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don't know why it's taken so long to update here...

Posted Jun 20 2011 7:43am
maybe because it's all just so "meh"... not bad, per se... more like... um... wow. "meh" really is the best word. go ahead, say it out loud. you'll understand when you hear it.

on tuesday, asher stayed home from school because he wasn't 100%. other than a cough he's had for the last few weeks (yes, he still has it, and it's wet and gross sounding and it just seems to be getting worse, actually), i couldn't quite put my finger on what was wrong... he was just off... his colour wasn't right, his mood wasn't right, he slept in, i don't know... a bunch of little things that added up to me keeping him home so i could keep an eye on him.

we had to get some milk and eggs, so once blithe and bram were on the school bus, asher climbed into the stroller and we headed off to the store.

we decided to get a quick little bite to eat from the coffee shop first, though. he picked out his muffin and headed over to the table. and sat down. quietly. with his head on the table.

i got my coffee and our muffins and sat down with the littlest man. we munched, we chatted, we people-watched, we turned blue... well, ok, he turned blue. i watched.

and called our paediatrician.

and off we went to her office.

where she assessed him.

(the deets: BP was 100/50, which is weird for him; liver was large and 3 cm down; and his colour was "asher pink" to grey with blue undertones. yeah. lungs were wet and crackly, and he had a murmur.)

see, since he's been refluxing almost constantly for the last several weeks, one of the concerns was the possibility that he has been aspirating (stomach content/juices going into his lungs). granted, it seems somewhat unlikely, since his throat has been working so well for so long now, but he has quite the history with this sort of thing, so it needed to be investigated.

so, she sent us to emerg for sats, chest xray and ecg.

which asher did himself. no, seriously. he stuck out his finger for the sat probe (92% in triage, up to 95% before we left), attached his leads for the ecg (yes, he knows where they all go), and in xray, he hopped up onto the stool, arranged the lead apron, sat tall and still and took a deep breath without being told, then turned sideways and put his arms up for the second picture. all without being told. no one could believe he was doing all that. i said, "when you see his pictures, you'll understand how he knows all this." and they did. it's not often our local hospital sees a 4-yo with that much extra hardware in their chest.
Asher and Farkie Malarkie, both gowned and waiting for x-ray.

in the end, it was decided that he probably had "viral bronchitis" and we were sent home. a long day... for nothing, basically. :S

and speaking of long days... we had cardio on thursday.

it was the usual: pacemaker, ecg, echo, doc.

everything was uneventful. asher was paced throughout the appointment, and when they tested his heart during the pacer check (basically, she turned it off for a moment), his own heart rate was 60. that was his active heart rate, after running around and playing for half an hour. yeah. no wonder he was pale!! and no wonder he has a pacemaker! haha

k, so the pacemaker is working properly (no comment) and still has 8 years left in the battery. he's also about 75% paced (75% of his heart beats are initiated by the pacer).

now, because i know some of you are wondering... here are his vitals, etc
  • BP was 117/65 in his left leg, and 99/64 in right arm.
  • sats were 94 to 95%. (asher's norm is 96 to 98, so this is lower than usual but only marginally so.)
  • HR was 80 to 86, paced.
  • liver was still low (3 cm) and enlarged.
  • no mention of a murmur.
when doc came in, she said that he's doing "ok" right now. she also said that, since he's had his "fontan palliation" (anyone else wanna vomit at that term?? i know it's true, but she usually just calls it the fontan. {wave of nausea}), as long as function is good and the pacer is working, he'll be "ok" and "i looked at his echo and everything seems to be fine, no coarc or leaking and function is good. basically," quoth she, "he's doing as well as we can expect at this point. but you know, the fontan is palliative. but any problems that come up will be slow to develop, which will give us some time to deal with them. but right now, he's doing as well as we can hope for at this point."

k, all of that is true.

and all of that is good news.

but um... it's just that... usually... she puts it all very positively. "he's had the fontan, therefore he is doing very well. i'm happy with him. we'll see you in 6 months." in all the time i've known her, i've never heard her use the word "palliation" or say "as well as we can expect"... i don't know... yes, it's good news... and yes, all those phrases and words are true... 

maybe it's just that... it's one thing to know those things, and it's another thing entirely to hear the doc say them...

and when you're trying to ignore your child's odds, the last things you want to hear are the words "palliation" and "as well as we can expect." 

i'm trying not to get too upset by it. sure, it was pretty rough on thursday. but i handed it over to God and i'm now feeling a lot better... just holding the truth of it all, instead of the pain that truth causes... 

but some days i feel like the clock is ticking, you know? and thursday was one of those days, i guess. that's probably why it's taken me so long to post any of this... but on the other hand, i know it's all true, and really, he is doing "as well as we can expect at this point," so i cling to that truth, and if/when anything else comes up, we'll deal with it then. meanwhile, i'll enjoy that asher has spent the last week eating (a delightful change!) and even in the heat, he's doing "as well as we can expect."

maybe it's just that i'm sick of docs and i'm sick of cardio and i'm sick of tests and i'm sick of hospitals. and i'm sick of asher being so comfortable with it and i'm sick of asher doing his own ecg's and i'm sick of asher sitting so nicely for xrays and i'm sick of seeing asher lie still for echoes and i'm sick of seeing him with leads and a blood pressure cuff. 

it's weird... i'm not actually feeling as down as this post seems to imply. i'm just really, really tired of heart stuff, you know? and really, it was a "nothing" week, even though a bunch of stuff happened... so what if he's back to "asher pink" and not actual pink lately. i've seen him worse colours, to be honest. it's the humidity that's doing it, i'm sure, since, frankly, i don't like the humidity, either, and i wilt just a little bit during a heat wave, too, so really, i don't think it's really anything to worry about. i don't like his colour, but he's doing ok, so i'll just let his mood be the deciding factor. if he's his usual spunky self, then i won't worry.

and lately, he's his usual spunky self. so i'm not worried. 
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