family, not to mention the docs who are trying to figure out what's going on so they can treat her, and the nurses who are caring for her. please please please pray, send vibes, cross crossables... whatever it is you do, please do it. and please spread the word. this is a wonderful family, a dear friend of mine, a beautiful little girl who is asher's "best," and this is absolutely heartbreaking and terrifying. please pray, spread the word, add them to your prayer lists, your church's prayer chain. thank-you.

i'll try to keep you posted on B. suffice it to say, this illness is not getting better yet. she needs a miracle. thank-you.

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...

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...

as 2010 becomes 2011...

i'm thinking back over this past year.

and, um, yeah.

wow.

it began with an ironic twist. having told asher that i refused to bring in the new year in the hospital with him, i ended up bringing in the new year in the hospital... by myself. haha and thus began a(nother) gut-wrenchingly, heartbreakingly, freaxiating, spellbinding, awe-inspiring, breathtaking year.

in january, we finally tasted freedom. asher's vagus nerve had healed and had been eating on his own, sufficient to sustain him, for a couple months. he had even been taking his meds by mouth. and one day, in the middle of the month...

asher walked into the living room and said,

"mommy, i not need my tube anymore. you take it out now."

he sat so bravely as i pulled it out and covered up the site. he smiled and showed off the bandage to blithe and bram. and then he went to bed. and in the morning,

the hole had closed. and all that remains of that (looooooooong) period of asher's life, the only reminder of that struggle,

is a scar on his stomach. and the memories. and the feelings of relief and pride at having overcome such a huge struggle.

strong work, littlest man. {{hugs}}

and then came the spring.

the fontan. the chylothorax. the bradycardia. the fainting spells. the pacemaker. the infection. the fat-free diet. the uber high-fat diet. UTI. (i was going to link to everything here, but it's too many posts, so i'm just going to tell you to read the posts from march, april and may. click on the months here, if you're interested.)

ok, so the UTI and FTT and "butter and whipped cream diet" was at the end of may. and since then...

asher has been out of hospital.

asher started school!!!!!

asher learned to write his name.

asher has lived the life of a perfectly normal, stable, beautiful boy.

aka, tasmanian devil.

with a battery pack.

and so, as this year comes to an end and a new year begins, i hope and pray that our new-found normalcy and stability continues. but, if it doesn't, i know that we will continue to trust and rely on God to give us what we need to get through the challenges we face, whether they are health issues, financial issues, or other unforeseen issues that can arise in day-to-day living. and i hope and pray that you will also know a year of peace, joy, laughter, love, and beauty.

even if it's a wonky kind of beautiful.

happy new year, everyone!! thank-you so much for your love, support and prayers over the last year. let's all try to be safe and joyful this year, shall we?? :)

the times, they are a-changing

well, asher is stable now. it has been over 5 months since his last admission, and even last month when he had that little "hiccup" he came out of it quickly and on one less med (leaving only aspirin!). so, yeah, he's stable now. kinda weird, no?

not that i'm complaining.

anyway, since asher is doing better now, i knew that it was time for some things to change around here. namely,

i can get a job.

so last week, i began sending out my resume. and on wednesday this week, i went out around town, handing out resumes and applying for jobs. i wasn't picky. so out i went.

the first place i went to, i asked if they were hiring, and lo and behold, they were! in fact, the woman asked me right then and there if i could come in for an interview the next morning.

that's right, folks, the first place i went to invited me back for an interview.

so i went for the interview the next morning. my first interview in about 9 years. and guess what!

i got the job!!!

so i went for my first day today. i'll admit, it was a bit weird. and i'm exhausted. but it was good. and i enjoyed it. yes, at the end of my shift i was very ready to go home. i haven't had an actual job since my contract with the Canada Games ended in august 2001, so this whole working thing will take some getting used to. but i'll manage with all that.

as for the kids... yeah, it's going to be an adjustment. for all of us. the hours at my new job aren't great, so there will be a lot of child care involved, but we'll get used to it, we'll adjust, and we'll get through. and we'll be ok. blithe prayed last night,

God, please bless mommy in her new job. please be with her and help her, and don't let them make her work too hard, because i don't want her to work too hard. please be with her on this journey. and please be with me and bram and asher on this journey, too.

yes, those are her words. we're all excited about this new turn in our journey, even though it's scary. but blithe knows... God is going through this with us, and we're not dealing with it on our own. so we'll be ok. i told the kids last night, "we'll get through. we'll adjust, and we'll do what we have to do." and bram agreed just as loudly, shrill-ly and enthusiastically as you would expect. asher just kept playing with chicky and elmo-y (who is not, in fact, the Elmo, but rather a yellow bunny). blithe said from her room, "yup! because that's what the heywood family does, right, mommy?"


anyway, i thought i would update you on the goings-on over here, even though they have nothing to do with asher's health. but it's all part of our journey as a family. if you wouldn't mind, please pray for us in this new part of our journey. it's unfamiliar territory we're treading here, so any prayers, good vibes, crossed crossables would be much appreciated.


and since you're praying/vibing/crossing...


don't forget to keep praying for shawna and her family. they need it.


also, little ella in australia, who had a stroke the other night. she is still in the hospital. and not only is it a hard time for her, it is really hard on her mom, shannon. she is heartbroken. please continue to pray for ella, shannon, and dad neil.

prayer requests

i'm rallying the troops tonight for a couple friends who need prayer.

Shawna
i've mentioned shawna before. and once again (or rather, still) she needs prayer. the complications in her pregnancy are getting more complicated. it's very scary. i won't go into detail, but it's terrifying. please pray for her, the baby, her husband, their seven children, and her mother. she has a couple appointments in toronto on thursday. please pray.

Ella
sweet little ella is a heart baby in australia. her mother, shannon, is on my facebook. ella had a stroke tonight/tomorrow morning (time differences). please pray for ella, shannon and her husband neil, the docs... ella had heart surgery on 26 october, everything went well, and she was home three days later. but now... yeah. please, please please pray for her.

i'll try to keep you posted. meanwhile, please continue to pray. thank-you.

and then, of course, God weighs in...

so, i'm sitting here, crying over the last post...

and there comes that still, small Voice.

when i shared at church in september, i talked about how God has been my Refuge throughout the "asher journey." and while i have been crying this morning about blithe and bram, i was reminded that

i don't see the bigger picture, but God does, and He is in control. that's really comforting, because i know that i don't need to control everything, and i don't need to know the future.

and as i was thinking about that, another thing came back to me:

... and God promises that if we're really looking for Him, we'll find Him. and i do! He's everywhere in this journey. and so, in those times when it's dark and scary and it feels like God has forgotten us - because those moments happen; it's not all sunshine and rainbows - i can look back and see that God was there and there and there and there and there, and that gives me the courage to not look forward - because i can't - but i can look around and look for God in the current situation.

so now i ask myself...

because this feels like one of those times "when it's dark and scary and it feels like God has forgotten us"...

if i look back, will i see that God was there?

so i'm looking back,

and yes. i can see that God was there.

He is there in blithe's compassion. He is there in bram and asher's friendship. He is there in their play. and yes, He's there in their arguments, because those are normal and therefore a gift. He is there during our storytimes and mealtimes. He is there when they hug me and tell me they love me. He is there when they hug each other and tell each other "i love you." He is there in the paid bills. He is in the pantry right now, in the form of beans and rice which we will have for supper. He was in blithe's room last night, while she and asher cuddled together all night. He is there in school with each of them right now, allowing them to learn and hang out with friends and enjoy their day. He is here with me right now, holding me and reminding me that, as i said in september,

i can look back - and i do look back - and i can see that, ok, God was there and there and there and there. ok. God was there, so He'll be here.

and then i continued,

and then i can, not look forward because i don't know, but i can look around at what's going on right now.

so, yeah, He didn't give me a crystal ball, and i still don't know what the future holds for my children (all of them), but i don't have to. God has a plan, God knows what He's doing. i don't have control, and i don't see the bigger picture, but that's ok, because God does. and as long as i trust Him, we'll be ok. we'll get through. maybe a little worse for wear, but on the other hand,

much more beautiful

because it's His Love and Beauty that shines in my kids right now. sure, it's a tough life we have in a lot of ways. but He never promised that life would be easy. but He always promises that He is with us throughout our lives. so yeah, i don't know what the future holds. but i know God is holding us now, and that's all i need to know. (although a little "heads up" would still be nice, i'm not gonna lie. {wink})

WHA-?!?!

today we went for our regularly-scheduled cardio appointment in london. and all in all, it was... um... interesting. but in a good way, don't worry. {wink}

first, we went in for the pacemaker check. no problems there. awesome.

then, the ECG. which asher did himself. he got the leads, attached the stickies, and put them all on his chest, legs and arms. sure, the tech told him where to put them, but he put them on. you know you spend a lot of time in hospitals when... haha

then the fellow came in. he's working toward becoming an adult cardiologist, but to become an adult cardio, you have to do a two-month rotation in paeds because, in the words of a fellow from a couple years ago, "some of these kids grow up, and we need to be prepared for when they do." frankly, i prefer buffo's explanation: "if neither of us [paeds cardios] is available, the adult docs can come and check him out, and they'll have some idea of what they're dealing with." a much more palatable explanation, if you ask me (and yes, i'm choosing to ignore the idea of all paeds cardios being unavailable). anyway, dr chew asked a bunch of questions and listened to some of my answers, and listened to asher. and before you ask, yes, he heard the murmur, but said that it wasn't very loud, so it's not too concerning. um, ok... anyhoo...

then he went and got dr w, our cardiologist. she came in and checked asher out, and said that he looks pretty good, and since HCT is for failure, she's comfortable with dr russell's decision to stop it. i told her that dr russell had said that, if he got too puffy without it, he might be one of those kids who needs it every other day, and that since asher, having missed two doses, is now getting pretty puffy, i'm going to do the every-other-day thing. so she looked at him and said, "yes, his eyes are looking a little puffy." and she didn't argue with my dosing decision, so i'm going ahead with it.

and let's see, what else?... hmm... i was sure there was something else to report about the appointment... what was it again?... oh, yes, i remember!

ASHER DOESN'T NEED TO GO BACK FOR SIX MONTHS!!!!!!!!

this, my friends, doesn't happen in asherland... at least not in cardio province. and yet... here we are!!!!! is anyone else doing a happy dance right now, or is it just me??

so we got back in april for an ECG, echo, pacemaker check, and holter. ugh, the holter. the bane of pacer-life. i hate holters. pain in the arse, they are. but, ah well. so it goes. i do what i have to do, and hey, it's not for six more months, so really, WHO CARES?!?!?!

after the appointment, i had to rush to make it to an appointment for myself. i've been having some health issues of my own lately (nothing too major, but needs to be dealt with... blerg). so we flew back to st thomas, i dropped asher off at his dad's, and raced to my appointment. i got there a few minutes late, and then waited for the doc to arrive. once she did, she was very nice, and well, i'm heading back to her office on tuesday for an ultrasound, bloodwork results, and hopefully, a plan.

so when you're praying next time (and whenever you think about it thereafter), please thank God that asher has improved so much in just a few days. sure, the murmur is still there, but cardio isn't concerned about it, so that's wonderful! and then, when you're done with that, please pray for me. i'll admit, i'm a little freaked out right now, so please pray that i'll have peace and that doc will have some answers for me. also, please continue for my friend shawna, who is having some pretty major health issues in and of themselves, but now she has also been diagnosed with some complications with her pregnancy. please, please pray for her and the baby. it's a scary situation, so please pray for her, the docs, her husband and their children, including the one on the way. thank-you.

some musings here... nothing urgent about asher. just me and my faith journey. so don't feel you need to read if you don't want to. LOL

a quick heads-up before you read: please don't misunderstand me, here. i'm not out to criticize anyone's faith, i'm not trying to say that i'm right and "they" are wrong ("they," for lack of a better term). right now i'm thinking about my own faith, and merely using other people's as a foil for my own. nothing more. also, i think i ramble a bit... ok, a lot. sorry. again, don't feel that you need to read this post if you don't want to. i'm just thrashing my way through some faith-type questions. ok, you may proceed to the rest of the post now, if you so choose.

i've been reading a few other blogs lately, and i find myself wondering today...

about my faith in God...

not "do i have faith," because i do... but maybe more like... i don't know...

here's the thing:

i'm sure there are people out there, probably who read this blog, who pray that God will heal asher, that he'll have a whole heart and he'll be fine and grow up strong and healthy.

but i'm not one of those people. i asked God for that "big H" healing, and He said "no, that's not the miracle I'm going to do here." so i don't ask God to heal asher.

i've also accepted the 70% chance that asher will grow up. i live in the 70%, but i still hold that 30.

i don't see asher's complications and bouts of failure and infections and weird what-nots as being the work of satan, as some people see illness. i see them as the natural results of HLHS and a compromised immune system and mildly wonky kidneys and epilepsy. i see them as semi-expected (albeit loathesome) bumps along asher's path. and i see them as opportunities to look for God (and find Him)... which i do.

i don't know... is there something wrong with me, that i simply accept that this is the way it is? that i don't see evil forces at work when asher gets sick? and i'm being honest here. sometimes i look at others' faith and go, "why don't i believe like that?" and even, if i'm honest, "should i believe that way?"

but every time i start to think that way, i hear a still, small voice that says, "your faith is just fine. keep this faith."

maybe i'm tired right now, and that's why i'm wondering. i mean, just this morning when i posted, i asked specifically that you not pray for a miracle, but rather that asher would continue to show these symptoms tomorrow and they would find something.

again, please don't get me wrong. i want asher to be healthy. i want this to pass. i want this to never, ever happen again. i want him to grow up and be strong and not have to worry about high-fat diets, and high-iron diets (sometimes his haemoglobin is a little low), and high-protein/carb diets (he might be hypoglycemic, on top of everything else), and low-sodium diets. i want his heart - this heart, the heart he was born with - to carry him through a long life. i want this heart to stop failing. i want him to get married and have children and grandchildren and great-grandchildren. i want him to stay out of hospitals - even out of emerg - for ever, going back only for yearly check-ups. i want him to hate echoes and ECGs and BP cuffs and sat probes and stethoscopes. i want him to say, "who's dokker caldarone?" instead of "i not want to see dr russell. she boring. i want to see dokker caldarone." (believe it or not, that's a direct quote from this morning.) i want him to react and to tell me when he's dizzy, short of breath, refluxing, because i want those things to be rare anomalies in his life instead of the norm.

but i know that this isn't likely going to be the way it is. his heart will continue to give him problems. he will always have to be careful. he can't live a fully normal life. sure, he'll come close, because that's the type of person he is. but he won't be able to race motorcycles (he told me the other week that he wants to do that when he grows up). and he can't go on roller coasters, and his endurance won't be like other kids (no soccer or cross-country for him). there are days i wish i didn't know what it was like to get bad news from a doc. i wish i didn't have the number for SickKids memorized (sadly, i do, and it's in my phone just in case i get too flustered to recall it). i wish he didn't know that emerg = popsicles and stickers. i wish i didn't know what each cardio's specialty is, and that i didn't have favourite emerg docs.

and yet... this is our reality.

and i accept it. i roll with it all.

and i still maintain that it is God who set this journey for us, who "allows" these things to happen. this is how i see CHF, etc. it's like the weather. God set up these systems to function a certain way, and so they do. sure, there's crappy weather systems like hurricanes and floods and ice storms and droughts and so forth. but they're called "natural disasters" for a reason. it means that these are simply the natural way that weather works sometimes, even though they're harsh. well, it's the same with CHF, for example. asher was given a heart that is not designed to sustain life. and even with all the surgeries, it is still pretty much par for the course. when you have half a heart, you will run into trouble from time to time.

but i see God in these things. God can be and is right there, even in the middle of "natural disasters." i don't believe that God is some distant "intelligent creator" who made these things and then sits back and watches how it all plays out. i believe that God is real, present, and personal. i believe that He is active in asher's journey. i mean, really, how can i not believe that, when i know that asher should have died so many times already?? i see God everywhere along this journey, so i simply cannot brush Him off and say, "look at the crap He left us with."

but... since i believe that God is active in asher's life... i don't know... what does it say about my own faith when i don't ask God for huge miracles anymore? what does it say about me that i don't give satan credit when asher gets sick? i mean, other people seem to see the devil at work in HLHS, so... shouldn't i?

and yet, here's the thing: i am actually cool with my faith. i enjoy it; i have peace and assurance of God's presence with me when we walk through the valley of the shadow of death. and sure, it may not work for everyone, but it works for me. i know that no two people's faith are going to look the same. my faith in God has carried me through some pretty dark times, and not just with asher, either. i don't know...

maybe i should just stop reading other blogs. (right. because that's gonna happen.) or maybe i should just accept my weird faith for what it is... a lifeline, a comfort... maybe a little off of the mainstream, but it gets me through the day.

i have accepted asher's condition. and i trust God completely with my littlest man's life and "health." when God said "no" to the healing, i had one request: "You made him this way, so You sustain him this way." and so far, he has. i can (and do) give credit to the docs and surgeons and nurses and dietitians and so forth and to asher himself for getting us through CHF and sepsis and feeding issues and illnesses and surgeries... but i also know that, if it isn't God's will for asher to get through all those things, he won't.

please don't think i'm ok with the idea that my son won't grow up. i'm not. it breaks my heart every time i think about it. (so i don't think about it very often, and it's one reason why i just focus on the day we have instead of some horrible, heartbreaking, unknown future.) i want my baby to grow up, and i will fight like hell and do everything i can to make sure he does. yes, i'm aware of that 30%... but i live in the 70. that's the number i cling to. that's the number i remind myself of. when everything seems to be going wrong and my baby is dying and i'm scared out of my mind that i'll lose him, that 70% helps me to breathe one more time... and once more after that... and once more after that.

i almost wrote there, "God is in that 70%." but then i realized... that's true... but...

God is in that 30%, too.

which i guess leaves... if my math is correct (and math was never my forte)... and i think i'm right here...

0% room for satan, if God is in the whole 100%, right? is that weird? does that make sense to anyone else? am i just burying my head in the sand about the devil here? i mean, so many other people see him at work in things like failure and sepsis and CHD in general. is it strange that i don't?

i cling to two verses for this journey, and they kind of answer what i'm trying to thrash my way through here today. so i'll leave you with these verses, to ponder and enjoy as much as i do:

I praise You because i am fearfully and wonderfully made;

Your works are wonderful, i know that full well.

                            Psalm 139: 14

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

                            Jeremiah 29:11

God aka our Refuge

i was asked to share a little bit about the "asher journey" this morning in church. and when i say "a little bit," i mean... i was limited to 4 minutes!!! gah!!!! how to squeeze everything i wanted to say into such a short time?? but i managed... i think... i kind of ignored the clock. anyway, it was an interview, and while you all know the answers to questions 1, 2, and 4 (tell us about your situation; what has your journey involved, and how is asher now?), i want to share my answer to the third question.


what are some practical ways in which you have accessed God as your refuge during your journey?


it's an interesting question; i don't usually think about it so specifically. i just kind of do it without thinking about it quite like that. but i guess i would say that, for starters, as a single mom, i have been gifted with a lot of time alone. so i can spend that time thinking, praying, journaling, reflecting... that time with God allows me to rest, even in the scariest times.

the second thing comes from a rather morbid conversation i had with a dear friend when asher was about six months old. asher was very weak, very sick, and i knew in my gut that he was going to die in the OR. my friend said to me, "yeah, he might die during the surgery. but he might not. you don't know. you have no guarantees with him, but you have no guarantees your other kids will grow up, either. they're fine now, but things can change. you just don't know what will happen." and believe it or not, that conversation, as gut-wrenching as it was, opened my eyes to the reality that i really don't know. i don't know why asher was made this way, i don't know what the purpose is, but God knows, and that's enough for me. i don't see the bigger picture, but God does, and He is in control. that's really comforting, because i know that i don't need to control everything, and i don't need to know the future.

finally, when asher was two months old, he was in the hospital. he was pretty sick, but no one could figure out what was going on. so one night, i asked God to heal asher. you know, the "big H" healing. and as clearly as i hear you today, i heard God say, "no, that's not the miracle I'm going to do here." so i've gotten to spend the last 3.5 years looking for the miracle. and God promises that if we're really looking for Him, we'll find Him. and i do! He's everywhere in this journey. and so, in those times when it's dark and scary and it feels like God has forgotten us - because those moments happen; it's not all sunshine and rainbows - i can look back and see that God was there and there and there and there and there, and that gives me the courage to not look forward - because i can't - but i can look around and look for God in the current situation.

there you have it, folks, for those of you who missed it this morning. it was a great morning; i talked with so many people after the services, including a single mom with three kids (now grown), and a heart family with the father and son with Tetralogy of Fallot. it was a wonderful morning, and i'm very, very grateful for being given the opportunity to share some of this story. thanks for interviewing me, ron, it was a great experience! 

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

no, i hadn't forgotten about you... i just *really* don't want to post about this...

yes, i know, it's been over a week since i last posted here. and i know a lot of you are going to be thinking, "wow, things must be going great in asherland!" sadly... not so much.

after the marathon day in paeds, emerg and cardio last week, things went from bad to worse. and i mean, w.o.r.s.e. asher told me on saturday, "mommy, i dizzy again."

note the word "again." isn't that fantastic.

when i asked him about that, he said that he'd been dizzy at the hospital. which meant, that all day thursday, he was dizzy and just not telling me about it.

and he was dizzy again on saturday.

i had been suspecting since friday that he might be dizzy, since he was stumbling like he was drunk while running around. nothing major. just semi-losing his balance.

then, on saturday morning, he fell down in the driveway.

and hit his head on the ground.

so when i say he "fell down," i don't just mean that he tripped and scraped his knee. no, that would be normal, right? oh, God, why oh WHY can't he just trip and scrape his knee?!?! just once! that's all i ask. just a scraped knee. put a little band-aid on it and he's good to go. nope, not my kid. a scraped knee would be too simple.

he was running around, laughing and playing with blithe and bram and then all of a sudden, BOOM! he's dropping to the ground without a word. and when i picked him up, he told me he was dizzy when he fell.

the same thing happened later in the day at a store. he was running around (i was trying to corral the kids, but i was distracted and they were having fun so they were having none of it), and BOOM! down he went, hitting his head on the counter.

of course, i dropped down to his level, got him to sit up, and i asked him, "asher, were you dizzy before you fell just now?" "yes, i dizzy." and i got a little nauseous.

"asher, did your head feel funny before you fell down?" "yeah, like dare cotton balls in my ears." and i got a lot nauseous.

"asher, did everything go black right before you fell?" he answered quietly and avoiding my gaze, "yeah."

"asher, when you fell down this morning, did everything go black?" "yeah."

does anyone else want to vomit right about now????

so our paeds, the fabulous dr b, sent us to emerg in london, and let them know we were on our way. we were there for three hours, while they monitored him, did a chest xray and an ECG. they wanted to see if he would do it again. of course, he didn't, because when he fainted during the day, he'd been running around and playing, and he wasn't doing that in emerg, just sitting on his bed.

needless to say, they didn't find anything, so they sent us home.

cut to this week. dr b has called our toronto cardiologist, dr russell and told her about the fainting spells and dizziness. "oh, dear, he shouldn't be doing that," was her response.

so that's where we're heading this afternoon. you'll note, half-way through what was supposed to be a little mini-vacation for the kidley-winks and me.

in the meantime, i've been doing some reading and thinking (you're not actually surprised by that, are you?) and i have three ideas about what could be causing these symptoms:

1. pacemaker malfunction. this would be the "simplest." i put that in quotes because if it's malfunctioning, it would not be firing when he needs it to, and i'm sure we all remember that now, asher's heart doesn't like to beat on its own very often (4 out of every 5 heartbeats is prompted by the pacer). so if it's not firing, this is a major problem, and would possibly (read: probably) require a replacement generator. which means, you'll note... surgery.
2. scar tissue in his pulmonary veins. you might recall that in may 2008, asher had patches put in the veins which bring blood from the right lung to the heart, because they were too small. you may also be aware of asher's love of scar tissue. yup, this kid of mine loves to put scar tissue - and lots of it! - on anything put in there by someone other than God. which is a lot. so, my thought is that asher has a lot of scar tissue built up around those patches, and that's blocking the blood from returning from his right lung. this would cause the pressure in his right lung to increase to an alarming degree, and since blood cannot get to his heart, it cannot get out to his body, which then causes dizziness, light-headedness and fainting, especially during periods of activity when the body requires more blood, not less. if this is the case, it will require some sort of surgical intervention to treat it.
3. the arch. we have known about the abundance of scar tissue in asher's aortic arch for over two years now. but because of the nature of the surgery, they didn't want to intervene unless/until it was causing symptoms. (if there's no symptoms, it means it isn't having an effect on the body. once symptoms appear, the narrow arch is now affecting function and blood flow and all that.) interestingly, when i mentioned asher's BPs to our nephrologist the other day, the first thing out of his mouth was, "is his arch narrowing?" {wave of nausea}if the arch is narrowing further, it will mess up his blood pressure and decrease blood flow out of the heart, which will cause dizziness, light-headedness and fainting. if the problem is the arch, they will have to operate and soon, and that surgery is horrific.

right now, i'm hoping for a simple pacemaker malfunction. but honestly, my money is on the arch.

so today, we're cutting short our mini-vacation to return to london cardiology for a pacemaker check and a holter (a 24-hour ECG). not exactly my idea of a great way to spend a friday afternoon, but we gotta do what we gotta do.

so, yeah. asher has some pretty major symptoms right now, and they're not good. but we're working on it, and we'll get it figured out quickly, and then they will be dealt with quickly. because a fontan with a pacemaker simply should not be fainting. it just. shouldn't. happen. so this is very scary, and i don't mind admitting that i'm feeling pretty freaxious lately. so please hold us in the Light. and please pray that the docs figure out what the problem is.

funny little God-moment this morning, though. as i was reading my Bible, i came across a verse and, well, let's just say that i've claimed it as my own for now, and it's helping (or at least, inspiring me to not skip cardio this afternoon).

Wait patiently for the Lord.
    Be brave and courageous.
    Yes, wait patiently for the Lord.
                                 Psalm 27:14

an email i just sent to someone...

hi,

i was journaling tonight, and got to thinking (as one is wont to do while journaling, i suppose), and i wanted to thank you for writing this book and for telling our story.

a couple weeks before the fontan (so, mid-february), i asked God for the chance to tell asher's story. now, i don't know where you stand with the whole God thing, but i believe. and frankly, as soon as dr c mentioned this project to me post-op, standing there in the hall on the 2nd floor, iknew this was what i had asked for. (go ahead and ask him how i responded. i guarantee it wasn't what he was expecting!) as it is, asher's blog is read all over the world (literally, the only continent unaccounted for in asher's readership is antarctica! how cool is that?!), but this project is just amazing. do you realize what this will do for heart parents???? they won't be alone anymore! they will know, and i mean know that they are not the only ones whose kid has a heart this wonky, and that knowledge brings more comfort and encouragement and life and peace and breath and light than you can even imagine! and healthy-heart people will learn to cherish and embrace and love every breath, every heartbeat. my desire for this project is that people will learn that every heartbeat is an absolute gift. no, wait. that's not enough. it's a miracle.

do you remember when we met? we were standing in the atrium near starbucks, and you asked how asher was doing. i said something about his heart beating only 30 times per minute. that is not only really slow, that is nearly stopped. one beat every two seconds. count it out. i'll wait.... [hums a little tune] ... for perspective, put your fingers on your stomach, just below your ribs, and press in slightly. you'll feel your heartbeat. you'll notice that it's going faster than asher's was when you and i met. and you are an adult, so your heart rate should be slower than a 3-year-old's. but here is what that episode with my littlest man taught me:

there is a miracle every second. the trick is to look for it. but if you look for it wholeheartedly, you will find it. today, i can look at asher, and see with my own eyes 80 miracles in any given minute. literally, 80 tiny... and astonishingly huge!.. miracles every. single. minute.

and that is what i want people to take away from this story. that miracles happen. all the time. sure, it may not be those big "why does this child have a left ventricle all of a sudden????" kind of miracles. maybe those miracles happen, but then they're done. it's the smaller, quieter miracles that break your heart, heal your heart, take your breath away, inspire you to breathe again... and teach you to live.

and every split second of asher's life is one of those quiet, simple, overlooked miracles. they are overlooked by so many people, including me on occasion, even now. but that, the overlooked-ness of it all, is a miracle. i can take every heartbeat for granted. because just a few short months ago, i was holding my breath waiting for the next heartbeat. every heartbeat mattered. sure, they still do... but they're even more beautiful now because i don't have to think about them. "what's his pulse?" "i dunno, but if he's still breathing, it's at least 80." it is only when you have lived through the terror of uncertainty that the unknowing becomes beautiful.

and asher's heart is now even more beautiful to me than i ever imagined possible. and that keeps me going. every day.

and that knowledge, that there is a little boy out there who has fought tooth and nail till he was blue (or grey) in the face to make it through all that shit... that is going to inspire. that is a gift that none of us can even comprehend yet. and that is what this book will give to someone. 

so, thank-you. it's amazing what you're doing with asher's story. just the fact that you're telling it, or even, now that i think about this, that you are aware of him at all, is a gift. and this is going to enrich some poor, freaxious mother's life, and make her heart go up in ways that neither of us can ever know.

thank-you. truly, from the bottom of my heart, thank-you.

"false" alarm

asher came home from emerg, so that's a good thing. :)

all the tests came back negative, other than some sugar in his urine. but they checked his blood sugar and that was fine, so we'll have to follow up with paeds in a few days for another urine sample, but other than that, everything was fine.

doc and i suspect we may have just picked up on something while it's still brewing, so we'll all be watching asher very closely over the next few days. this has happened before, that i picked up on something and we were sent home only to be admitted a couple days later with something weird. right now i suspect it might be another UTI or a migraine, but we'll have to wait and see. because really, it could also be nothing. which i would prefer, to be quite honest. it would be so nice if the little man could get a break for a while.

so please hold asher in the Light over the next few days.

and one more note: remember shawna and ethan, my friends from SickKids (in the list of kidlets at the end of the post, this is the second little guy named ethan; his momma shawna is a CHD warrior)? they have a big meeting at SickKids tomorrow. please hold them all in the Light. this will be a difficult meeting, potentially with a lot of tension and disagreement. what they all need is patience, grace, discernment, wisdom, humility, and to remember that they all want what is best for ethan, but that what he needs most is co-ordinated, compassionate and co-operative care. so please pray/cross your crossables/send good vibes/whatever you do for this meeting tomorrow. also, please remember shawna, as she has a lot on her plate right now. she's a strong woman, but some prayers never hurt anyone.

how we got here

well, asher's still sleeping, so i have a bit of time, so i thought i'd fill you in on the events of the last couple days while i have the chance.

asher came home from ed's on thursday prevening (that's around 4:30, for those who don't watch big bang theory... sheldon's right, it's the perfect term, lol). apparently, asher had barely eaten all day. now, just so you know, he hasn't really been eating much since the fontan at all, but especially since he came off the fat-free diet his appetite has almost entirely disappeared. he barely eats anymore, which is concerning since he's usually a bottomless pit, and when you're trying to pack on at least 5 lbs to avoid the dread "FTT" label, you need to EAT! but he hasn't been.

on thursday night, we had cheese pizza for supper. which he chose. which he barely touched. and by "barely touched," i mean that he took his piece of pizza, and then just left it. he didn't even take a bite. then he went to bed, having had some kool-ade and some water to drink. but that's it.

on friday morning, he had a tiny piece of cheese and a slice of ham for breakfast. then we walked the other kids to the bus, and when we got home, he climbed up onto my bed where i got him dressed, and then he just sat in my lap and cuddled with me for a while. normally i wouldn't complain about that, since he's usually a very active child and every second of cuddle-time is a treat for me, but he just curled up in my lap and rested his head against my chest and stayed like that for a while. so i started to get concerned, because at this point i'm usually chasing him all over the house and having trouble catching him (i'm not even joking. this kid is FAST!). but instead of playing, he wanted to watch a couple of the videos i posted here a couple weeks ago. after watching beaker sing Ode to Joy a couple times, and smiling at the swedish chef making hot dogs (asher's absolute fave), he literally just rolled over and fell asleep. this was around 10:15.

he never does this. i usually have to (almost) force him to nap in the afternoons... usually because i'm exhausted from chasing him all morning. so when he fell asleep mid-morning,

i called dr b.

i told her about his lack of appetite, that he has barely even been drinking lately, and she said to let him sleep for another hour or two and call her when he wakes up.

so he woke up around 1 (yes, you read that right, an almost 3-hour nap) and he looked... off.

his energy level was waaaaaaay down, the sparkle was gone from his eyes, and he looked, well... yellow. with a hint of grey. and his nose was blue.

so i called dr b, who said, "yellow?? that can't be right. take him outside and look at him again." so i did. and yup, yellow. with grey and blue undertones. isn't that swell.

she told me to take him to our emerg, since she's on call. she let them know we were on our way, and what his baselines are and about his colour wheel. so off we went.

when we got there, he just wanted to be carried (usually i'd be chasing him around the waiting room) with his head on my shoulder. at triage, his sats were 94% (he's usually 96-98%), his heart rate was 107 (usually he just rides his pacer; at most he's low 90s, even when active), and his BP was 79/52 (baseline is 120s/80s). and his colour? well... i'll get to that.

we were taken right in (which should raise the alarm right there, given that this was st thomas emerg) and put in a room and hooked up to the monitor. at this point, we were thinking it was dehydration and possible migraine. we had a chest xray and they drew bloodwork and started an IV for fluids. then he fell asleep. yes, you read that right, he fell asleep. he doesn't do this. ever.

when dr b arrived at 4, she came into the room, took one look at him and said, "why is he yellow?" "oh, you see it, too?" yeah.

i should mention at this point that the only other time in asher's life that he was yellow was when he was 8 days old and his liver had shut down. yeah. so we're not a fan of this colour. at all.

anyway, we were sent off to london by ambulance. on the way there,

the yellow disappeared, being replaced by a horrid shade of pale, still with the grey and blue undertones (which is an improvement over his usually; he normally is just blue and grey. guess he thought he'd mix it up a bit). but on the way... he started to get warm. like feverish. they took his temp and it was only 37.2 or so, but he felt like he was burning up. and he was still very lethargic.

into emerg, where his fever was even higher. cardio was consulted, but they were happy with the ECG from st thomas and the one done here upon arrival, so dr w is going to follow him closely this weekend, but she's ok with him for now. rhythm looks fine, so no huge concerns. it's just all the other symptoms...

they decided that the problem is likely an infection somewhere, and it's really starting to look like sepsis. so doc ordered two IV antibiotics: ceftriaxone and vancomycin. while the cef was running (this was the first one), asher developed a horrid red blotchy/mottled mess all over his torso. doc saw it from about 20 feet away, it was just. that. nasty. he told me that this can happen while vanco is running, but i told him that asher has been on both of these meds many, many times and this has never happened, so he was very concerned. he decided to throw some benadryl in with the IV, and that seems to have taken care of most of the redness. a few spots remained, but nothing major anymore.

eventually, his vitals stabilized. then the question became "unit or ward?" doc said that if he stayed stable like this, we would go to the ward, but if he destabilized again, we'd be going to the unit. thank God, he remained stable, so we're now on the ward.

we got to sleep around midnight or so, but asher is still asleep (he usually wakes up by 7:30 regardless of his bedtime). the plan for this morning is for more bloodwork, nasal and perianal swabs, and another urine sample.

but it's still really looking like sepsis.

they drew the culture in emerg and sent it off, so preliminary results should be back tonight. this will tell us if it is, in fact, sepsis. within a couple days after that, we would know the bug and which meds to use.

the theories about the source of sepsis? well, there's two:

1. spontaneous sepsis. sepsis usually happens when the blood picks up a bug from somewhere in the body and becomes infected. when asher had sepsis at 10 months, he had no other infections, so this is entirely within the realm of possibility again.
2. when i told emerg doc that asher's pacer site had become infected post-op in toronto, he became concerned. there is a possibility that there has been an absess in the pocket since then, just lurking, and now it's getting ugly. if this is the case, this is even worse than sepsis, because an infection in the generator pocket can shoot up the leads and go straight to his heart. and this is a distinct possibility, as well.

even if it is "just" a spontaneous infection, this is still terrifying. sepsis can lead to some horrifying complications, from toxic shock to endocarditis to heart attack to death. and this is asher, remember, so we're all bracing for some very asherish complications. (you know your kid is complex when he's his own adjective. LOL)

please hold us in the Light. pray, cross your crossables, light a candle, send good vibes, doodle a prayer... whatever it is you do, please do it now. we're all nervous and scared. he's pulled through sepsis before, but that means that he's had sepsis before, so we know what we're dealing with here, and it's scary.

my access to the internet is limited while here, but i'll do my best to keep you as up-to-date as possible. i will definitely post when the prelim culture is back, but the final report won't be ready for a few more days. we're here for a few days at least.

i don't have much time, so this will be a very quick post.

thanks, wen, for updating for me. but now i'm updating again.

forget what wendy wrote about dehydration and migraine. that's likely not it.

not by a long shot, actually.

it's looking like sepsis.

they've started him on two big antibiotics: ceftriaxone and vancomycin. when they started the cef, asher broke out into a horrid blotchy/mottled mess... which can happen with vanco, though i told the doc that asher's been on both these meds before and this has never happened. so they ran some benadryl through the IV and that seems to have taken care of most of the redness. there's still a few spots, but it's not nearly as bad as it was.

they've drawn a blood culture and sent that off. preliminary results should be back tomorrow evening, with the bug and med course mapped out a couple days later. until then....

we're admitted.

if asher's numbers stay the way they are right now, we'll be going to the ward. if he destabilizes again, however, it's the unit.

i'll keep you posted as we learn what's going on. the current theories are that it's either spontaneous sepsis like when he was ten months old (no other infections anywhere, just his blood, which doesn't usually happen, as sepsis is an infection that the blood picks up from somewhere else), or that there has been an infection and/or absess lurking undetected in the pacer pocket since april. that's possible, too. so who knows. when i know, you'll know.

please hold him in the Light right now. this is scary. thanks.