a little "fyi"...

ed took asher to emerg this evening. it seems that pesky tube-site infection that he's been fighting for a while now is only getting worse. i'll let you know how it goes when he brings asher home, but likely asher will be coming home with a prescription for clyndamycin (sp?).


UPDATE: asher is home from emerg. tired, a little cranky, but fell asleep with no problems. they prescribed clavulin for him this time, which hasn't really worked in the past. but i'll keep an open mind this time, and see how it goes, but don't be surprised if you hear in the next few days that we've gone back to emerg for the same infection. i'll keep you posted.

click this title or the text of this post to check out a VERY interesting article

well, this is interesting... they've identified a gene which leads to CHD... including (potentially) HLHS. it seems that researchers at the University of California, San Diego Medical Center may have stumbled upon something here. you can bet i'll be asking about this at our genetics appointment... once we get one (the referral is in; we're just waiting for the date).

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.

looking back tonight...

three years ago tonight, asher was dying, although i didn't realize it at the time. one year later, i wrote a letter to his first cardiologist, the one who diagnosed him. i thought i'd share the letter one more time.

dear Dr Pepelassis,

i'm looking back tonight, and i want to share this with you. we've never really talked about it; just kind of survived it and moved on. that's healthy, i suppose. but i'm looking back tonight. anniversaries have that effect....

i thought he was just "waking up." you know, the third baby, you get kind of... i don't know... complacent about newborn stuff. you know what to expect.

he'd been a good sleeper all week, but that night - one year ago tonight - he wouldn't sleep. and he was fussy. also normal, i thought. so i tried nursing him, to help him settle. he vomitted everything back up. and then he started crying. so i tried nursing him again. again, vomit. so i thought he must have some gas. no burps. i figured he just didn't want to nurse right then; i'd wait till he wanted it. i walked with him for about an hour or so.

but i was tired. a week post-partum​, with 2 other kids. the 2 year-old still was not sleeping through the night, and both of them (4 yrs and 2 yrs) still nursing (that's right - i tandem nursed 3 kids). i was so tired. my mother offered to walk with Asher for a while so i could rest. then an hour later, we traded. we did that most of the night, until, as our absolute last resort, we bundled him back up and put him in bed with me.

i worried a bit about the extra blankets for him. see, all evening and right up till morning, he would sweat. our house is old, so it's a bit drafty. so i had him bundled, covered with a couple extra blankets, and of course a hat. but then he'd get hot, so i'd unwrap him, let him cool off a bit. but then he'd get cold. so i'd bundle him again. then unwrap him because he was sweating. all night that went on. but it was winter and our house is drafty. (it wasn't too bad, though. but we were trying to account for the cold and sweats, and that's what we came up with. it just never occured to us that anything was wrong...)

wh​en i woke up, just before 6am, Asher was in bed lying beside me, but he wasn't crying anymore. but he was breathing fast and grunty. and his face... i'll never forget his face. he was looking into my eyes. he looked scared. he looked desperate. "mommy, help me!"

i took him to emerg around 6am. they rushed us in. that scared me (STEGH has a bit of a reputation). the nurse ran out of the room, dragging others in to help. and doctors! at one point, there were 3 doctors, one IV guy, 6 nurses and me, all freaking out over my baby. (well, i don't know how much i was freaking, to be honest. i think i was in shock. a gift from God, shock is, let me tell you!). i remember the doc came over to me and said, "we have to send him to London. they can help him there." i said, "but he just needs oxygen, and then he'll be fine." "no, this is bad." "it's just a little murmur," i said, "just give him some oxygen and he'll be fine!" he said, "oxygen can't fix this." i said, "yes it can! he just has a little murmur, he'll be fine, he just needs oxygen." "this is not a murmur. oxygen can't fix this. we have to send him to London right now."

i drove myself. not the best idea. i know that now. but there was no room for me in the ambulance, and there was no one i could think of to drive me. i cried at every stop, because it was delaying me, and i needed to get to London. i truly believed that they would "fix" Asher there. as i got over the 401, and the ambulance flew past me, i bawled and yelled at other drivers to get out of the way. i had no idea what was wrong with Asher, but i knew we were racing against the clock.

Asher was already curtained off and surrounded by nurses by the time i got to emerg. the doctor was nice, though i don't remember her name (was it Dr G? she always looks familiar, but again, shock. it's wonderful, in a horrifying kind of way.)

i don't remember when you got there. i know at one point i wondered why you would be looking at his heart. i still had no clue what was going on. i don't remember when you introduced yourself, though i'm sure you did (in fact, i never did catch your name that day. Paula told me when Asher was up in step-down.) i don't remember if you told me about Asher's condition or what it was called. but i will never forget what you said to me next: "usually babies with this condition are operated on right after birth. he's 8 days old now. it's too late. he's going to die."

is that when i burst into tears? or was i already crying? i don't remember. but i do remember how i felt at that moment. all i felt was the most venemous hatred i have ever known. never before (or since) had i despised someone so thoroughly or passionatel​y as i hated you at that moment. and yet you kept talking! something about calming down in that little room (you know the one i mean. yeah. i hate that room) and then coming back out to say my good-byes. i remember wishing someone would drag you away, why were you still talking to me i hate this man someone make him stop talking to me someone make him go away i hate him! that's all i could think. (don't worry. i changed my mind about you pretty soon. just keep reading.)

i don't remember much until you came to talk to me some time later (still no concept of time; still shock). you said, "i just talked to the guy in Toronto, and it may not be too late. they're going to try. but your son needs surgeries. 3 surgeries over the next 2 years. i'm so sorry that it's 3 surgeries, i wish it could just be one." there you were apologizing that Asher would need 3 surgeries in 2 years, and all i could think was "you just told me my baby was going to die! i will take the 3 surgeries, thank-you very much!" if i hadn't been weeping (for joy this time), i would have hugged you. i have never loved a complete stranger (or even most people i know, for that matter) so intensely or joyfully as i loved you at that moment. (see, i told you i changed my mind).

the rest of the day was a blur (again, thank the good Lord for shock!). i remember bits here and there. i remember our pastors coming to see us. i remember Dr A coming in dressed very casually (plaid shirt, jeans, what looked like workboots) and putting a line in Asher's belly button because they had run out of places for IVs. so many lines - wires, tubes, catheter... Asher was more technology than baby. horrifying.​

but mostly, as i look back, i remember you. i watched you very closely that day. for one thing, you were the man who was saving my baby's life, so i had a vested interest in everything you did. but also, you are delightfull​y (and horrifyingl​y) expressive. so many doctors that i've met over the last year aren't. but you... because of you, i had hope. yes, i was still more terrified than i have ever been, before or since. but you gave me hope.

once, i walked in while you were echo-ing Asher and i heard you say, "oh, thank-you, God!" i cried.

at another point, i mentioned our family doctor. you said, "Tracy O? she's our doctor, too. she's really good." (if a doctor can make chit-chat while he's working, things aren't so bad. at least a mom can breathe, if only for that moment.)

ano​ther doctor was checking on Asher and you were joking around with him and laughing. i have no idea who the other doctor was or what you were talking about. i just remember your laughter.

as​her and i (and the rest of our family) have been through a lot over the last year. we've met a lot of cardiologis​ts (most of whom i like) and other specialists. but, in all honesty, you are far and away the best and my favourite doctor i've met thus far. if it weren't for you, Asher would have never made it past 8 days. and so, i can honestly and sincerely say that i love you from the bottom of my heart. i don't know if you believe in God, but i do, and i thank Him often for you, for the amazing mind and heart He gave you, and for the gracious gift of you that He gave to all of us, and especially to Asher. you are a wonderful doctor and a wonderful human being, and you are an absolute blessing to your patients and their families. i simply cannot say enough good things about you (which says something, because i talk a lot!) and i rave about you every chance i get.

sure, dr caldarone and dr buffo also hold special places in my heart, and they, too, will get letters in turn as our anniversari​es with them roll around. i am also deeply grateful for them and to them. but you... you are the most wonderful blessing to our family. without you and your determinati​on and skill one year ago, i would have lost my little baby. i would never have gotten to see his beautiful smile, hear his delightful laugh, hold him as he sleeps, cuddle him close, watch him play with his brother and sister, or enjoy him as he grows.

i know Asher isn't "out of the woods" yet, and he may never be. but i know that he's in good hands as long as you're his doctor.

than​k-you, dr p, for everything you have done and continue to do for Asher. you truly are a gift from God.

sincere​ly,
heather

(if you click the title of this post, it will take you to asher's first blog, with the first 15 months of his story.)

an entirely hypothetical question for you...

and remember... entirely hypothetical. ;)


suppose, hypothetically, that there is a young child, say 3 years old. now, let's say this hypothetical child has a CHD, a severe CHD, let's say, for the purposes of this entirely hypothetical conversation, HLHS, with some quirks... let's say, stent material in his AV node (the cluster of nerves in the right atrium that controls the pace of the heartbeat). again, this is all hypothetical.

ok, this hypothetical child needs a name. so let's pick one out of the air... Asher.

remember, this is hypothetical. ;)

ok, so there is a 3-year-old boy named asher, with severe HLHS and stent material in his AV node. and hypothetically, that's a bad thing, since it's metal right in with electrical wiring, and one doesn't need to be an electrophysiologist to know that that's not the best combination.

now, this hypothetical child has developed a lovely (ugh) habit of getting sick every few months, and spiking fevers... hypothetically. and when he does this, suppose he seizes. long seizures, lasting 20 to 30 minutes each, until the tylenol kicks in. and once the tylenol wears off, the seizures start again, until the next dose kicks in. hypothetically.

and these (hypothetical) seizures, at one point, ticked off the stent in the AV node, and the (hypothetical) child now has a tachyarrhythmia (heart rate speeds up for no apparent reason). he is on meds for the arrhythmia, so it's under control for the time being.

so here's the question: given the limited cardiac reserve of this particular hypothetical child, is this situation a problem? should this hypothetical child be refered for a neurology consult? should this tendency to seize be checked out, monitored, and treated, if necessary?

i posed this (entirely hypothetical) question to a cardiologist, but her specialty isn't electrophysiology, so i'm not entirely convinced i believe her answer. so i'm asking you, gentle reader, for some thoughts. should i email an electrophysiologist i know and ask him (he wasn't asher's doc, but we saw him all the time... and now he's in winnipeg)? should i ask asher's new cardio in london about her opinion? should i leave well enough alone, and not tempt fate? or should i go with my gut and ask for a neuro consult anyway?

febrile seizures are not a huge neuro issue. in fact, they're pretty benign. they don't really damage the brain. but really, it's not the brain i'm worried about. it's the heart (shocking, i know). can his heart withstand repeated episodes of seizures? this happens every few months, in conjunction with mystery illnesses that i believe are migraines. i'm just looking for some input here. maybe i'm paranoid. this is a distinct possibility. but maybe not. and maybe i have to be paranoid with asher. who knows. but i just don't know how comfortable i am just leaving this situation alone. i almost think it requires some sort of investigation. but i don't know. if you have any thoughts, please post a comment here. thanks. :)

see? sometimes it's GOOD to be impulsive!!!

this afternoon, i had a to-do list a mile long. and two boys to get dressed so we could pick blithe up from the bus stop. what did i do?

what every good mother does.

sent an email to 2 cardiologists and asher's surgeon.

i said that asher has just turned 3, and he's an amazing person, doing very well, full of life and love and energy ("thank God for HLHS!! if he had a whole heart, i'd never catch him!! LOL"), and how much i appreciate all their hard work to keep asher going.

so i got a nice little note from dr p, who couldn't believe it's been 3 years already.

and then...

i got a reply from...

dr c, asher's surgeon. (see A Lexicon of Asher, on the right sidebar. yup, that's him.)

apparently, he's very happy to see that asher's thriving, and loved the pics. and...

he wants to use asher's story on a website that will be launching within the next month. it will be a place for CHD patients and families, and he thinks asher's story will be a huge inspiration to other heart families. can you imagine being a mother who has just been told her baby has HLHS, and all those feelings (believe me, it's not the greatest news to be given), and then she reads about asher, and sees his pics and how cute and happy and healthy he looks?!

so that's the awesome email i got from the surgeon, and the exciting thing ash and i get to be part of. (some of you were wondering what i was talking about on my status lines earlier tonight. now you know. lol)

i'll post the link when the site is up and running. :) so stay tuned, then check us out!! :)

altogether now!

happy birthday to you!
happy birthday to you!
happy birthday, dear Asher!
happy birthday to you!!

3 years ago my baby was born, 8lbs 14oz, at home. he was absolutely wonderful, absolutely perfect, absolutely loved.

and you know what? i still think he's perfect, just the way he is.

i love you, little man. happy birthday.

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

HAPPY THANKSGIVING!!!!!

we had a wonderful thanksgiving this weekend, full of family, and community, and generosity. and of course, lots and LOTS of food! in fact, at this very moment, i have a fridge full of leftovers, and pot of turkey soup on the stove (which i'm making for the first time in my life! i hope it turns out ok!), and three very tired children (and one very tired doggie) all sleeping peacefully in my house. :) it was such a special weekend for us, and i hope yours was just as memorable. :)

happy thanksgiving, everyone! :)

(and yes, that's a pumpkin hat, which asher found downstairs at Nana's and wore upstairs... and he walked into the dining room with a huge grin on his face, so amused with this hat!! LOL)

enough of the bad news... here's what he's REALLY like :)

at bedtime tonight, i asked asher to put his boots by the door. i meant, in the basket with all the other kids' shoes, or on the shoe rack with mine. i forgot that a 2-year-old asher is a literal asher. lol

we were cuddling in bed tonight, trying to get him to sleep. (didn't work, btw... he's playing with blocks right now... serves me right for letting him fall asleep at 5pm.) anyway, he rolled over so he was facing me, and he said, "mommy, you so pretty. you so snuggly, too." and then he threw his arms around me and hugged me.

he plays with charlie (our dog) every chance he gets. and charlie is very patient, letting asher grab onto his face, pull his legs, that sort of thing. sometimes, charlie starts licking him, which gets shrieks of delight and "charlie likes me! charlie likes me!!"

we went grocery shopping today, and he threw a fit when i wouldn't buy him cheese strings. he absolutely loves those things!! the kid's obsessed with fake cheese! ugh!

i think that's about it for now. there's a million other things, but i'm gonna keep them for myself, if you don't mind. ;) i just wanted you to know he's more than a wonky heart and feeding tube. he's an absolute joy, and i adore him. <3

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??

because it's not enough with asher's stuff...

so much has happened recently around here...

asher's tube is still (or again) infected, quite badly. doc put him back on clyndamycin for another week. i'm hoping this will clear it up, because he spent wednesday, thursday and part of friday crying because his tube hurt so badly. he hasn't been crying this weekend, so i think it's on the mend.

i'm going to try something new with him once this course of antibiotics is done. i'm going to try giving him some probiotics. he's been on antibiotics since early august, with only a few days here and there without them. and given that, after the staph infection earlier this month, he ended up with a fungal infection in the tube site, i really think this has the potential to help him immensely. (for those who don't live in paeds clinics: antibiotics kill bacteria. that's what they're for. and they do a good job. but the problem is that they kill all the bacteria. our bodies still need some bacteria to keep everything balanced. but when the good bacteria is gone, it disrupts the balance, and things like yeast and fungus can begin to cause problems, which explains why some people struggle with yeast infections while on antibiotics. probiotics help restore the balance to the body, by promoting the growth of "good" bacteria.)

on another non-asher note... blithe was diagnosed earlier this week with ADHD. and, i know this will shock you, so make sure you're sitting before continuing to read this sentence... sitting?... good. i've started a blog. it's called My Girlie & Me, and in it, i'm going to write about how blithe is doing, medical and non-medical ways of dealing with this condition and how blithe is doing with it all, and resources i've found on the subject. feel free to check it out: http://adhdmomandkid.blogspot.com/ i just set it up today, but rest assured there will be more posts coming. (as if there was any doubt about that! LOL)

now, i know it's been a while, but once you read this post, you'll understand why it's been so long since i updated.

ok, so last time i posted here, asher was getting his g-tube. and that went really well. it was very quick, not quite as traumatic for asher as tube changes usually are, and we were all happy. since then, the tube's been working great, and i'm loving this whole non-gj life.

there's even a bonus i hadn't anticipated! asher gets hungry now! he actually eats at every meal, and actual measurable amounts, no less! and he's loving it! i think he's starting to feel more like an average, normal kid, instead of a SN kid, and that's wonderful! well, except for one minor little problem... ALL HE WANTS TO DO IS EAT!!!!!!! wow, never thought i'd complain about that! lol

and if you're wondering, his favourite foods are chocolate chip cookies, pepperoni pizza, and cheese. specifically, "orange cheese." if it's not orange, he's not interested. lol

as for everything else, well...

as i said in an earlier post, asher's tube site was infected. i took him to emerg on the sunday night a couple weeks ago, and they swabbed it, and the sample grew staph. nice, eh? ugh, that's what happens when you're in the hospital as often as asher is. :( so we were given a script for clyndamycin (aka, Dalacin). but...

and you know there's always a "but" with asher...

the infection didn't clear up. so after five days on clynda, we trekked back to emerg. where they swabbed the site, and they prescribed cipro, but told us to continue the clynda for its full course, because of the staph. but she added, if it got any worse, asher would have to be admitted for IV antibiotics.

so we gave the cipro a whirl. but after a few days of that, the infection just looked worse. and i mean, it was the worst-looking tube infection i've ever seen, and my boy's had some doozies. (remember when he had to be admitted for this very thing? yeah, that was bad. this was worse.) so again, back we went to emerg, with bags packed, ready to be admitted. by now there was an absess-looking-thing on the site, and it was all things nasty infection. blech! all i'd have to do was look at it, and he'd cry. and this after a week and a half of big antibiotics. we saw the doc, who swabbed the site again. apparently, the previous swab hadn't grown anything, but the doc this time was certain it looked like MRSA (drug-resistant staph... not good). so he discontinued the cipro and prescribed... get this... keflex. that's right. the med that has NEVER worked for asher's tube infections. that's what he gave us. and i said to him, "that never works. he's been on it before, many times, and the infections always get worse. it's not going to work." he says, "no, staph responds to keflex. so we're gonna try that." forget that asher has a weak immune system and half a heart and really can't tolerate these kinds of stubborn infections. nope. doesn't matter. we were sent home with a script for keflex.

i was not impressed.

so, the next morning, i called my favourite paediatrician. her advice (and i'm quoting here): "take him right back to emerg right now and demand to see dr s."

well, you know me, i always do as i'm told. ;) so we went back to emerg one last time. where dr k consulted with dr s (infectious disease specialist), who figures that since the last two swabs grew nothing, that the problem is likely no longer bacterial, but rather fungal, and the antibiotics are making it worse.

well, let me just say this: dr s is my favourite person ever now! the med she prescribed worked beautifully - after the first dose, his site was noticeably better, and by the third (and last), it was back to healthy.

you'll notice i wrote "was back to healthy." that's right, past tense. ugh. i changed asher's dressing today, and it was nasty. oozy and red and painful. needless to say, he was not a happy camper. so i took him to dr b today, and she looked at the site, and we left with a prescription for clynda again. so we'll see how this works. cross your crossables. :)

so there you go. several trips to emerg, a couple nasty infections, and charlie is muttering in his sleep right now. lol has nothing to do with asher, but it's cute. lol

oh, what a wonderful morning!! oh, what a beautiful day!!

ASHER GETS HIS G-TUBE TODAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

mind you, the site is infected right now, which took us to emerg last night, but we got a script for the antibiotic that doesn't clog the tube, so i'm happy. now just cross your crossables that they will still change the tube, despite the infection.

now i'm off to do some meds (a touch late, but it's still good), and feed the kidley-winks, and get ready for the day ahead. (oh, and collect garbage and maybe do some dishes and tidy and change bedding.... aaaaarg! why can't housework ever just STAY DONE?!?!?!?!?!?!)

WOOHOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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

the team was in a few minutes ago, and they all agree asher looks great and is ready to go. so once they're done rounds, the resident will come in, check asher out one last time, and we can leave.

we're already packed. ;)

i'm happy! (it's like they read the blog or something LOL)

the team came around just a few minutes on rounds. they're very happy with asher's progress today. and all his cutures have come back negative, so no little buggies anywhere, so that's good, too.

so, the plan at the moment is:

• stop the antibiotics
• cancel the LP
• send us home in the morning.

now, usually, they would just send us home immediately once they stop the meds. but this is asher, and they all know that, so they're keeping us overnight, just to make sure he doesn't relapse. and given that he can now move his head and next, and he has some energy (as he babbles and flops all over his crib beside me right now, LOL), and he doesn't seem to mind the light so much now, they're calling off the LP.

now all this is assuming he stays on the track he's on at the moment. if any of this changes, and he gets at all sicker tonight, they're going to go ahead with the LP, restart the antibiotics, and keep us here longer. but right now it doesn't look like that's gonna happen, so i'm ready to go home tomorrow morning. YAY!!!!!

also, i just got off the phone with GI, and apparently, we have an appointment in Interventional Radiology next monday (31 aug) to get a g-tube. so that's exciting, too! :)

adn a quick note to those who'll understand this: i saw that doc, a few times now, actually, and yes, my IQ remained in the triple digits, so that's progress. ROFL

a treat for us all ;)

asher, cuddling with his new doggie, charlie (yes, the dog even has bum wrinkles!!!). as you can see he's doing much better today, though still not back to 100%. the bigger doses of antibiotics seem to be doing the trick, so i'd be content to stay here for one more day, and go home tomorrow. that would be wonderful. and hey, if they don't do the LP, i'll be happy. ;)

wha-???

well, today is another day. asher still looks like crap, though he has a bit more energy, he's talking a bit more, and he's not yelling at us so much today, so that's good.

on the other hand, he's still lethargic, he's still sensitive to the light. he still doesn't want to eat or move. he's still grumpy and doesn't want anything. oh, and he's still sweating like a pig.

as for the title of this post.....

cardio popped in this morning. and looked at asher and agreed that he's sick, but that it's not cardiac (which i know it's not, so that's fine). she noticed that he still doesn't like the light, and that he's not even close to his usual self, and that he's still somewhat febrile. so they're going to keep an eye on him, albeit from the peripheries, but still. she was supportive, and pleasant, and agreeable, and open to discussion.

so still no news from the team if/when they'll do the LP today. asher is looking a bit better, but that's after huge doses of big antibiotics, so who knows. i'll post when i know more.

it's a rollercoaster with this kid, it really is

so karin talked to tomorrow's attending, and he suggested waiting till tomorrow to do the LP. the idea is this: if asher does anything, well, asher-ish, there will be a whole hospital of people who can handle it. whereas right now, there's not so many people around, so it wouldn't be as easy to handle any asher-esque complications. as for the infection itself, he doesn't believe there would be too much of a change overnight, so it's reasonable to wait till morning. he starts at 8, and karin will try to get him to come see asher early, and we'll get on top of this as quickly as possible.

in the meantime, they're doubling his doses of antibiotics to meningitis doses, and hopefully that will do something. because, as i said in the last post, he's been on these 2 big meds for over 24 hours, and he's only getting worse. karin also gave me a heads-up that they might be changing his meds tomorrow. apparently, ampicillin isn't commonly given to older kids like asher. they're reserved for younger kids. so they may decide to switch it to vancomycin.

frankly, i don't like that idea. i know it's probably for the best in some ways, but asher's been on vanco before, and it wasn't pretty. it tends to destroy his iv's. and since he's a VERY difficult poke, it often takes several attempts to get a new IV started. and since they blow with almost every dose, you can see why this is not my favourite part of the plan. i mean, i get the whole "do what you gotta do" thing, but i don't want my baby to get hurt again. it took at least 6 pokes yesterday to get this one line in, and his hand is already looking puffy (though still soft, so we're just watching it and keeping our fingers crossed).

so that's the plan as of right now. i have no idea what tomorrow will bring, but i'm trusting God to take care of my boy. He's gotten him through some pretty scary times before, so let's just pray that He'll bring asher through this one, too.

i'll post tomorrow with the details, as i know them. so, yeah. ttyl.

worst. choice. ever.

ok, this will be quick, because i'm nauseous thinking about it.

doc karin came in tonight to check on asher, and in the course of her assessment, she saw:

• he doesn't like turning his head
• he has a headache
• he looks terrible, even after 24 hours of two big antibiotics
• photophobia. which means that he's afraid of light. she went to look at his throat, and he freaked out, squeezing his eyes shut, covering them with his hands, and freaking out.

so here's the thought:

meningitis.

now, if it's viral, there's really nothing we can do, other than treat his symptoms and let the virus run its course. if it's bacterial, we'll need to attack it with meds.

so they're doing a lumbar puncture (spinal tap) tonight at 11. i'll post afterward with details.

day 2.

well, we slept in a bit this morning, like till 8:30, which really is sleeping in for us (sad, but true). the nurse came in to do a vitals check, and guess what she found. a fever. again. 39.9C under the arm, which is 40.3C in "real" temp (for you non-metric types, that's 104.5F). i told her that this is the range where he starts to seize, so she shot him full of tylenol and we're keeping a close eye on him. and so far, no seizures, so that's good. as for his meds, she gave him the HCT and ramipril (diurretic and BP/function med), but alas, they can't do carvedilol here, so i had to race home to get our home stash. so that sucked, since i had to leave asher and pay for parking, but you gotta do what you gotta do, so off i went.

he got his breakfast this morning, which is exciting. i love that he can eat now, because it means he actually gets real food (or as close to it as possible in a hospital). breakfast this morning consisted of froot loops, 2 milks, a muffin, a piece of cheese, and some apple sauce. all he wanted was the froot loops (i'm so proud), although it's 12:30 now and he's barely touched them (i've eaten most of them). i managed to get some apple sauce into him, but i had to feed it to him, and he didn't take much. he just wasn't hungry. :(

cardio came to see him this morning, too. actually, it was the doc who was hghly recommended by dr buffo back in february. i really liked her. she took time to listen to me, she knows about asher, and she seemed to believe that he belongs here, at least for the time being, until we get the culture results back. she agreed that he needs to be here to get some antibiotics, and she reassured me that they're keeping an eye on him while he's here, and they'll be up tomorrow to check on him again.

then lunch came. cheese omelette, potatoes, veggies, pudding, grape juice and milk. he completely refused the potatoes (which were yummy, so i don't know what he was thinking! LOL), and the veggies (can't blame him there; they were pretty mushy and tasteless), and the pudding (which contains tartrazine and is in a BPA-full cup, so i'm happy he refused). he also refused the grape juice. and when i say "refused," what i mean is, he shook his head repeated and adamantly (given his lack of energy) and said, "nah. gross." gross! can you believe that?!?! what is wrong with this kid?! when i was a kid, grape juice was such a treat!! it was my favourite of the juices (b/c we didn't have fancy things like strawberry-banana back in the day)! can you believe this kid of mine?!?! i'm shocked and appalled. on the other hand, his refusal meant i got to drink his juice, so i'm happy. he wanted some omelette, but it had to be in tiny pieces, and he didn't eat much. probably only about 4 pieces, 6 at most, which is unusual, because he loves eggs. he just doesn't have an appetite. :(

and i can't blame him. he's so pale, he has no energy, he looks so terrible right now. it breaks my heart, to be honest.

at some point during the night, they must have turned his oxygen back on, but the resident came in and turned it off this morning, just to see what he'd do, and he's doing well without it, so we're happy. but we're keeping the prongs on him, because then he won't need the oxygen. haha this is asher. he likes to mess with people's heads. and i know that the second we take the prongs off him, he'll desat. haha so we're playing his game and keeping the prongs on. LOL

he's still getting his IV antibiotics. ampicillin and cefotaxime, for those who were wondering (i know someone asked, but i don't remember who it was, so i'm putting it here). they don't seem to be helping yet, but it hasn't been 24 hours yet even, so we'll have to see. but i'm a bit concerned about the extra fluid he's getting through the iv between doses. he's looking a bit puffier than usual now, and he doesn't pee as much when he's sick, so i'm watching and i'll mention it to the doc if he gets much worse. fortunately, fluid overload, while dangerous and loaded with complications, is pretty easy to treat, so it's not panic-worthy (yet).

and rounds this afternoon (gotta love the weekends, with lunchtime rounds, ugh!). the senior resident (whom we know well, and whom i really like) and the consultant (who's new, but seems nice enough) popped in, and they asked a bunch of questions, because no one can figure out what is going on with asher right now. they can't find a source for the infection, but they're certain there is something, based on his bloodwork. so they're going to do a nasal swab later this afternoon to look for a virus in there, because those can lurk without symptoms.

so that's the plan, as of right now. wait and see, run some tests. he's had more bloodwork today, and he'll likely have some tomorrow as well, just to see how things are progressing.

this is all so interesting, in some ways. it seems that every few months, asher comes down with the same sort of symptoms. but the consultant today did say to me, "make yourself comfortable." which means, they're keeping him until further notice. if we don't go home tomorrow (and i'm hoping we will, but if we don't) i won't be surprised. but as you know, i'll keep you posted, so check back often. talk to you later! :)

ok, so i was wrong about one little detail.

he's getting oxygen right now. he's only on 1 litre, but it is on. they'll likely be able to turn it off once he falls asleep, but for now, it's on. sorry about that.

plus ca change...... sigh....

ok, so remember the other day when i said that everything was going swimmingly and asher has never been healthier and more stable than he is right now? yeah. forget that. sigh.

as you may or may not know, summer is not asher's friend. he loves the sunshine, and he loves being outside, playing in the sandbox, driving around in his little tykes car, drawing with sidewalk chalk, riding his trike, you know, all that fun - and normal! - 2-year-old stuff. but, alas, summer does not return to love. heat and humidity really take a lot out of him, unfortunately. and since we live where we do, there's a lot of humidity. (as for heat, yeah, where's this global warming we're being told about? i mean, would it be too much to ask to have temps above 23C?!?! i mean, seriously!!! anyhoo...)

due to the heat wave this week, asher wasn't looking so good. very pale and sweaty, not much energy, and so on. and blue spells. yeah. he's been having blue spells all week. but again, summer is not an ideal time for my little man. so he's been looking pretty bad this week. but, the weather wasn't nice, so i didn't think much of it. just brushed it off, knowing this is what happens. (that being said, he slept at his dad's place on monday night, because his apartment is cooler than the upstairs at my place, and since ash was looking pretty rough at dinner in the cool kitchen, i sent him to ed's.) but other than that, i brushed it all of.

and then came a storm on thursday, and that broke the humidity nicely. so friday was GORGEOUS!!! asher spent most of the day outside playing, making wonderful memories (i hope) with his brother and sister in the backyard. but...

he turned blue again a few times. not too badly. i mean, i've seen him worse, and recently, at that. but still, it wasn't hot, it wasn't humid, so really, ash should not have been doing this.

at dinner on friday, he was blue. and i don't mean a pretty shade of baby blue. i mean, his mouth was navy blue, and his hands were blue-grey and COLD!!! so needless to say, i took him to emerg. if it was still hot and humid, i wouldn't have thought much of it, and moved on with my day. but it wasn't. and he was not looking good. still playful, mind you, so i wondered if i was overreacting a bit, but i can't really be too careful with ash when he does this, so i took him in.

and of course, true to form, we got there and he was great. good colour, playful, vitals were great. seriously, he played the whole time we were there.

and the resident came to see him, and i said to him, "yeah, he's looking great, he's got lots of energy, he hasn't had a blue spell the whole time we've been here, so i'm happy to just take him home now." he seemed cool with that, so he went to chat with the attending. who sent in a nurse to check his sats (can't send him home with blue spells without checking the sats). and they were... sit down... 69%!!!!!!!! and since ash usually sits in the low 80s, this was a HUGE problem. we moved the probe around, putting it on his finger, his thumb, and still 69-74%. so we went out into the hall and tried another machine, hoping it would give us a better reading. nope. still low 70s. ugh. so we had him sit down, and put the probe on a toe. and it was still low 70s. after a few minutes of resting, though, it crept back up to the low 80s. but again, that was after some rest. so....

chest x-ray, ecg, and bloodwork (just a cbc this time, so they did a finger poke). everything looked fine, although his haemoglobin was only a bit higher than cardio wanted (they said, "if it's below 130, we'll have to admit him" which means transfusion). (and why do we care about haemoglobin? haemoglobin is the fancy-schmancy name for red blood cells. these carry oxygen to the body. hypoplasts/single ventricles usually have high haemoglobin to compensate for the low oxygen levels. if it gets too low, then there won't be enough oxygen in the blood, which shows up as low sats. transfusion = higher haemoglobin = higher sats. there you go. a quick phlebotomy lesson. feel enlightened? you should. lol) ok, so cardio wanted to see something higher than 130. asher usually sits in the 170s at least. last night, he was at 140. so we got to go home! hooray!!! but wow! that was close, eh?? eep!

well, then this morning, blithe and bram got up at their usual 7:30-ish. which is usually when asher gets up. and he woke up. crying. so he came in and cuddled up with me. and fell right to sleep (with charlie. seriously, he was using the dog as a pillow. too cute!) and he stayed asleep. all morning. i got up around 11 (we didn't get home from emerg last night till after 1, so i was i tiiiiiredddd!!! and i thought ash was feeling the same, so i didn't think much of him sleeping in. though, i'll admit, that boy can run on surprisingly little sleep sometimes, and he never sleeps in. he gets up with the other kids every day, no matter what) and i thought ash would get up at the same time... which he didn't. he just stayed upstairs. so i let him stay, thinking he was playing with one of his toys or something and would be right down. nope. he fell asleep again. which he doesn't do. ever. i went up to check on him after a while, and he was feeling pretty warm, so i grabbed a thermometer and.... 38.1!!! i even checked twice, just to make sure!!! and it was under his arm, which means his "real" temp was almost 40. (for those who don't live in canadian hospitals, let me convert that for you. 38.1C is 100.5F. 40C is 104F. yeah.) so after a quick consult with his homecare nurse, we trekked off to emerg.

they did some bloodwork, and it turns out that his white cells are WAY higher than they were last night, and now his bicarb is low (which means his blood is more acidic than usual. i can't explain this part. i used up all my knowledge of phlebotomy earlier. sorry). so doc decided to admit him for a few days, at least until his blood culture comes back on monday. this way he can get some IV antibiotics to help him fight off whatever it is that bugging him right now. they're assuming it's viral, because they can't find anything. no sign of infection in his ears, throat, tube site or urine.

and earlier, when i got back from getting some clothes etc, he was on oxygen. it seems that while i was gone, his sats dropped down to the low 70s again, and the docs ordered low 80s, so they had to put him on O2 for a while. right now he's about 79 to 83%. once he falls asleep, those numbers should go back up. (hypoplasts/single ventricle kids are the opposite of the rest of us. when we sleep, our oxygen levels go down. when they rest, theirs go up.)

so now we're in his room on D7-400. he's febrile again, a little over 39 degrees under his arm (which means it's a little over 40), so now we're watching for seizures and waiting for the tylenol to kick in. and in the meantime, he's watching treehouse (go, diego, go... thrilling... why does he shout so much?!?!?!?!?!) and i'm blogging and chatting with a friend.

so, yeah. we're here for the weekend. but i'm reachable. i'll be online a lot of the time, and i have my cell phone on (i'll post the number on the sidebar, in case anyone wants to make arrangements to drop off a chai latte for me, hint hint). so, yeah, basically, we're just hanging out here for the weekend. i'll keep the blog updated as i know things (like what it means that his bicarb is low... you know me, i'm determined to figure that out!! LOL), and any results from his culture. we're crossing all our crossables that this isn't sepsis, but i'm maintaining that it's a virus, since he's done this twice before (last november, and again in may), and it was viral. so yeah, we just have to let this run its course, and then we'll be home. i don't think we'll be here long.

i'll keep you updated. i'm on FB, and i'll be keeping my status updated, and i'll update here, as well. so, i guess i'll talk to you later. :)

and the word of the day is: ABSURD, as in, "the last couple months have brought a million things i would NEVER have expected"

ok, so apparently, it's been about 2 months since i posted here about asher himself. and wow, so much has happened. but for once,

MOST OF IT IS GOOD!!!!!

i start with the not-so good, and then move into the good, so we're ending on a happy note today. sound good? ;)

ok... where did i leave off in june? ah, yes, the trip to our local emerg because of a tube infection, and doc wanted to admit asher for CHF (congestive heart failure). HAHAHAHAHA!!!!!! sorry, it's just that CHF is just such a normal part of our lives (horrifying as that may be, it's true) that i don't really think of it as admit-worthy. ah, well, it all got sorted out, and we left with a script for cipro.

which clogged his tube. yeah. seriously. so, the friday after we got the script, we were in Intervention Radiology for a tube replacement. i hate those, i really do. and asher's not a huge fan of them, either. :(

so they changed the tube, and saturday night, the cipro clogged his tube. again. so...

sunday morning, we were back in IR for another tube replacement. and you'd think, by now, i'd be pretty used to all this, and while it's stressful for both of us, i can get through it. apparently, this time, not so much. haha bit of a story here:

so, they've put in the tube, and the nurse is just securing it. doc has wandered off to do whatever docs do after shoving a tube into a toddler's small bowel. anyway, i'm standing there, still holding asher down, when all of a sudden,

"i'm going to pass out."

they look at me and i'm pale and clearly not feeling right. so they order me onto the floor. (and it's sunday morning, remember, so picture all this with me dressed up for church. yeah.) in comes the doctor, who grabs me a stool for my feet. then he gets me a pillow, because i'm resting my head on a (dirty) concrete floor. (and yes, in the middle of all this comotion, i actually thought, but this is going to wreck my hair and i still have to go to church! funny what the mind does at times like that, eh? because there's no way i'm that shallow! ) so then they give me a choice: do i want ginger ale, or orange juice? i didn't know, so they brought me ginger ale. and so there i was, lying on the floor in interventional radiology, with a pillow and a warm blanket, my feet on a stool, drinking ginger ale while the doctor dressed asher for me. it was quite a scene. so they let me lie there for a few minutes, to make sure i was ok, and then a nurse walked with me down the hall to mom and the kids, who were waiting.

now, this is how often we're in IR: mom asked what happened (because i am still very pale and clearly not feeling well), so the nurse fills her in. and then adds, "it's funny, because she's never done this before! all the times she's been here, and she's always handled it so well, she's the mom who can take it, so this is just so surprising!" that's right, she used the phrase "all the times she's been here." this nurse knows me. in interventional radiology. my least favourite part of a hospital. yup. ugh. but i recovered, and when we got to church, asher ran into his classroom and played as if nothing had happened.

so we finished the course of meds, and it was good.

then a week or so later, asher came down with a nasty cough. a barky cough. in july. yeah. croup. only asher gets croup in JULY!!! so off we trek to emerg, where we have a delightful chat with dr k, who was not the attending, but just popped over to chat. that's right, a social call from an emerg doc. yeah. nice, but in an absurd sort of way. anyway, we chatted with her, ash got a dose of dex, and we went home, and all was good.

and then i'm sure there was another tube change in there somewhere, but i can't remember when or why. but there was.

then his tube site got infected. again. ugh. so off to (london) emerg we trek once more. and the attending that evening was dr joubert, whom i really like. head of emerg, and as i recall, his specialty is paeds cardio. which i appreciate. LOL ok, so he looks at the site, swabs it, and gives us script for an antibiotic. but not cipro! something else, that starts with d, i think, but i don't remember what it's called. but it worked, so you can bet next time i'll be calling the pharmacy to find out what it was so i can mention it to whichever doc we're seeing. because this med DIDN'T CLOG HIS TUBE!!!!! HOORAY!!!!!!!

now, once that course was done, asher was pink, happy, not puffy, breathing nicely, everything was awesome! and THAT, my friends, was when we had a cardiology visit in toronto.

the nurse, siobhan, took one look at asher and nearly cried because he looked so good. all his numbers were absolutely perfect (well, for him, anyway). sats: 85-86%. that's all i remember. i didn't bother paying attention to his HR and BP because they were perfect, so who cares!! asher had energy, he was playful and happy; honestly, i have NEVER seen him look as good as he looked that day. even dr russell couldn't believe it! she was shocked that he looked so good, especially after 2 tube infections and croup. it was just so wonderful!

oh, and her decision re upcoming clinics: she's cool with us sticking with her in toronto, which is nice, because i'm still refusing to deal with london. and as for upcoming clinic visits: we'll have an echo when we go for pre-cath clinic in october and that's it!!!!!!! echo/pre-cath, cath, fontan. that's the plan. asher's doing so well, we don't need to go back until the cath!!!!

in the meantime, asher's doing fantastically with his eating... when he does eat. and he's doing really well with swallowing. he drinks water perfectly without a problem. you've probably heard him (seriously, why are all my kids loud swallowers?!?! it's disgusting!!! grossest. sound. ever.) so i took him to see dr b about changing his feeding schedule so it only runs at night. my thought was that, with the pump only being off a few hours a day, he's not getting really hungry, so he doesn't want to eat. but i know he can now, so we changed his feeds to run at night, and naptime. and the change in him is incredible!! he's so happy now to just be a normal kid! no more backpack, other than when he wants to be like blithe and bram and pretend he's going to school. and that's a normal backpack, not the one for the pump! and it's filled with toys, instead of medical equipment!! it's so wonderful!!!

and there's something else to report... but what is it?? ah, yes, i remember. asher was sliding off my bed the other day, and his tube got caught on the top of the mattress while he kept sliding. so... back to IR. that was last monday morning. another week, another tube. and this replacement was so bad... i almost passed out again, and asher was crying that it was "too scary" and "hurts me" and trying so hard to get away. but we got the new tube in, and he got some stickers, and by the time we left the hospital he was happy again. that kid.

well, after that tube change, i decided that all this needs to change. i took him to see dr b (paeds) that afternoon to discuss his tube. namely this: i want to change it from GJ to G. (for those non-enteral-savvy-types: a G-tube goes directly into the stomach. feeds can be larger, and spaced several hours apart [bolus feeds]. asher was given a GJ-tube, which goes through the stomach, down through digestive tract and into the small bowel [jujenum]. this is the 2nd-to-last resort tube.)

so, a little history here: asher has always been tube-fed, since his diagnosis at 8 days old. he had an NG-tube for the first 9 months (naso-gastric: goes up the nose, down the throat, and into the stomach). this was due to his difficulty swallowing (dysphagia) and fatigue during feeds. at 9 months, he was given a GJ-tube, because of his severe reflux (which by then was causing apnea and failure to thrive) and the aspiration risk associated with his throat problems. now, a lot of asher's gastric issues were believed to be caused by some damage to his vagus nerve, which would have happened during his Glenn (open heart surgery - including aortic arch reconstruction, done at 6 months). this damage would take time to heal (1.5 to 3 years is the norm). and fyi, the GJ-tube is one of the "last resort" tubes. it is NOT one they do routinely, for a lot of reasons. but this is the only one that would really help asher, so it had to be done.

so, since getting his GJ-tube in September '07, asher's been on continuous feeds, which means that he is being fed 20 hours a day at first, then down to 18 hours, and now, 13 hours (thanks to overnight-only feeds and high cal formula).

but lately, since changing the feeds to nighttime only, asher has been making remarkable progress in his eating. in fact, last night at supper, he ate almost as much as bram! he's been eating really well, actually, with no aspiration issues, no reflux, no difficulty swallowing whatsoever. he still tires out from eating, though, so he is not yet able to eat enough to sustain himself, but he's getting there! (and that's a cardiac issue, not gastric, so who knows if that will ever change) but now we're at the point where he only needs the tube for meds and calories. which means....

tomorrow morning, asher and i go to london to consult with gastro about changing that tube. i'm sure they'll say yes, and it's just a matter of time before that pesky GJ-tube is just a distant memory. :) i'll post tomorrow and let you know how it all goes.

so that's our lives over the last couple months (at least as far as asher's stuff is concerned). sorry it was such a long post. i'll try to do better at staying on top of things here in the future. promise. :)

If You Only Had One Wish...

so, i have an app on facebook called "circle of moms" and every once in a while (every week or so, i don't know, i don't keep track) i get a link to their blog. this week, there is a poll on there, asking what you would wish for your child. the choices are:

• health
• true love
• wealth
• influence
• professional success

so i'm posting the link here for all you moms... please participate, and read the comments that people have left (including my own, if you feel so inclined).

http://fansofbeingamom.com/?p=73

emerg update

so, as i said in the last post, i took asher to emerg tonight. i took him to our local hospital b/c his paeds in on call this week, so i felt comfortable taking him there.

well, with the waiting room packed, dozens of people waiting, asher was taken right in and put in his own room. the room, coincidentally, looked freakishly like an operating room, complete with giant light above the bed. and i say "freakishly" because, well, asher freaked out. he did NOT like that room. and he REALLY did not like that light. the one right above the bed. yeah. i have never seen him that upset in emerg before, which is saying something, given how much time he has spent in emerg.

anyhoo... the doc came in, and checked him out. i gave her a VERY brief history of asher (why do i keep forgetting about his looooooooooooong history of congestive heart failure? i mean, really, he's always right on the verge of it, and he's on so many meds for it. specifically, ALL his meds save domperidone treat it.) anyhoo.....

i guess this doc has never seen a toddler with CHF, so she was almost ready to admit him! LOL she asked me what i'd think about staying, and i said, "it's just CHF... i've dealt with that at home for 2.5 years. we usually just up his diurretic and go for follow-up. i don't really think he needs to be admitted for this." she didn't seem convinced.

we also went for an infection in his tube site. it's been getting uglier and uglier over the last week. and by now we all know about his wonky immune system, and how he really can't handle bacterial infections (or viral ones, either, but that's a whole other story). so, during my discussion with the doc about his tube site and such, i said, and i quote, "and i know the usual antibiotic for this type of infection is keflex, but it doesn't do anything for asher. we try it every time, and it never works." so she asked what usually does the trick, and i told her that cipro ends up being the med of choice.

so she went and discussed all of this with dr b. she said not to bother admitting him, but that she'd be on the ward in the morning, and if i wanted to bring him in to see her, that's cool. she also said, "listen to mom. keflex doesn't work. go with cipro instead." hooray for paeds!!!!! :)

so.... asher's home tonight, about to get his first dose of cipro, and i'm not sure, but he just might be going over to the hospital in the morning, just for a quick visit with "docter tollee" but i haven't decided yet for sure. but there you go. our evening. :)

and now, after re-reading what i've written, it sounds like my chat with the doc was, um, somewhat confrontational. it really wasn't. it was actually quite pleasant. in fact, she reminded me of my favourite emerg doc in london, so it was all good. :) i know this doc just hasn't dealt with anyone quite like asher before. and in the end, she listened to me, and that's a good thing. :)

i suppose he might have a point.... *might* have a point... i'm not saying he's right. but he might be. ;)

our dinner conversation tonight:

me: seriously, is there anything better than hash browns?!

asher: yes.

me: oh, really? what?

asher: me!!!

and on another quick note: i'm taking him to emerg tonight. his paeds is on call in town here, so we're going there. his tube site is looking pretty bad, and his nurse this morning recommended taking him to see the doc. and he's uber pale lately (see the pic), with blue spells, sweating, puffiness and SOB. :( so, i'm taking him in to get checked out, and i'll post sometime this weekend with the verdict.

hooray! more good news! go asher go!!!!

so, heard from cardio this week....

dr russell is very pleased with how well asher is responding to his new meds. so, her nurse told me yesterday that dr r wants to see asher again in clinic.... wait for it... IN 8 WEEKS!!!!!! MID-JULY!!!!!!!!!!!!! WOOHOO!!!!!!!!!!

and after that... the cath.

in... wait for it... OCTOBER!!!!!!!!!!!

and they'll book the fontan from there.

sign me up for more news like that! awesome!!!!!!!!!!

look at my boy, growing up so fast! :)

asher and "easter bunny" on his big boy bed
look at him, with his big elmo and the blanket i made blithe when she was a baby... and now she passed along to her baby brother. :)

how cute is this kid?!?!

so, i'm sitting here on the couch, chatting with a friend online. asher comes up up to me and sees my sock and says "sock off" and proceeds to pull off my sock. then, upon seeing my foot, he exclaims "toesies!!" and tickles me. ROFL

oh, anne, you're gonna weep! :)

so, asher's obsessed with the sandbox, the rain barrel, the big ball... basically, all things backyard, all things dirty, all things loved by boys. in fact, there have been times that he's woken up at 4am and gotten really ticked off with my mom and me because we wouldn't let him outside to play with "to-ees."

well, now he's learned the magical word... "outside." and as he was going in and out of the house this afternoon, he closed the door behind himself and said, "close the door."

i'm sure we set a new record today... Fastest Clinic Appointment Ever!!!

ok, i realize i haven't been keeping the blog very up-to-date recently. my bad. but there's a good reason for that. there's been a lot going on. i'll do a quick list, and then tell you about today's visit.
1. we've been going to SickKids every 2 weeks lately for clinic, to see the cardio Dr R, check sats, blood pressure and heart rate, and to up-titrate the carvedilol (beta blocker, used to regulating rhythm).

2. we've been to emerg a total of 4 times in the last 4 weeks: "raging" ear infection, blue spells and sweating and other CHF symptoms, double ear infection, tube infection with puffiness.

3. a trip to the paediatrician (but not our doc... it was a doc who doesn't know me) for a tube infection. he prescribed keflex. which, you'll note, has never worked for asher's tube infections. and this time was no exception, hence the trip to emerg for a tube infection (when we got cipro, which worked, but see #4...)

4. a trip to Interventional Radiology, because the cipro clogged asher's feeding tube. and it was far and away the most traumatic tube replacement we have ever experienced. :(

so that brings you up to monday... now for today's news (and pay attention to the timeline):

4am: heather hits snooze.

4:09 am: heather hits snooze.

4:18 am: heather realizes she has hit snooze twice now, but doesn't remember the first time. lol heather reluctantly hits "alarm off" and stumbles to the shower.

5:09 am: heather (showered, dressed, with some, but not all make-up on yet) and asher (in jammies) pile into the tek and hit the road.

5:13 am: heather is handed her most beauteous mandatory pre-road trip timmies (extra large black, for those who are curious), and hits the road.

6:33 am (believe me, i checked specifically b/c i couldn't believe it!!) heather finds herself in VERY heavy traffic on the 403 by hamilton!! at 6:33AM!!!!! shouldn't people still be in bed at that hour?!?!?!?!?!?!?!?!

7:54 am: heather, asher and tekkie find lovely parking spot on P1 in the sick kids sub-terranean parking lot. all are pleased.

8:45 am: heather and asher register for cardiology clinic.

8:51 am: nurse siobhan calls us in. no weight, b/c ash was weighed in emerg last week (14.0 kg! woohoo!!!!). and the numbers that will only mean something to some of you, but those who understand will want to know:

sats: 79-80% (lower than his usual 85%, but acceptable). HR: 104. BP: 103/60.

8:53 am: dr r enters. everyone discusses asher's numbers, and heather adds that lately his HR hasn't been higher than 125. dr r asks about blue spells, and heather says, "still a few every day. and he's been very blue and irritable since his very traumatic tube change on monday."

8:54 am: heather turns green as a wave of nausea sweeps over her.

oops! sorry, missed one:

8:53:37 am: dr r pauses, then looks at asher and says, "asher, you just like being a mystery, don't you?"

8:55 am: heather asks dr r if the plan is still to do surgery in the next couple of months. dr r answers that, although he 14 kg is a good weight for the surgery, they like to leave kids on the full does of carvedilol for a few months before proceeding. so that would mean another cath in august or september, when they will check the pressures and measurements, and then book surgery based on what they find.

8:55:17 am: not being accustomed to receiving good news from a cardiologist, heather suffers a small stroke. CATH IN AUGUST OR SEPTEMBER!!!!!! WOOOOOOHOOOOOOO!!!!!!!!!!!!!!!!!!

8:55:19 am: heather asks dr r if the plan is still to reconstruct asher's aortic arch a week prior to the Fontan. dr r explains that opinions are divided on that, since the pressures were so high last may, but now seem to be better. so they'll check again in the cath, and decide then.

8:57 am: heather regains consciousness.

8:59 am: heather and asher leave the cardiology clinic, next appointment scheduled for two weeks hence.

9:01 am: heather and asher get back on the elevators and go back up to 4A to get their parking ticket stamped, so as not to pay $30 for parking. $11 is much better.

9:12 am: heather, asher and tekkie pull out of the SickKids subterranean parking lot and out onto elm st and into the sunshine.

there you go. that's our appointment today. short and sweet. just the way i like 'em. :)

some pics, to make the men-folk proud! LOL

oh, he's gonna kill me for this when he's older! LOL he put blithe's hat on this afternoon and was walking around looking so "pretty" i couldn't resist! ;) and, you'll note, it's two different hats! LOL this kid of mine!