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)...

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...


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.

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...

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

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.

"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."
"you're going to make a great daddy one day."
"i'm the stuffies' daddy."

asher will make a great daddy one day.

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?"
"where did you have it?"
"in my underpit."


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

to reassure myself.


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

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.

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.


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.

i'm quiet. staring at Asher.

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

and that knocks me out.