Asher's 3!!!!!!

asher's cake. he was so excited that it was elmo-ey. (fyi, everything has "-ey" at the end now. "caboosey," "brammy," "blithey," thomas-ey", and so forth. lol) the cake was made with love by nana (my mom).

the birthday boy, so happy with his candles.

look! he eats!!!!

asher wanted another piece of cake. specifically, elmo-ey's nose. but of course, he's not allowed more if he still has some on his plate. solution? put what's left of piece #1... on mommy's plate. no one will notice. LOL ah, well, it's his birthday. we'll humour him tonight. :)

(asher's b-day is actually wednesday, but we celebrated today because he's with ed on wednesday. and he doesn't know it's not really his b-day. he got an elmo cake, elmo lego, and thomas videos! who cares what day it is!!! LOL)

vote for me! :)

i don't know how many of you realize this, but i'm part of a huge network of health bloggers at http://www.wellsphere.com/ - communities of people blogging about a wide range of health issues (and not just paeds cardio - believe it or not, there ARE other health issues out there! who knew?! LOL). i'm part of the Children's Health Community. feel free to check out the site. it's pretty cool. :) there's an icon on the left sidebar, and you can click there to go to my profile, or just click the link above to go to Wellsphere and browse on your own.

anyhoo... right now there's the People's Health Blogger Awards 2009, and i'm in the running for Best Blogger in the Children's Health Community. there's a button on the right sidebar on this blog. click it and vote for me. :)

and then, feel free to add the "vote for heather" badge to your blog, too. the code is on my profile at wellsphere.

thanks so much!! :)

what a week! aka, the full report

what a week, indeed! definitely had its ups and downs, but when does it not when asher's involved? and it all ended on an up-note, so i'm happy. tired, but happy. so, here we go.

like i said the other day, there was a mix-up in the dates of the cath, which meant that we made the long (and painfully early) trek to toronto a day early. ugh. but we did pre-cath clinic anyway on tuesday, got everything done (chest xray, bloodwork, ecg, echo, informed consent), and came home. i laughed about the informed consent because, in case you hadn't noticed, i could have signed it without talking to the fellow and it would still have been informed. LOL but legally we have to go over the details, risks/potential complications, so we did, i signed the form, and we came home. and asher spent the night at his dad's, while i got some rest (didn't get out of bed till almost noon on wednesday). so it wasn't a waste, other than financially.

anyway, we got up early again this morning, and headed off to toronto. and as soon as we pulled into the parking lot at sick kids, asher got ticked. "i no want go hopsital, mommy." "i'm sorry, honey, but we have to be here today." "no! i don't yike you, mommy." (yeah, that's his new thing. "i don't yike you." isn't it special. haha he pulled the same thing last night when i turned the light off in my bedroom. he turned his back to me, and the only thing he would say to me for 20 minutes was "i don't yike you." hey, at least he's honest. lol)

so up we went to the cath lab. we registered at 8:30, and settled ourselves in the waiting room. where we waited. and waited. and waited.

they took us back at 10:00, to get him ready for the cath. height (92 cm), weight (13.3 kg), sats (84%), BP (100/66, which is high for him anymore). antiseptic bath, fresh diaper, and the gown. he insisted on wearing the big one. and by "big," i mean the sleeves were at least 4" too long, he was tripping over the bottom, and the ties left it so big it was almost falling off his shoulders. LOL but on a day like today, you give the boy what he wants. lol

dr redington came in just past noon and talked with us. here's what he told us:

1. they weren't going to do anything, just look around. basically, not the full pre-fontan, since they did that in february, and got a lot of the information they needed. but they needed to repeat the haemodynamic portion of the study (pressures in the heart and lungs), so it wouldn't take more than an hour or so.
2. they were hoping to find that the pressures had improved, since this was the stumbling block last time. in february, asher needed the fontan, but his pressures were too high. so they hoped the therapy they started him on then (carvedilol and ramipril, instead of just enalapril) had succeeded. if it didn't, they'd have to start from scratch, figure out what to do, and get on it.
3. he asked how asher's been lately. i told him that he's now short of breath, running out of energy and getting tired more quickly, and he was grey over the weekend. he looked at asher and said, "well, he is too big to be just a glenn anymore." translation: based on age and size alone, it's time for the fontan.

then the nurse came in, took asher into the cath lab, and we went for lunch.
the cath was complete in a little over an hour. dr redington came out, and said that asher's numbers had improved, and he looks like an excellent candidate for the fontan. dr russell will likely present asher in conference on monday, and they will hopefully do the fontan in the near future.
believe it or not, this is actually good news. asher needed the fontan 10 months ago, but they couldn't do it. but they can now, so this is wonderful.
for those who don't understand why OH surgery would be a good thing, this is the final stage of asher's surgical course. it is a planned surgery, in that we've known from the get-go that it was coming, and now asher is in the ideal position for it. once this surgery is done, he should remain stable (touch wood) with reasonable function for quite some time. he will still at some point require a transplant, but we're hopeful that the fontan will allow him to last a few more years before that becomes necessary.
so this is all very good news, and i'm (relatively) happy. so now we're just waiting for a phone call from dr russell next week with their decision. i'll post when i hear.

the cath is done!!!

dr redington came out a while ago to talk to us. asher did very well during the cath, completely behaved (shocking, i know! lol), and he's now an excellent candidate for the fontan.

his numbers are better now than they were in february, and function appeared to be somewhat better, though they can't say for sure until they review all the numbers later.

dr russell will likely (as is her wont) present asher in conference on monday, and we should hear fairly soon about a date for the fontan. dr redington said asher should be having it done in the near future.

so there you go. asher's cath went well, everything looked good, and i will let you know the surgery date as soon as i know. we should be able to leave here in the next 4 to 5 hours.

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.

awww.... how sweet is this?!?!

asher and charlie are absolute best friends. they go everywhere together... including dreamland, it seems.

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. :)

Heartchitecture

now, normally i wouldn't review a book on asher's blog (especially a book i'm not finished reading yet), but as soon as i read this passage tonight i knew it had to go on his blog. in fact, if it weren't such a long quote, i'd put it on the sidebar so everyone could read it whenever. but alas, it's lengthy.

it comes from an amazing book called The Wet Engine by Brian Doyle, who is the father of a remarkable single ventricle boy named Liam. the book is all about the heart, from a physiological point of view, but also from a more metaphorical/spiritual/poetic perspective. i'm only on page 44, and i'm already hooked. (oh, and the name of this post - heartchitecture - is the title of the chapter.) so here you go:

consider the astounding journey your blood embarks upon as it enters the pumping station of your heart. in a healthy heart, a heart that works as it has been designed to work over many millions of years by its creative and curious and tireless and nameless holy wild silent engineer, blood that has been plucked and shucked of its oxygen by the body straggles back into the right atrium, the capacious gleaming lobby of the heart.

this tired blood, dusty veteran of an immense and exhausting journey, shuffles forward to and through a small circular door in the wall, a door with three symmetrical flaps: the tricuspid valve.

this circular door opens into another big room, the right ventricle; but at the very instant the right ventricle is filled to capacity with tired blood the entire ventricle contracts! slamming in on itself, and our tired heroes are sent flying through the pulmonary valve and thence into the pulmonary artery, which immediately branches, carrying blood to the right and left lungs, and there, in the joyous airy countries of the blood vessels of the lungs, your blood is given fresh clean joyous oxygen! gobs and slathers of it! o sweet and delicious air! as much as those heroic blood cells can hoist aboard their tiny cellular ships, and now they resume their endless journey, heading into the marshlands and swamps of the lungs, the capillary beds, which open in the small streams and creeks called venules, which are tributaries of the pulmonary veins. there are four of these magic pulmonary rivers carrying your necessary elixir back to the looming holy castle of the heart, which they will enter this time through the left atrium, whose job is to send it on its quest and voyage and journey to the vast and mysterious wilderness that is You, and to tell that tale of the journeys of your blood cells through the universe of you, would take a billion books, each alike, each utterly different.

- Brian Doyle, in The Wet Engine: Exploring the Mad Wild Miracle of the Heart, pp 16-17



here's the link, for ordering this book on amazon.ca: http://www.amazon.ca/Wet-Engine-Exploring-Miracle-Heart/dp/1557254052/ref=sr_1_1?ie=UTF8&s=books&qid=1257856172&sr=1-1