i heart our respirologist.

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

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

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

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

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

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

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

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

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

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

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

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

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

so that was our day. :)

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

you are Loved.

it's the afternoon of our resp appointment...

and here i sit, pretty sure of how i actually feel about it all.

i want to cry.

i know we needed to go. something isn't right and it needs to be investigated and what not...

so here's the deal:

it's not asthma.

it's not nothing.

apparently, i "said the right things" and doc believes asher has some kind of chronic bronchitis. the CT will give us a better idea what we're dealing with. then she added, depending on what the CT shows, we may need a bronchioscope. this would involve a camera in his airway and maybe some samples of whatever they find in there.

and for those who are wondering... plastic bronchitis was mentioned and discussed. for now she's calling it possible chronic bronchitis, and we're taking it all one step at a time, but not taking our time. she's definitely on top of this.

pre-admit clinic (when we'll meet with the anaesthetist and give consent) is at the end of july, and the CT is friday, august 12. then we see doc again in clinic on the 16th (that's a tuesday) to discuss what the scan showed.

she also sent home some specimen jars. even though, up until now, asher has been swallowing anything he coughs up, she wants samples of anything he does get out. she's not holding her breath for this, though, since she said that it's not uncommon for kids his age to swallow whatever comes up. even a cast (the little bits produced by PB) would more likely be vomitted out from excessive coughing, rather than to actually be projected with a couple coughs.

i'm not going to lie, i'm scared. i don't really know what i was hoping for today. nothing good could have come from this appointment. (and yes, "it's not respiratory" would not have been good news. because if it's not resp... then what is it?!?!) but "fortunately" it is respiratory.

and i want to cry.

because even "run of the mill" plain ol' chronic bronchitis isn't good for a heart kid... the interactions between the heart and lungs... ugh... let's just say, what happens in one affects the other, and of course, never in a good way...

in the meantime, she put asher on flovent, a steroid inhaler. we're trying it for a month, to see if it will help.

please pray that it helps.

ok, i'm gonna go now... the littlest man remembered that i promised to buy him something if he went to sleep last night and behaved at his appointment this morning. boo!!! haha

ps - for those who want to know: 100.8 cm tall (which explains why he ate as much as he did the other week!), and 15.7 kg. (for the non-metric readers: that's 39.6 inches and 34.6 lbs.) his sats were 95% (the highest they've been in a while!), heart rate was 85 (slightly higher than pacer settings, so that's nice), and BP was 105/53. he was also very active, a nice warm pink colour, and only slightly puffy around his eyes. he didn't cough once. haha but she was happy that he looked so good, because now she knows his norm.

pps - i like our doc. she's very nice, pleasant but takes it all very seriously. easy to talk to, and she really listens, and she's not taking asher for granted. yup, i think this will be very, very good.

ppps - please hold us in the Light, especially me. the last few weeks have been really rough for me, and all of this now isn't helping. i just feel a little sad and overwhelmed and i don't want to lose my baby but for the life of me i can't shake this feeling that we've now started that slow decent toward the end... basically, i don't have a whole lot of hope right now. i'm weepy and tired and scared and lonely, and all of this compounded by the several other stressors i have right now, including much needed repairs on my truck and house, and the lack of funds for either. sorry, just needed to vent... thanks for "listening."

well, what do you know...

yes, yes, it's been over 24 hours since we got home, and i still haven't posted. bad blogger mommy, bad bad blogger mommy. haha

i don't remember mentioning this here, but maybe i did... asher had an appointment in toronto yesterday. echo, ecg, cardiology, and pacemaker clinic. it promised to be a busy and interesting morning.

first up, i met quickly with someone from the CHSS (Congenital Heart Surgeons' Society) for our yearly check-in for the LVOTO (Left Ventricular Outflow Tract Obstruction) study that asher is part of. basically, the CHSS are following kids who, like asher, have issues with blood leaving the left ventricle. quoth i on FB the other day,

i'm amused by the LVOTO study asher is in. hmm... i guess a non-existent left ventricle and absent "outflow tract" would count as an obstruction, right? ROFL (oh, the things i laugh at anymore... LOL)

the study is nothing intrusive. every year i have to fill out a questionnaire and list everything asher's been through in the last year. the CHSS is doing a long-term study, looking at outcomes for kids like asher and others with HLHS and LVOTO defects. (for the record, i enroll asher in every study i'm approached about. selfishly, it's that many more people keeping an eye on my littlest man. but my main reason is this: i believe that we have a responsibility to use everything we have been given - the good and the "bad" - to help others. asher has been given half a heart. and so, when we're appraoched, i enroll him. i pray that the docs and surgeons will find ways to help kids with HLHS and other complex heart defects, so that others will not have to go through what asher has been through. but that's a tale for another day...)

so i met with carol, filled out the form (and noticed how many admissions over the last couple years have been for sepsis... shudder! it's one thing to know, it's a whole other thing to see it written down like that...) and then we went in for the echo.

my mother had come with us. and she was fascinated by the echo, having never seen one before. asher did very well, staying still and quiet for most of it. (and this is why there's a TV in every paeds echo lab. because it's too hard to keep a 4-year-old boy quiet for 45 minutes at a stretch. haha) i watched the echo, too... his heart is so beautiful, so simple, so complex, so scarred, so new... a work of art, truly.

(yes, i do love cardiology. why do you ask?)

then off to the ECG lab. asher put on the leads, with some help from the tech. i looked at the monitor. heart rate: 109 bpm. (remember that number. it's important.) so we got asher to sit still for 10 seconds, the tech printed off the report, and then she asked, still looking at the ECG, "does he have a pacemaker, mom?"

now, some of you might be thinking, "well, duh!!! of course he does!!"... but you should realize, there was no mention of the pacer on the orders. it said, "HLHS." that's it. no mention of the electrophysiological disaster area that is asher's heart. nope. just "HLHS." so she should have had no way of knowing that he had a pacemaker, just by looking at the tracings on her screen.

as i answered, "oh! yeah, he does."... i peaked over her shoulder at the monitor... and saw... a tell-tale spike before the squiggly wave. that spike... is the pacemaker, shocking asher's heart to induce a beat.

remember, asher's heartrate during the ecg was 109.

asher's pacemaker is set at 80.

which means that it should fire when he's beating below 80 bpm, and is supposed to stop pacing when he's over 80.

109 is over 80.

did you catch that??? remember how i've been saying for a while now that there's a problem with his pacemaker? yup. read on, gentle reader, read on.

so we saw dr r, who said that everything looked fine. asher's heart is working well, the muscle is strong and function is good. there is no obvious cause for the fluid retention the other week, but she said that sometimes fontans just need a couple days of diuretics, so it's nothing to be too concerned about. basically, "heart's fine. look elsewhere." no worries, there. kind of a relief.

but i was most looking forward to pacemaker clinic.

and it proved to be interesting, indeed.

we got in to that clinic at 1:00. i spoke with the nurse/tech, outlining my concerns.

• his heart rate went down to 74 and stayed there for quite a while, and he had pain in his chest radiating down his left arm and into his jaw.
• his heart rate, whenever checked, is 100. exactly. every. single. time.
• the pacer spike on the morning's ECG.

she said, "yes, that does seem suspicious, doesn't it?"

she listened!!!!!

so she hooked him up to a monitor, which started showing his current (no pun intended) ECG tracing. "see what i mean?" i exclaimed, "his pulse is 95 and the pacer's firing!"

she looked and was surprised, first, that it would be doing that, and second, that i knew what i was looking at. (she then told me about a new Physician Assistant programme in canada, and she strongly urged me to look into it and specialize in paeds cardio. she even gave me her card so i can let her know if i decide to pursue it, because she's really interested in it, too. but back to asher. haha) she watched the monitor for a moment, waiting to see if it was just a fluke, a momentary firing, or something significant.

it was something significant.

she continued with her pacemaker exam, checking its settings and collecting its data. she showed me that his heart rate is, correctly, just above 80 most of the time, and that his heart rate is elevated appropriately for his age (it looks like it goes up with activity, which is what a heart rate is supposed to do). and she kept looking...

and remembering what i'd said about his heart rate always being 100 whenever it's checked... 

she did a little test.

she unhooked asher from the monitor and took him into the hall. there, she, asher and my mother ran up and down the hall (well, the women ran; asher walked quickly and yelled at them. he was tired and grumpy and wanted to leave). then they came back into the room, and she hooked him back up to the monitor...

and his heart rate was 155, which was

1. appropriate for an active heart rate in a child his age.
2. nearly double the pacemaker's setting.
3. paced.

that's right, you read that correctly.

his heart was beating 155 times per minute, and the pacemaker was prompting the beats.

she went and got the EP fellow.

he looked at the data, and agreed that asher's pacemaker wasn't working the way it's supposed to. "it's too sensitive," he said. so christine fiddled with the settings and made asher's pacemaker work properly.

then she threw in a little bonus: a sleep mode. during the day, asher's pacemaker will keep his heart rate above 80. overnight, from 9:30 to 7:15, it will keep him above 70. when he's sleeping, he doesn't need as many beats, so he can safely go down to 70. this will save the battery, but also allow for better sleep, among other things. 

see, if his pacemaker was keeping his HR artificially high, that could account for a lot of the symptoms asher has been having, including,

• paleness and grey spells
• looking flushed
• irritability
• chest pain
• shortness of breath
• reflux
• difficulty sleeping
• loss of appetite

do those symptoms sound familiar? they are CHF symptoms, but they are also what asher has been experiencing over the last few weeks.

do you realize what all this means?!?!

i texted to some friends,

hey! guess what! the pacer was "too sensitive"!!! so she fixed it! which means... there WAS a problem, it DOESN'T need to be replaced, and i'm NOT insane!!!

honestly, i could have cried. it was such a relief to know that i wasn't imagining things, and that, while it sucks that asher's pacemaker wasn't working properly, it was easily fixed. all it took was for someone to listen to me and take me seriously. rather refreshing, i'll be honest.

now, i just want to make this clear: i really like our cardio in london. she is lovely and caring and talks to me as one mother to another. all rare qualities in a doc, and welcome traits, at that. but all this could have been fixed over a month ago, when i first raised the issue. all it would have taken was for her to take asher for a quick run around the clinic for a couple minutes, and maybe a monitor in the room to hook him up to during the tests. honestly, i'm not sure where this leaves us. i can't afford to leave the london clinic and deal solely with toronto; i just can't. yesterday alone cost me the equivalent of one week's groceries. one day. one week's grocery bill. not do-able in the long run. on the other hand...

toronto listens. toronto looks deeper. toronto fixes things.

oh! and in case you're wondering if, indeed, the pacer was the cause of asher's issues lately...

while i'm not a doctor and have no real medical training, i can tell you that his colour is returning (he was already looking better before we left the hospital yesterday), and he's less irritable and eating more. already. he is refluxing less and as i type this post, he is sleeping comfortably upstairs.

just sayin'.

all in all, it was a good day. a long day, but a productive one. i'm "happy" and asher's feeling better.

so, i want to thank everyone who has been praying for asher and this appointment. your prayers were (and are) very much appreciated. and see? prayer works!

well, it was a day...

so, asher was home from school yesterday, which meant that he and i were going to have a delightful day, just the two of us. oh, i had grand plans. he wanted sushi for lunch, and i was going to spend the afternoon doing laundry and tidying up around here.

the best laid plans... sigh...

so, he was feeling fine in the morning. a little tired, but he hadn't slept overly well on the weekend, due to the diuretics waking him up a few times a night. but other than that, he was fine. chipper, funny, playful, laughing hysterically at treehouse cartoons.

we got dressed and headed out for lunch. we got our sushi, sat down, and started to eat. he ate the rice from a couple rolls, but just kept on talking and playing. (he doesn't eat much, so this wasn't unusual, so i thought nothing of it.) he started talking about some of the things he saw around us, making conversation, and pointing out things he wanted me to notice. so i noticed them.

and then i noticed him.

he was navy blue.

still chatting, but slowly becoming less animated.

and then he started shivering.

i asked him if he was cold and wanted to put his coat on, and he said no.

so i reached across the table and touched his hand

and it was cold.

and i don't mean warm with a hint of cool.

it was just. plain. cold.

i watched him for a moment, thinking (read: hoping) he'd just caught a draft and he'd warm up in a minute.

but then he started getting cranky and tired, and he was still blue and still shivering and still cold to the touch.

so i called our amazing dr b, who is on call, and she sent us to the paeds ward at our local hospital for a sat and blood pressure check.

sats were fine (97%), bp was fine (113/59). and she checked his temp. (by now he was starting to feel a bit warm, but nothing too bad....)

underarm temp was 39.2C (102.5F). 

we went off to dr b's office, where he was very irritable, very lethargic, still pretty warm 20 mins after the tylenol at the hospital), and he was complaining that his pacemaker hurt.

so she checked his pacemaker, and yes, it hurt. and the zipper there, along with his G-tube scar were pink.

they're never pink.

so it was looking like there might be an infection in his pacer site. if that happens, it's bad, because those infections tend to spread quickly and if it gets into the pacer pocket, as you might remember, it's got a highway straight to his heart. we've been through this before, and it wasn't fun, to say the least.

off we went to emerg in london. dr b called cardio and gave them a heads-up. she spoke with the NP who was quite concerned (!!) and said that they would need to do a blood culture, and a urine culture (because it's asher, and he has a long, complicated history. urine cultures are now routine for trips to emerg for him).

we were taken right in, and the doc assessed him. yup, he's sick. so he called cardio.

who sent the resident.

who called cardio.

who came down.

and assessed a sleeping and suddenly febrile asher (as in, 20 minutes earlier he was perfectly fine, playing and sitting at a delightfully normal temp. suddenly, he became flushed and warm and curled up on my lap and fell asleep. all that happened in the space of 5 minutes). his temp was back up to 38.7C (101.6F). cardio poked the pacer site, and asher winced and whined, but did not wake up. asher always wakes up for this sort of thing. the cardio poked his pacer, checked his liver, looked in his ear, so yeah, there were a lot of opportunities for my littlest man to wake up. 

and he didn't.

so cardio ordered an ECG. which asher slept through.

and then we were taken upstairs to the cardio clinic for a quick echo, just to check pump function. asher woke up as i put him on the bed, and i gave him the advil our nurse had provided. cardio gave him a tootsie pop, and did the echo, which was fine. then he gave asher another tootsie pop. and he said, "well, his heart is fine, so i think it's just a virus. you can probably go now, but check what they say in emerg."

the doc came over and said that since the chest and abdominal xrays were fine, and the echo and ecg were fine, we could go.

now, at this point, i was not aware of what the NP had said, but rest assured, when i informed dr b that we were coming home, she said, "did they do bloodwork? how was it?" ummm... "they didn't do any bloodwork."

"WHAT?!?!?!?!?!?!" quoth dr b.

it was ruled viral and we were sent home... without bloodwork. no CBC, no culture. both of which are just standard procedure when asher's in emerg.

now, don't get me wrong. i'm quite happy with them not poking my boy and hurting him like that. he's tired of being poked, and i don't like it, either. but um... bloodwork would have given us some answers.

and because the symptoms came on so quickly...

and that has happened before...

in october 2007, for example, when asher had sepsis...

do you kinda think some bloodwork and maybe a culture would be asking too much??

this morning, asher still has a pretty high fever (39.5C, or 103.1F, which is pretty close to his febrile seizure threshold), but as long as the tylenol is doing its thing, he seems ok. fever comes down (he's still warm but not too bad), and he's in a better mood and tormenting poor little Mouse), so right now i'm not overly concerned. it may, in fact, "just" be viral and he'll pull through in a few days.

but still. an important test was not done.

so, i'll admit, i'm a little torn. cardio checked him out as thoroughly as they can, which frankly, is huge. the NP even said that tests were needed. and i think we're at the point now that when tests like this are ordered, i get a little freaxious.

it's good that they took this seriously and did something, so i'm not complaining about that.

but the bloodwork...

or lack thereof...

that worries me a bit. and frustrates me a lot.

i'm almost to the point of moving to another city so that we're closer to SickKids and another children's hospital. don't worry, there are a lot of things keeping us here, and i have to think about the entire family, not just asher. and our paeds can order bloodwork etc here if she wants and i have no issues driving to toronto for cardio if i have to, so we likely won't be moving any time soon... but the idea is there, and it's being considered. i'm just getting to frustrated here. i don't know what to do, frankly. i just don't know...

nothing good comes from a 4 year old flirt

especially when that 4 year old flirt is asher.

and he's not flirting with anything good.

so, we saw paeds this afternoon. asher has been puffy and pale for the last few days, and pretty short of breath. as in, well nigh gasping for air after walking across a room. nice.

now, the other week i took asher in to see our amazing dr b when asher was puffy. his ear was pink, and his lungs were wet, and his liver was down and actually lower than it's been in a very long time. she called cardio, who said, "as long as he's doing well with his feeds he should be ok." ("feeds"?? is asher a baby???)

this week, asher's liver is still down, his heart rate is 100 (dead-on, as usual... sound paced to anyone else?), tachypnic (breathing fast, like 50 breaths per minute), his liver is still just as far down. he's puffy, pale, tired, not eating much, not peeing as much, sweaty and warm (not feverish), a bit irritable, short of breath, etc etc etc....

oh, yeah. and his legs are puffy.

which they never are.

ever.

ever.

amazing dr b says, "well, asher's definitely flirting with CHF. i'm going to suggest you go to hamilton and spend the weekend at your parents'. that way, if he needs to be seen, you're closer to SickKids emerg."

but, before we left, she decided to call london cardio.

but she called and spoke with the cardio on call. for the record, it's the same doc who has said, "oh yeah, these symptoms (of severe CHF) are normal for this stage," "as long as he's tolerating his feeds, he's fine," and "are you sure he's hypoplastic left?" so you can imagine what i expected.

but what he said was...

wait for it...

"give him some lasix and see how he is on monday."

wha---?!?!?!

this doc, famous for brushing off everything, took this seriously and prescribed a med to deal with it.

oh, wait. some of you might not know what lasix is. it's a diurretic. it's job is to make the patient pee a lot, thereby removing excess fluid from the body. in CHF, the heart doesn't function well enough, so blood doesn't move through the body properly, and fluid leaches out of the blood and accumulates in the tissue, usually around the eyes, fingers/hands, and feet/ankles. this also increases blood pressure, and will cause the heart's function to decrease proportional to the amount of fluid build-up. it's a vicious circle, and lasix (and other diurretics) are designed to stop the cycle. ideally, it stops CHF in its tracks.

sounds good, you say?? well, yes... generally... which is to say, the idea is good, but the proposed med is a no-go for asher. you see, asher has nephrocalcinosis. this means that there is a build-up of calcium in the kidneys, which impairs renal function, which increases blood pressure, decreases heart function, which impairs renal function, which increases blood pressure... yup, another vicious circle. and lasix... causes calcium to build up in the kidneys.

delightful!!

but asher can't have lasix, so so i asked dr b prescribe HCT instead. HCT (hydrochlorothiazide, which i spell out merely to show off, haha) is another diurretic, albeit a milder one than lasix. so instead of one dose, dr b prescribed seven. haha

anyway, there you have it. asher's flirting with congestive heart failure. and i'm going to spend a freaxious weekend watching him and praying that the HCT will handle things and he'll feel better.

that being said... please continue to pray for him. i still have my suspicions about the pacemaker, which was supposed to get checked on wednesday in toronto, but due to horrible weather, we didn't make it. asher and i got stuck overnight in hamilton, actually. but he is still complaining frequently that his heart is "sick" or "hurting" or "feels squeezed," and he was going to tell our toronto cardio this week that he frequently gets a lot of pain in his chest, left arm, neck, shoulder and jaw. he also tells me fairly often that his heart is "burning." this has been mentioned to cardio (london)... and yet, even though they know he doesn't generally reflux anymore unless his heart is doing things it shouldn't... they brushed it off. sigh. i know the reflux will resolve when his heart improves, so i'm not concerned about the reflux itself. it's just frustrating to know that something is wrong and docs don't seem to be listening.

so please pray for me, too. i'm tired, to be honest. the fontan was supposed to be it. it was supposed to usher us into the "promised land," where hearts are stable for a very long time and we can enjoy normal life. granted, he's more stable than he's ever been in the past... but that's not saying much. so i'm tired of all this heart stuff, and asher's tired of all this heart stuff, and i'm feeling burned out, and asher's scared of doctors again.

anyway, there you go. a little update. if anything happens over the weekend, i'll let you know. and when we see a doc next week (still need to reschedule for toronto), whether it's cardio here or there, or paeds, rest assured i'll fill you in on that, too. thanks for the prayers.

well, one year later, here we are...

that's right, folks, today is asher's first "fontanniversary." one year ago today, at exactly this time, asher was in the OR at SickKids, with dr c finishing off asher's new circulation.

one year ago today, dr c said, "hopefully this is the last surgery he ever needs."

i'll give you a moment to stop laughing at the irony... {hums a little tune}

k, so here's where things stand as of today:

i just talked to dr w, and asked her my questions about the pacemaker. and she was a freaxiating font of information. seriously, i kind of have the heebie-jeebies right now, actually. {shudder}

so i asked, "how does the battery have 3 years more life in it now than it did in october?" her answer: "pacers usually underestimate the remaining life at first. but as they're in the patient longer, they collect more data, and can make a better estimate of the power it has left. so it is more accurate now than it was then. but you know, i had the same question when i was doing my training." ok, that makes some sense. (and how cool is that? i officially think like a cardiologist! HAHA)

"ok," i asked, "but it's pacing 88% of the time. so it's firing that often, right?" "yes," she said. "so if it's firing that much more often, why is it that his HR is 100 every time we check his pulse?" "well," she said, "when we check his pulse, he's probably nervous or scared or in some pain, which makes his heart rate go up." ok, we'll go with that (for now). not sure i'm entirely on board with that explanation, but i'll go with it at the moment. beats the alternative. {shrug}

then dr w added, "at some point, once he's more stable, we'll adjust the threshold of the pacemaker, lower the settings to maybe 75 or so. that way we can save the battery. but i don't want to do it now when he's like this. but once he's stable, we'll do that. maybe in a few months."

i told her that he now gets pain in his chest every time he's active. he gets a little edgy and flushed and tells me that his heart hurts. every. single. time. she was quite concerned about this. hence the "unstable" comments.

meantime, she wants us to switch his reflux meds from ranitidine to lansoprazole or something else. she thinks that reflux might account for some of the chest pains. and she just might be right... at least to some extent...

but why is he suddenly refluxing so much? he doesn't have that issue anymore, except in certain situations... hmmm... but nothing is showing up on ECG, echo or chest x-ray... but two years ago, nothing showed up on tests, either...

maybe i'm just paranoid. who knows. it's possible. but for now, i'm just hanging out with my littlest man at home. because, oh yeah, he's afraid to go back to school. last time he was there, he was taken to emerg in an ambulance with chest pain. can you say, PTSD??? not that i blame him...

but i made him pinky swear that he'd go to school tomorrow.

but it'll probably just be for half a day. i'd rather ease him back in than just throw him back in full time.

so there you go. the latest goings-on in asherland.

have a great day!!!! :)

on chest infections and immunology...

i just realized today that the last post here was about asher being sick, and i kind of left you hanging with that. my bad. so here's what you need to know.

he's better now. a few days of antibiotics cleared it up quite nicely, and although he's puffy off and on now, he's much better. so that's good.

and this week was our semi-annual immuno appointment.

i was all set to tell them that there's obviously nothing wrong with his immune system, since he's in school full time and the flu and chest infection were really the only things he's caught, and really, who doesn't get the flu or a chest infection in the winter in ontario, right? so he's fine and we're done, thank-you very much.

anyway, we went for the appointment, and the fellow came in. he asked a lot of questions like "has he had any weird rashes? any skin absesses? how long did it take him to get over the flu? what was the infection treated with? has he had this? has he had that?" oh, and the famous, "have you been to genetics?"

sigh... genetics...

now, immuno has been nagging me about genetics for 3 years now. they are convinced that asher might have DeGeorge Syndrome. i am convinced that he doesn't. wrong kind of heart defect, wrong kind of kidney issues, non-congenital feeding issues, he has chromosome 22q11 (the absence of which is an important marker of DiGeorge), and unless you count severe cuteness as a facial deformity, he doesn't have that issue, either. the only thing that's right is the type of immunedeficiency. so i don't think he has this particular issue. and really, what can genetics do? nothing. so why bother??

but i have tried this argument with them for a couple years now, and they're still nagging about it, so i tried another angle this time.

"well, i'm not currently planning on having anymore kids, so... yeah. we're not going. if i change my mind at any time, then we'll go. but the way things stand right now, i don't really see the point."

"oh. well, if you're not going to have any more kids, then there's really no point. no problem."

then on to the physical exam. he checked asher's ears, nose, and throat. then he laid asher down to check his stomach. he's feeling around and poking around and he says, "does that hurt?" to which asher replies, "nope. it doesn't hurt."

so, curious, i peaked around him and looked where he was checking. and laughed a little bit. and said,

"oh, yeah. i forgot to mention. the hard lump by the scar on his stomach... that's his pacemaker."

"oh, good! i was wondering what that was!"

and we laughed.

well, the fellow and i laughed. asher just laid there and asked about stickers.

so then doc came in. he complimented me on my boots (suede leopard print with 4" heels. yes, i rawk!! haha) and said this,

"well, his lymphocytes are low, but they seem to be working well enough. it could just be that he is at the very bottom end of normal for that, we're not sure. whatever it is, it doesn't seem to be a problem for him right now. but i think we need to continue with yearly monitoring in case it becomes a problem down the road at some point. how does that sound?"

what can i say? i agreed to that. because he actually gave me some information that i can use. for three years now it's been, "i dunno. see you in six months." instead, he told me the situation, and recommended yearly monitoring. i can live with that.

so now i have to find a planner for 2012, and learn what i can about lymphocytes. fun times! haha

and now for something completely different...

no goofiness or reflections today, i'm afraid. sigh...

for the last few days, asher's been coughing pretty badly. wet and crackly, and he's been pale, but it wasn't too serious. just a cough. i figured it was a little cold and it would go away.

it didn't.

in fact, it got worse.

today is his second day home from school. he hasn't been able to get a good sleep for the last couple nights, his heart has been hurting/burning, and he's very snuggly and cranky.

today, he was also puffy and blue.

delightful.

so, we went to see dr b this morning. at first, asher didn't want to go, but wanted to see his BFF B at the hospital. then he wanted to see dr w. i had to literally pull him into dr b's clinic. sigh...

but once she came in to see him, he answered all her questions and breathed deeply and coughed when she told him to, and in the end, he was diagnosed with

a nasty chest infection.

she put him on amoxil for 10 days (anyone else would have gotten 7 days, but it's asher, so it's 10). i'll be getting that filled while i'm at work this evening, and we'll get him all fixed up and better for his immunology appointment next week.

(oh, yeah. we see immuno at sick kids next wednesday. i'm not expecting anything to come of it. in fact, i hope they'll just discharge us, since if he truly were immuno-compromised, he would have gotten way sicker way more often since starting school. but that's just my opinion here.)

anyway, right now he's lounging on the couch with his transformers pillow, monkey blanket and Chickie. he's pretty blue and puffy and short of breath right now...

ugh. i hate it when he's like this.

please pray/cross crossables/send good vibes that the antibiotics will do the trick and he'll be back to his usual spunky self in no time, with no nasty complications or trips to emerg/cardio. if anything does happen, though, rest assured, i'll let you know.

would i have named my son *asher* if i ever thought he'd turn the colour of *ash*?

sigh...

that's right, folks. asher is, as i type this post, sleeping.

and asher is, as i type this post, grey.

he's not distressed or anything. in fact, his cheeks are nice and rosy and pink.

but the rest of his face...

nose, forehead, around his mouth...

grey.

and he has been for about 40 minutes now.

the first couple times i checked on him, i turned the light on in his room, and he didn't move. this time, i turned on the light and moved his arm off his face, and he grumbled and turned onto his back. so he can be roused, so that's a good sign.

but still...

he's grey.

but that's his only symptom.

{calls amazing dr b}

k, so it is now about 20 minutes after i started typing this post. i have (if you were paying attention, haha) called dr b.

some quotes from the conversation:

"your instincts aren't usually wrong, heather." "yes, i know..."

if you're concerned enough to call me, you're concerned enough to take him in.

k, i'm gonna say, wake him up, and if he pinks up, then he's probably ok. if he doesn't pink up when you wake him, you're gonna have to take him in.

so, while still on the phone with dr b, i checked on asher again. and he was pink...er. still a bit grey-ish, but not like earlier. so i (probably) won't be taking him in tonight.

that being said, i have to pop up to cardio on monday to return the holter. and i'm going to mention to someone that he was grey tonight. of course, dr w won't be in the clinic on monday, so pray/send vibes/cross crossables that dr r will be around, and i can mention it to him.

sigh.

a quick update about clinic yesterday...

clinic was actually pretty good, i'd say.

sorry, i just don't have a long post in me tonight. so i'm just going to do the coles notes version of the day, and you can fill in any jokes and wisecracks you want.

• sats: 95-96%; BP was normal; HR was 110
• height: 97 cm (3'2" - he's almost an inch taller since october!!!); weight: 15.4 kg (approx 34 lbs)
• ECG looked fine
• asher's re-obsessed with Thomas trains.
• asher greeted his cardio with "guten tag," which amused and delighted her. see? she's lovely. :)
• resident was inappropriately dressed, and put things like puffiness in quotes... because it's not a medical term. but i had to explain the difference between swelling and puffiness for her. (for non-medi/heart types... one is an accumulation of blood to an injury/infection site, the other is the result of fluid build-up caused by insufficient heart function.)
• dr w agreed that asher's latest symptoms are the cardiac after-effects of a virus, but as long as they resolve themselves in due course, he's ok. 
• asher was not puffy, as he had been on monday when dr w booked the appointment. of course. haha but this also means that his symptoms are resolving themselves in due course, so he's ok.
• dr w agreed with dr b's decision to prescribe ranitidine to treat the reflux.
• dr w was concerned about asher's report of his "heart going really fast" the other day. so she ordered a holter, and we'll see from that if his pacemaker needs to be adjusted.
• dr w discontinued the aspirin. she said that, because of his age and the fact that he's in school, he has a higher risk of a bleed from getting bumped, than he does of developing a blood clot from being sedentary. we will probably have to resume bloodthinners when he's older, but for now, he doesn't need to be on aspirin.
• discontinuing the aspirin is a major milestone for asher. he's not on any cardiac meds anymore!!!!!!

sorry that this wasn't up to my usual standards of quality writing and verbose-ness (haha, i just made up a word because i couldn't think of the word meaning "wordy" HAHA). i've got other things on my mind tonight...

don't worry... there's another post in the offing as i type...

on this day in history...

i took asher to our local emerg. he was having trouble breathing. i thought he would just need some oxygen and then he'd come home.

instead, we were sent to london.

where dr pepelassis (aka, "pepy") checked out asher's heart.

"usually babies with this condition," he said, semi-panicked, "are operated on right after birth. he's eight days old now. it's too late. he's going to die. you have to be strong now, so pull yourself together, and come back and say your good-byes."

he called SickKids anyway, and they told him that if he could get asher stable enough for transport, that they would take him and "see if they can try anything."

in toronto, i was drawn a picture of a normal heart.

and then i was drawn a picture of asher's heart.

and there is a lot of stuff missing in asher's heart.

on this day four years ago, the cardiologist in toronto went over our options:

1. 3 open heart surgeries. one right now, one at six months, one at two years.
2. very new (read: partially experimental) but gentle closed heart surgery now, massive open heart surgery at six months, and open heart again at 2 years.
3. transplant. meaning weeks or months on by-pass, and the risk that asher might not live long enough to get the new heart.
4. comfort care. (for those unfamiliar with the term, it's pain management and nothing else.)

that was four years ago.

and right now, as i type this, asher is watching Roly Poly Olie, and drinking juice with his fingers. he sticks his hand into the cup, then sucks (noisily, i might add) the juice off his fingers.

it's been a long four years, to say the least.

i'm hoping we'll have many, many more.

and today is another special anniversary. one of asher's little heart buddies, Yale, is celebrating his heart anniversary today. two years ago, Yale was given his new heart. and believe me when i say, he hasn't looked back!!

so congratulations, yale and family. :) and thank-You, God, for saving and preserving my littlest man's life over the last four years. 

66 years ago today...

on 29 November, 1944, Dr Alfred Blalock, Dr Helen Taussig (yes, a woman) and Vivien Thomas (a black man) performed the first Blalock-Taussig shunt operation at Johns Hopkins in Baltimore.

the shunt was designed to help "blue babies," wee ones with a CHD known as Tetralogy of Fallot. in ToF, there are several issues:

1. pulmonary stenosis. the pulmonary artery carries de-oxygenated (blue) blood from the right side of the heart to the lungs. with PS, the opening to that artery is too small and restricts blood flow to the lungs.
2. VSD, a hole between the two pumping chambers. this allows blue blood to pass over to the left side of the heart and mix with the red blood and travel out to the body.
3. right ventricular hypertrophy. the right ventricle has to work harder than usual to overcompensate for the PS and VSD.
4. overriding aorta. this exacerbates the VSD and allows more blue and red blood to mix and travel to the body.

at this point in history, in 1944, there was no open heart surgery for these babies yet... that would come much later. and actually, up until this day, there was nothing at all that could be done for babies with severely wonky hearts. nothing. this procedure was the first of its kind, anywhere, ever. 

if you're interested in learning more about the surgery, including how to do it, click here. this will take you to a site which will teach you about ToF, and you can do the surgery yourself, in a cyberish kind of way. it's amazing, it really is!

this procedure is not what Asher had. Asher had a modified (or reverse) BT shunt, which went from his MPA (main pulmonary artery, right before it branches off to the lungs) to his proximal innominate artery, allowing most of the blood to by-pass his lungs and go out to his body.

but without this first procedure 66 years ago, Asher would never have survived beyond his diagnosis. there would have been no hope for him at all. and yet...

here he is.

almost 4.

(and for the record, i know of many people with ToF. you can click on Anniek's blog on the sidebar to read her story. and in addition to Anniek, there are two people at my church with tetralogy: a father and son. yes, the father has it, too. i've met him. he's an adult, and if you met him, you'd never know he has a wonky heart. simply amazing. and when you consider that these people would not be here today without this first surgery so very long ago... awesome. just awesome.)

WHA-?!?!

today we went for our regularly-scheduled cardio appointment in london. and all in all, it was... um... interesting. but in a good way, don't worry. {wink}

first, we went in for the pacemaker check. no problems there. awesome.

then, the ECG. which asher did himself. he got the leads, attached the stickies, and put them all on his chest, legs and arms. sure, the tech told him where to put them, but he put them on. you know you spend a lot of time in hospitals when... haha

then the fellow came in. he's working toward becoming an adult cardiologist, but to become an adult cardio, you have to do a two-month rotation in paeds because, in the words of a fellow from a couple years ago, "some of these kids grow up, and we need to be prepared for when they do." frankly, i prefer buffo's explanation: "if neither of us [paeds cardios] is available, the adult docs can come and check him out, and they'll have some idea of what they're dealing with." a much more palatable explanation, if you ask me (and yes, i'm choosing to ignore the idea of all paeds cardios being unavailable). anyway, dr chew asked a bunch of questions and listened to some of my answers, and listened to asher. and before you ask, yes, he heard the murmur, but said that it wasn't very loud, so it's not too concerning. um, ok... anyhoo...

then he went and got dr w, our cardiologist. she came in and checked asher out, and said that he looks pretty good, and since HCT is for failure, she's comfortable with dr russell's decision to stop it. i told her that dr russell had said that, if he got too puffy without it, he might be one of those kids who needs it every other day, and that since asher, having missed two doses, is now getting pretty puffy, i'm going to do the every-other-day thing. so she looked at him and said, "yes, his eyes are looking a little puffy." and she didn't argue with my dosing decision, so i'm going ahead with it.

and let's see, what else?... hmm... i was sure there was something else to report about the appointment... what was it again?... oh, yes, i remember!

ASHER DOESN'T NEED TO GO BACK FOR SIX MONTHS!!!!!!!!

this, my friends, doesn't happen in asherland... at least not in cardio province. and yet... here we are!!!!! is anyone else doing a happy dance right now, or is it just me??

so we got back in april for an ECG, echo, pacemaker check, and holter. ugh, the holter. the bane of pacer-life. i hate holters. pain in the arse, they are. but, ah well. so it goes. i do what i have to do, and hey, it's not for six more months, so really, WHO CARES?!?!?!

after the appointment, i had to rush to make it to an appointment for myself. i've been having some health issues of my own lately (nothing too major, but needs to be dealt with... blerg). so we flew back to st thomas, i dropped asher off at his dad's, and raced to my appointment. i got there a few minutes late, and then waited for the doc to arrive. once she did, she was very nice, and well, i'm heading back to her office on tuesday for an ultrasound, bloodwork results, and hopefully, a plan.

so when you're praying next time (and whenever you think about it thereafter), please thank God that asher has improved so much in just a few days. sure, the murmur is still there, but cardio isn't concerned about it, so that's wonderful! and then, when you're done with that, please pray for me. i'll admit, i'm a little freaked out right now, so please pray that i'll have peace and that doc will have some answers for me. also, please continue for my friend shawna, who is having some pretty major health issues in and of themselves, but now she has also been diagnosed with some complications with her pregnancy. please, please pray for her and the baby. it's a scary situation, so please pray for her, the docs, her husband and their children, including the one on the way. thank-you.

the update you've all been waiting for

ok, so we went to cardio in toronto today. here's the low-down:

1. the echo showed nothing wrong, other than some minor backflow through the arch (some blood flowing the wrong way through his aortic arch, so... back toward the heart instead of out to the body). but it's only minor so she's not concerned. basically, the symptoms do not appear to be caused by his heart.
2. asher now weighs in at a whopping 14.6 kg (32 lbs). this is roughly a 16% gain over his weight in may. to give you some perspective, this would be proportionally the same as if i had gained approximately 30lbs in the same period (which, thankfully, i didn't). when i mentioned the weight gain to dr russell, she was very concerned. she recognizes that he needed to gain it, and he is now nicely proportioned between height and weight, but she said that we can now back off on the uber high fat diet, and just go with "a little higher fat than normal." because this kind of weight gain over a longer period of time will not be good for his heart.
3. asher's bloodwork showed that his liver is doing well, and his protein is good, so that's a good thing. but... the results showed that he's on the dry side (which he often is). so she stopped the HCT (the diurretic) for now, adding that if he begins to get really puffy, that he probably only needs it every other day instead of daily. we will discuss that with london cardio on thursday. i already know that nephro (who put him on it originally) is comfortable with stopping it, but he left it up to cardio. so it looks like everyone is on board with that.
4. i told her about asher's newest diagnosis (epilepsy) and all the seizures he has (average of 2-3 absence seizures a day). she was very concerned about this. she asked a lot of questions about why we had consulted neuro, so i told her about the seizures with fever. she told me that, if neuro wants to medicate asher for the seizures, that they should feel free to do that.
5. since any and all cardiac issues have been ruled out, she said that asher's paediatrician should now "feel free" to investigate "general paediatric issues." so, basically, we have ruled out the heart, but other than that, she doesn't know. but it's not heart.

basically, we covered a lot of ground in just a few minutes. and given that asher and i hit the road just after 4am, it was a very long day today. i am exhausted now. asher got to nap all the way home (no, i'm not bitter or anything). but thank-you to my wonderful friend (and asher's new girlfriend) diane for having lunch with us. definitely a good end to the appointment. 

the plan for tomorrow

the cardiology clinic at SickKids called this morning, and i now have the times for our appointment.

we have to be at bloodwork for 8am (it's usually very busy there, with a long wait, so we need to get there bright and early). after that, we're scheduled for an echo at 9. once that's done, we'll likely have an ECG and then we'll see dr russell.

all this means... asher and i will be hitting the road around 4am. (in case you're wondering why we wouldn't just stay in hamilton overnight... i'm weird. i love driving the 401 in the wee hours.)

i will update tomorrow with all the details. and yes, i'm packing a bag. just in case. last time we had one of these "emergency" appointments, we were admitted, and i believe it's because i hadn't packed anything. haha so we're warding off the "admission spirits" by coming prepared. haha (ok, i'm not actually a superstitious person. but our pattern has been that, when i don't pack anything, we get admitted. when i come prepared for a few days' stay, they send us home. every time. haha) so please pray for us, that we will travel safely, that the appointment will go smoothly, and that asher will show these symptoms. or, if you're more inclined, you can feel free to pray that asher be healed. but since i don't believe that that is the miracle God will do/is doing with asher, i will be praying that he has these symptoms tomorrow.

he actually seems to be getting worse as time goes on. he doesn't have the usual amount of energy, and hokey doodle is he ever irritable!!! (he's usually very laid back and happy, so this is a huge change and pretty difficult, stressful and heartbreaking to deal with.) he's also still puffy and pale. so please pray for us tomorrow.

and some other prayer requests:

please pray for my friend shawna. right now she is on her way to mt sinai hospital for the second day in a row with some very concerning symptoms. she has a lot of health problems at the moment, and what she's facing is terrifying. my heart is just breaking for her. so please pray for her, and for the doctors, and for her family (she has 7 children at home). things are not looking good on a number of fronts for her right now. frankly, i'm really scared for her. i'll keep you updated on her, as well.

a lovely little baby hannah, whose parents i met at SickKids in the spring. hannah has TGA and a couple other heart defects, and well, she's not doing very well at the moment. she has also been in and out of emerg over the last week or so, with some very concerning symptoms. they expect that she will need another surgery in the near future, but they're waiting for it to be absolutely urgent. it's a stressful, frustrating, freaxiating thing to have to watch your baby's health deteriorate before they operate, so please pray for rachel and nick (hannah's dad). please also pray pray pray for hannah.

i think that's about it for now.

can you believe, we actually got to see a couple DOCTORS this weekend!!

so, yesterday, asher wasn't doing so well again. after some humming and hawing (did i spell that right?) yesterday, i took him in to emerg in london.

they took us into Ambulatory Care (a rarity in asherland... lately we've been in J-bed. sometimes i think they should just put up a sign that says "asher's bed"... oh, wait, that would imply we're there all the time. so... scratch that). after going through asher's whole medical history with the med student (so it's a miracle we're home already, haha), dr helleman came over. i have to say, i really like her. first off, she loves asher. second, she's awesome. when asher comes in, she listens to my concerns, and she is very careful to investigate fully. and she's not afraid to consult cardio, if need be. (translation: she calls them every time she sees asher.)

during her assessment, she heard the murmur. it concerned her a bit, since she remembers distinctly not hearing it when she saw us in august. so she ordered a chest x-ray and ECG, both of which were "unremarkable." then she called the on-call cardiologist, who was, you may recall, dr rauch.

uh-oh, i thought. this could be weird. i hope he's cool.


turns out, he was. he told her that he wanted to see asher and do an echo today, so we were to meet him outside the clinic at noon.

cut to today. asher slept in and wasn't in the best of moods, but he was tolerable. so off we went to church. he was looking ok, and i wasn't too concerned about him, so i put him in his class, but told them what was going on and to call me if he did anything "asher-ish."

i didn't get called. phew!

after church, however, he was pretty tired. usually he's running all over the church after sunday school, because he has a great time and is so energized by the crafts and singing and playing with the other kids. today, however, he walked, following at a distance, and complaining because we were going too fast.

off we went to the hospital. (good to know: it only takes about 7 minutes to get from the church to the hospital. believe me, i was watching the clock.) we parked across the street, where parking is free. {wink} but that meant that we had to walk across the street. sigh. i should have known, asher cried and wanted to be carried the whole way. i compromised with him, and carried him in the intersections. (he's now up to 15.2 kg - 33 lbs... ish... i'm metric only with this kid, so i'm guessing at the conversion there - and i was in high heels, so there was no way i could carry him the whole way.) but wow! was he cranky!!! and puffy, actually. those eyes just aren't right. that has nothing to do with the fatigue and irritability, but it's worth noting, so there you go.

but we got into the hospital, and the kids automatically got themselves some hand sanitizer, and asher flipped out on me because he wanted to get his own without help. of course, he had trouble with that, and he got more frustrated, and then it was foamy, which he didn't like, so that was another tantrum.

we got to the clinic a couple minutes early, so the kids sat and chatted (asher complained but stopped crying, though he did snap at bram a couple times), and i pondered the interaction of hypoglycemia, heart function and seizures. sadly, i'm not even joking. i know, i'm a nerd. haha

dr rauch arrived and chatted with the kids for a couple minutes, introduced himself to all of them, and let us into the clinic. he took asher into the echo lab. asher co-operated and laid down on the bed. he wasn't thrilled, but he was calm. he wanted to help with the echo, and dr rauch joked that maybe when asher's a bit older, he can do his own echo and doc will have coffee with me. haha but the echo went well, asher was very patient, and doc explained to me everything that he was looking at. honestly, i don't remember the last time anyone ever did that, probably not since the first few post-hybrid echoes with pepy and buffo. so things look a lot different in there now.

at one point, i made some comment like, "i told dr welisch we wouldn't make it till our next appointment." and he said, "when are you here next?" "thursday," i told him. "but you're going to sick kids on tuesday, right?" "um... yes." now, here's what's interesting about that. our paeds didn't tell him that. i didn't tell him that. and i don't remember telling dr helleman about that last night. so... um... how does he know that?? my theory is that dr russell called and told him, since SickKids is much better at keeping london in the loop than london is at keeping SickKids in the loop. not that it really matters, i'm just saying...

anyway, when he was done, he told me what he thought. he couldn't see anything on the echo that could be causing all the symptoms. asher's liver seemed fine, and his urine last night showed nothing out of the ordinary (urea and creatinine were fine, no infection, and he's not leaking protein there). he also told me that sometimes fontans can leak protein through their gut. "ah, PLE," i said, "trust me, i'd be telling a cardiologist if asher had diarrhea." and since asher is pooping just fine (c'mon, you know you were wondering. haha), PLE is not a problem, either. "basically," quothe the doc, "i don't know. but we've eliminated some big things, so that's good."

so, a lot of time in the hospital to hear, "i don't know." sigh.

i'm now feeling much more relaxed going into our appointment in toronto on tuesday. even if dr russell doesn't find anything on the echo, i am confident that she will continue to investigate. she knows us both well enough by now to know that, when i say there's a problem... it means there's a problem.

the thing is... this is all so familiar. this has happened before, and london saw nothing on the echo, and dr russell saw nothing on the echo... but she believed me and admitted asher, and ended up doing a cath. and they found problems with function and pressures. nice.

but like i said, i'm feeling better about all this now. last night, i'll admit, i was pretty upset about all of this. i was scared and crying... yeah, it wasn't pretty. but i prayed some, and this afternoon, i'm feeling better. asher's not, mind you, but i am. so, at least i can help him through the next little while, and advocate effectively for him.

so there's the update for today. i'm hoping there won't be anything else to report until tuesday. talk to you later!

an email i just sent to someone...

hi,

i was journaling tonight, and got to thinking (as one is wont to do while journaling, i suppose), and i wanted to thank you for writing this book and for telling our story.

a couple weeks before the fontan (so, mid-february), i asked God for the chance to tell asher's story. now, i don't know where you stand with the whole God thing, but i believe. and frankly, as soon as dr c mentioned this project to me post-op, standing there in the hall on the 2nd floor, iknew this was what i had asked for. (go ahead and ask him how i responded. i guarantee it wasn't what he was expecting!) as it is, asher's blog is read all over the world (literally, the only continent unaccounted for in asher's readership is antarctica! how cool is that?!), but this project is just amazing. do you realize what this will do for heart parents???? they won't be alone anymore! they will know, and i mean know that they are not the only ones whose kid has a heart this wonky, and that knowledge brings more comfort and encouragement and life and peace and breath and light than you can even imagine! and healthy-heart people will learn to cherish and embrace and love every breath, every heartbeat. my desire for this project is that people will learn that every heartbeat is an absolute gift. no, wait. that's not enough. it's a miracle.

do you remember when we met? we were standing in the atrium near starbucks, and you asked how asher was doing. i said something about his heart beating only 30 times per minute. that is not only really slow, that is nearly stopped. one beat every two seconds. count it out. i'll wait.... [hums a little tune] ... for perspective, put your fingers on your stomach, just below your ribs, and press in slightly. you'll feel your heartbeat. you'll notice that it's going faster than asher's was when you and i met. and you are an adult, so your heart rate should be slower than a 3-year-old's. but here is what that episode with my littlest man taught me:

there is a miracle every second. the trick is to look for it. but if you look for it wholeheartedly, you will find it. today, i can look at asher, and see with my own eyes 80 miracles in any given minute. literally, 80 tiny... and astonishingly huge!.. miracles every. single. minute.

and that is what i want people to take away from this story. that miracles happen. all the time. sure, it may not be those big "why does this child have a left ventricle all of a sudden????" kind of miracles. maybe those miracles happen, but then they're done. it's the smaller, quieter miracles that break your heart, heal your heart, take your breath away, inspire you to breathe again... and teach you to live.

and every split second of asher's life is one of those quiet, simple, overlooked miracles. they are overlooked by so many people, including me on occasion, even now. but that, the overlooked-ness of it all, is a miracle. i can take every heartbeat for granted. because just a few short months ago, i was holding my breath waiting for the next heartbeat. every heartbeat mattered. sure, they still do... but they're even more beautiful now because i don't have to think about them. "what's his pulse?" "i dunno, but if he's still breathing, it's at least 80." it is only when you have lived through the terror of uncertainty that the unknowing becomes beautiful.

and asher's heart is now even more beautiful to me than i ever imagined possible. and that keeps me going. every day.

and that knowledge, that there is a little boy out there who has fought tooth and nail till he was blue (or grey) in the face to make it through all that shit... that is going to inspire. that is a gift that none of us can even comprehend yet. and that is what this book will give to someone. 

so, thank-you. it's amazing what you're doing with asher's story. just the fact that you're telling it, or even, now that i think about this, that you are aware of him at all, is a gift. and this is going to enrich some poor, freaxious mother's life, and make her heart go up in ways that neither of us can ever know.

thank-you. truly, from the bottom of my heart, thank-you.

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! :)

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.