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.

how AMAZING!!!!

can you believe that

on thursday...

4 days from today...

ASHER TURNS 4!!!!!!!

honestly, i can't believe it! just thinking about it makes me cry. even the most faithful followers of this blog cannot fathom how miraculous this is, that

Asher is alive.

and

Asher is stable.

i'll admit, i never allowed myself to imagine him living this long. in fact, it's only been in the last month or so that i've been saying "he's almost 4." and yet... here we are... he is officially

ALMOST 4!!!!!!!

oh, well, this is just too exciting!!!!!!!!!!!!!!!!!!! :D

what a way to start the day!!!! i can't believe we're actually here already; it's like some sort of wonderful dream!! fyi, i'm writing this post in mid-air, because i'm just. that. happy.

although i think, perhaps for the first time in my entire life, the word ELATED is appropriate! and giddy (although that is nothing new, lol). so let's just get to it, shall we?

i got to the school at 9:00 and met the learning support teacher for the primary grades. he seems very nice. and the principal, whom i have met before, joined us, and she was very helpful and informative. and of course, dr b, our awesome awesome awesome paeds, came and brought Trouble with her. (i should clarify: margaret behaved herself. her dog's name is trouble and she is training as a helper dog right now.)

they weren't nearly as terrified by asher as i expected (and semi-hoped... it can be so fun to see people's reactions when they hear "he has half a heart." LOL), as they are used to accomodating special needs kids in the school, which frankly, i think is wonderful. so here's a run-down of the plan:

• asher will be a hand-off kid, meaning that when he gets off the school bus, blithe will take him directly to his EA or ECE, and he will be taken right inside. we just all agreed that outdoor play would be too chaotic for him, it will be too difficult to keep an eye on him, and the odds of him getting injured are too great. the bus arrives only a couple minutes before the bell, anyway, so he won't miss much there. he also will not be going out onto the playground for recess. he may go out to the front of the school with an adult, a few older kids, and some other special needs kids for some outdoor play. we just can't risk him on the playground with hundreds of other kids with limbs flailing, not looking where they are running or throwing balls and so forth. too many chances for something to go wrong there.
• he will have a modified phys ed programme. the LST is going to get me the list of activities in the JSK phys ed curriculum, and i will go through it and "ok" the activities that won't endanger asher. we did discuss excusing him from phys ed altogether, but that's not fair to him because he is so active and loves to run and play and be active (we told the LST that asher doesn't know he only has half a heart, and he laughed). when he isn't in gym with his classmates, he will either play some other games in the atrium, or he will go to the computer lab or to the other JSK class.
• he will be supervised at snack and lunchtimes. we told them that he has some significant nutritional needs right now and we need to make sure that he eats everything that is sent with him. he doesn't gain weight easily because of his heart, so he will be with an adult and another child at nutrition breaks. and since the two JSK classes go outside at opposite times, he can be inside with his class, then when they're outside, he'll join the other class while they eat.
• he will be assessed by OT, PT and SLP early in the school year. (oh, yeah. you might not know what those are. OT = occupational therapy; PT = physiotherapy; SLP = speech and language pathology). because he has spent so much time in hospitals, with limited activity due to cardiac monitors, he may need some help with his gross motor skills. also, due to frequent admissions, his speech is somewhat delayed. not much, mind you, but some. he speaks perfectly clearly, and if you were to meet him, you would understand everything he says, but his vocabulary and syntax aren't the greatest. he's doing very well, all things considered, but with a little assistance and special attention, he can move past "all things considered" to "hokey doodle, did you hear that 3-year-old quoting shakespeare?!?!" ok, maybe that last part is just a shakespeare-loving mother's dream. LOL but i'm sure he could say, "i'll lug the guts to the other room" without problems. there's hope. teehee
• every teacher, EA and ECE in the school, including supply teachers, will know asher. his picture and info sheet will be posted in his classroom and in the principal's office by her phone. over his first few days, every teacher in the school will pop into the class to see him so they can identify him. this is purely precaution, since we're all hoping he'll be completely healthy, happy and safe at school, but we are also aware that such may not always be the case. so if he's in the hall and faints or gets dizzy or freaks out or whatever, any teacher who sees him will know right away who he is and what to do.
• we haven't fully decided when to start him. the original thought was to start him toward the end of the second week, but he will know when school starts and will be desperate to go, so i don't think that will work. we'll probably start him on time, so that he won't be so overwhelmed by so many kids in the class, and he can ease into the transition with fewer kids at the start.
• the idea behind easing him in is this: since the spring admissions, asher has had some anxiety and fear, so he may not have the easiest time transitioning into something as major as school. don't get me wrong here, he's deliriously excited to be starting school. in the ambulance last week, he was saying to dr b, "i go school now?" and she'd say, "not today, hun, we're going to the hospital," to which he'd reply, "no, i a big boy. i go school now." so he's very, VERY excited about this, but we're concerned about his PTSD kicking in when he's suddenly thrown into a classroom full of people he doesn't know. other than an hour or so every week at sunday school, he's just not used to being around that many kids, so this will be a HUGE adjustment for him.
• asher will start by going half days, in the mornings. he's very excited about riding the school bus with "blivey and brammy" so he has to do that, but for the first little while, i will pick him up at noon. he's going to get very tired very quickly at school until he adjusts, and he will likely get overwhelmed quickly, too, so yeah. half days for the first while.
• they suggested some sort of protective vest for asher, to protect his pacemaker. he could wear this whenever he would be doing something that might bump his stomach, like playing outside, phys ed, that sort of thing. so i'm going to have to look into that.
• i also gave them a heads up that he may need to get a feeding tube in the fall. it's not for sure, and we're doing everything we can to pack some pounds onto him (you should have seen their faces when they heard about the butter and whipped cream diet!), and we're really hoping he doesn't end up needing it, but i thought they should know. so they are going to contact CCAC about that, since that would require nursing care, and i will be keeping them posted on that front over the summer.

so there you have it, folks. the plan for asher starting school. i can't believe this is actually happening!! it's like it's officially official and in september, my littlest man is going to be in school!!!!!!!!!!!!!!!! this is SUCH a huge step for him, an incredible milestone, and i don't know who's more excited, him or me! LOL

and yes, for those who are wondering, i will be posting pics on his first day. :D

on a happier note...

only 3 days left of fat-free. which means...

friday is fat day!!! :) it's funny that i'm so excited about this. i don't usually cook high-fat; i think i just don't like being told that i can't do something. yes, i'm a bit of a rebel, i'll admit.

anyway, to see what we're having for supper on friday, click here or on the title of this post. and do note the amount of fat per serving. part of me wants to barf when i see it, but part of me just can't wait for friday.

hey, the kids aren't here for the next couple of days... maybe i'll give it a trial run. ;)

oh, yeah. some of you may not click the link. so i'll just tell you what the recipe is for. TACO PIE!! WITH GROUND BEEF AND CHEESE AND SOUR CREAM AND MORE CHEEESE AND TORTILLA CHIPS AND MORE CHEESE!!!!

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.

the day before surgery...

well, asher and i hit the road tomorrow morning at 5. because your baby having open heart surgery isn't rough enough, you have to be sleep-deprived, as well. lol ah, well. that's why there's a starbucks AND tim horton's in the hospital. and that's why there's foot prints on the floor to lead you to timmy's... because you're so exhausted you can't follow directions. just bright orange footprints. clearly designed by a parent who knows... lol

anyway, i thought i would tell you about another exciting research opportunity we were given today. a cardio fellow called this afternoon, and apparently they're studying bloodflow in collateral vessels before and after the fontan. asher will go in for an MRI before the surgery, and from there he will be taken to the OR for his fontan. what an exciting opportunity this is, for asher to be involved in furthering our knowledge of these complex little hearts and helping to develop new strategies and treatments which could keep kids like asher alive.

in the meantime, in 12 hours, asher will be in the OR. and i will be sitting in the waiting room, staring at the door and praying that dr c doesn't walk in for several more hours. so please remember us tomorrow in your prayers/good vibes/positive thoughts/whatever you do. thanks so much! :)

ok, i know this is obvious, but...........

it just hit me that this is it.

the fontan.

the surgery we've been waiting for for over three years. this is it. after this, he's done. well, done with this course of surgeries, anyway.

after that...

i don't have to wait for the axe to drop, so to speak, er, write. that's it. the fontan.

THE FONTAN!!!!!

and believe it or not, i'm excited about this. yes, freaxious (fear + dread + anxious + nauseous, for those new to the blog), but excited! asher will officially be a fontan!!!! not a glenn!!! A FONTAN!!!!!!!

i'm glad this is hitting me now, right before pre-op. takes the edge off, a bit, you know?

gah! it's too close! it's too close!!!!

just a quick "fyi" post today, folks.

tomorrow is pre-op clinic. asher and i have to arrive at 7:30 am (apparently there's a 7:30 in the morning now... who knew?!?!) for bloodwork. then it's a day of chest x-ray, ultrasound (on his right femoral vein, checking for clots), and meeting with the nurse, surgery nurse practitioner, anaesthesiologist, surgical fellow, and surgeon. wow, i just about threw up, there.

a week from tuesday... 9 days from now... is surgery day. the fontan. excuse me while i vomit. k, back. yeah, surgery in just over a week.

it's strange. i'm not nearly as worried about this surgery as i was about the coles, and since i'm not mourning, i'm not in the same head-space as before the glenn. but... i don't know... i was talking to someone at church this morning, and she asked how i can hand asher over to the surgeons, knowing what they're going to do. my answer? "i don't know." because i don't. she looked heartbroken just thinking about it, and yeah, it is heartbreaking. (no pun intended.) i don't know how i do it. i just do what i have to do to keep asher alive, i guess. blech.

heart parenting isn't easy, folks. it's hard. brutal, in fact. stressful, dehumanizing, crazy-making, frustrating, heartbreaking... an emotional roller coaster on a good day! on the other hand, like i wrote to dr caldarone, there are i times i forget that asher even has a zipper, and those are the best moments, because it means he's a normal kid. let me tell you, i live for those moments.

well, i said this would be a quick post, and before this gets too long, i'm gonna sign off. i'll post tuesday and let you know how clinic went.

yup, it's time for the fontan...

so, yeah, asher hasn't been doing so well lately. all week, actually. he's not sick or anything... unless you count heart disease, in which case, he's one sick little boy.

i took him to see the paediatrician yesterday. all week, asher has been blue, lethargic (on wednesday, he fell asleep on the couch at 5pm and slept straight through till morning... in his bed, though), irritable, not eating as much, sweating in his sleep, puffier than usual, and his hands and feet are cold. actually, i think he's cold all over lately; he never wants to take his coat off anymore. so i took him in, and when she assessed him, she found that he's not tachypnic (breathing fast) or tachycardic (rapid heart rate), but his liver is low. and she knows, because she checked it last week when i took him in. so it has definitely lowered.

(who cares about his liver, you ask? when the liver descends, it is an indication of heart failure. the heart swells from working too hard and the influx of blood to help increase function, and this requires more room. so the liver gets pushed out of the way. it's not as low as it has been in the past, mind you, but it's working its way down, enough to be concerning.)

so, basically, the fontan is coming just in time. please pray/cross all crossables/send good vibes/whatever you do that asher remains otherwise healthy, since clearly this surgery is needed right now. if he gets sick, they will have to cancel, and that will be bad.

and it's 11 days till the fontan. click on the title of this post and scroll down till you see "The third stage of the Norwood: the Fontan operation." that tells you what you need to know, if you're curious about what is involved.

oh, this feels good!!!

i just had to post about this right now. i'm about to edit asher's story on the sidebar. and remove a couple details. in the first paragraph. go ahead, look. by the time you read this, you'll see that asher has issues with his heart, kidneys and immune system. gone will be the reference to throat and GI problems and a feeding tube.

DO YOU HAVE ANY IDEA HOW AMAZING THAT IS?!?!?!?!!?!?!?!?!

i know my friend wendy does. her son chris is also (relatively) tube-free. eating by mouth for the first time in two and a half years! GO CHRIS GO!!!!!

and the countdown continues... surgery is two weeks from tomorrow... 15 days. i don't know if i want to smile, cry or vomit. maybe some bizarre combination of the three. but right now asher is strong and healthy. the cold he's been fighting for over 2 weeks is almost gone, and he's doing well. this is the first time he's ever gone into a surgery strong and healthy. this doesn't happen!!! :)

please pray for him that he stays healthy, and that i can get everything taken care of and organized before we go. the next couple weeks are going to be pretty busy and hectic, so if you don't hear from me, assume we're doing well. and don't feel dissed if i don't contact you or hang out in the next little bit. sooooo much to do, and sooooooooo little time to do it all in. but yeah, 15 days. yikes!!!!

because i like to keep you in the loop...

i talked to the HSC surgical co-ordinator this afternoon, and she told me that asher's pre-op clinic will be on Monday, February 22. this will involve talking with the surgery nurse, surgery NP, surgery fellow, anaesthetist, and surgeon.

asher will also have to go for bloodwork, chest x-ray, and an ultrasound on his femoral veins and arteries, to check for clots. if they find clots, they'll have to deal with that immediately, because you can't have clots before open heart surgery. that would be bad.

he will not be having an echo (heart ultrasound) because he had one in november and it looked good.

in the meantime, before pre-op, asher will need to go to the dentist to make sure his teeth are ok. again, if he needs fillings or anything taken care of, that will have to be dealt with before the surgery.

so there you have it. it's getting close now. that means the surgery is really happening. i'll admit, it almost seemed like a dream, or something way off in the distant future. nope. it's really happening. asher will really be having this surgery. soon. less than a month. is anyone else freaxious right now, or is it just me?

oh. dear. me.

whatever happened to my sweet little boy, who was all cuddles and kisses and giggles? someone has taken him away, and replaced him with a hellian. sigh.

exhibit #1
he is now obsessed with drumming. on everything. the table. the floor. the couch. the dog. his siblings. the wall. the oven. his plate. his bowl. (and note: these two are WHILE THERE'S FOOD ON THEM!!!!) to give you an example, this morning i was changing his diaper, and singing him a lovely little song. ice cream by sarah maclachlan. cute ditty. anyway, i'm singing away, trying to get his wiggly legs into the leg holes, and i notice... he's drumming. keeping a perfect beat, doing creative little fills between lines - and keeping the beat at the same time, even! and what was he using as his drum, you ask? his bum. yeah. funny, granted, but still, HE DOESN'T STOP!!!!!!

exhibit #2
when blithe was wee, she got a little finding nemo riding car thing for her birthday. then it was handed down to bram. and now it's asher's. and asher loves it. i mean, LOVES it. he plays with it all the time. his favourite game is pushing the car around the house... chasing charlie. needless to say, charlie freaks out, running away from asher, fleeing for his life. you can almost smell the panic coming off my poor little doggie. asher, meanwhile, is killing himself laughing. to him, this is the funniest thing EVER! he only stops when charlie runs upstairs, which granted, takes longer than you'd think. charlie's absolutely adorable... and dumb as dirt.

exhibit #3
neither of my older children was a thrower. well, no, i lie. blithe used to throw her food on the floor when she was done eating. it was her little signal. lovely. and bram did the same thing. that's it. that's the extent of throwing in our house. until now. why, just 10 minutes ago, asher was throwing his cars and trains (all metal and heavy, mind you) across the living room. isn't that just special.

exhibit #4
this afternoon, i had to take care of some business at our MP's office. on the counter was a box full of chocolate bars to raise money for some charity. bram asked for one. i said no. so he went and sat down and read the book he had brought in with him. then asher spied the chocolate bars. he asked for one, very politely, mind you. i have to give credit where credit is due, and he does have very good manners. most of the time. anyway, asher asked for a chocolate bar, and i said no. now, forget everything i just said about his manners. because he flipped out. and i mean, he stood in the middle of the office and was sobbing. we're talking, weeping and wailing and gnashing of teeth. tears flowing like niagara falls. unbelievable.

exhibit #5
right now he's stomping through the downstairs insisting that everyone follow him in some sort of military parade celebrating wonky hearts?? i don't know.

exhibit #6
last night at bedtime, asher made one little joke. not even a funny one. not up to his usual standards anyway. well, the other two, being very tired, thought this was the most hilarious thing EVER and were nearly falling off the bed laughing. i'm not even exaggerating. so, of course, asher kept it up. kept repeating whatever it was over and over and over and over and over and over and over and over and over... yeah.



by the way... asher's surgery is 4 weeks today. not that i'm counting or anything.

the plan for asher's surgeries

so i got a call from dr russell on wednesday, of course, when i couldn't talk. LOL anyway, we now have the plan for asher.

the plan is to do his surgery(ies) in late february to early march, which is wonderful. for one thing, it gives us a bit more time. i was expecting by "early new year" that would mean mid-january. this gives us quite a bit more breathing space. it also means that asher is stable enough to wait that long. quite a change from a year ago. :)

you'll recall that time a year ago, asher was suffering from CHF after his illness in november, and we were getting brushed off in london. thank-you, dr russell, for listening to me. she's such an awesome doc! :)

ok, i should go for now. two posts in one morning, and it's not easy to type with a sat probe on your finger! LOL ttyl :)

ps - i'll post specific dates when i get them.

update

k, i'm sure you're all waiting to hear about the results of the cath. well, i don't have them yet. unfortunately, there was a mix-up, and asher's cath is booked for tomorrow morning at 11, instead of today. ugh.

so i will try to post tomorrow as soon as possible, to fill everyone in on how it went, and what they said, and all that. it may wait till later at night, or possibly till friday morning (we have to stay for 6 to 8 hours afterward, since they'll be using arteries, so we won't even get to leave till evening).

so yeah, i'll post the results as soon as i can. thanks. :)

What they’re planning on doing to Asher in the near future (WARNING: don’t read if you don’t want to know, or if you have a weak stomach)

I promised a while back that i would post the details of asher's upcoming surgeries as the time approached. Well, i have some time right now, so i guess, there's no time like the present. <shrug>

On Wednesday of this week (yup, only 3 days from now), they will be doing yet another pre-fontan cath. This is a diagnostic test. they will be looking at function and pressures in his heart and aortic arch. To do this, they will insert catheters into veins and arteries in his groin, and on each side of his neck. Then they will inject a special contrast dye into his bloodstream and watch where it goes, how fast, that sort of thing, using special x-ray equipment and such.

The docs in Toronto will use the information they gather on Wednesday to determine when they will do the next two surgeries.

That's right.

Two surgeries.

The first surgery will be asher's second arch reconstruction. This is necessary because of the special (read: new) technique they used during his first reconstruction, when he was 6 months old. At the time, they used the stent and tissue in his PDA (the ductus that allows blood to by-pass the lungs in utero, which they stented when he was 17 days old) to reconstruct his aortic arch. Well, asher being asher, he complicated something that should have been very, very simple. We all know of asher's fondness for scar tissue, and how much he loves putting obscene amounts of it around anything put in there by someone other than God (the surgeon's ego notwithstanding, lol). So asher's aortic arch is now full of scar tissue, which poses a number of problems. First, scar tissue doesn't grow, which means that, as asher grows (and the amount of blood in his system increases), his arch doesn't. So now he, at 3 years and 30 lbs, has more blood trying to flow through a vessel that hasn't grown since he was 6 months old and weighed about 17 lbs. That's a problem. The pressures in the arch are mounting (dr benson was freaked out by it back in February), and this problem is affecting the pressures and bloodflow further and further back through his cardiovascular system. this needs to be corrected.

And here's how they're gonna do it (skip ahead if you don't want to know the specific details): the plan is to go through his left side, under his arm. They can't put him on by-pass because it returns the blood to the body before the arch. So you can imagine what would happen if you had blood flowing through the arch while you're operating there. Not pretty, to say the least. So they have to put him on circulatory arrest <wave of nausea>. To do this, they have to lower his body temperature to the point where all function in his body (heart, major organs, brain) ceases. Basically, they press pause on the DVD-player of his body. Then they will do the surgery, removing the stent material (wire mesh) and scar tissue from the arch (i know how they do this. Trust me, you don't want to.) once they're done that, they close everything back up, and begin to return his body temperature to normal. And they cross their fingers, say a little prayer, and hope everything starts back up again. Excuse me while i vomit.

K, i'm back.

(you can start reading again, if you skipped ahead.) A week later, they will do his fontan. The reason for the delay is this: pressures. The arch reconstruction and the fontan will each result in significant changes in the pressures in and around his heart, and if those pressures fluctuate too widely in a short period of time, bad things can happen. So we don't want that. I'll take the extra time in Toronto, thank-you very much.

So here's the details of the fontan (this one isn't as bad as the other): there are two major veins that bring the blood into the heart. The superior vena cava (SVC) brings blood from the head, neck and upper body; the inferior vena cava (IVC) brings blood from the lower body. The Glenn shunt (which asher had at 6 months) removes the SVC from the right atrium (first collecting chamber) and attaches it to the right pulmonary artery (RPA - vessel that carries blood to the right lung). This procedure creates a bi-directional blood flow (blood travels both ways through the pulmonary arteries) to the lungs. A fontan circulation requires that the IVC also be attached to the RPA. So they connect it at the top, and put a wall in between the IVC and the right atrium, which stops blood from going into the heart. Once the fontan is complete, his circulation will become passive, meaning that it skips the heart, goes straight to the lungs, and only comes to the heart once it has been oxygenated. One pump sends the blood throughout the entire body.

Now, as i mentioned earlier, the change in pressures during the fontan is big. So, in order to lower the risk associated with pressure changes, they leave holes (fenestrations) in the wall between the IVC and heart. These holes are closed in the cath lab, usually about a year later.

Oh, did i mention that this is open heart surgery? Looking back, i don't see that anywhere. So yeah, it's open heart.

Asher's cath is this coming Wednesday. And lately, while he has improved somewhat as far as energy, eating and mood, he has been grey – yes, grey – since yesterday afternoon. And if we know anything at all, we heart moms know that grey = bad. But at least he's doing it now, right before the cath, so they'll find what's going on and deal with it.

Ok, there you go. A long post, a thorough post, but i thought i'd get this out of the way while i can still stomach the details.

quick update... and i'm gonna sum it all up in one word: ugh.

i haven't posted lately about how asher's doing, so i'm gonna get you all caught up.

a couple weeks ago, asher was admitted in london with the flu. H1N1. yup. delightful, no? but he's better now. a couple days of antibiotics and tamiflu and he's feeling "much better," as he would say.

but...

and of course, you were expecting that word...

since then, he hasn't been doing so well. over the last week or so, he has become increasingly lethargic. he spends a lot of play time now lying on the floor. he still has his bursts of energy, but those periods of lethargy are increasing every day. he's had a few blue spells, and off and on, his hands are very cold. he also seems to have lost a lot of his appetite, and is now refluxing more frequently.

i know it's time for his fontan, but still... the thought of watching him in this condition, with no power to change it, is discouraging. especially since, from a cardiac standpoint, he had been doing so well for so long. but the long string of infections, then the flu... i guess this was bound to happen. knowing that doesn't make it any easier, either. but this is the way things go with asher.

meanwhile, we're counting down to the cath. two weeks today. ugh. for some reason, my stomach knots up when i think about it. i know what they're gonna say, because they already said it all in february. i think that's the worst part. knowing. but so it goes. and as i discussed tonight with a couple friends, i have to remember to surrender this whole situation. it's not mine to control anyway, so why am i trying? a hard lesson to learn, especially when you're a mom. especially when you're a heart mom.

well, i should go now. it's the wee hours, and i'm tired. so i'll ttyl. :)

the countdown is on

while organizing my craft space today, i found a letter from sick kids about asher. his pre-fontan cath has been scheduled for november 25th. they will use this cath to set a date for his third stage surgery, when they complete the surgical course for his HLHS. i'll post the details of that surgery once we have a date set for it. but there you go. november 25. not as close as i'd thought, but still... is anyone else feeling slightly freaxious??