it's the afternoon of our resp appointment...

and here i sit, pretty sure of how i actually feel about it all.

i want to cry.

i know we needed to go. something isn't right and it needs to be investigated and what not...

so here's the deal:

it's not asthma.

it's not nothing.

apparently, i "said the right things" and doc believes asher has some kind of chronic bronchitis. the CT will give us a better idea what we're dealing with. then she added, depending on what the CT shows, we may need a bronchioscope. this would involve a camera in his airway and maybe some samples of whatever they find in there.

and for those who are wondering... plastic bronchitis was mentioned and discussed. for now she's calling it possible chronic bronchitis, and we're taking it all one step at a time, but not taking our time. she's definitely on top of this.

pre-admit clinic (when we'll meet with the anaesthetist and give consent) is at the end of july, and the CT is friday, august 12. then we see doc again in clinic on the 16th (that's a tuesday) to discuss what the scan showed.

she also sent home some specimen jars. even though, up until now, asher has been swallowing anything he coughs up, she wants samples of anything he does get out. she's not holding her breath for this, though, since she said that it's not uncommon for kids his age to swallow whatever comes up. even a cast (the little bits produced by PB) would more likely be vomitted out from excessive coughing, rather than to actually be projected with a couple coughs.

i'm not going to lie, i'm scared. i don't really know what i was hoping for today. nothing good could have come from this appointment. (and yes, "it's not respiratory" would not have been good news. because if it's not resp... then what is it?!?!) but "fortunately" it is respiratory.

and i want to cry.

because even "run of the mill" plain ol' chronic bronchitis isn't good for a heart kid... the interactions between the heart and lungs... ugh... let's just say, what happens in one affects the other, and of course, never in a good way...

in the meantime, she put asher on flovent, a steroid inhaler. we're trying it for a month, to see if it will help.

please pray that it helps.

ok, i'm gonna go now... the littlest man remembered that i promised to buy him something if he went to sleep last night and behaved at his appointment this morning. boo!!! haha

ps - for those who want to know: 100.8 cm tall (which explains why he ate as much as he did the other week!), and 15.7 kg. (for the non-metric readers: that's 39.6 inches and 34.6 lbs.) his sats were 95% (the highest they've been in a while!), heart rate was 85 (slightly higher than pacer settings, so that's nice), and BP was 105/53. he was also very active, a nice warm pink colour, and only slightly puffy around his eyes. he didn't cough once. haha but she was happy that he looked so good, because now she knows his norm.

pps - i like our doc. she's very nice, pleasant but takes it all very seriously. easy to talk to, and she really listens, and she's not taking asher for granted. yup, i think this will be very, very good.

ppps - please hold us in the Light, especially me. the last few weeks have been really rough for me, and all of this now isn't helping. i just feel a little sad and overwhelmed and i don't want to lose my baby but for the life of me i can't shake this feeling that we've now started that slow decent toward the end... basically, i don't have a whole lot of hope right now. i'm weepy and tired and scared and lonely, and all of this compounded by the several other stressors i have right now, including much needed repairs on my truck and house, and the lack of funds for either. sorry, just needed to vent... thanks for "listening."

it's the morning of our resp appointment...

and here i sit, not sure how i actually feel about it all.

we're adding another specialist today. asher's been wheezing for a while now, he has a nasty wet and crackly cough, his sats are dropping. nothing much shows up on x-ray, but maybe the CT scan will show something when the time comes.

it's all so strange... it almost feels pointless, going to see another doctor, hoping they'll fix my baby, since they can't. sure, maybe they can fix his resp issues...

but they can't fix him.

because

"given that the fontan is palliative, he's doing as well as can be expected."

yes, i know that, technically, that is all good news. he's doing as well as can be expected. hooray!! but...

at the same time...

there's that p word.

why has that comment hit me so hard? i mean, it's completely true. the fontan is palliative. they can't fix asher's heart, but they can make it keep beating for a little while longer. and that's what they've done. but it's not a repair, and it's not permanent. his circulation can't last like this.

it is the very truth of the statement that hurts. i suspect i'd let myself believe that maybe, just maybe, asher will grow up. i mean, he's made it through so much already, right? he should have died so many times by now, and yet here he is, right? maybe he'll beat the odds and he'll finish high school and college and he'll get married and have kids and have a great career and he'll live to be 107.

given that the fontan is palliative, he's doing as well as can be expected.

i can almost hear the clock ticking.

this morning, like the last few weeks, i've been wrestling with the seeming futility of all of this. why bother taking him to emerge? why bother seeing cardio? why bother starting with a new specialist? why bother with tests? if this is the best he's gonna do, then what's the point?!?!

but...

what if these docs can give him just a few more years? then again, what if he still has a few more years, and they can give him ten more years? what if they can do something that will allow him to not only start high school, but to finish high school??

what a horrible thing it is to hope against hope that your child will live long enough to go to high school.

and yet, this is my reality.

there's no denying it: HLHS is a death sentence. given asher's extensive list of diagnoses, and his history, and his present, the odds aren't in his favour for a long life. he's not actively dying right now, thank God. but there are the little things that pop up and add up and take their toll on him...

and on me...

and sometimes, it's just a little much.

and sometimes, it's not nearly enough.

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.

my bad :S

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

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

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

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

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

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

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

and then i'm going to vomit.

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

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

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

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

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

wait for it...

100.

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

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

100 bpm.

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

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

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

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

now, for something a little lighter...

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

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...

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.

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.

can you believe, we actually got to see a couple DOCTORS this weekend!!

so, yesterday, asher wasn't doing so well again. after some humming and hawing (did i spell that right?) yesterday, i took him in to emerg in london.

they took us into Ambulatory Care (a rarity in asherland... lately we've been in J-bed. sometimes i think they should just put up a sign that says "asher's bed"... oh, wait, that would imply we're there all the time. so... scratch that). after going through asher's whole medical history with the med student (so it's a miracle we're home already, haha), dr helleman came over. i have to say, i really like her. first off, she loves asher. second, she's awesome. when asher comes in, she listens to my concerns, and she is very careful to investigate fully. and she's not afraid to consult cardio, if need be. (translation: she calls them every time she sees asher.)

during her assessment, she heard the murmur. it concerned her a bit, since she remembers distinctly not hearing it when she saw us in august. so she ordered a chest x-ray and ECG, both of which were "unremarkable." then she called the on-call cardiologist, who was, you may recall, dr rauch.

uh-oh, i thought. this could be weird. i hope he's cool.


turns out, he was. he told her that he wanted to see asher and do an echo today, so we were to meet him outside the clinic at noon.

cut to today. asher slept in and wasn't in the best of moods, but he was tolerable. so off we went to church. he was looking ok, and i wasn't too concerned about him, so i put him in his class, but told them what was going on and to call me if he did anything "asher-ish."

i didn't get called. phew!

after church, however, he was pretty tired. usually he's running all over the church after sunday school, because he has a great time and is so energized by the crafts and singing and playing with the other kids. today, however, he walked, following at a distance, and complaining because we were going too fast.

off we went to the hospital. (good to know: it only takes about 7 minutes to get from the church to the hospital. believe me, i was watching the clock.) we parked across the street, where parking is free. {wink} but that meant that we had to walk across the street. sigh. i should have known, asher cried and wanted to be carried the whole way. i compromised with him, and carried him in the intersections. (he's now up to 15.2 kg - 33 lbs... ish... i'm metric only with this kid, so i'm guessing at the conversion there - and i was in high heels, so there was no way i could carry him the whole way.) but wow! was he cranky!!! and puffy, actually. those eyes just aren't right. that has nothing to do with the fatigue and irritability, but it's worth noting, so there you go.

but we got into the hospital, and the kids automatically got themselves some hand sanitizer, and asher flipped out on me because he wanted to get his own without help. of course, he had trouble with that, and he got more frustrated, and then it was foamy, which he didn't like, so that was another tantrum.

we got to the clinic a couple minutes early, so the kids sat and chatted (asher complained but stopped crying, though he did snap at bram a couple times), and i pondered the interaction of hypoglycemia, heart function and seizures. sadly, i'm not even joking. i know, i'm a nerd. haha

dr rauch arrived and chatted with the kids for a couple minutes, introduced himself to all of them, and let us into the clinic. he took asher into the echo lab. asher co-operated and laid down on the bed. he wasn't thrilled, but he was calm. he wanted to help with the echo, and dr rauch joked that maybe when asher's a bit older, he can do his own echo and doc will have coffee with me. haha but the echo went well, asher was very patient, and doc explained to me everything that he was looking at. honestly, i don't remember the last time anyone ever did that, probably not since the first few post-hybrid echoes with pepy and buffo. so things look a lot different in there now.

at one point, i made some comment like, "i told dr welisch we wouldn't make it till our next appointment." and he said, "when are you here next?" "thursday," i told him. "but you're going to sick kids on tuesday, right?" "um... yes." now, here's what's interesting about that. our paeds didn't tell him that. i didn't tell him that. and i don't remember telling dr helleman about that last night. so... um... how does he know that?? my theory is that dr russell called and told him, since SickKids is much better at keeping london in the loop than london is at keeping SickKids in the loop. not that it really matters, i'm just saying...

anyway, when he was done, he told me what he thought. he couldn't see anything on the echo that could be causing all the symptoms. asher's liver seemed fine, and his urine last night showed nothing out of the ordinary (urea and creatinine were fine, no infection, and he's not leaking protein there). he also told me that sometimes fontans can leak protein through their gut. "ah, PLE," i said, "trust me, i'd be telling a cardiologist if asher had diarrhea." and since asher is pooping just fine (c'mon, you know you were wondering. haha), PLE is not a problem, either. "basically," quothe the doc, "i don't know. but we've eliminated some big things, so that's good."

so, a lot of time in the hospital to hear, "i don't know." sigh.

i'm now feeling much more relaxed going into our appointment in toronto on tuesday. even if dr russell doesn't find anything on the echo, i am confident that she will continue to investigate. she knows us both well enough by now to know that, when i say there's a problem... it means there's a problem.

the thing is... this is all so familiar. this has happened before, and london saw nothing on the echo, and dr russell saw nothing on the echo... but she believed me and admitted asher, and ended up doing a cath. and they found problems with function and pressures. nice.

but like i said, i'm feeling better about all this now. last night, i'll admit, i was pretty upset about all of this. i was scared and crying... yeah, it wasn't pretty. but i prayed some, and this afternoon, i'm feeling better. asher's not, mind you, but i am. so, at least i can help him through the next little while, and advocate effectively for him.

so there's the update for today. i'm hoping there won't be anything else to report until tuesday. talk to you later!

in the ping-pong game of hospital life, asher and i are the ball.

remember a few weeks ago when dr w suggested discussing asher's fainting etc with neuro? and remember how neuro said, "fainting is caused by a sudden drop in blood pressure. so it's cardiac." so i called cardio.

don't get me started about the NP. i'm too annoyed. (although, i'm so glad she cleared up one mystery for me: according to her, epilepsy is a seizure disorder. i'm so glad she enlightened me.) anyhoo...

she put me through directly to dr w. so i told her that neuro said that the fainting and dizziness etc is definitely cardiac. so here is our plan for the time being:

we're going to try fiddling with his meds a little bit. asher has been on three meds for a while now. two of them are specifically for blood pressure (ramipril - an ACE-inhibitor - and hydrochlorothiazide - a diurretic), and aspirin, which asher is on for some mild blood thinning, can also decrease blood pressure. dr w thinks that perhaps three meds working to lower his blood pressure might be a problem.

now, due to the fontan, asher needs to continue on aspirin for the time being, so we can't stop that. and if he misses one dose of the diurretic, he puffs up, so we can't fiddle with that, either. which leaves ramipril.

asher has been on ramipril since March 2009, and it has done well for him, improving his function when his heart was trying to fail. but things have changed in there now, and due to the great gobs of oxygen and decreased workload for his heart, his function has improved. the other consideration is that fontans don't always tolerate ramipril very well. so she believes that this med is the culprit behind the dizziness and fainting.

we're going to keep an eye on him over the next little while to see how he does without it. we go back to clinic in october, and that gives us a good chunk of time to figure out if this is the right way to go. this also means that we are avoiding anything invasive, at least for the time being. if the issue is blood pressure, it should help him to stop this med. if there is no change, if asher continues having dizzy spells (most recently, he had one yesterday morning), then we will have to keep looking.

i'm hopeful about this plan. it certainly beats a cath and arch reconstruction, if you ask me. so we'll see how this goes.

if this is friday, it must be cardio. just cardio, though.

as the title implies, we went to cardio in london today for an echo. they were looking at asher's arch, to see if that is, in fact, the problem.

turns out, it isn't.

so the theory goes, anyway.

the echo found no "significant obstruction in the aortic arch." which means, for those who don't live in cardiology clinics (and of whom i am often insanely jealous) that blood is flowing nicely through the arch, as it should be.

which means that the arch is not the cause of the dizziness, fainting, and other miscellaneous cardiac symptoms.

dr w said to discuss with neurology next thursday when we see them. the hope is that they can explain the symptoms. and if they can't...

and if the symptoms continue...

i am to call dr w and she will order a cardiac memo so that we can find out exactly what asher's heart is doing when he has these episodes. the test usually lasts 4 to 6 weeks, which means that they should be able to find something, if there is something to find. there is usually a wait to get one of these devices, about 3 to 4 weeks.

so basically, we are now in yet another "wait and see" pattern. who knows? asher seems to be doing much better these days, so all the hoopla of the last couple weeks may be over. at least, i hope it is. i'm getting pretty tired of cardiology, believe it or not. 

and a quick update on Ali: he was transfered to SickKids this morning. generally, he is in pretty rough shape (hence the transfer). please continue to hold him and his family in the Light, and i will continue to keep you posted. thanks.

ah, the holter...

well, it's done now, and asher helped me to remove everything from his chest and stomach. so the test is officially done. and guess what happened in the 24 hours?

nothing.

well, no. i shouldn't say that. he got a bit dizzy while helping to unload the cart at the grocery store. needless to say, the lady behind us looked at me like i was crazy when, in the midst of all that activity, i turned and asked her the time and pulled a paper out of my purse to write something down. but whatever. she doesn't know what's going on.

and asher got a bit dizzy at one point yesterday evening, and last night at bedtime, he had a few other symptoms. he was very sweaty on his head (and i mean, his hair was actually wet! yuck!), and his hands were very, very grey. during the night, he woke up once crying, which he never does unless he wakes up dizzy. don't worry, all this got recorded in the diary, but somehow i doubt that anything will show up on the holter. sigh.

but meanwhile, though i really want some answers right now, i have some peace. we'll get answers soon, and  we'll get asher all fixed up... again. it will be ok. thanks for the prayers over the last day or so, but please don't stop praying; we're going to need plenty while this all gets sorted out. thank-you.

psalm 27:14

the "emergency" cardio appointment

we just got back from cardiology, so i thought i'd post about how it went. i'll start with the good news.

his sats were 98%!!!!!!!!!!!!!!!!!!!!!!!!!! i just can't get used to numbers like that! we spent so long in the 60s to low 80s, and now that he's (usually) in the high 90s, i still haven't really adjusted. it still just makes me happy.

and that's the good news.

ok, now on to the rest of the appointment.

his blood pressure was... um... interesting. 110/82 in his left leg, and 90/63 in his right arm. the gradient (difference) is better than it was last week, but it's still pretty big.

then we went to see dr w to check the pacemaker. the chest x-rays last week showed nothing wrong with the leads, which means that electricity is getting from the generator to the heart without interruption, so that's good. and when dr w investigated the generator today, she found... nothing.

there's nothing wrong with the generator. at least, nothing that showed up, anyway. so they put a holter on asher, and he'll wear that until tomorrow afternoon. we'll take it in on monday, and dr w will review the results as soon as she can (it can take a couple days to get the information out of the holter). i mentioned to her that i had a couple other ideas about the cause of the problem. when i told her about the arch, she said that once she gets the holter report, if it's negative, they'll keep looking. she asked when we're scheduled for another echo, and when i said october, she said that she'll get us in sooner to have a look specifically at the arch.

i've gotta say, i'm now exhausted. i may just end up taking the kids out for supper tonight, just so i don't have to cook, because i don't think i should be around anything sharp or hot right now. haha and i just want to cry. i was actually hoping she would have found a huge problem with the pacemaker. at least then it's something simple, and even more importantly, it's an answer. alas, not in asherland. so we wait.

so here is my prayer request for tonight: please pray that asher blacks out. it doesn't have to happen tonight. anytime between now and 3:00 EST tomorrow afternoon. that way it will show up on the holter. and if you feel weird praying for something bad to happen to the wee lad, pray for dizzy spells... and that he tells me when he's dizzy. i know it sounds strange praying for weird symptoms, but this way they'll be recorded and the docs can see what his heart is actually doing when he has them. thanks so much.

psalm 27:14

"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.

not so awesome

asher's with ed today, since my bathroom is being torn apart (literally, they're taking out the entire ceiling, including lath and support beams right now) and i don't want asher and bram (who has mild asthma) around while that's going on. but ed called a few minutes ago, and

something's not right with asher.

i've been seeing it, too, actually, but i've been playing chicken with him, waiting for whatever it is to show up. i just don't want to put him through another trip to emerg if it's not necessary. but it now really sounds like it's necessary. so here's the low-down:

• asher has lost his appetite. this is actually a huge sign with him, since, as i've said before, he's a bottomless pit. and he knows he needs to eat because he needs to gain weight. so for him to stop eating, especially his favourite foods, including ones he asks for specifically, this is major.
• he's been having difficulty swallowing thin liquids, especially water. quite often over the last couple weeks or so, he'll take a drink of water, then start coughing like it went down the wrong way. asher hasn't had difficulty swallowing in over a year now. and while something like this happening once or twice isn't normally a big deal, this has been happening at least a couple times a day.
• yesterday, he was hot to the touch. no real noticeable fever, his forehead was warm-ish yesterday, but his body was hot.
• he sweats. a lot. even when it's cool and not humid. the other day when it was so hot and humid outside, i cranked the a/c to make it a chilly 22C in the house. i was contemplating my hoodie; asher's hair was damp. indoors. because i don't take him out in the humidity. and all the windows were closed.
• he has been short of breath off and on for a couple days. like last night, while he was sitting on the bed listening to the bedtime stories.
• his activity level is markedly decreased.
• off and on, he's irritable. which, ok, is almost an assumed trait among heart kids, but not asher. happiest kid ever, he is. but not the last couple days. and the slightest thing will set him off, either into a near-rage or bursting into tears.
• he's been sleeping a lot. two naps yesterday: one on the way to church (a 20 minute drive, and he's usually wired because he loves sunday school), and one in the afternoon (he fell asleep on the way home from church, the slept for three more hours once home).
• today, he gagged. he just sat there, started coughing, then retching like he was about to vomit.
• when ed asked him if he hurt anywhere (expecting him to say that his chest hurt [because of reflux]) asher said that it "hurts beside my pacemaker." ed asked him to point to where it hurts, and asher pointed right at his pacer. ed touched the site, and it's warm. not quite hot, and he said it doesn't look inflamed or anything, but it's definitely warmer than the area around it.

so ed is taking asher in to emerg this afternoon. i told him to keep me posted, to call if he has any questions, and to definitely call me to tell me what they say.

when i know, you'll know.

meantime, please pray. thank-you.

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.

in a few short hours, asher will be a robot, "but not a big robot. i be a little robot."

asher is scheduled to go in for his pacemaker at 2:00 today.

yesterday, when i was talking to deirdre (thank-you for the wonderful lunch, by the way... it really was lovely and energizing and delightful, for so many reasons), she asked how i was feeling going into this surgery. i told her honestly that i have never, in asher's life, been so excited going into a surgery.

and then last night, they took asher into the treatment room (where he has never been) and put in the IV. he screamed and screamed and screamed and fought and screamed... and all i could do was give him kisses... and pin him down on the table. it was awful. completely heartbreaking, to know that he is so scared, and that he has to suffer this much, and that it never ends...

and now today, i am exhausted. i can't wait for this surgery to be finished. i can't wait to see him afterward. and i can't wait to go home. this is our third admission in less than 6 weeks, this is already the longest admission, and we're not done yet. this is his second heart surgery in a little over a month.

so i'm done. i have nothing left, i just want to cry, and sleep, and hold my pink baby (not a grey one, thank-you very much, just a pink one), and cry some more, and sleep a bit longer, and cry some more, and not be in a hospital, and cry a little bit more (once i've rehydrated), and sleep in a comfy bed, and cry all night, and then just sit and stare at my beautiful orange walls, and cook in my own kitchen, and laugh at bram's quirkiness, and play with blithe and her barbies, and cry some more, and cuddle all three of them to sleep, and wake up surrounded by my kids, and cry a bit more, and make breakfast for all of us, and do some laundry and dishes and tidying and yardwork and pet smokey, and cry a bit more. i miss all of that (ok, maybe not the dishes, but everything else i genuinely miss). i want it back. i'm just so tired of all of this. i know we only have a few days left for this admission, but then what? this life never stops. it's always appointments, trips to emerg, paeds appointments, watching for colour and symptoms, and holding my breath and waiting... for... something. i don't even know what i'm waiting for, but i feel like i'm just waiting for something to go wrong now. and i'm too tired to do it anymore.

and yet i have to. i have to keep going. i have to comfort asher, play with him, help him to be brave, help him laugh and smile and giggle and play and live. and i don't mind any of that. i love it, i really do. and i honestly wouldn't trade a second of this life if i had the chance... but it hurts to know that this kind of life exists, where predictability and stability and simplicity are just dreams that a mother dreams and nothing more...

right now, this is just too hard. i'm too tired, too drained, too weak, too heartbroken, too spent.

and all that being said...

please continue to remember brigid and allison in london. a long, scary admission, and allison is tired.

little ethan (VSD closure) is going home today! his mom is nervous, but this is exciting for them. the last drain is coming out and they're outta here! so enjoy, my friends, you've earned it.

and another little guy to hold in the Light. his name is also ethan. not a heart kid, but his mom is a CHD survivor, which is fantastic to see. ethan is 6 months old, and currently has pneumonia, and after the chest x-ray revealed lesions in his lungs, they did a CT scan, and discovered a tumour in his right lung. it's inoperable, due to its location (right behind his heart) but is potentially blocking his airway. ethan is going in for a PICC line today, because his IV keeps blowing and they have run out of places to try. he's so adorable, all pink and chubby and happy, and honestly, his mom is one strong woman. heart survivor, and ethan is the youngest of her seven (yes, you read that right, seven!) kids. please pray/cross your crossables/send good vibes their way. ethan will be going in for more tests in the next little while, and mom is scared out of her mind right now.

thanks so much for the prayers and so forth; we all really need them right now. my parents are coming up this afternoon, and bringing the kidley-winks with them, so that will be lovely. after the surgery, asher will be back up on the ward, not the unit, which makes it nice, because we don't have to pack our stuff, and oh, there's a lot of it.

please pass the barf bucket... and some new bedding... and the menu... and a candle...

and that about sums up this post today.
first up: the barf bucket. asher will be going early next week for his pacemaker. his HR was almost normal yesterday while he played, staying in the high 60s to high 80s all day. (and let me clarify "normal": the high 60s to high 80s is almost up to his pre-fontan resting HR... but this is our current normal, so i'll take it.) although, at one glorious moment, the "tachy" alarm went off. ah, sweet tachy, how i've missed thee. (oh, for those who don't live and breathe by ECG monitors: "tachy" is short for "tachycardia" which is fast heart rate. a beautiful alarm to hear after spending 3 days with atropine at the bedside because of serious brady. LOL) then this morning on rounds, balki was giving report, and he said that asher had a good night with no episodes, and his HR stayed in the low 40s all night. yes, folks, you read that right. at this point, low 40s is good. then balki continued: "and i saw the holter report from london, and it was impressive . it showed his heart rate going as low as 28, with some long pauses." i think i'm going to have to explain what "impressive" means to this fellow; perhaps "remarkable" would have been a better word. or "terrifying." or even "nauseating." all good words, and much more applicable than "impressive." but that's just me, and i'm obsessed with words (in case you hadn't noticed already).

second: some new bedding. this is asher being asher. sigh/LOL. this morning, he wanted to pour some water into his skim milk (apparently it's not watery enough. blech!) so he grabbed my water bottle, turned it upside down... and missed the milk. but fortunately, he managed to hit the table, the bed, and my pants! well, isn't that special. but i suppose it's wonderful to know that even in the hospital (which, btw, he doesn't want to leave. he informed me of this this morning over breakfast. too bad, kid, this time next week we are outta here!) he is still his usual, mischievous, 3-year-old self. but now i need to remake his bed. and so it goes...

third: the menu. yesterday, i'll admit, i was exhausted and overwhelmed, and ok, i'll admit, i probably (read: definitely) haven't been taking good care of myself. so, my dear friend DW came over in the evening. we hung around until asher was asleep... and then we went out. we "meandered" (toronto-style, meaning "not quite running") over to college street, and found a delightful little establishment, and had a good time. she introduced me to a friend of hers (teehee) and we hung out and talked and had a deep bib-interp-type conversation, and then we "meandered" back to the hospital. then we talked some more, and tried to help someone out, but he disappeared before we could get to him. so it goes in TO, i suppose, but at least we wanted to help. next time we'll react right away... i hope. we've each been so blessed in the past (and present)... it's such a joy to get the chance to pay it forward.

so there's the daily report from asherland. i'll try to update over the weekend, but it will be difficult to get to a computer. i'm looking forward to a "boring weekend" (dr c's words)... but at least i'll have some company. the kidley-winks are coming up tomorrow, and i hope to have some other company at some point this weekend... dr c's wife. yes, this is my life, folks: i'm going to be chatting with my son's heart surgeon's wife. it's a long story about how this came about, and why i'll be talking to her... maybe one of these days,  i'll fill you in, but for now i'm holding it close to my heart (at least in the blogosphere. i've told some people already, but it's too amazing to put into written words right now, so you, my dear readers, will just have to be patient) and i'm  looking forward to an amazing opportunity.

but while i have your attention, thank-you for your prayers/thoughts/vibes for little ethan. his surgery went well the other day, and the plan is to bring him back up to the ward today! i've been talking to his mother a good deal, and it's funny, the people who come into our lives in the hospital. ethan & co. were in the room next to us post-fontan, then we all went home on the same day. when we were transfered back here the other week, ethan & co. were in the room next to us again, and we all went home on the same day. and when we arrived here on tuesday, ethan & co. were in the room across the hall from us! funny how... but please continue to hold him and his family in the Light. he's doing well now as he recovers from his VSD closure, but now we're praying that he stabilizes in the big picture, and that he and his family can finally have some peace. CHD is stressful and scary, regardless of the severity, but at least we can be graced with other families who have "been there, done that."

and since you're on your knees, please continue to remember brigid and allison, who will be in London hospital for another couple weeks. brigid is a complex (and delightful!) girl, and allison is an amazing mom, but this admission is terrifying and stressful and worrisome. they need some rest, some peace, some stability, and something as close to normal as possible. i've mentioned them before, so i won't go into too many details, other than that right now, B is battling sepsis with weird and rare bugs, and it's throwing off a lot of systems for her, and her mom is pretty scared. send them Love and hold them in the Light over the next couple of weeks, and i'll try my best to keep you updated on her.

also, please pray/cross your crossables/send good vibes out there for mason and his mother stephanie, as well. this is another family we met in london during our first admit there in march. mason is another complex child with multiple issues, and had a fundoplication last week. and stephanie needs prayers as well, as she doesn't seem to be coping very well right now, based on her FB status today. please hold them in the Light, too.

that's it for now. i'll try to get online at some point over the weekend. if i don't manage to update, please don't freak out. computer availability is limited without the resource centre, so a lack of updates is neither good nor bad... it just means i don't have a computer nearby. so... ttyl! :)

because on the roller coaster of asher's life, ups and downs aren't enough, so he threw in a delightful corkscrew...

so, EP finally and officially ok'd the pacemaker, and we were going to be going in today.

then they did bloodwork.

and checked his INR (clotting time, since he's on blood thinners).

and it was too high (he doesn't clot easily enough).

so...

surgery has been post-poned. which means... more waiting. so far, we're on Day 7 of this admission, and at this rate, we're going to be here for at least another week.

i was chatting with maricor (the surgical co-ordinator) in the hall this morning. that's right, she saw me walking along, and she stopped to talk to me... because she knows who i am. you know you're here too much when... ugh. anyway, right now it looks like tuesday will be the day.

till then, they're withholding the warfarin and just making sure asher doesn't hit his head on anything... although i don't think it would be a problem even if he did, since he smashed his head on the table last week when he fainted, and there wasn't even a mark. so we're probably good for that. but it would still be waaaaaaay too risky to do surgery in a kid who doesn't clot, so we're waiting. "obviously," quoth dr russell on rounds this morning, "if we need to do something sooner, we will, but the plan is to wait and make sure the INR comes down on its own." sigh...

so that's the plan right now. hold off on the warfarin, probably more bloodwork in a couple days, and surgery on tuesday. the date's not carved in stone yet, but that's the word on the street... or ward, as the case may be.

please hold us both in the Light over the next few days. asher's HR is still low, and i'm exhausted in every sense of the word. it's just getting to be a bit much for me. i really need a break right now. :( so yeah... that's what we need right now. patience, rest, peace, a change of scenery (for heather) and a heart that beats (for asher). thanks so much.

all that being said, we had a delightful opportunity to give back a bit this morning, which, of course i jumped at, given my beliefs about stewardship and all that. (i believe we have a responsibility to use what we've been given to help others, and we've been given a boy with a very unusual heart, and because of that, we're often given opportunities to further research and such.) this morning, dr golding approached me about allowing him to use asher to educate some medical students on examining young children. of course i said yes, and i think those poor kids didn't know what to make of us! lol when they came in, asher wasn't afraid or nervous of anything, just played with his toys while they "looked for his breakfast" in his tummy (honestly, at this point, they could have said, "i'm just listening to your stomach and looking for your liver" and asher wouldn't have minded, but he's not exactly the norm...) and took his deep breaths. apparently, asher was a great one for them to learn on, since they could actually feel his liver. apparently, that's not normal... but everyone has always found asher's liver pretty easily. not where it's supposed to be, mind you... just the other week it was 6 to 8 cm lower than it should be, but that's good. now these kids will know what they're feeling for. i had to explain asher's condition, his other issues, what we're in for this time, his development and growth, that sort of thing. probably a little overwhelming for a bunch of students, but hey, if you want to be a doctor, you're going to meet kids with wonky physiology, so might as well start with the wonkiest heart possible, right? anyhoo, just thought i'd share that little story. ttyl! :)

in a couple days, asher won't be able to go on roller coasters anymore. lucky for him, he's a roller coaster unto himself

lucky for him, perhaps... but does he have to take me along for the ride?!?!

so, it's been interesting since getting here. we got here yesterday afternoon, safe and sound. and since then, yeah, it's been up and down so many times i've lost count.

we got here, and first up: a holter monitor. are you kidding me?!?! honestly, i almost cried. HSC wanted one while we were in london the first time, a couple weeks ago. then they wanted one while we were in london over the weekend. now they want another one?!?! but they really only wanted the overnight data, so it's already off. i talked to the fellow, filled him in on all the details about the last few weeks (why does it feel like months?)... he wasn't surprised. and, by the way, neither was i when he refered to asher's "intermittent AV block" and "sick sinus syndrome." (remember a couple weeks ago, when i started learning about arrhythmia, and i said i had an idea of what the problem was? yeah, that was it. HAHA! i was right again!) anyway... if you look up Sick Sinus Syndrome, you'll find that it involves periods of tachycardia [fast heart rate] (which asher had a year ago) and bradycardia [slow heart rate] (which asher has now). you'll also learn that it is very rare, but mostly happens in kids who've had heart surgery, and that the only treatment is a pacemaker. so......

they sent in an EP fellow (EP = electrophysiology. the ones who are especially obsessed with lub-dubs). he asked a bunch of questions, i told him about the dizziness and the fainting spells and the brady episodes in london, and how hard it is to wake him when his HR is so low. honestly, at that, the poor guy looked like a deer caught in the headlights. then i continued with the wide range of grey asher turns. this poor guy... the fellow, i mean. he looked actually scared.

cut to rounds. the fellow hadn't had a chance to see asher yet, but he gave his little spiel anyway, including the delightful part where he said, "he didn't have any episodes last night." dr russell quickly flipped through asher's chart and said, "he was in the low 40s all night." "well, yes, but no real episodes." "but he was in the low 40s all night." a nice, gentle reminder to the cardio fellow (who looks like Balki from Perfect Strangers, btw, so from now on, that's what i'll call him, for clarity's sake) that low 40s is still considered bradycardic for a 3-year-old. so the plan is to discuss asher again with EP (which shouldn't be a problem, given the fellow's reaction last night) and get a plan in place by the end of the day, "one that we can all live with," as dr r put it.

but there have been some interesting revelations along the way:

1. our fave surgeon, dr c, reads this blog. he told me yesterday that he read the blog and that it was an easier resource for him than going through all the charts and records. so... hi, dr c! :)
2. maricor, the surgical co-ordinator, didn't want asher to have breakfast this morning "just in case." but then she changed her mind, so he's allowed to eat now. but! this little tidbit shows what everyone is thinking, and just how quickly this will happen.
3. balki said to me today that everyone knows that asher will be getting a pacer, but we still have to go through the usual channels.
4. dr c popped in to chat this morning. he said that asher looked great, though sweaty. then he looked at the monitor. and saw asher's active HR. 62. yeah. and asher's sweaty. quite sweaty, in fact. then he (dr c) said, "well, i'll talk to you later today." and i wanted to vomit.
5. maricor was walking past our door as dr c was walking out. he asked her what the plan is for asher, and she replied, "well, we're just waiting for the official word, and dr r is running a clinic today, so later on today we'll know for sure."

so guess what this all means! asher's very likely getting a pacemaker, and within the next couple days. we just need EP to say officially that this is what we're gonna do. when i hear "officially" i'll let you know.

in the meantime, please hold asher in the Light. and me, too, for that matter. this is exhausting, scary, stressful, exhausting, tiring, exhausting... too many times over the last couple of days i have nearly burst into tears just from exhaustion. i'm trying to keep my spirits up right now, and think positively, and distract myself with cheesy romance novels and stuff like that, but still... we're sitting in a  room at sick kids, and everyone knows what the next few days will bring. so please remember us.

also, please continue to remember brigid. she hasn't been having a good couple days, either, and they'll be transfusing tomorrow.

and since you're praying/whatever you do... a little boy named ethan (VSD with CHF, 6 months old) is having his OH VSD closure right now. he's got dr c, so you know he's in good hands, but the mom is very worried and scared and tired. please remember them, as well. thanks so much.