Monday, June 27, 2011

well, our streak has come to an end... but now we get to start over! tomorrow is Day 1. ;)

that's right, folks, it's been a delightful 13 months, but as they say, all good things must end...

asher was admitted to hospital last night.

now, before you panic or get upset or worry (haha!!), it was just for observation and we've already been discharged, so it's all good. {thumbs up} here's the deets:

yesterday morning at church, asher was... um... how shall i put this... asher was being asher-ish. which actually says quite a bit for those who have been around for a long time. haha but for those who haven't...

asher spent the morning trying on all sorts of funky shades of blue, and a bit of grey thrown in for fun. oh, sure, he had his pink moments, but for the most part, he was blue and/or grey. he was also dizzy and lightheaded and kept saying that his "ears feel like day have cottonballs in dem." i'm pretty sure there were a few times that his ears were full of that rushing sound, because there were a few times that i'd look at him and he just wasn't focusing on anything and he wouldn't respond when i spoke to him. (i know what some of you might be thinking, but i doubt it was seizures. i might suspect that if he hadn't had the other symptoms, but given everything altogether, i'm going with the rushing sound.) so i called our paeds, hoping i was being paranoid, and whether i was or not, she said that he should be checked out when we get home. so, it wasn't urgent. yes, he needed to be seen, but not right that minute or anything.

anyway, we got home, ed picked up blithe and bram, and asher and i headed off to emerg. his triage vitals: HR 81, sats 93%, BP was 100/60-ish... his norm, anyway. but those sats... ugh... his normal is - believe it or not - real normal, sitting between 96 and 98%. lately, though, he's been 92 to 96%. not a huge drop, but i don't like it. i'm actually kind of glad we'll be seeing respirology. speaking of which... oh, wait, i'll get to that...

ok, so they decided, based on the number of blue spells etc that asher should be admitted. just overnight, and just for observation. no biggie. still sucks, but it's ok. close to home, just for one night, and nothing major planned. just a regular admission.

overnight, he was good. no major episodes... some hints that he might change colour, but nothing substantial or concerning, really.

there was a little bit of excitement this morning, though. ash and i were going to head down to the playroom, so i put a sat probe on him (doctor's orders)... he was a delightful 93%... and his heart rate was 74. i know what you're thinking: isn't he set at 80?!


so he had an ecg and yup, 74 to 77 bpm... paced. wha-?! but dr b sent a copy of the report (from a regular ecg and a 10-second test) to cardio in london. cardio said that it looks like the pacemaker is working well and they're not concerned. "so, it's ok for him to be sitting with a heart rate in the 70s?" apparently, it is. {shrug}

a couple other points of interest: asher's chest xray from last night looks a little bit like he might have RSV. again, wha-?! but this is asher, and even though he's a little old for that (and it's summer!!), that might be what's going on. either way...

respirology was consulted. they are going to rush him in (resp doc is off during the first week in july. she's going to make sure he is seen during the second week in july). she is also booking him for a lung CT. apparently, there's a 1-month wait for that test, so if she books it now, it will get done as quickly as possible. and this way, if asher doesn't need that test, it can just be cancelled and no harm done.

in the end, we came home around 11 this morning.

it's good to be home, i gotta say. yes, it sucks that his streak has come to an end, but it was great while it lasted, and it was just for an overnight admit for observation, at our local hospital instead of children's or sick kids, so i'm happy. :)

besides, i didn't have to cook! can't complain about that, if you ask me! {wink}

Tuesday, June 21, 2011

sometimes you just gotta shake your head, shrug and say, "whatever!"

... and then maybe laugh a little bit... because, you know... what else can you do, really?

so this morning, the boys got up before the alarm and came downstairs. asher stole my muffin, but bram asked nicely and got one from the kitchen. then i looked at the clock and realized the alarm hadn't gone off, and so i sent them back upstairs. bram declares that he's going to leave his muffin downstairs because "it's dirty" (???) so he doesn't want to eat it in his room.

asher, who has, on occasion, been known to sneak food, also gets up and starts to make his way to the stairs. i looked and noticed that he had something in his hand, though i couldn't tell what it was. suspecting that it might be another muffin, i ask, "what's that in your hand, dude?" (trying to sound all innocent and naively curious so as not to tempt him to lie).

he looks at me with "duh!" written all over his face and says, "a rock." and he showed me, and yup. it's a rock. because you know, what else would a 4-year-old boy be holding in the living room at 7:15 in the morning??? (see the title of this post.)

ok, all the cuteness and fun asher-ness aside... we need to move on to the other kind of asher-ness... and sigh...

so, yesterday, i kept asher home from school. i'm still trying to figure out how he managed to open his eyes when he woke up; his eyelids were just. that. puffy. he was also a weird colour (see definition of "asher pink" under "A Lexicon of Asher" on the sidebar), and he was mottled all over. not pretty. then, when i was getting him dressed, he was having trouble balancing and his eyes weren't focused on anything. i says, "how ya feelin', dude?" he answers,


cue requisite questions re cotton balls in ears and so forth. the answer was no to all of that, but he is clearly dizzy.

so i stopped making his lunch and called the school to let them know that asher would not be going to school.

not to mention, he still has that nasty cough, which emerg determined is viral bronchitis, so really, should he be at school to potentially pass that around? i don't really think so. anyway...

asher wanted his dad, so i dropped him off and headed out to run a couple errands which needed to be... um... run?? (why does that not sound right?... wow, the title of this post works on so many levels! who knew?!) as i was a-walking, i bumped into the secretary from our paed's office. we got to chatting, and she asked how asher was doing... so i naively told her. "k, i'll book him for this afternoon."

what?? no!! i was just making chit-chat!! aw, man! i really didn't think he needed to be seen... but, i booked the appointment, anyway. (post title)

cut to 4:50pm. we're at our appointment.

doc listens to asher's lungs and... yeah... they're still wet and crackly sounding (despite the chest xray that looked clear last week), and he's wheezing. still. this has all be going on for about a month, now, and it's not getting better (which viral bronch would do on its own by now). so doc muses, "maybe it's something else... either way, i'm not comfortable treating this wheeze, so i'm gonna send him to respirology. they can deal with that wheeze."

(ventalin causes the patient's heart rate to go up. way up. so, um... yeah... respirology, it is.)

then doc and i were discussing the reflux issue, as well. see, asher used to have severe GERD. it led to failure to thrive (FTT - poor thing was so malnourished... hence the GJ-tube) and could have killed him a number of times due to his open airway. but! his vagus nerve healed and his heart function improved and so the reflux went away.

but it's back now. with a vengeance. almost seems to be trying to make up for lost time. asher had been on ranitidine (zantac?) for a while, but it stopped working (which can happen, and actually happened when he was a baby), so doc put him on lansoprazole (prevacid fastabs). in the meantime, however, we should probably figure out why he's refluxing again, since cardio has ruled out the heart as the cause (see this post if you don't understand the correlation). once we figure that out, we can treat it all more effectively.

cardio mentioned last week that we should probably see gastro again about all the reflux, but i was so thrown by her choice of words that i didn't catch if she would be referring us or if paeds was supposed to. so i mentioned this to doc yesterday, so she's going to send in the referral.

and so it goes. puffy eyes and chit-chat turn into two more specialists for the littlest man. this will bring our count up to 10:
  • paediatrics
  • cardio (london)
  • cardio (toronto)
  • heart surgery
  • pacemaker tech (not a doc, but specializes in the machine that makes asher's heart beat, so she counts, haha)
  • nephrology
  • neurology
  • immunology
  • gastroenterology
  • respirology
sure, there are kids out there with longer lists. but then again... my other kids only have 1 doc. so nine docs and a tech is a lot. on the other hand... um... asher's alive, so i'm gonna count this as a good thing. :)

so there you have it. yesterday. quite a day, if you ask me.

Monday, June 20, 2011

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

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. 

Tuesday, June 14, 2011

blogger asher!! :)

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Friday, June 10, 2011

in his own words...

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Wednesday, June 1, 2011

sorry for the absence...

but believe me, you didn't really miss anything. haha

we see cardiology on the 16th for a complete check-up. echo, ecg, pacemaker check, and a holter. i'll fill you in on all of that when the time comes.

as for asher...

he's fine. haha

no, seriously. he's fine. if you watched him, you'd swear nothing happened. he bounced back from this latest episode in no time at all.

physically, that is.

and even emotionally, too, for the most part. PTSD only came out for a little while, and only in a small degree: some scary dreams and disturbed sleep for a week or so, and he's still insisting he's a "little boy" and not a big boy, even when he does distinctly "big boy" things. he did regress a little bit and is back to loving his sucky and "needing" it most of the time, and ok, i'll admit, i was humouring him (read: spoiling him) and letting him have it. but like i told a friend recently, "if he had been breastfed, he'd likely still be nursing, since i believe in natural weaning, and this is a form of stress relief for him, and God knows asher has more than his fair share of stress, so i'm letting him use it for now." i have been taking it away from him for a few hours every day, hiding it in high places so he can't find it and grab it back. haha

but in the meantime, asher's been at home for the last couple weeks. and it's been wonderful! :) we've been baking and gardening and shopping and napping and generally hanging out. and i gotta say,

i've loved every second of it.

maybe it's selfish on my part, but he's just such a delightful little boy! he's so much fun, and he's hilarious, and he's so smart and playful and bright... the last couple weeks have been an endless stream of hugs and kisses and giggles. probably the best couple weeks i've ever had with him. ever.

we were out grocery shopping one day last week, and he was so funny. i don't even remember what he did, but i looked at him and thought, "wow! i'd forgotten how magical 4-year old boys are!" and then it hit me: i never really got to enjoy bram at this age, because asher was in such rough shape. so i was saddened by that. and then i thought, "well, i know a 4-year old boy is very different than a 4-year old girl..." and then i realized that, when blithe was 4, i was dealing with a rough pregnancy, then asher's diagnosis, and we spent most of the next couple years in hospitals and clinics with asher... so i never really got to enjoy blithe as much at this age as i would have liked to, either.

so that's been a bit of a downer for me.

but! i get to enjoy this age now, and it's truly wonderful. not just for the delights of the age, but also... because i have a 4-year-old boy. and that is magical and delightful and miraculous and wondrous and beautiful. when i think back over the last 4.5 years, i am truly amazed and grateful that he's still here, bringing so much light and happiness into our lives. even when the kids are all fighting, and asher's crying because bram grabbed back the toy that asher had taken from him and "brammy doesn't like me anymore!" it's still beautiful.

we've spent the last couple days in the backyard working in the garden (asher was only outside for little bits at a time, due to the humidity). asher had gotten some carrot seeds at mcdonald's (?!?!) the other day, and he was so anxious to plant them... which meant... i had to go find the garden. haha so i've spent two days pulling out weeds and grass, discovering things like onions and wheat (thank-you, birdies), and getting him to "help" me (mostly him pointing to weeds for me to pull and me telling him to watch where he steps because there's a plant right next to your foot no asher the other foot sigh you just stepped on the onion no worries it'll be ok). we've enjoyed the cardinal that lives around here, and asher had fun showing it to the "callapidder" he found and named elmo (surprised? haha). it's been so cute watching him with "elmo callapidder" and "mr squirmy" (a worm... or more accurately, several worms, but when you're 4 they all look alike, i think. haha). "don't be shy, elmo, it's me, ashie!" and "here's some dirt for you, mr squirmy, isn't that nice? now you can eat that all up!" see? adorable. {blissful sigh}

last night, there was a muffin sitting, untouched, on the coffee table. i asked asher to put it back with the other muffins, on top of the freezer. "but i don't want to," he said, and started to walk off. "asher, please put it away now or you'll get a time out and then you'll do it." "ok, mommy!" he said, with a smile (????). he grabbed the muffin and ran off to the kitchen. he came back and said, "ok, mommy, i put da muffin away." somewhat skeptical, i asked, "where did you put it, sweetie?" "in da fridge." ok, so it's not exactly where i'd told him, and i showed him where it was supposed to go, but he was just so cute!!!

i think it's safe to say that i've fallen in love with that littlest man of mine all over again.

now, all this being said about how much fun i've had with him at home for the last couple of weeks....

asher's back at school today. he said he didn't want to go back. in fact, he'd been saying that for a few days. and even this morning, it was, "i don't want to get dressed! i don't want to go to school!" but i got him dressed (in the cutest little outfit! ugh! he's so adorable it's sickening!! haha). got his lunch all packed (thank-you, Blithe, for your help!), and we set off for the bus stops. asher was complaining and complaining... until his bus turned the corner onto our street. suddenly it was, "MY BUS!!!!" and he literally ran all the way to the bus and climbed on and jumped into his seat and only looked back long enough to blow me a kiss good-bye before the bus pulled away. all together now: aaawwwwwww!!!!!!! yup, that's right. he's just. that. adorable.

so, here i sit, alone, for the first time in a couple weeks, in a quiet house, with my laptop and coffee... and i gotta say, as much as i miss that littlest man of mine, it's nice to have some quiet. {wink} and so now, if you don't mind, i'm gonna go outside with my journal and a book and my coffee, and enjoy the first perfectly, beautifully sunny and warm but not humid day we've had all week.

ps - a little boy from our church, little Joshie, was diagnosed with leukemia last week. please hold him and his family in the Light. he's getting his port today, and docs and mom are hopeful that he'll be ready to go home later this week. please pray for them on the long journey ahead of them.