66 years ago today...

on 29 November, 1944, Dr Alfred Blalock, Dr Helen Taussig (yes, a woman) and Vivien Thomas (a black man) performed the first Blalock-Taussig shunt operation at Johns Hopkins in Baltimore.

the shunt was designed to help "blue babies," wee ones with a CHD known as Tetralogy of Fallot. in ToF, there are several issues:

1. pulmonary stenosis. the pulmonary artery carries de-oxygenated (blue) blood from the right side of the heart to the lungs. with PS, the opening to that artery is too small and restricts blood flow to the lungs.
2. VSD, a hole between the two pumping chambers. this allows blue blood to pass over to the left side of the heart and mix with the red blood and travel out to the body.
3. right ventricular hypertrophy. the right ventricle has to work harder than usual to overcompensate for the PS and VSD.
4. overriding aorta. this exacerbates the VSD and allows more blue and red blood to mix and travel to the body.

at this point in history, in 1944, there was no open heart surgery for these babies yet... that would come much later. and actually, up until this day, there was nothing at all that could be done for babies with severely wonky hearts. nothing. this procedure was the first of its kind, anywhere, ever. 

if you're interested in learning more about the surgery, including how to do it, click here. this will take you to a site which will teach you about ToF, and you can do the surgery yourself, in a cyberish kind of way. it's amazing, it really is!

this procedure is not what Asher had. Asher had a modified (or reverse) BT shunt, which went from his MPA (main pulmonary artery, right before it branches off to the lungs) to his proximal innominate artery, allowing most of the blood to by-pass his lungs and go out to his body.

but without this first procedure 66 years ago, Asher would never have survived beyond his diagnosis. there would have been no hope for him at all. and yet...

here he is.

almost 4.

(and for the record, i know of many people with ToF. you can click on Anniek's blog on the sidebar to read her story. and in addition to Anniek, there are two people at my church with tetralogy: a father and son. yes, the father has it, too. i've met him. he's an adult, and if you met him, you'd never know he has a wonky heart. simply amazing. and when you consider that these people would not be here today without this first surgery so very long ago... awesome. just awesome.)

WE'RE GOING HOME TODAY!!!!!!!!!!!!!!!!!!

'nuff said.

hey, margaret! his sats and HR match!!!! (in the good way!!!!)

what a difference an afternoon makes!

asher went in for his surgery yesterday at 3:00. at about 6:30, dr c came out and gave me the good news, that asher did well, and the pacemaker is in and working. how do you spell relief? P-A-C-E-M-A-K-E-R-!

the pacer is set to kick in when asher's HR dips below 80, and yeah, it's working right now. but it makes the ECG line on the monitor look interesting. there is now a white spike where the P-wave should be, at the right distance from the QRS line... oh, dear, i know too much about this stuff now. sigh...

asher looks great now, all things considered. he is pale, but it's pale pink now, not grey. and his eyes are puffy, but a couple doses of lasix should clear that up pretty quickly. he isn't draining much, either, and the plan is to remove the drain tomorrow. asher is also in quite a bit of pain. his voice is quiet and he doesn't move much, but we're giving him morphine as needed, so that should help. but he's asking for lunch, and this morning he asked, "mommy, i want go playroom. but not right now. later. after lunch." so this is progress. he knows he's not up for it right now, but he knows he will be once he eats. so that's delightful to see.

he'll be getting a holter today, which is standard procedure after a pacemaker, just to make sure everything is firing the way it should. here's hoping it will be our last holter for a very long time (this will be our 4th in about 3 weeks).

and in case you're wondering about me....

last night i wasn't doing so well. i started down a slippery slope of anxiety again, and i don't want to go back to that, thank-you very much. so i drank some water and went to bed... and didn't wake up till about 9:00 this morning. i'm still tired, but my brain is working the way it's supposed to and i'm feeling better. the exhaustion is only physical right now, and i can deal with that.

in other news...
i've been asking for prayers for several kids lately. today i need to add a couple more.

1. a little girl (i don't know her name, but she's 7) was in a head-on collision on friday. please pray for her and her mom.
2. a little boy, Jack, who had a heart transplant and is now battling cancer.
3. another wee babe, who is 16-months but weighs only 13 lbs. a bunch of us moms were talking with her this morning, and giving her all kinds of questions to ask the docs. has he had a sweat chloride test? screening for chromosomal anomolies? have they checked his heart? what about a GJ-tube (since he's vomitting formula after being without food for 18 hours)? she made a list, and she'll be asking, so i'll try to keep you posted.
4. please remember allison and brigid, shawna and ethan, allyson and ethan (VSD closure), stephanie and mason.
5. a mom i know from SickKids, who has been part of asher's team over the years, just had her first baby 11 days ago. he's here, too. i don't know any details, but Someone does, so please hold them in the Light, too. she looks tired and stressed and scared. she described it as "a rough 11 days."

i think that's about it for today's post. i'm off to get lunch for myself and order something for asher (probably fat-free hotdogs and green jello and chocolate milk). i'll keep you posted.

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.

just heard from cardio......

AND WE'RE GOING TO TORONTO!!!!!!!!!!!!!!!!!!!!!!!!!

we're leaving as soon as transport is arranged, and surgery will be soon. i'll post more when i know the details (like when the surgery will happen) but they're rushing this now.

the plan for today

rounds just came around. CVL (line in the neck) and pacing wires are coming out, so WOOHOO!!!! but... asher still has a LOT of fluid on board. they're adding another diurretic to work with the HCT (can't do lasix b/c of his kidneys), so that should help. but asher still has no appetite and doesn't want to even drink ...very much. they're doing an echo right now, and they've ordered an ECG.

at some point today, i'll be talking to social work, and even more excitingly, asher will get to go to the playroom. he's been waiting for hungry hungry hippos since the unit... oh, wait, that was yesterday. LOL wow, time is weird in the hospital. LOL

because it's never straightforward in asherland...

yesterday it looked like asher's drainage was slowing down, but it turns out... not so much. it's just that there were clots high up in the tubes. the nurse last night milked them out, and suddenly there was tons of drainage. and i mean, she got 60mls (2 oz) out, and 20 mins later, got out another 20mls. it's still clear red, which means (for those who know) no chylothorax. so that's a relief. but asher's right lung is crackly and his breathing is very shallow, due to the fluid and pain.

he's back to getting morphine, tylenol and katorelac (i still spelled that wrong, but i'm getting closer, right? lol). pain management and drainage are really the only issues now. so that's awesome! :)

he was also nauseous and vomiting last night, and that was yucky, not to mention painful for him. but i'm going to order him something to eat now, so we'll see how he does with that. nothing big. just something little and easy on his stomach, since he still hasn't eaten. he's been taking some ginger ale and i think that's helping.

oh, and before i go, just one more thing...

WE'RE IN OUR OWN ROOM!!!!!!!!!!

holy recovery, batman!!!

so, yeah, remember what i wrote this morning about going to the ward tomorrow? yeah. forget that.

BECAUSE WE'RE ALREADY THERE!!!!!!!!!!!!!!!!!!!!!!!!

they moved us up to step-down this morning, and tonight we're going to be IN OUR OWN ROOM!!!!!!!

pain is stil an issue, so he's getting morphine, tylenol and catorolec (sp? if you know, please tell me. lol), so that will help. he's still getting clear fluids, and doing reasonably well with them, so they've ordered "diet as tolerated" for supper tonight. can you believe that?!?! as for sats... oxygen is turned off, and asher is sitting comfortably and pinkly in the low 90s. absolutely incredible!!!

art line is out, CVL (in jugular) and a couple lines in his hand are still there. but they're thinking of taking out the CVL tomorrow. drainage is almost stopped entirely, and asher really wants his pacing wires out.

also, i got a chance to see dr caldarone again today. a few months ago, around the time i wrote his letter, i created a little art-y piece inspired by the OR. he was really appreciative... and i did notice that the colour scheme matched a couple other things in his office, so that cool. a tad serendipitous, i'd say. he really enjoyed the quotation, and noticed that the heart, which was notably wonky on the left side (which also amused him), was stitched up. it's quite a lovely piece, if i do say so, myself (and yes, my crafty friends... i used BG paper on it).

i explained that, to cope, i have to either laugh or create something pretty out of it, so as i was thinking about the OR, i made this for him. and the quote says,

inside this room, all of my dreams become realities and some of my realities become dreams.                 - Gene Wilder

have a great day, everyone! :)

sit down before you read this, because seriously, you are NOT going to believe this!!!!!

i just saw asher this morning, and the only word i can say is.... WOW!!!!!!!!!!

he's pink. his sats are in the mid-90s. yes, you read that right. mid-90s. this time yesterday they were 80. now 94 - 96% with the oxygen on. it's not on him, mind you. just sort of blowing near his head. because it looks good, quoth the nurse. (this was just before rounds. LOL) they're going to pull his art line and his catheter today. drainage is getting clearer all the time, and lessening all the time. they even stopped his milrinone this morning around 6. that's right, folks, NO MORE MILRINONE!!!!!! (iv function med... can't go to your own room with that one. but asher doesn't have that going anymore. he doesn't need it. because his function is just. that. good.) dr caldarone popped in to see him just before i got in, and he thinks asher is looking fantastic.

he's still in some pain, and seems to be afraid to move or actually do anything. but he's not grumpy or irritable. just tired and in pain.  but he's getting morphine every few hours now, as well as tylenol and something else... i just don't know how to spell it. lol he's looking around now, and he's got his monkey on his chest for when he coughs. we're going to try to get him a TV today so he can watch treehouse or Cars or something. :)

now, in case you thought i was done updating, there's one more thing... and this is the really exciting thing...

there was some discussion during rounds about sending him upstairs. in fact, the only reason we're not going upstairs today is because they're full. so we're hanging out down here for one more day, but not because he's in rough shape.

seriously, who is this kid?!?!?!?!?!?!

UN. FREAKING. BELIEVABLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

well, the surgery's done. i talked to the surgeon and guess what!! he actually described the surgery as, and i quote, "uneventful." i don't fully understand that yet; i'm not quite sure how "asher" and "uneventful" go together... but i'm not complaining! this has never happened before, and i can't believe it, but yeah! UNEVENTFUL!!!

we should be able to get in to see him in a little bit. they wanted to extubate him before sending him to the unit, so we have to wait a little bit. the tube that connects the inferior vena cava (IVC) to the right pulmonary vein (RPA) had to curve a little bit due to the Coles that he had in 2008, but the echo showed great flow, no kinks or folds in the tube.

so, this is very exciting. (understatement of the year. i've already celebrated with a cold can of coke and fries with gravy.) it remains to be seen how he recovers, but rest assured i will keep you posted. :)

so thank-you, everyone, for the prayers/good vibes/positive energy/whatever it is you do. it really helped. :)

and an extra-special uber thank-you to wendy and diane who came to spend the day with us here. you're amazing women; thanks so much for your friendship... and lattes. ;)

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?

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?

let the countdown begin!!!!!!

i got a call from the HSC surgical co-ordinator yesterday. there's a funny story about it, but first, the good news:

asher's surgery is scheduled for March 2.

the fontan.

asher's ONLY surgery.

no mention of arch reconstruction. just the fontan. i still want to vomit, but it's a happy vomit, so it's good. one surgery instead of two. ECMO (by-pass) instead of circulatory arrest. planned surgery only instead of fixing unforeseen problem AND planned surgery. it's almost too good to be true!!

and now the funny story:

ok, so she called yesterday as asher and i were heading in to emerg in london. asher had had several blue spells in less than 24 hours, which was a marked increase over his usual one every few days. so she asked if i had a paper and pen handy, and i said, "well, actually, we're on our way to the hospital right now, so no."

"oh, to sick kids?" she asked.

"no, children's in london. we're going to emerg."

"oh, no! what's going on?"

"oh, nothing big. just a few blue spells."

to which she replied... get ready for this... "ok, i'm writing all this down. now, these blue spells, has he ever had them before, or is this something new for him?"

i'll give you a minute to stop laughing. (don't feel bad. i literally laughed out loud when she asked that!)

so i said, "no, he gets them all the time, but he's had several more today than usual, so i'm taking him in."

"well," she said, "make sure they check him out thoroughly, do everything they're supposed to do. they need to get to the bottom of this."

i'm not going to tell her that we waited in the waiting room, then they put us in ambulatory care, where they gave him a quick listen, check his BP, and sent us home. (which makes it sound like a quick trip. we were actually there for 4 hours or so. and his sats were fine, his BP was a bit low in triage, but it was fine later before we left. and we're NEVER in ambulatory care. i think this was the first time asher's ever been in there.)

so there you go. surgery date and a trip to emerg. all in all, a normal day in our world. :)

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.

an excerpt from my letter to dr caldarone, on the day before the 3rd anniversary of asher's hybrid

Believe it or not, i’m actually at a loss for words now. I mean, really, how do you thank the person who has given you your child back, over and over again? This letter is the most difficult thing i’ve ever written. It might be easier if it weren’t so personal. I could just send you a little note that says, “thanks for everything” and leave it at that. But gah! There’s nothing i could give you, nothing i could do or say that would even come close to the gratitude i feel when i think of you. I should only have two children anymore. Instead, i have three. Still. And yes, i recognize that asher has a lot to do with his survival, and since i believe in God, i believe that He plays a big role in it, too. But really, asher could never have lived without the shunts and bands and plastes and reconstruction and diverted bloodflow. And God knows i don’t ever want to know what goes on in the OR (i’ve seen the inside of a cath lab, and i’ve been in Interventional Radiology, and i’ve pinned asher down for countless IVs, but the OR... shudder!). all i need to know is that, in that room, you give a little person a chance to live. To grow. To play. To imagine. To love. To cuddle. To build. To dream. To smile. To laugh. To run. And jump. And sing. And dance. To hold on to his little green dinosaur and Thomas trains and hot wheels and stuffed animals every minute of the day. To hold my hand. To hug me. to wink at me (a work in progress), and give me the best kissies ever. This child of mine is a miracle.

But so are you. You’re the greatest gift our family has ever received (other than asher himself). I have a couple pictures from his first week, and there’s no scar. It’s just so strange to see. Sometimes, when i’m getting him ready for bed, i see his zipper, and hug him a little tighter... because i can. And sometimes i forget about his zipper. And that is even better. Because it means that asher is a normal kid. Happy, playful, energetic, stubborn, a little spoiled, affectionate. he doesn’t always want to share his toys. Yesterday, a little boy he was playing with, whom he had never met before, was crying. Asher went over to him, put his arm around him, told him “it be ok, it be ok” and hugged him. i wish you could see just how beautiful my son really is. I wish i could bottle a little bit of his light and send it to you, so you could experience it and understand. Because without you, none of this would have ever happened. I wouldn’t hear him upstairs right now, yelling at his brother (sigh). I wouldn’t have put mitts on his hands before we walked his sister to the school bus this morning. I wouldn’t have gotten him a drink of water at midnight when he woke up last night. I wouldn’t have made him grilled cheese the other day for lunch. There would be no birthday parties, no curly blond rat’s nest to comb through (and wow! His hair is CRAZY!). i wouldn’t have fallen asleep with him on Monday afternoon.

So, thank-you.

I don’t really know what else to say, but believe me when i say that i mean it, truly, from the bottom of my heart.

Thank-you.

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.

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??