Sunday, December 27, 2009

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.

Saturday, December 19, 2009

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).

Friday, December 18, 2009

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.


Wednesday, December 9, 2009

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.


(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.)

Sunday, December 6, 2009

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. :)

Thursday, December 3, 2009

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!! :)

Wednesday, December 2, 2009

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.