Thursday, July 29, 2010

if it's thursday, this must be paeds. and emerg. and cardio.

true, the sentence above makes a witty post title. sadly, however, it doesn't make a good day. in fact, i think there's only one word which properly sums up today: ugh. with a capital UGH.

it started off delightfully enough. after falling asleep shortly after 1am, i woke at 4:45. and i mean, wide awake. nice. so i stayed in bed for about an hour or so, and then decided to head out for a drive through the country. after which, i came home, showered, and went to meet the kids for breakfast (they've been with their dad for the last two days).

and as we sat in A&W, i was looking at asher. closely. for a long time. until i finally said aloud what i'd been thinking for over 20 mins:

"he doesn't look right."

so i called our wonderful paeds, dr b, who is on call this week. i told her, "asher's pale, and his forehead is grey, and his eyelids and nose are blue."

"what??" she exclaimed incredulously, "why is he all of those colours?"

"i don't know," i replied, "he's usually one or two of them. he's never all of them."

so she had us go to the paeds ward at the hospital. we got there around 9:30. then doc walked into the room, and, taking one look at my littlest man, said, "he's blue." and it went from there.

the numbers, for those who understand and want to know:
  • BP was 90/52. (his norm is 120s/80s.)
  • HR was mid-90s to low 100s. (he usually rides the pacer, so his HR is 80 dead on.)
  • sats were 90 to 92%. (his new baseline is 96-98%... so, normal. these numbers are distinctly not in the normal range.)
  • activity level was decreased, and he wasn't as co-operative as usual. mind you, he was still in constant motion, but not as shockingly fast as usual.)
so we were sent down to emerg for a chest x-ray, ECG and bloodwork.

amusing story about the x-ray techs: first, they were going to put asher in the pig-o-stack. delightful contraption, if you've never seen it. it's a wood table, with a hole and bicycle seat in the middle, and a large clear plastic tube which they close tightly around the screaming baby/toddler with his arms above his head. pretty, no? ugh. anyway, they were surprised to hear that he's now a pro at sitting on a stool for the pics. they looked at me like i was crazy, but i just said, "you'll understand when you see his x-ray." so they did the first shot, and when they looked at it, one of them said, "oh! he's had a lot of surgeries!" "why has he had all those?" the other asked. "because he only has half a heart," i replied casually. they didn't respond. but i giggled inside, i'm not gonna lie.

at 2:30, we had everything done, and emerg doc came in to say, "dr b has talked to cardiology in london, and they want you to go there right now for an echo. you can drive him, but you have to go now. they're waiting for you."

so off we trekked for an echo.

which, of course, showed nothing.

and his ECG in london (the second of the day, you'll note) was "asher perfect."

and his chest x-ray was "asher perfect" (meaning, you can clearly see all his little extra bits and pieces in there, which is always very cool... and fun, when it startles the x-ray techs who have never seen a paced 3-yo with lots of staples, coils and stents. teehee).

and his numbers weren't much different. his BP had dropped to 88/60, which, according to liz, is good.

so dr r doesn't quite know what's going on today. the bloodwork is ok, his haemoglobin was right where it should be, and it all looked good, actually. so, once again, asher had the docs scratching their heads. and me craving poutine (because in addition to laughing, that is the other way i cope. true story.) so we left the hospital shortly before 5, i think. oh, yeah. fun times. but at least asher got to watch some of toy story and toy story 2 and play with some trains.

oh, and a story before i depart. dr r came out to get us after the echo, and on our way to a room, he said, "i checked out his website the other day." "really?" i said, surprised, since he's not asher's cardio. "yeah, it was interesting. i was googling the hemi-coles procedure, and his site was right there." so i told him about the other docs who read the blog, and he laughed to hear that this blog is where they get some of their info.

anyway, this post doesn't quite convey the drudgery of the day. especially when you factor in all the waiting and sitting and the fact that by 11am i was falling asleep. but you'll note that we didn't get any answers. just a lot of "now we know his baseline" and "i dunno, call if he gets worse." a delightful day. and so, to sum up,


btw, i just realized i didn't post about our immuno clinic last week. so here's the details (yes, the details, because i'm truly not leaving anything out here): "i dunno. see you in 6 months. now let's draw over 2 ounces of blood from the wee boy." now, spread all that out over 4 hours, and you've got the picture. seriously, that was the entire day. oh, and rush-hour traffic with 3 rowdy kids in the backseat all the way home. c'mon, admit it, you're jealous. {rolls eyes}

and since this is a bit of a downer post (or at best semi-boring), i'll leave you with the funniest thing i've read in a very long time, and quite possibly ever. enjoy!!!

oh, and i should add that tonight i got a text from his dad (the boys are staying with him for an extra night this week), saying that asher pinked up after supper. of course he did!! after we spent the day in hospitals.

again, ugh.

Tuesday, July 27, 2010

it's how i roll

this morning, i was chatting with a friend, a fellow heart mom (gotta love facebook!), and i got to thinking. this life, you know, it does things to you. weird things. it warps you, in a way.

mind you, i almost titled this post, "quothe the heart mom to the cardiologist, 'do you know the kind of life i had to have to prepare for asher?!'" so maybe it's not heart life that does this. but it definitely reinforces it.

what i'm talking about, dear readers, is my sense of humour.

my warped and very, very, VERY dark sense of humour.

to whit, i give you some of the things i've laughed and joked about over the last 3+ years.

  1. when asher was diagnosed, at 8 days old, it was rough. and by "rough," i mean that the next two days in their entirety were spent with docs giving me bad news. all the time. for two whole days. i said to asher's dad over supper on day 2, "ok, i need something to laugh at here. if i can laugh at just one thing, it won't be so horrible." and i started thinking. i'll admit, it took me a couple minutes, and i was starting to lose hope. and then, as i was about to give up, it hit me. "doc said he's going to be blue. well, that makes hallowe'en easy: he'll be grover."
  2. leading up to the glenn, asher was very weak and not doing well at all. his sats were in the 60s, his BP was rising daily, he had no energy and was sleeping over 20 hours a day. and he didn't just have the glenn. he was to have the norwood AND the glenn at the same time. two very big surgeries at the same time. and at that point, asher was averaging an admission every month, plus appointments every single day, and countless trips to emerg. i was worn out, exhausted, and quickly running out of hope. i was certain that asher was going to die in the OR. you couldn't tell me otherwise. he was going. to. die. now, i tried to get past that thought. i wanted to believe that he would make it through. so i tried picturing life post-glenn. but every time i did, i could only see 2 kids at home. no asher. so that wasn't working. so i decided that the best i could do would be to imagine asher just surviving the surgery. even if he didn't make it home, at least he'd come out of the OR. i knew what to expect post-op in the unit, so i pictured that. horrible images to cling to, really, but i figured, if he made it through the surgery, he could still die in the unit, but at least i would be there when he passed. and then, one day, while picturing asher with all the tubes and lines and meds and monitors and everything, i realized that his rib cage would probably be suspended post-op. so i added that to my visualization. his chest open, wires wrapped around his ribs and looped over another wire above his crib. (don't know if you've ever seen it or not. it's not quite as gruesome as it sounds.) and then i started laughing. hysterically. i mean, i was almost literally peeing myself from laughing. because, i thought, when people asked me how asher was doing, i could say, "he's hanging in there."
  3. during one trip to emerg, i was talking to a med student, and (trying to) teach him about asher's heart. he was having none of it. he insisted that he knew everything, and i knew nothing. he argued with me about what the surgeons have done, and the meds asher's on (i said at one point, "that's fine. you can disagree with me about Lasix and HCT. in fact, why don't you call the doc who switched the meds. his nephrologist. whose other specialty is pharmacology. it's dr f. you know. chief of paediatrics. you can ask him." yeah, i was not impressed with this clerk at all. anyhoo... once i had finished (trying to) teach kid about asher's conditions, he asked, "so, what caused all this?" "nothing," i answered, "HLHS just happens." "no, i mean, were you sick during the pregnancy? what made his heart go like this?" "nothing," i replied through gritted teeth, "HLHS. just. happens." "no, i mean, did you drink? did you do drugs? did you take meds you weren't supposed to?" well, i looked the young man in the eye, and said with a straight face (and without violence, i might add), "actually, somewhere around the 7-month mark, i sneezed too hard and his ventricle fell off."
  4. during the spring, i was having lunch with D., dr caldarone's wife. (and no, that's not the surreal part.) these lunches were great; i would tell her about the journey with asher, and she would tell me all about "chris" (dr c) and their lives. anyway, it was during asher's pacemaker admission. D and i are having lunch, and she tells me about their dinner table conversation the night before. dr c was talking about pacemakers (not disclosing any confidential info, don't worry. just talking pacers in general) and one of the kids asked what a pacemaker looks like. so dr c described it, and the oldest said, "i think i had one of those in my desk! but i didn't know what it was, so i threw it out." but wait! that's not the funny part!!! the next day, dr c came in to do the informed consent bit etc. so i said to him, "now, you're sure you have a pacemaker for him, right? no one threw it out or anything?" 
  5. another dr c story (i have several). asher went in to the OR at 8am on the morning of the Glenn. dr c came out to the waiting room at 8:40am. (all you heart moms should just read the story before you vomit; it's ok.) he came over to me and sat down. apparently he needed to add something to the consent form but he needed me to witness it so that it was legit. no problem. then he said to me, "ok, well, we haven't started yet." "I HOPE NOT! because you're out here!!!" and he just looked at me like i was crazy for a moment. then when he saw i was laughing, he laughed, too.
  6. yet another dr c story. D and i were again having lunch (sometimes i just shake my head at the twists and turns and unexpected acquaintances that come my way in this life). we were discussing the letter i'd written to dr c back in december. i refer at one point to his hobbies (yes, he has some!!!), and she said that he bakes and makes "the best pasta sauce in the world," and "did you know he sews?" "I HOPE SO!!!"
  7. back in the day (asher was 4 months old), he was admitted to PCCU in london. dr b came in to see us because he'd heard that we were there and he just wanted to check on asher and see how we were doing. he said at one point, "i'll be back in a little while. just a social call, to see how you're doing, if you need anything." i said to him, "while we're here, the only thing i ever need is coffee" (take note, readers in the area). "i can bring you coffee," he said, "how do you take it?" "two cream," i said. "alright, two cream. no sugar?" "i'm sweet enough," i replied with a smile on my face. "yeah, i'm not gonna touch that one!" he said. yes, folks, i can joke around with cardiologists. 
this is how a lot of us get through. we laugh. you may remember the post from the other day about band-aids. it's how we cope. it's true what they say,

"if you don't laugh, you cry."

and when there's so much to cry about, you learn to laugh at just about anything. it's how we roll.

Friday, July 23, 2010

asher's new 'do

look how cute he looks with his little "faux-hawk"!!!! i figured it matches his personality. haha

and the tale... so, asher's hair is insane when it's longer. and it was long. the girl must have cut a couple inches off, at least! he was so excited about going to get his haircut. he ran in, and was laughing and happy... until she called him back. then he didn't want to go. but i put him on the chair, he got his little cape-thing on, and then...

started screaming.

he calmed down while she was using the clippers. mind you, he had his face buried in my chest, but he stayed still. then she pulled out...

the scissors!!!!

that screaming you heard about an hour ago (and yes, i'm aware there's people in australia reading this... surely you heard the screams!)... yeah, that was ash. and then when she finished the cutting, and she went to put the gel in his hair...

oh, the horror!

he refused to even look in the mirror when it was done. flat out refused. he looked at his pic on my phone, but he just would not look in the mirror!

but now he likes it. i'm sure it'll be cooler for him in this heat and humidity than the long curls were, which will be nice for him.

oh! and someone needs to remind me to post of pic of ash with his new hat. a cute little plaid newsboy number that looks absolutely adorable on him! this kid of mine can pull off just about any look he wants.

are we surprised he likes his new "big boy rebel" look? not if you've met him, i'm sure! LOL

ps - i'll post about our immuno appointment later today. we went to sick kids on wednesday for that clinic. waste of time. but i'll fill you in later.

pps - we go for a kidney ultrasound this afternoon, and we're seeing nephro in early august. unless something earth-shattering happens this afternoon, i'll just wait till clinic to give you the deets about that.

Thursday, July 22, 2010

och, the wee lad...

so, bram needs a band-aid for his foot, because he got a blister.

of course, we're out of band-aids.

so, blithe picked up band-aids while she was out for dinner with her dad. she got some My Little Pony band-aids for herself, and Transformers band-aids for the boys. (Bram's instructions had been, "i want something from a show. and she better not get anything girlie.") well!

needless to say, bram was very happy with the transformers band-aids.

"but, heather," i can hear you asking, "this isn't bram's blog. this is asher's. what's up with the bram story?.. not that we don't love him, mind you, because he's delightful, but um... what about asher????" well, gentle readers, let me tell you.

asher wanted a band-aid, too. he must be like brammy, after all. so he gets himself a band-aid and says, "mommy, i need a band-aid for my leg."

"why?" i ask, confused.

"because i hab a bruise."

"DUDE!!" i exclaim, "you're on blood thinners!! if you want to put a band-aid on every bruise you have, you're gonna run out of band-aids pretty quick!!!"

Wednesday, July 14, 2010

an email i just sent to someone...

i was journaling tonight, and got to thinking (as one is wont to do while journaling, i suppose), and i wanted to thank you for writing this book and for telling our story.

a couple weeks before the fontan (so, mid-february), i asked God for the chance to tell asher's story. now, i don't know where you stand with the whole God thing, but i believe. and frankly, as soon as dr c mentioned this project to me post-op, standing there in the hall on the 2nd floor, iknew this was what i had asked for. (go ahead and ask him how i responded. i guarantee it wasn't what he was expecting!) as it is, asher's blog is read all over the world (literally, the only continent unaccounted for in asher's readership is antarctica! how cool is that?!), but this project is just amazing. do you realize what this will do for heart parents???? they won't be alone anymore! they will know, and i mean know that they are not the only ones whose kid has a heart this wonky, and that knowledge brings more comfort and encouragement and life and peace and breath and light than you can even imagine! and healthy-heart people will learn to cherish and embrace and love every breath, every heartbeat. my desire for this project is that people will learn that every heartbeat is an absolute gift. no, wait. that's not enough. it's a miracle.

do you remember when we met? we were standing in the atrium near starbucks, and you asked how asher was doing. i said something about his heart beating only 30 times per minute. that is not only really slow, that is nearly stopped. one beat every two seconds. count it out. i'll wait.... [hums a little tune] ... for perspective, put your fingers on your stomach, just below your ribs, and press in slightly. you'll feel your heartbeat. you'll notice that it's going faster than asher's was when you and i met. and you are an adult, so your heart rate should be slower than a 3-year-old's. but here is what that episode with my littlest man taught me:

there is a miracle every second. the trick is to look for it. but if you look for it wholeheartedly, you will find it. today, i can look at asher, and see with my own eyes 80 miracles in any given minute. literally, 80 tiny... and astonishingly huge!.. miracles every. single. minute.

and that is what i want people to take away from this story. that miracles happen. all the time. sure, it may not be those big "why does this child have a left ventricle all of a sudden????" kind of miracles. maybe those miracles happen, but then they're done. it's the smaller, quieter miracles that break your heart, heal your heart, take your breath away, inspire you to breathe again... and teach you to live.

and every split second of asher's life is one of those quiet, simple, overlooked miracles. they are overlooked by so many people, including me on occasion, even now. but that, the overlooked-ness of it all, is a miracle. i can take every heartbeat for granted. because just a few short months ago, i was holding my breath waiting for the next heartbeat. every heartbeat mattered. sure, they still do... but they're even more beautiful now because i don't have to think about them. "what's his pulse?" "i dunno, but if he's still breathing, it's at least 80." it is only when you have lived through the terror of uncertainty that the unknowing becomes beautiful.

and asher's heart is now even more beautiful to me than i ever imagined possible. and that keeps me going. every day.

and that knowledge, that there is a little boy out there who has fought tooth and nail till he was blue (or grey) in the face to make it through all that shit... that is going to inspire. that is a gift that none of us can even comprehend yet. and that is what this book will give to someone. 

so, thank-you. it's amazing what you're doing with asher's story. just the fact that you're telling it, or even, now that i think about this, that you are aware of him at all, is a gift. and this is going to enrich some poor, freaxious mother's life, and make her heart go up in ways that neither of us can ever know.

thank-you. truly, from the bottom of my heart, thank-you.

Tuesday, July 13, 2010

make sure you're sitting down before you read this post, because it's just. that. awesome!!!!!

saw paeds today. for the dreaded weight check. and....

ready for this?


HE GAINED!!!!!!!!!!!!!!!!!!!!!!

this means that i am not giving him chocolate bars and ice cream and buttered mcdonald's hashbrowns for nothing!!!! and even though he doesn't like to eat all the time, what he does eat is gross enough that it's working!!!!

this also means.....

HE WON'T BE GETTING A TUBE!!!!!!!!!!!!!!!!!!!! oh, i can't even put into words how happy that little nugget makes me!

this also means...

asher is actually climbing the growth chart!!! two months ago, he was at the 10th percentile for weight. he is now nicely at the 15th, which is within the "normal" range. and yes, you read that right, asher can actually be described as "normal." mark this day down in history, folks. asher has never been described as "normal." ever. by anyone. for any reason. ever. so this is a miracle.

this also means...

that i can take FTT (borderline) off his list of conditions on the sidebar!!!

thank-you, everyone, for your prayers/vibes/crossed crossables. today was an absolute gift from God, because only He was able to ensure that asher would gain anything while barely eating. it's wonderful news!!!! i can't even tell you how thrilled i am, and how proud i am of my littlest man today! as soon as i saw the number on that scale, i scooped him up in a giant squeezy hug and started kissing him till he almost peed from laughing... then told me to put him down. LOL

today is a wonderful day.

Sunday, July 11, 2010

downer alert: it's late, i'm tired, and asher is just so very skinny. :(

on tuesday, asher goes in to paeds for his monthly weight check, and this time, i'm not expecting a gain.

in fact, i'm anticipating a loss.

asher doesn't often eat anymore. a couple bites of a meal is his usual. unless he's racing with someone (who knows enough to let him win). but that's only a trick to get him to eat at all.

today was the first day in about a week that he's had an appetite. he ate a bowl of cereal for breakfast, an apple, a chocolate bar (gotta love a church with a snack bar!), a cookie, a smoothie (with polycose in it, but shhh! don't tell him that!), another apple, a bowl of lentil and sausage casserole, and some of a second bowl of casserole (both of which contained polycose. again, that's a state secret, and i'll trade you to the russians for someone not nice if you breathe a word of that to asher).

but today, when he was having his bath... i could count his ribs. and he's got an outtie again.

fyi, asher doesn't usually have an outtie. except when he's skinny skinny.

i had just donated his IV pole to the drama ministry at church to use as a prop. i told them that this was my act of faith, that i'm stepping out here believing that asher won't need it again. the director said, "if you need it back, let me know, and you can have it." "oh, if i have anything to say about it, we won't need it back. i'm not feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again!"

but apparently, i'm feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again.

it's just so discouraging. i've buttered mcdonalds hashbrowns and pasta, i've used more oil to cook than i ever imagined possible, i've given him chef boyardee and fed him chocolate bars and ice cream and cookies and more fast food than should legally be allowed, and added Polycose to everything, including milkshakes, scrambled eggs and pasta sauce. for nothing.

with his heart the way it is, it is pretty much impossible to put weight on him. he knows he needs to eat, he knows he needs to gain weight, he knows he might get a tube... and yet, he doesn't eat.

and i don't want to keep reminding him of the (possibly/likely) impending tube, because he's already struggling with his PTSD, getting sad and scared off and on throughout the day for no apparent reason. so i don't want to threaten him with another tube, in case it harms him psychologically. especially since he's making some progress with that (he actually tells me - if i ask him - how he's feeling, which he never did before, so this is actually good news on that front).

i also don't want to have to force him to eat, because i've wrestled with food issues, and i don't want him to have to go through something similar. i don't want him to see food as the enemy, or as something he "has" to do. i want him to have a healthy relationship with food, and i don't think that threatening him to eat all the time is the way to nurture that. i'm trying to think long-term here, even while dealing with short-term issues.

and i don't want to turn mealtime into a battle of wills. i want mealtime to be happy, fun, a loving communal experience with the family.

so far, racing works. but other than that... nothing. even bribery doesn't work.

this is really hard right now. i want him to have a normal life with normal kid problems, like bruised knees and "brammy just took diney away from me" and "dare no cheese!!!!" (yes, he'll eat cheese. assuming we have some in the house.) but balancing normalcy with health issues, trying to integrate his medical requirements into everyday life without overwhelming it or traumatizing him all over again can be downright impossible sometimes.

i'll figure this out. i will. but tonight i'm exhausted (i haven't had a decent night's sleep in about 2 weeks now) and i'm discouraged by the lack of progress on the weight front.

in case you're wondering...

heart life is hard sometimes.

really hard.

Saturday, July 10, 2010

asher's new fave song :)

he's actually a little obsessed with this now. the boys are big fans of Kraftwerk now (which makes me very, very happy and very, very proud), and this is one of Asher's favourite songs. :)

although now he's got the idea that he wants to be in the Tour de France. please, someone, change his mind. my heart just can't handle that!!

Wednesday, July 7, 2010

Asher. A Play in 3 Acts.

Act 1
Monday morning. it's early. I am not at my best or most compassionate, being half-asleep and not thrilled with being awakened by a tattling preschooler. hey, at least i'm honest here. 
Asher {runs to me, throws arms around me, weeping}: Mommy, blivey punched me on de head!
me: what were you doing when she did that?
Asher: nothing. she punched me.
me: are you sure? what were you doing right before she punched you?
Asher: i was hitting her. but den she punched me!!!
me: sorry, dude. you shouldn't have hit her. go say sorry and don't hit her again, do you hear me?

Act 2
Monday afternoon. i am in bed, trying to cuddle bram to sleep (and get some rest, myself).
Asher {running into room, burying head in hands on my bed}: Mommy, i need you! blivey punched me on de back. {weeps bitterly}
me: oh, no, sweetie, are you ok?
Asher: yeah, i ok. but i not like blivey anymore. i just like brammy. not blivey. she punched me.
me {calling pleasantly so as not to get blithe's defences up}: blithe, can you come here, please? just for a minute, hun.
Blithe {enters}: yes, mommy?
me: did you punch asher?
Blithe: yes. but he was throwing rocks at me. i told him to stop but he didn't, so i tried to stop him.
me: asher, were you throwing rocks?
Asher: yes. but blivey punched me!!
me: ok, first off, blithe, there is no punching. that is not the way to handle disagreements, so that's not ok. and asher, there is no throwing rocks in the house. ever. do i need to take the rock collection away?
Asher {sniffling}: no. but blivey punched me. i not like blive anymore.
me: alright, blithe, can you apologize to asher for punching him?
Blithe: asher, i'm sorry for punching you.
Asher: i forgive you.
Blithe: huggies? {they hug. Asher begins to walk away.}
me: Asher, you need to say sorry to Blithe now.
Asher: Blivey, i sorry for throwing rocks at you.
Blithe: i forgive you. {Asher begins to walk away.}
me: Asher, you need to give huggies now. you have to fix your relationship. {they hug, though Asher is standing as far from Blithe as he possibly can.}

Act 3
Tuesday morning. 7 am. nuff said. Asher is crying and climbing up the stairs. he enters my room, weeping like the world is coming to an end and fire and brimstone have destroyed his favourite stuffy. he buries his head on his arms on my bed.
Asher {between sobs}: mommy, dare no cheese!! i want cheese, and dare no cheese!!

**author's note: i'd like to point out that discipline is usually a little more involved than just apologies. but i haven't slept well in a couple weeks, i'm exhausted, and frankly, in this heat, close physical contact with another person (eg, a hug) is punishment enough. also, yes. the boys have a rock collection. all grey gravel-type rocks. what of it? haha

Thursday, July 1, 2010

what an evening!!!

fyi... this post may bore you to tears, because it's all very, very normal.


this afternoon, when the kids came home from their time with their dad, they went out into the backyard, where they ran around, threw the Frisbee, played tag, tossed some balls around... you know, basic "kids playing in the backyard" stuff.

then we ate at the picnic table, and the kids made up a song about milkshakes. it was funny, since blithe was singing the main part and the boys piped in between lines with "mm-mmm" and rubbing their bellies. too cute!!!

then after supper, we all went for a walk. we walked approximately 12 blocks tonight, plus a while running around a local park/flower garden. then we came home and the kids went to bed.

all so very normal, don't you agree??

the reason i'm posting this tonight is because... for once... asher kept up with the older kids. and he walked the whole time we were out this evening. no stroller.

and he was fine.

not short of breath, not tired, not cranky, not blue.

he was completely fine.

see? boring post. thought you'd like it. ;)