Wednesday, March 26, 2014

Cardio clinic update

i'm sitting here in bed this morning, listening to Tom Hiddleston read poetry (swoons!!), and drinking the coffee Bram brought me ("i made you a surprise pot of coffee" he said), and i'm flipping through pinterest, and i realize,

i didn't update you on our cardiology appointment last week!

seems strange, i know, since we see cardio so often (and i post so often HAHA)...

except...
wait for it...

this was the first time we'd seen cardio in over a year!

i know. i had to pinch myself a bit, too.

how did that even happen? well, Asher has been doing really well. and when he was admitted overnight last june for some gastro issues... it kind of... triggered something in him...

so i figured, now that he's stable, we'll deal with his emotional issues a bit, or at least let his spirit rest a bit from all the medical stuff.

because it's gotta be hard on a kid to grow up being poked and prodded and looked at and examined and tested and talked over and discussed and analyzed and operated on and swabbed and scoped and monitored for years on end. that sort of life...

it leaves a mark...

so i let him rest, and didn't even book a 6-month appointment last summer.

but we went last week for the whole thing: ECG, echo, pacemaker, doc. and...

HE WAS GREAT!!!!!

everyone was shocked at how well he's doing, how much he's grown, and how healthy he is! i think our doc is very happy with him. she explained to the fellow that Asher's first four years were "um... difficult," and agreed when i said that we were there at least as often as she was. haha... ish...

anyway, yeah. that's the update. asher's stunningly stable, and everyone was happy. we're going back in september for a pacer check, holter, and bloodwork. but that's just routine with a pacemaker, and not due to function issues or anything.

and because they're so awesome, i'll give you his numbers o' the day:
21kg (45lb), 116 cm tall. sats are 96% (i still can't get used to that! HAHA). heart rate was 83bpm; pacer fires 77% of the time; the battery still has 5-7 years, and his sleep mode now begins at 9pm (someone had changed it to 11pm... no wonder asher wasn't falling asleep any earlier!!!). blood pressure is 116/62. fantastic!!!!!

and for some perspective... last year, he was 18.9kg, so he's gained about 5lbs. his sats were 94%, and his pacemaker was firing over 80% of the time.

so, as you can see...

Asher's doing brilliantly! (happy dance)

Tuesday, February 25, 2014

on possibilities.

I.
it was late. the kidley-winks were long since asleep. i closed my laptop, and snuggled in under the blankets.

asher was asleep beside me.

so, i put my arm around him. and i felt his heart beat.
i paused, caught up in the wonder and the miracle of those little lub-dubs. and then it hit me...

the pace...
seemed...
quick.

not tachy. not fast.
but faster than his usual overnight pulse.
i counted for a minute.

73
beats
per minute.

73 beats per minute, and he's set at 70.

73 beats per minute. just slightly faster, but oh how amazing those 3 beats were.

because his heart was beating on its own.
which happens, i know.
which happens rarely, i also know.

his heart was beating on its own.


II.
"ok, buddy, it's time to get ready for bed."
"ok, mommy!" and he tossed the lego batman aside, and scooped up Mousie, Stripsey, and Princess Fluffy.
he loves those little stuffies.
carries them everywhere. they're a little family, those little stuffies. and he takes care of them.

they were snuggled in the crook of his elbow while he stood up.

"asher," i said.
"yes, mommy?"
"you sure do love those stuffies, don't you?"
"mhm. they're a little family, and they love each other."

"asher," i said.
"yes, mommy?"
"you have a lot of love in your heart."
"mhm."
"you're going to make a great daddy one day."
"i'm the stuffies' daddy."

asher will make a great daddy one day.


III.
bram is reading to asher before bedtime.
there's a beeping sound.
"what is that sound?" i ask.
"it's the thermometer," asher said, handing it to me. "what does it say?"

i look at it. "did you use it?"
"yes."
"where did you have it?"
"in my underpit."

34.9C.

"let's try it again, ok?"
i smile, to reassure him.

to reassure myself.

34.6C.

he doesn't feel cold to the touch. but he's snuggled beside me tonight, even though it's not his turn.
just to be on the safe side.

Friday, February 21, 2014

french fries with mustard

I.
we're sitting around the table, eating lunch.
Blithe and Bram are talking, chattering away the way they do about anything and everything.
Blithe is trying to decide what book she should read for her book report. Bram is in awe of the lego bird he built.

Asher is quiet. staring out the window.

i'm quiet. staring at Asher.

he's absentmindedly eating his fries.
picking up a couple, shoving them into his mouth, then wiping his mustardy fingers on his black pants.

i'm quiet. staring at Asher.


II.
i'm sitting in the foyer at church, pinning the bag of formula to the bulletin board, with Asher in his car seat on the floor. the tape holding the tube in his nose is cut into a heart.
you know, because it's cute.
and it's a heart.
but it's even on both sides, and that seems strange.

the bag is hung up, and i'm priming the line.
i'm checking the placement of the tube.
it's in his stomach.

i'm hooking him up, and starting the feed.

ah, gravity.


III.

Asher's running around
wearing his little backpack.

he's "eating."

and then one day, he walks into the living room.
hands me a pair of scissors.
"mommy take tube out. i not want tube anymore."
"you sure, buddy?"
"yes. i not need tube. mommy, you take it out, please."

so i cut it, and pull it out.

and he eats supper.


IV.
i'm quiet. staring at Asher.

he's quiet. staring out the window.
absentmindedly eating his fries.

and that knocks me out.

Wednesday, July 24, 2013

a normal, hum-drum kind of miracle

something very strange has been happening around here lately...

Asher is growing up.

he's six-and-a-half now; he'll be starting grade two in september. and in december, he'll turn seven.

seven.

WHAT?!

i know. i can't believe it, either. *shakes head*

this time two years ago, i couldn't bring myself to say, "in a few months, he'll turn five." i suppose this is what "stable" feels like...

what normal lives like...

he was sitting next to me the other day, as he often does. he was playing on the computer, as he often does. and something about him in that moment...

he was playing with Bram the other day, as he often does. they were planning out lego star wars attacks on lego batman goons, as they often do. and something about him in that moment...

he was helping with grocery shopping the other day, as he often does. he ran ahead to grab the milk, as he often does. and something about him in that moment...

i caught a glimpse of him, as he will be

when he's older

when he's grown

when he's a young man.

and in those moments, those massive, insignificant moments, my breath caught in my throat, and i couldn't move, and i couldn't speak, and i couldn't take my eyes off him. there was such magic in those moments.

in the ordinary, everyday, inconsequential miracle of those moments.

in the day-to-day, ho-hum of life.

and in the living room, and in the play room, and in the grocery store, i knew

i knew

that Asher just might make it.

he could grow up, and live an ordinary life, and have a job, and drive a car, and break hearts date girls, and follow his passions, and make dinner, and tell stories, and hang out with friends, and drink coffee, and fall in love,

and change the world

and change a life

and live his life

however long that may be.

and it will be long enough,

however long it may be.

because, as he sat there, playing on the computer, he had no thought of his heart, no thought of his scars, no thought of his doctors and surgeon and appointments and hospital admissions and feeding tubes and meds and pacemaker.

he just wanted to beat that level of Candy Crush Saga (don't we all?). he just wanted Batman to destroy Darth Vader (for obvious reasons). he just wanted to help with shopping (because he's like that).

and this is what his life is now, and this is what his life will be like (for) now, and this is what normal life is like

all the time

for everyone.

each of us lives this kind of ho-hum, ordinary, day-to-day miracle.

the best kind of miracle.

the normal kind of miracle. when you go to sleep at night, and you wake up in the morning, and go about your day, and go to sleep at night, and wake up in the morning, and go about your day, and so on, and so forth.

that's Asher's life (for) now. and it's kind of amazing.

because it really, really isn't.

*****

i'm sure some of you are wondering what we've been up to since i last posted here. i'll post more about that on My Simple Life later, but for now, here's the Coles Notes version:

  • we're homeschooling. (and Asher has been remarkably healthy since i took him out of school, so i really believe this is best for him.)
  • like i said, he'll be starting grade two in september, Bram will be doing grade four, and Blithe will be in grade six, and i'll be having a mid-life crisis, because i'm not ready for any of them to be this old.
  • i've started doing make-up, mostly for theatre, but also some bridal, and photography, and video. i'll be doing a couple book covers in the next couple weeks, followed hard upon by a show called DREAM, which is a re-imagining of Shakespeare's A Midsummer Night's Dream.
  • Blithe has joined the music and drama teams in the kids' section of our church, and she's doing very well with that, especially the drama. that girl can act!
  • Bram is obsessed with all things Lego.
  • Asher has mastered an english accent, and uses it sometimes when he's telling stories that have more than one character.
  • and the house is still a mess, and i still love cooking but not baking, and we still have two cats.
and there you have it. you're now basically caught up on our lives now. haha! i'm going to post more often here again now. i'll warn you, though: don't expect too many pictures. i wanted to share one with you today, but Asher didn't want me to, and since it's his blog, i will respect his wishes there. but seriously, he's so grown up, you probably wouldn't even recognize him! and holy cuteness!! i mean, i know i'm biased, but seriously! adorable!!!

anyway, that's it for now... talk soon! promise.

Friday, December 2, 2011

to my sweet littlest big boy,

i love you, little dude.

it's 2:30am, and you're fast asleep beside me. technically it's december 2, but you don't know that yet. to you, it's still the first. which, i suppose, makes you both four and five years old right now... five in reality, four in your reality... i wonder which one is righter.

here it is. your fifth birthday. you weren't supposed to be here. you weren't really expected to make it this far.

but you've made it this far.

i couldn't be more proud.

i couldn't be more grateful.

this truly is something remarkable. for a lot of reasons.

sometimes i wonder how we've gotten this far. i guess i could, or should say it's God, and that would be right, so i don't want to leave Him out here. i want you to know that we couldn't have done any of this without His help and guidance and strength and grace... but i don't know... somehow, chalking it all up to God just kind of makes it all seem so trivial and simple. (or at least, that's how it feels at 2:30am.)

frankly, we've gotten this far with a lot of blood, sweat and tears. literally, blood, sweat and tears. it's true, i wouldn't trade any of this for the world, because it has made all of us who we are today. but, on the other hand...

ugh.

to say this milestone is a gift... i don't know. i almost feel like it whitewashes everything we've been through... sanitizes and sterilizes it all... when in reality, you've worked damn hard to get this far. and so have i. and so have countless docs and surgeons and nurses and other workers who are too numerous to mention. and to call it a gift... i'll be honest, dude, it's not really a gift i'd put on a wish list, if you know what i mean. no offence, because i know it's your life and i know it's the only life you've ever known, and i think that on a different journey you probably wouldn't be this beautiful, radiant light dancing along beside me.

but then i think back over the last five years... and i get tears in my eyes. you've come so far. no one could wrap their heads around the fact that you were eight days old before your PDA closed. eight days old. that just doesn't happen. and yet, there you were.

eight days old, and lying in Cardiac Critical Care at Sick Kids... so far from home, in a place that would become a second home so many times over the next five years.

i remember sitting next to you for hours on end. watching you, reading to you, talking with your nurses, listening to your docs, praying to God, staring at the monitors. but mostly, just watching you. it was really all i could do. i just sat there. right there, with you. holding your hand, crying over you, smiling at you when you opened your eyes, cheering you on in your little victories... the first time they took out your breathing tube, each line they could remove, each time your sats and/or heart rate and/or blood pressure stabilized... i feared for you with every challenge, too, though... each time your pressures increased to dangerous levels, each breath you struggled to take, each time your fever spiked, each time your sats bottomed out, each time you got a new line... i cried for what should have been when they gave you formula through a tube, when i had to put you down because you were destabilizing in my arms, when i wasn't allowed to touch you or speak to you or do anything but watch, because that would stimulate you too much and could have killed you...

oh, my sweet little man...

i'm lying here beside you tonight... this morning... whatever... and you're fast asleep, mouth open, arms up over your head... and i want to tickle your underpits. yes, it's bad, but sometimes i can't help myself. you just have the sweetest giggle i've ever heard. probably because i hear it in contrast to everything else.

probably because, so often lately, i don't hear it in contrast to everything else.

i just hear it. that sweet, musical, light and rambunctious giggle that bounces along with you wherever you go. it's just there. just like it is for any normal, little boy your age.

there's a lot in that giggle. there's victory and strength and determination and courage.

and there's nothing in that giggle. no pain or struggle or fear or sorrow. just light and joy and sheer, total happiness.

i joke with people that you run on batteries. you tell people you're a robot. "isn't that sweet," they say, because they think we're joking. they think you're using your imagination, and i'm exaggerating the way mothers do about their little boys who just go go go. because, really, no little boy runs on batteries. i joke about your slow-motion setting, and that maybe next time, dr c can give you a pacer with a mute button.

but that's just because dear me, child! you're loud!

but you know... i joke that you run on batteries, and you tell people you're a robot. if they only knew...

but then, somehow, the fact that they don't know, the fact that they can look at you and just see a normal boy, a normal, rambunctious, baby-of-the-family, goofball boy...

that's the gift, right there. that's the miracle. that's the milestone.

that you're normal. that you're turning five, and you have no idea how huge that is. that you're turning five, and you're having a birthday party on saturday. that you're turning five, and you're just, "i'm turning five!" and it doesn't knock you on your ass in shock and amazement that you've made it this far.

to you, your fifth birthday is just another reason for people to lavish you with attention and love and kisses, and that you're going to get presents and you got a cheque from Great-Grandma in the mail today...

which would be yesterday by now...

because it's 3:03am right now, and you're fast asleep beside me. technically it's december 2, but you don't know that yet. to you, it's still the first. which, i suppose, makes you both four and five years old right now... five in reality, four in your reality... i wonder which one is righter.

it doesn't matter. you'll be five when you wake up. and you're going to wake up. and that's so miraculous.

because it's so normal.

i love you, dude. from here to one side of the galaxy to the other side and back, and then all over again. or, as you mumbled in your sleep a few minutes ago, "i love you more, to infinity and beyond."

love,
mommy
xoxoxoxoxoxoxoxoxo



ps - please, never say "righter." it's not a word. i just made it up because that's how i roll sometimes. i just don't want you to grow up thinking "righter" is a word. because it's not.

Tuesday, November 8, 2011

i heart our respirologist.

she's so nice and really seems to be on the ball. i appreciate that.

so, yeah. we had respirology this morning. i'll admit, this appointment snuck up on me, but i'm really glad we went today. it was one of the quickest and most productive appointments we've had in a while. and we've had some "great" appointments lately! (and yes, i'm including the epically discouraging gastro visit the other week. even though i didn't like anything doc had to say, it's nice to have a plan and some direction. anyhoo...)

the quick stats, for those who want to know:
asher checked in at 16.1 kg (35.5 lbs, give or take), and 103.1 cm (3' 4")
BP was 94/48, HR was 86-87 bpm, and sats were 96-97%

the nurse told him she had to give his arm a hug, and then he turned to me and said, "mommy, she needs to do the blood thingy, right? with the thing around my arm?" she looked at him like he had just sprouted a second head - how does this kid know that?! i said, "he's got half a heart. he's kind of a pro at blood pressures." then he told her she had to put the light on his finger (for his sats). i wonder if she'd be surprised to know he does his own ECGs? haha!

then doc comes in. she sits down and we got to talking. other than over the last week or so when it's been more damp, asher hasn't really been coughing much. as in, almost never. but he has also been having some blue spells (he was notably pale at clinic, and has actually had several blue spells over the last week). he has been a little short of breath lately, too. which led me to comment,

"we've recently started back with gastro." i filled her in on asher's complicated (read: lengthy) GI history, with dysphagia, aspiration, severe chronic GERD (he's refluxing almost constantly now, even with prevacid twice a day), vagus nerve issues, and a possible malrotation in his bowel.

"is it possible," i asked, "that what you saw in his lungs on the CT scan was actually aspirated stomach contents?"

"it's possible," quoth she. and upon further discussion, she offered, "that would actually explain everything."

and so, gentle readers, i present to you her plan:

she's going to investigate. she is ordering a modified barium swallow study, to see where things go and how things work when asher swallows. for those of you who don't know what's involved in this study, asher will have to eat or drink something with barium in it (yum! you're jealous, admit it) as a special xray watches how his throat functions. he's had this test twice already, and both studies found the same thing: his throat muscles were very uncoordinated, resulting in an almost total lack of a swallow reflex. formula trickled down the back of his throat, pooled on top of his epiglottis (which was up, leaving his airway wide open), and then spilled down his esophagus. i think asher's swallow reflex is a bit more co-ordinated now, but hey, you never know.

the second test doc is ordering is some sort of nuclear swallow study. for this one, he will eat/drink something with a small amount of radiation in it. he will then undergo imaging at the time, at the half-hour mark, and the one hour mark. the idea is to see if asher is refluxing, how much, and where it's going (going back down to the stomach, spilling into his lungs, that sort of thing... which, now that i'm re-reading that sentence... ok, those are actually the only options, since he doesn't vomit. haha you know what i mean, though, and that's what really matters, and now i'm babbling, so anyhoo.............)

a bronchioscopy was mentioned, but she says that they would only go that route is there was the possibility of permanent damage to his lungs, and she didn't see any evidence of that on his CT from august, so i think we're going to be ok with "just" the swallow studies.

we are to return to resp clinic in six months, or after the swallow studies. whichever comes last. "unless he gets worse, in which case, keep the appointment," she advised.

so that was our day. :)

and now, since i have you here, i'd like to ask for a favour: please hold a couple of asher's buddies in the Light. B is in the hospital right now, and has been for some time. please pray for her, and pray for the team caring for her, and for her family. also, as i type this, sweet little H is in emerg. please pray/send vibes/cross crossables for these sweet little girls. thank-you.

you are Loved.

Monday, October 24, 2011

Asher requested this specifically

yesterday, out of the blue, i started to sing this song to the kidley-winks. oh, wait! i think blithe was working on math homework. that's probably it. anyway... i started singing this, and the kidley-winks absolutely loved it! so now, asher has asked that i put it on his blog, so that you can enjoy it, too.

and, of course, once i found a clip of the song performed on The Muppet Show, i had to post that one. ;)

enjoy!