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?!


yup.

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}

as promised... WE ARE OUTTA HERE!!!!!!!!!

well, this is officially the last post i will write in the hospital... well, for this admit, anyway. LOL

anyway, i just talked to the dietitian, who has put asher on a butter and whipped cream diet. i'm not joking. everything everything everything with butter, whipped cream and/or oil. this is because asher has gained less than 2 lbs in the last 2 years, and his height hasn't been going up like it should, either. he is considered "borderline FTT" at the moment... and there is a giant elephant in the room now, too... a g-tube. i told her that i really don't want to go down that road, at least not yet. she agreed that since he worked so hard to get rid of it, that it's not something they're going to do right now, but if a few months go by and he still hasn't shown significant gains in his weight, it is something we're going to have to look at seriously. sigh.

so i'm going to be implementing a lovely reward system to motivate asher to eat. something along the lines of a sticker every time he eats a full meal or a healthy (ie, high fat/high cal, aka "asher healthy" LOL) snack, and if he goes all week eating like that, he'll get a special treat. maybe a trip to the dollar store for a toy, or some mcdonalds fries or something... i'll figure something out, but right now we need to motivate him to eat. i did have one brilliant idea: every time he eats, i'll ring a bell. after a while, so the theory goes... i'll ring the bell, and he'll eat. ah, dr pavlov, what would i do without you?

ok, so i (probably) won't train my son like pavlov's dog. but hey, if it works... haha

anyway, that's the deal for now. right now we're just waiting for official word from the team and a script for the antibiotic and polycose (calorie supplement, to add to asher's food). then we're outtie!!!!!!!!

thanks for all the prayers, etc. we really appreciate them.

another quick post, so i can get back upstairs to asher

he's doing much better today!!! he's been in a fabulous mood, full of energy, playful... right now he's in the playroom because he's been asking all day to go play with the train table. so he's a happy little man right now.

they're going to switch the vanco and cefotaxime to ampicillin, which is also IV but not quite as heavy-duty as the other ones. they also want to see about switching him to an oral med, which would mean home! :)

i've asked about nephro, so we'll see. we'll probably be leaving here with an appointment.

he's still not eating, though. they've turned down the IV fluids (which were for rehydration and line maintenance) in the hopes that the decreased volume might inspire him to eat and drink on his own. so far, that's not working. but we'll see. he only had 2 bites of pepperoni pizza for lunch. and a Reese cup. but he didn't even want his chocolate milk! what is wrong with this kid??? (although i'm not complaining too much about the choco milk. he didn't want it, so i took  it. teehee)

anyway, i've gotta run for now. i might post again later this evening, but i'm hoping there won't be anything to report, so pray/cross crossables/send vibes that the next post will be called "AND WE'RE OUTTA HERE!!!!!"

talked to the doc...

and there's good news and bad news.

good news first: so far, the blood culture is negative, which means that, at this time, sepsis has been ruled out. so that's AWESOME!!!!

bad news: urine culture was positive, which means we're looking at a UTI. we're staying in hospital for now, at least until we have sensitivities, and then we'll know which med will work. i had to delve waaaaay back into my memory and inform the doc that Septra has never worked for a UTI for asher, so she'll know that, even if it's sensitive to that, not to bother with that and to try something else. she also mentioned some imaging. he had a VCUG waaaaaay back in the way, and it was negative for reflux (basically, backflow in the urinary tract), but dr filler had said that if asher had another UTI he'd order another VCUG and possibly nuclear cystogram (sp?) because sometimes a VCUG can give a false negative. i'll keep you posted.

thanks so much for the prayers so far, and please continue to hold us in the Light for the next little while. i'll continue to keep you posted.

how we got here

well, asher's still sleeping, so i have a bit of time, so i thought i'd fill you in on the events of the last couple days while i have the chance.

asher came home from ed's on thursday prevening (that's around 4:30, for those who don't watch big bang theory... sheldon's right, it's the perfect term, lol). apparently, asher had barely eaten all day. now, just so you know, he hasn't really been eating much since the fontan at all, but especially since he came off the fat-free diet his appetite has almost entirely disappeared. he barely eats anymore, which is concerning since he's usually a bottomless pit, and when you're trying to pack on at least 5 lbs to avoid the dread "FTT" label, you need to EAT! but he hasn't been.

on thursday night, we had cheese pizza for supper. which he chose. which he barely touched. and by "barely touched," i mean that he took his piece of pizza, and then just left it. he didn't even take a bite. then he went to bed, having had some kool-ade and some water to drink. but that's it.

on friday morning, he had a tiny piece of cheese and a slice of ham for breakfast. then we walked the other kids to the bus, and when we got home, he climbed up onto my bed where i got him dressed, and then he just sat in my lap and cuddled with me for a while. normally i wouldn't complain about that, since he's usually a very active child and every second of cuddle-time is a treat for me, but he just curled up in my lap and rested his head against my chest and stayed like that for a while. so i started to get concerned, because at this point i'm usually chasing him all over the house and having trouble catching him (i'm not even joking. this kid is FAST!). but instead of playing, he wanted to watch a couple of the videos i posted here a couple weeks ago. after watching beaker sing Ode to Joy a couple times, and smiling at the swedish chef making hot dogs (asher's absolute fave), he literally just rolled over and fell asleep. this was around 10:15.

he never does this. i usually have to (almost) force him to nap in the afternoons... usually because i'm exhausted from chasing him all morning. so when he fell asleep mid-morning,

i called dr b.

i told her about his lack of appetite, that he has barely even been drinking lately, and she said to let him sleep for another hour or two and call her when he wakes up.

so he woke up around 1 (yes, you read that right, an almost 3-hour nap) and he looked... off.

his energy level was waaaaaaay down, the sparkle was gone from his eyes, and he looked, well... yellow. with a hint of grey. and his nose was blue.

so i called dr b, who said, "yellow?? that can't be right. take him outside and look at him again." so i did. and yup, yellow. with grey and blue undertones. isn't that swell.

she told me to take him to our emerg, since she's on call. she let them know we were on our way, and what his baselines are and about his colour wheel. so off we went.

when we got there, he just wanted to be carried (usually i'd be chasing him around the waiting room) with his head on my shoulder. at triage, his sats were 94% (he's usually 96-98%), his heart rate was 107 (usually he just rides his pacer; at most he's low 90s, even when active), and his BP was 79/52 (baseline is 120s/80s). and his colour? well... i'll get to that.

we were taken right in (which should raise the alarm right there, given that this was st thomas emerg) and put in a room and hooked up to the monitor. at this point, we were thinking it was dehydration and possible migraine. we had a chest xray and they drew bloodwork and started an IV for fluids. then he fell asleep. yes, you read that right, he fell asleep. he doesn't do this. ever.

when dr b arrived at 4, she came into the room, took one look at him and said, "why is he yellow?" "oh, you see it, too?" yeah.

i should mention at this point that the only other time in asher's life that he was yellow was when he was 8 days old and his liver had shut down. yeah. so we're not a fan of this colour. at all.

anyway, we were sent off to london by ambulance. on the way there,

the yellow disappeared, being replaced by a horrid shade of pale, still with the grey and blue undertones (which is an improvement over his usually; he normally is just blue and grey. guess he thought he'd mix it up a bit). but on the way... he started to get warm. like feverish. they took his temp and it was only 37.2 or so, but he felt like he was burning up. and he was still very lethargic.

into emerg, where his fever was even higher. cardio was consulted, but they were happy with the ECG from st thomas and the one done here upon arrival, so dr w is going to follow him closely this weekend, but she's ok with him for now. rhythm looks fine, so no huge concerns. it's just all the other symptoms...

they decided that the problem is likely an infection somewhere, and it's really starting to look like sepsis. so doc ordered two IV antibiotics: ceftriaxone and vancomycin. while the cef was running (this was the first one), asher developed a horrid red blotchy/mottled mess all over his torso. doc saw it from about 20 feet away, it was just. that. nasty. he told me that this can happen while vanco is running, but i told him that asher has been on both of these meds many, many times and this has never happened, so he was very concerned. he decided to throw some benadryl in with the IV, and that seems to have taken care of most of the redness. a few spots remained, but nothing major anymore.

eventually, his vitals stabilized. then the question became "unit or ward?" doc said that if he stayed stable like this, we would go to the ward, but if he destabilized again, we'd be going to the unit. thank God, he remained stable, so we're now on the ward.

we got to sleep around midnight or so, but asher is still asleep (he usually wakes up by 7:30 regardless of his bedtime). the plan for this morning is for more bloodwork, nasal and perianal swabs, and another urine sample.

but it's still really looking like sepsis.

they drew the culture in emerg and sent it off, so preliminary results should be back tonight. this will tell us if it is, in fact, sepsis. within a couple days after that, we would know the bug and which meds to use.

the theories about the source of sepsis? well, there's two:

1. spontaneous sepsis. sepsis usually happens when the blood picks up a bug from somewhere in the body and becomes infected. when asher had sepsis at 10 months, he had no other infections, so this is entirely within the realm of possibility again.
2. when i told emerg doc that asher's pacer site had become infected post-op in toronto, he became concerned. there is a possibility that there has been an absess in the pocket since then, just lurking, and now it's getting ugly. if this is the case, this is even worse than sepsis, because an infection in the generator pocket can shoot up the leads and go straight to his heart. and this is a distinct possibility, as well.

even if it is "just" a spontaneous infection, this is still terrifying. sepsis can lead to some horrifying complications, from toxic shock to endocarditis to heart attack to death. and this is asher, remember, so we're all bracing for some very asherish complications. (you know your kid is complex when he's his own adjective. LOL)

please hold us in the Light. pray, cross your crossables, light a candle, send good vibes, doodle a prayer... whatever it is you do, please do it now. we're all nervous and scared. he's pulled through sepsis before, but that means that he's had sepsis before, so we know what we're dealing with here, and it's scary.

my access to the internet is limited while here, but i'll do my best to keep you as up-to-date as possible. i will definitely post when the prelim culture is back, but the final report won't be ready for a few more days. we're here for a few days at least.

i don't have much time, so this will be a very quick post.

thanks, wen, for updating for me. but now i'm updating again.

forget what wendy wrote about dehydration and migraine. that's likely not it.

not by a long shot, actually.

it's looking like sepsis.

they've started him on two big antibiotics: ceftriaxone and vancomycin. when they started the cef, asher broke out into a horrid blotchy/mottled mess... which can happen with vanco, though i told the doc that asher's been on both these meds before and this has never happened. so they ran some benadryl through the IV and that seems to have taken care of most of the redness. there's still a few spots, but it's not nearly as bad as it was.

they've drawn a blood culture and sent that off. preliminary results should be back tomorrow evening, with the bug and med course mapped out a couple days later. until then....

we're admitted.

if asher's numbers stay the way they are right now, we'll be going to the ward. if he destabilizes again, however, it's the unit.

i'll keep you posted as we learn what's going on. the current theories are that it's either spontaneous sepsis like when he was ten months old (no other infections anywhere, just his blood, which doesn't usually happen, as sepsis is an infection that the blood picks up from somewhere else), or that there has been an infection and/or absess lurking undetected in the pacer pocket since april. that's possible, too. so who knows. when i know, you'll know.

please hold him in the Light right now. this is scary. thanks.

WE'RE GOING HOME TODAY!!!!!!!!!!!!!!!!!!

'nuff said.

yes, i know, it's been a few days...

... but other than wendy's post the other day, there hasn't been much to report.

asher's infection seems to be responding to the vanco (they stopped the gent a couple days ago, thinking it was overkill). the redness is almost gone now, so that's good news. but they've already had to save his IV a couple times, and the dose this morning was likely the last for this line. he'll likely be getting a new line this afternoon. i just hope they don't take him to the treatment room for that. he's terrified of that room, and personally, i think he's suffered enough already.

by tomorrow morning, they'll have the results from his blood culture, so they'll make a decision then about the vanco. please pray etc that they can switch him to a different med for the duration of the course.

asher's drainage has slowed significantly, as well. on friday afternoon, dr c popped in to check on asher. the drain had been off suction since the night before, and was still draining quite a bit (25 ml in overnight). so he ordered it back on suction, then clamp it for a few hours. this would basically trick the body into thinking the tube was gone, so we could see what would happen if they did, indeed, pull it. after a few hours clamped, open it back up and see what happens (they were looking for respiratory distress, fyi). if worse comes to worse, they'd do a chest x-ray overnight to see what's up. so we did that, and when the clamp came off... he drained almost 30 ml (an ounce, for my non-metric readers) in 20 mins. yeah. so the tube stayed in, with suction.

but...

the resident came in last night to talk to me, because she is super keen to pull the drain. i said, "are you freaking kidding me???" (not my exact words, but i thought it! LOL). i said that since our previous admission was because of pleural effusion, i'd rather the drain stay in one more day. "well," she said in a tone that showed clearly that she has no idea who she's talking to, "any time you have something from outside going into the body" (note the terms she uses. yeah, clueless.) "there's a chance that --" "yes, i know there's a risk of infection. but right now he's covered by vanco, which is pretty heavy-duty, so if we leave it for one more day, it won't be a huge problem. besides, if you pull the tube, send us home, and he's re-admitted for effusion again he won't be covered by the vanco and he'll be susceptible to another bug, and given that he's immunocompromised, i'd prefer to leave the tube where it is for now and re-assess in the morning." she relented.

but they're pulling it today. and (i think) i'm ok with that.

as for me... well, this week, i wasn't doing so well, myself. i am exhausted in so many ways, completely drained. in fact, one person described me as looking "deflated." i told her i felt like i'd had the crap kicked out of me for the last 6 weeks, and she said - get this! - "well, you have." nice. so... last night i came to hamilton for the night. i got to spend some time with the kidley-winks (we played snakes & ladders - wow, i'd forgotten how fun that game can be!) and had burgers, and i got some much needed sleep, some restful sleep... and it was lovely. today i feel much better, and ready to face whatever crap gets thrown my way.

thanks for all the prayers/vibes/crossed crossables. we really appreciate them. please continue to do whatever it is you do, because we're not done yet. and please remember all the other kidlets out there, including Hannah (with TGA) who had her switch done on friday and is in the unit, and taylor who has a rare syndrome which includes cranial issues, feeding issues, and heart issues, and Mia who is 7 years old and was in a horrific car accident last weekend, and will require extensive plastic surgery to reconstruct her face and limbs (her mother was asked to bring in a picture so they would know what to do). ethan is still here, but out and about a bit, and there's a code blue plan in place for his mom Shawna (who has CHD and a history of strokes). so there's quite a few people to pray for, but we all need it. thanks so much. :)

hey, margaret! his sats and HR match!!!! (in the good way!!!!)

what a difference an afternoon makes!

asher went in for his surgery yesterday at 3:00. at about 6:30, dr c came out and gave me the good news, that asher did well, and the pacemaker is in and working. how do you spell relief? P-A-C-E-M-A-K-E-R-!

the pacer is set to kick in when asher's HR dips below 80, and yeah, it's working right now. but it makes the ECG line on the monitor look interesting. there is now a white spike where the P-wave should be, at the right distance from the QRS line... oh, dear, i know too much about this stuff now. sigh...

asher looks great now, all things considered. he is pale, but it's pale pink now, not grey. and his eyes are puffy, but a couple doses of lasix should clear that up pretty quickly. he isn't draining much, either, and the plan is to remove the drain tomorrow. asher is also in quite a bit of pain. his voice is quiet and he doesn't move much, but we're giving him morphine as needed, so that should help. but he's asking for lunch, and this morning he asked, "mommy, i want go playroom. but not right now. later. after lunch." so this is progress. he knows he's not up for it right now, but he knows he will be once he eats. so that's delightful to see.

he'll be getting a holter today, which is standard procedure after a pacemaker, just to make sure everything is firing the way it should. here's hoping it will be our last holter for a very long time (this will be our 4th in about 3 weeks).

and in case you're wondering about me....

last night i wasn't doing so well. i started down a slippery slope of anxiety again, and i don't want to go back to that, thank-you very much. so i drank some water and went to bed... and didn't wake up till about 9:00 this morning. i'm still tired, but my brain is working the way it's supposed to and i'm feeling better. the exhaustion is only physical right now, and i can deal with that.

in other news...
i've been asking for prayers for several kids lately. today i need to add a couple more.

1. a little girl (i don't know her name, but she's 7) was in a head-on collision on friday. please pray for her and her mom.
2. a little boy, Jack, who had a heart transplant and is now battling cancer.
3. another wee babe, who is 16-months but weighs only 13 lbs. a bunch of us moms were talking with her this morning, and giving her all kinds of questions to ask the docs. has he had a sweat chloride test? screening for chromosomal anomolies? have they checked his heart? what about a GJ-tube (since he's vomitting formula after being without food for 18 hours)? she made a list, and she'll be asking, so i'll try to keep you posted.
4. please remember allison and brigid, shawna and ethan, allyson and ethan (VSD closure), stephanie and mason.
5. a mom i know from SickKids, who has been part of asher's team over the years, just had her first baby 11 days ago. he's here, too. i don't know any details, but Someone does, so please hold them in the Light, too. she looks tired and stressed and scared. she described it as "a rough 11 days."

i think that's about it for today's post. i'm off to get lunch for myself and order something for asher (probably fat-free hotdogs and green jello and chocolate milk). i'll keep you posted.

in a few short hours, asher will be a robot, "but not a big robot. i be a little robot."

asher is scheduled to go in for his pacemaker at 2:00 today.

yesterday, when i was talking to deirdre (thank-you for the wonderful lunch, by the way... it really was lovely and energizing and delightful, for so many reasons), she asked how i was feeling going into this surgery. i told her honestly that i have never, in asher's life, been so excited going into a surgery.

and then last night, they took asher into the treatment room (where he has never been) and put in the IV. he screamed and screamed and screamed and fought and screamed... and all i could do was give him kisses... and pin him down on the table. it was awful. completely heartbreaking, to know that he is so scared, and that he has to suffer this much, and that it never ends...

and now today, i am exhausted. i can't wait for this surgery to be finished. i can't wait to see him afterward. and i can't wait to go home. this is our third admission in less than 6 weeks, this is already the longest admission, and we're not done yet. this is his second heart surgery in a little over a month.

so i'm done. i have nothing left, i just want to cry, and sleep, and hold my pink baby (not a grey one, thank-you very much, just a pink one), and cry some more, and sleep a bit longer, and cry some more, and not be in a hospital, and cry a little bit more (once i've rehydrated), and sleep in a comfy bed, and cry all night, and then just sit and stare at my beautiful orange walls, and cook in my own kitchen, and laugh at bram's quirkiness, and play with blithe and her barbies, and cry some more, and cuddle all three of them to sleep, and wake up surrounded by my kids, and cry a bit more, and make breakfast for all of us, and do some laundry and dishes and tidying and yardwork and pet smokey, and cry a bit more. i miss all of that (ok, maybe not the dishes, but everything else i genuinely miss). i want it back. i'm just so tired of all of this. i know we only have a few days left for this admission, but then what? this life never stops. it's always appointments, trips to emerg, paeds appointments, watching for colour and symptoms, and holding my breath and waiting... for... something. i don't even know what i'm waiting for, but i feel like i'm just waiting for something to go wrong now. and i'm too tired to do it anymore.

and yet i have to. i have to keep going. i have to comfort asher, play with him, help him to be brave, help him laugh and smile and giggle and play and live. and i don't mind any of that. i love it, i really do. and i honestly wouldn't trade a second of this life if i had the chance... but it hurts to know that this kind of life exists, where predictability and stability and simplicity are just dreams that a mother dreams and nothing more...

right now, this is just too hard. i'm too tired, too drained, too weak, too heartbroken, too spent.

and all that being said...

please continue to remember brigid and allison in london. a long, scary admission, and allison is tired.

little ethan (VSD closure) is going home today! his mom is nervous, but this is exciting for them. the last drain is coming out and they're outta here! so enjoy, my friends, you've earned it.

and another little guy to hold in the Light. his name is also ethan. not a heart kid, but his mom is a CHD survivor, which is fantastic to see. ethan is 6 months old, and currently has pneumonia, and after the chest x-ray revealed lesions in his lungs, they did a CT scan, and discovered a tumour in his right lung. it's inoperable, due to its location (right behind his heart) but is potentially blocking his airway. ethan is going in for a PICC line today, because his IV keeps blowing and they have run out of places to try. he's so adorable, all pink and chubby and happy, and honestly, his mom is one strong woman. heart survivor, and ethan is the youngest of her seven (yes, you read that right, seven!) kids. please pray/cross your crossables/send good vibes their way. ethan will be going in for more tests in the next little while, and mom is scared out of her mind right now.

thanks so much for the prayers and so forth; we all really need them right now. my parents are coming up this afternoon, and bringing the kidley-winks with them, so that will be lovely. after the surgery, asher will be back up on the ward, not the unit, which makes it nice, because we don't have to pack our stuff, and oh, there's a lot of it.

please pass the barf bucket... and some new bedding... and the menu... and a candle...

and that about sums up this post today.
first up: the barf bucket. asher will be going early next week for his pacemaker. his HR was almost normal yesterday while he played, staying in the high 60s to high 80s all day. (and let me clarify "normal": the high 60s to high 80s is almost up to his pre-fontan resting HR... but this is our current normal, so i'll take it.) although, at one glorious moment, the "tachy" alarm went off. ah, sweet tachy, how i've missed thee. (oh, for those who don't live and breathe by ECG monitors: "tachy" is short for "tachycardia" which is fast heart rate. a beautiful alarm to hear after spending 3 days with atropine at the bedside because of serious brady. LOL) then this morning on rounds, balki was giving report, and he said that asher had a good night with no episodes, and his HR stayed in the low 40s all night. yes, folks, you read that right. at this point, low 40s is good. then balki continued: "and i saw the holter report from london, and it was impressive . it showed his heart rate going as low as 28, with some long pauses." i think i'm going to have to explain what "impressive" means to this fellow; perhaps "remarkable" would have been a better word. or "terrifying." or even "nauseating." all good words, and much more applicable than "impressive." but that's just me, and i'm obsessed with words (in case you hadn't noticed already).

second: some new bedding. this is asher being asher. sigh/LOL. this morning, he wanted to pour some water into his skim milk (apparently it's not watery enough. blech!) so he grabbed my water bottle, turned it upside down... and missed the milk. but fortunately, he managed to hit the table, the bed, and my pants! well, isn't that special. but i suppose it's wonderful to know that even in the hospital (which, btw, he doesn't want to leave. he informed me of this this morning over breakfast. too bad, kid, this time next week we are outta here!) he is still his usual, mischievous, 3-year-old self. but now i need to remake his bed. and so it goes...

third: the menu. yesterday, i'll admit, i was exhausted and overwhelmed, and ok, i'll admit, i probably (read: definitely) haven't been taking good care of myself. so, my dear friend DW came over in the evening. we hung around until asher was asleep... and then we went out. we "meandered" (toronto-style, meaning "not quite running") over to college street, and found a delightful little establishment, and had a good time. she introduced me to a friend of hers (teehee) and we hung out and talked and had a deep bib-interp-type conversation, and then we "meandered" back to the hospital. then we talked some more, and tried to help someone out, but he disappeared before we could get to him. so it goes in TO, i suppose, but at least we wanted to help. next time we'll react right away... i hope. we've each been so blessed in the past (and present)... it's such a joy to get the chance to pay it forward.

so there's the daily report from asherland. i'll try to update over the weekend, but it will be difficult to get to a computer. i'm looking forward to a "boring weekend" (dr c's words)... but at least i'll have some company. the kidley-winks are coming up tomorrow, and i hope to have some other company at some point this weekend... dr c's wife. yes, this is my life, folks: i'm going to be chatting with my son's heart surgeon's wife. it's a long story about how this came about, and why i'll be talking to her... maybe one of these days,  i'll fill you in, but for now i'm holding it close to my heart (at least in the blogosphere. i've told some people already, but it's too amazing to put into written words right now, so you, my dear readers, will just have to be patient) and i'm  looking forward to an amazing opportunity.

but while i have your attention, thank-you for your prayers/thoughts/vibes for little ethan. his surgery went well the other day, and the plan is to bring him back up to the ward today! i've been talking to his mother a good deal, and it's funny, the people who come into our lives in the hospital. ethan & co. were in the room next to us post-fontan, then we all went home on the same day. when we were transfered back here the other week, ethan & co. were in the room next to us again, and we all went home on the same day. and when we arrived here on tuesday, ethan & co. were in the room across the hall from us! funny how... but please continue to hold him and his family in the Light. he's doing well now as he recovers from his VSD closure, but now we're praying that he stabilizes in the big picture, and that he and his family can finally have some peace. CHD is stressful and scary, regardless of the severity, but at least we can be graced with other families who have "been there, done that."

and since you're on your knees, please continue to remember brigid and allison, who will be in London hospital for another couple weeks. brigid is a complex (and delightful!) girl, and allison is an amazing mom, but this admission is terrifying and stressful and worrisome. they need some rest, some peace, some stability, and something as close to normal as possible. i've mentioned them before, so i won't go into too many details, other than that right now, B is battling sepsis with weird and rare bugs, and it's throwing off a lot of systems for her, and her mom is pretty scared. send them Love and hold them in the Light over the next couple of weeks, and i'll try my best to keep you updated on her.

also, please pray/cross your crossables/send good vibes out there for mason and his mother stephanie, as well. this is another family we met in london during our first admit there in march. mason is another complex child with multiple issues, and had a fundoplication last week. and stephanie needs prayers as well, as she doesn't seem to be coping very well right now, based on her FB status today. please hold them in the Light, too.

that's it for now. i'll try to get online at some point over the weekend. if i don't manage to update, please don't freak out. computer availability is limited without the resource centre, so a lack of updates is neither good nor bad... it just means i don't have a computer nearby. so... ttyl! :)

because on the roller coaster of asher's life, ups and downs aren't enough, so he threw in a delightful corkscrew...

so, EP finally and officially ok'd the pacemaker, and we were going to be going in today.

then they did bloodwork.

and checked his INR (clotting time, since he's on blood thinners).

and it was too high (he doesn't clot easily enough).

so...

surgery has been post-poned. which means... more waiting. so far, we're on Day 7 of this admission, and at this rate, we're going to be here for at least another week.

i was chatting with maricor (the surgical co-ordinator) in the hall this morning. that's right, she saw me walking along, and she stopped to talk to me... because she knows who i am. you know you're here too much when... ugh. anyway, right now it looks like tuesday will be the day.

till then, they're withholding the warfarin and just making sure asher doesn't hit his head on anything... although i don't think it would be a problem even if he did, since he smashed his head on the table last week when he fainted, and there wasn't even a mark. so we're probably good for that. but it would still be waaaaaaay too risky to do surgery in a kid who doesn't clot, so we're waiting. "obviously," quoth dr russell on rounds this morning, "if we need to do something sooner, we will, but the plan is to wait and make sure the INR comes down on its own." sigh...

so that's the plan right now. hold off on the warfarin, probably more bloodwork in a couple days, and surgery on tuesday. the date's not carved in stone yet, but that's the word on the street... or ward, as the case may be.

please hold us both in the Light over the next few days. asher's HR is still low, and i'm exhausted in every sense of the word. it's just getting to be a bit much for me. i really need a break right now. :( so yeah... that's what we need right now. patience, rest, peace, a change of scenery (for heather) and a heart that beats (for asher). thanks so much.

all that being said, we had a delightful opportunity to give back a bit this morning, which, of course i jumped at, given my beliefs about stewardship and all that. (i believe we have a responsibility to use what we've been given to help others, and we've been given a boy with a very unusual heart, and because of that, we're often given opportunities to further research and such.) this morning, dr golding approached me about allowing him to use asher to educate some medical students on examining young children. of course i said yes, and i think those poor kids didn't know what to make of us! lol when they came in, asher wasn't afraid or nervous of anything, just played with his toys while they "looked for his breakfast" in his tummy (honestly, at this point, they could have said, "i'm just listening to your stomach and looking for your liver" and asher wouldn't have minded, but he's not exactly the norm...) and took his deep breaths. apparently, asher was a great one for them to learn on, since they could actually feel his liver. apparently, that's not normal... but everyone has always found asher's liver pretty easily. not where it's supposed to be, mind you... just the other week it was 6 to 8 cm lower than it should be, but that's good. now these kids will know what they're feeling for. i had to explain asher's condition, his other issues, what we're in for this time, his development and growth, that sort of thing. probably a little overwhelming for a bunch of students, but hey, if you want to be a doctor, you're going to meet kids with wonky physiology, so might as well start with the wonkiest heart possible, right? anyhoo, just thought i'd share that little story. ttyl! :)

in a couple days, asher won't be able to go on roller coasters anymore. lucky for him, he's a roller coaster unto himself

lucky for him, perhaps... but does he have to take me along for the ride?!?!

so, it's been interesting since getting here. we got here yesterday afternoon, safe and sound. and since then, yeah, it's been up and down so many times i've lost count.

we got here, and first up: a holter monitor. are you kidding me?!?! honestly, i almost cried. HSC wanted one while we were in london the first time, a couple weeks ago. then they wanted one while we were in london over the weekend. now they want another one?!?! but they really only wanted the overnight data, so it's already off. i talked to the fellow, filled him in on all the details about the last few weeks (why does it feel like months?)... he wasn't surprised. and, by the way, neither was i when he refered to asher's "intermittent AV block" and "sick sinus syndrome." (remember a couple weeks ago, when i started learning about arrhythmia, and i said i had an idea of what the problem was? yeah, that was it. HAHA! i was right again!) anyway... if you look up Sick Sinus Syndrome, you'll find that it involves periods of tachycardia [fast heart rate] (which asher had a year ago) and bradycardia [slow heart rate] (which asher has now). you'll also learn that it is very rare, but mostly happens in kids who've had heart surgery, and that the only treatment is a pacemaker. so......

they sent in an EP fellow (EP = electrophysiology. the ones who are especially obsessed with lub-dubs). he asked a bunch of questions, i told him about the dizziness and the fainting spells and the brady episodes in london, and how hard it is to wake him when his HR is so low. honestly, at that, the poor guy looked like a deer caught in the headlights. then i continued with the wide range of grey asher turns. this poor guy... the fellow, i mean. he looked actually scared.

cut to rounds. the fellow hadn't had a chance to see asher yet, but he gave his little spiel anyway, including the delightful part where he said, "he didn't have any episodes last night." dr russell quickly flipped through asher's chart and said, "he was in the low 40s all night." "well, yes, but no real episodes." "but he was in the low 40s all night." a nice, gentle reminder to the cardio fellow (who looks like Balki from Perfect Strangers, btw, so from now on, that's what i'll call him, for clarity's sake) that low 40s is still considered bradycardic for a 3-year-old. so the plan is to discuss asher again with EP (which shouldn't be a problem, given the fellow's reaction last night) and get a plan in place by the end of the day, "one that we can all live with," as dr r put it.

but there have been some interesting revelations along the way:

1. our fave surgeon, dr c, reads this blog. he told me yesterday that he read the blog and that it was an easier resource for him than going through all the charts and records. so... hi, dr c! :)
2. maricor, the surgical co-ordinator, didn't want asher to have breakfast this morning "just in case." but then she changed her mind, so he's allowed to eat now. but! this little tidbit shows what everyone is thinking, and just how quickly this will happen.
3. balki said to me today that everyone knows that asher will be getting a pacer, but we still have to go through the usual channels.
4. dr c popped in to chat this morning. he said that asher looked great, though sweaty. then he looked at the monitor. and saw asher's active HR. 62. yeah. and asher's sweaty. quite sweaty, in fact. then he (dr c) said, "well, i'll talk to you later today." and i wanted to vomit.
5. maricor was walking past our door as dr c was walking out. he asked her what the plan is for asher, and she replied, "well, we're just waiting for the official word, and dr r is running a clinic today, so later on today we'll know for sure."

so guess what this all means! asher's very likely getting a pacemaker, and within the next couple days. we just need EP to say officially that this is what we're gonna do. when i hear "officially" i'll let you know.

in the meantime, please hold asher in the Light. and me, too, for that matter. this is exhausting, scary, stressful, exhausting, tiring, exhausting... too many times over the last couple of days i have nearly burst into tears just from exhaustion. i'm trying to keep my spirits up right now, and think positively, and distract myself with cheesy romance novels and stuff like that, but still... we're sitting in a  room at sick kids, and everyone knows what the next few days will bring. so please remember us.

also, please continue to remember brigid. she hasn't been having a good couple days, either, and they'll be transfusing tomorrow.

and since you're praying/whatever you do... a little boy named ethan (VSD with CHF, 6 months old) is having his OH VSD closure right now. he's got dr c, so you know he's in good hands, but the mom is very worried and scared and tired. please remember them, as well. thanks so much.

just heard from cardio......

AND WE'RE GOING TO TORONTO!!!!!!!!!!!!!!!!!!!!!!!!!

we're leaving as soon as transport is arranged, and surgery will be soon. i'll post more when i know the details (like when the surgery will happen) but they're rushing this now.

getting you all caught up...

sorry for the lack of post yesterday... i was simply too exhausted to write. this weekend has been one of the longest few "daze" i have ever experienced in asher's life. sigh...

as i posted on saturday, asher's heart rate while sleeping dips. and dips very low. but only for a minute or so at a time... while he naps. apparently, when he sleeps overnight, however...

it gets down to 30...

and stays there...

for 5 minutes or more... until he's roused.

which is exceedingly difficult to do. after one episode on saturday night, his nurse turned on all the lights, turned on the TV - loud - changed his diaper, washed his face, and sat him up... and then he woke up. for about 5 seconds.

and then he crashed again.

and when his HR is down, he is grey. and i don't mean slightly dusky. no. i mean, grey. think charcoal. yeah.

i'll admit, i was terrified after the first episode. so i called a friend (and really, i just bawled when he answered the phone; i could barely speak at that point), so he raced over and stayed here with me for a couple hours. it helped get me through the fear... only for a few hours, but it's better than nothing.

during one of the episodes on saturday, asher was very dark grey. so much so, in fact, that the nurse got scared. she called in the resident, who also got scared, and ordered that atropine be kept on asher's bedside table, just in case. not only does everyone here now know that asher needs a pacemaker, the PCCU docs (and cardio) don't even want him here anymore. i heard the resident say, "get him out of here. just send him to toronto now." excuse me while i vomit.

k, back.

yesterday morning, i went to church. i figured the break and change of scenery would help. oh, yeah, great idea. i stayed for the first song, and then i ran out to the atrium, sat down at a table, and cried. and then it was like a cloud of compassion settled over the church. a nice man (whom i'd never met before) came over, and said, "i'm not trying to be nosey here, but... you wanna talk?" so i told him what was going on, and he went and got the pastor's wife, who came right out, sat down with me, hugged me, listened to the story (she knows about asher), and got me a fresh cup of coffee and piece of banana bread (that's right, my church has a coffee/snack bar... i love my church. lol) and prayed with me. we talked at length about everything going on right now. and i cried. and cried. and cried.

then a friend and i went out for lunch, where we bumped into a couple of friends, so we sat with them and talked and laughed and had a great time. a refreshing time. a fun time.

when i got back to the hospital, the kids were there, so i cuddled with them for a little bit... until i dozed off. yeah, i was exhausted! asher was overjoyed to see them, and he played so nicely with them. it was wonderful to see them all so happy together. (blithe and bram have now gone back to hamilton to stay with my parents. hopefully they can go back to school there while asher's in the hospital.)

my friend and i were invited out for a barbeque last night, so i went and again had a wonderful time, and by the time we left, i was very tired, but only physically. i was restored last night, and it was amazing. this is the good thing about PCCU: with a nurse at the bedside constantly, i can leave when i need to, and know that asher is still being very well taken care of.

overnight, i slept. i fell asleep at midnight, and didn't wake up till after 8:30 this morning. gee, think i was tired? lol but this morning, i feel better. much more functional, and able to continue and support asher the way he needs me to.

rounds this morning was interesting. apparently, asher didn't have a super-spell last night, just a couple times when he went down to the low 40s, so that's reassuring. (how funny, to think of a 3-year old with a HR in the low 40s as "good.") but all night, and still this morning, he is very sweaty (and he usually isn't a sweaty kid, so this is alarming) and slightly dusky. i can see it, and his paed would see it, but most wouldn't, so it's tolerable. but PCCU doc had this to say:

"so, we're just waiting till tomorrow, when the doc we want is on in toronto. then asher will be able to go and get his pacemaker. until then, if his HR drops to 30, even in his sleep, and he doesn't have any symptoms, we're just going to leave him. rouse him if he drops to the 20s, but leave him if he's in the 30s with no symptoms. but if he turns grey, we're going to poke him [give him the atropine]." i told her that once he's in the 30s he is very dark grey, darker than i've ever seen him (and oh, the shades of grey i have seen him!), so she nodded and said, "yeah, if he's like that tonight, we're gonna poke him."

so that's the plan. i won't go on my rant about the dietetic assistant i've been dealing with about asher's menu, but can you believe they don't have a low-fat/fat-free diet for kids at this place?!?! and she seems to think that he can still have red meat and mashed potatoes and low-fat cheese and cottage cheese (regular) and stuff like that. this morning, i'd had it, but told her politely to just call the dietitians at sick kids and talk to them. here, they seem to think that we've been given a total fat per day maximum. i told her, "no. it's fat-free. that's what i was told, that's what is written on the list i gave you. so i don't need to know how many grams of fat are in the mashed potatoes or lasagna. i was told fat-free. that's it. fat-free. i can't help you beyond that, but i really don't want asher having chicken breast for lunch and supper every day. what do you do about adults when they have chylothorax? this can kill my son. please, just call the dietitians at sick kids. they can help you better than i can." (and i realize that sounds snippy, but i was actually more gracious than that. i'm just tired of trying to explain to her every day that chylo can kill asher, his diet needs to be fat-free, i don't know how many grams of fat he can have in a day, because the therapy is fat-free. that's it. this isn't rocket science, i don't think, and i don't think i'm asking too much here. just a machine to keep my baby's heart beating, and a diet that won't kill him.)

ok, maybe i didn't spare you the rant. sorry. lol

so that's where we're at right now. asher is playful but pale and grey and sweaty, i'm rested and frustrated with dietary but hopeful for tomorrow, and we're just twiddling our thumbs and hoping asher doesn't smash his head on the bed rails if/when he faints.

please continue to hold us in the Light right now. it's stressful and exhausting here. we're managing today, but who knows what tonight (or tomorrow) will bring. thanks. :)

the most heartbreaking afternoon... and the most heartwarming afternoon... keep praying

my FB status right now says:

Heather has spent the afternoon watching asher crash. he fell asleep around 3:30, and ever since, his HR has been dipping. and each time, it gets lower. he now gets down to 30 and stays there for several seconds. it's VERY hard to watch, even though i know this is EXACTLY what we need him to do. pray that he keeps doing this, but please make sure you also add that he doesn't code. this is terrifying.

meantime, brigid isn't doing so well, either. allison and i both allowed ourselves to cry this afternoon, because we're both in crap positions. funny thing is, we've only known each other for 2 weeks, but we know we'll both be there for each other... because we've both been there, we understand... it's nice to have someone to cry with (and to laugh with... at the same time! LOL)... but seriously, you can't imagine how painful these admissions are for either of us. it's hard to cling to 86% (for her) and 70% (for me) as you see your child in these conditions. but it's what we do. too often. just pray we get to keep clinging to these numbers for a very, very, very long time.

and remember, allison, you and brigid are loved. lots of hugs to you, and i'm here when you need me.

because apparently, we haven't been in the hospital enough yet...

we're back in london. in fact, we're in the PCCU. yes, Paediatric Critical Care Unit.

i won't repeat what wendy wrote earlier, so i'll just explain why we're here. the cardio in london was actually "frightened" (his word) by asher's symptoms. bradycardia without symptoms is acceptable. symptomatic bradycardia is a completely different animal. it is actually dangerous. everyone here is now convinced that asher needs a pacemaker. toronto, not so much. they just want evidence that the symptoms happen during periods of low heart rate.

and to clarify what i mean why i say "low heart rate"... asher's average heart rate now is 59. that's right. 59 beats per minute. his resting heart rate before the fontan was low to mid 90s. 59 - 70 is now his active heart rate. this is bad bad bad. especially now that he has these symptoms. he nearly fainted on tuesday night, he actually fainted last night, and he's almost constantly dizzy and grey. ugh.

so here is my prayer request tonight: please pray that he has one of these "episodes" during a period of low heart rate. that's right. please pray pray pray that he faints with a heart rate in the 40s. or wakes up in the night, when his HR is in the 30s or low 40s and starts crying because he's getting dizzy. yes, you're understanding me right. we want and need asher to crash right now. so please pray or do whatever it is you do really hard that we have a very rocky admission. this is what will get the evidence toronto needs. so that asher can get what he needs.

i'll try to keep you updated while we're here.

I WASN'T EVEN TOLD TO LOOK FOR THESE SYMPTOMS TILL I GOT HERE!!!!

so, last night i asked asher's nurse for some information about arrhythmia. i knew they had pamphlets and booklets about it, but i was "stuck" in his room, so i couldn't go hunting them down. but they love it here when parents ask questions and want information. so... she got me a pamphlet and printed off several pages about it.

and i started reading. and learning. and i think i know what the issue is, but i may be wrong, so i'm not going to say here. it's just a thought at this point... BUT! i learned about symptoms and signs to watch for.

so when asher woke up at 2am and cried, "mommy, i getting dizzy again!" i jumped out of "bed," called the nurse  and ran over to asher. "you're dizzy right now?" "yes." "does this happen a lot?" "yes."

excuse me while i vomit. i had assumed he didn't have any symptoms, because he wasn't telling me anything. and i didn't know what symptoms to watch for or ask about, because i hadn't been told in london. just that "if he crashes at home, there's nothing you can do about it there."

this morning, i asked asher again if he gets dizzy a lot, and he said yes. then i asked if his ears ever feel like they're stuffed with cotton balls. "yes." "honey, does everything go black sometimes when you're awake?" "yes." "a lot?" "yes."

he's been having these symptoms all along, and he never told me, and i didn't know to ask!!! because i wasn't given any information about this.

so please pray/cross your crossables/send good vibes for asher. so far today, he hasn't had any symptoms, his HR is closer to normal, and i haven't seen the weird rhythm. but it's only 3:00 in the afternoon now, so who knows what he'll do later...

i'm scared out of my mind now. his nurse last night came in often to check on him, because she could see at the front desk that his HR was getting low (they turn off the monitors in the rooms so everyone can sleep, and send the signal to the nurses' station). asher's heart rate kept dropping - and sitting! - in the low 40s all night. and kept doing the weird rhythm. her words? "yeah, this is pretty scary." and when a cardiac nurse, who has seen it all, says this is scary...

i just want to cry.

and i can breathe again :)

well, here we are in toronto. we got here shortly after lunch today, and let me tell you, within minutes of arriving, i was feeling better.

once we got settled in a bit, dr russell (whom i adore!) came in to see us. and you should know that, while she and i spoke, she was turned to face his monitor the whole time... the monitor which was showing his heart rate in the high 50s. and doing the beat beat pause thing. yeah.

dr r filled me in on their view of things: at this time, they don't think asher needs to be paced, but they're going to monitor him for a few days, see how he does and figure out exactly what's going on, run some tests, that sort of thing. but we're definitely here for more than a couple days. she used the phrases "over the weekend" and "hopefully you'll be home by the first of april." honestly, i'm not looking forward to another loooong admission (we're already at the end of day 8), but they're going to take this time to come up with a good plan which will address all of asher's new little quirks.

and this is all absolutely wonderful, if you ask me!

and i already have a pile of information about arrhythmia and such in asher's room as i type this, and i'm going to read through it tonight. surprised?

oh! and you might like to know (at least those of you who will understand this tidbit), that asher's sats this afternoon/evening were - sit down before you read this - 96 to 98%!!!!!!!!!!!!!!!!!!!!!!!!!! for those of you who don't understand that... THAT'S NORMAL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! mind you, his HR is still in the 50s, but at least his sats are spectacular!!! dr caldarone, i think i love you!!!

why haven't i learned anything about electrophysiology yet???? this is beyond me...

beat beat pause beat pause beat beat pause beat pause

and read that at about 52 BPM. that's what he's doing this morning.

and i've discovered that i don't know nearly enough about this stuff. so if anyone reading this has any books about heart rhythms and electrophysiology and ECG and stuff, could i please borrow them? i'm a quick learner, so you'll get them back soon. thanks so much!