Wednesday, March 30, 2011

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...

Monday, March 28, 2011

quite an interesting day today...

yup, quite an interesting day, indeed...

i took asher to see our amazing dr b this afternoon. turns out, asher has lost all the extra fluid weight, and is back down to his 15 kg (33 lbs), where he belongs. the puffiness is gone, the sweating is gone, the warmth is gone, the shortness of breath is gone. his colour is back, his energy is back. his liver is back up where it should be. all of this means

no more failure!!!!

one little lingering issue to keep an eye on, however. asher's blood pressure is quite low. his norm is around 120/80, but this afternoon it was 86/54. she called dr russell in toronto, and we're going back to paeds on thursday for follow-up.

we also have a date for our rescheduled appointment in toronto. next wednesday (april 6) we will be heading off to toronto. we'll meet with someone from the Congenital Heart Surgeons' Society to fill out some forms for the LVOTO (left ventricular outflow tract obstruction) study, then off to the echo lab. we'll see dr russell, then down the hall to the pacemaker clinic. a long morning, but hopefully it will be productive.

and now...

for the bad news...

we found out today that our favourite cardiologist in london

is moving back to germany.

i don't quite have words right now, so i'll leave it at that for now. i'll comment when i have something useful to say.

anyhoo, that's the day. thank-you all so much for your prayers over the weekend. as you can see, prayer works!!! :)

Sunday, March 27, 2011

surrendering is NOT the same as giving up.

oh, my sweet, sweet little asher...

by now you probably know that, if he's not already failing, he's at least "flirting" with it.

and as you can probably imagine, i hate it.

i love my littlest man. but just last month i was reminded of something:

kids with HLHS have a 70% chance of surviving to 5 years.

and asher is already 4.

now, i know, statistics are not a death sentence. i know. i really do. but...

asher's HLHS is pretty much as bad as it gets. and he "should" be dead 15 times by now.

the other day, when we went to see our amazing dr b, i already knew what she was going to say. i was hoping for an ear infection or bronchitis or a nasty cold or something, but i knew. i memorized that list of symptoms when asher was four weeks old. i know what to look for, and i knew what i was looking at.

i also know about the possible ischemia, i'm watching and waiting for a heart attack, i'm pretty sure his pacemaker isn't working properly.

but the moment dr b uttered the words "congestive heart failure," it was as if someone kicked me in the stomach. i wanted to vomit. i wanted to cry. and i was just. so. tired.

call me crazy, but i don't want my precious little man to die. i don't. and i can guarantee that anyone who has met him feels the same way. he's just too amazing, too sweet, too funny, too loving, too.... asher-ish for that. i want him to grow up and grow old and have a dozen healthy kids and a hundred grandkids and a thousand great-grandkids.

but that 30% haunts me...

and yet, i know that God specifically designed asher's heart this way. i don't know why, but i know that He did.

so how do i reconcile this mother-love/fierce determination to see my child grow up, with God's will?

um... i don't know.

quite a while back, i was in a small group. and we were talking about surrender. namely, surrendering our baggage to God. here is what i said:
my son has half a heart. he's been through too many surgeries, too many infections, too many hospital admissions. he has too many doctors. and yet, i know that this is God's plan for him. and so, because of that, i have surrendered asher to Him. whatever He chooses to do, whether it's to heal asher completely, whether it's to take him from me, whether it's to keep him here and not take away this illness, i have accepted and will continue to accept that that is God's will. but in the meantime, even while i wait to find out what God has planned, i have to deal with all of this. i have to take asher to appointments. i have to watch for symptoms. i have to sign consent forms. i have to sit with him in ICU. i have to feed him according to his special dietary needs. i have to deal with his condition now, even though i've handed him over to God.
and that's that, i guess. i've surrendered asher to his Maker. thankfully, his Maker has decided that asher will stick around, though for how long is anyone's guess. but i still have to deal with all this crap.

i read something interesting today:
faith isn't necessary when we know the outcome. faith is what gets us through the uncertainty.
yes, i'm exhausted. yes, i am completely sick and tired of heart stuff. yes, i hate it.

no, i don't know how long he'll be here. no, i don't know if he'll ever get a new heart. no, i don't know what's going on in that wonky little heart of his. no, i don't know if he'll pull through this latest bout of failure-ish. no, i don't know how bad it will get, or if the few doses of HCT will do the trick.

i just. don't. know.

and i hate that.


when i stop, and i mean

when i stop

and listen

and look

God is there, doing something. i don't know what He's doing, but He's in there.

and i'm ok with that.


but i accept that God sees the big picture and i don't and He knows what's best and i don't and He loves asher waaaaay more than even i ever could.

if He chooses to take asher at some point, i'll hate it. but i'll accept it. i'll weep and sleep and grieve and mourn and stare off into space because that's the only thing i'll be capable of doing (can you tell i've mourned him a few times already, that i'd have an idea of what i'll be like?)...

being asher's mother isn't easy. being asher isn't easy. but you know what?

every night, when asher says his prayers, he asks God to "make me feel much better." how does this 4-year old know to ask God to do that? how does he know that God can do that? and how does he not stop asking for relief despite the fact that it doesn't come and he still has chest pain every day and he still gets tired and short of breath and overloaded with fluid and he still can't keep up with blithe and bram?

somewhere along the way, asher has learned to trust God.

and somewhere along the way, asher has learned to wait patiently for God.

and it still hurts and he's still scared and he's still going for therapy on tuesday and he's still sick...

and he's still trusting God and waiting for God and looking to God for what he can't do himself.

i'll admit, sometimes i get caught up in the horror of HLHS and CHF. sometimes i mourn my child who is still here but may not be for much longer. sometimes i just hold my breath waiting for God to do something, anything.

but most of the time, i just continue to watch for symptoms and take him to the docs and give him his meds and feed him fatty foods and keep on keepin' on...

and i wait for God.

and you know what they say about waiting for God:
But those who trust in the Lord will find new strength. they will soar high on wings like eagles. they will run and not grow weary. they will walk and not faint.  (isaiah 40:31)

last night i just wanted to cry when i thought about this latest bout of failure. and i almost cried when i told my friend about it this morning at church. but i also know that God is in control. God has a plan. and God hasn't forgotten about us. so we're just waiting for Him.

and tonight, sure, i still want to cry and vomit when i think about it all. but i'm not so tired. and i remembered to pack his meds tonight when he went to his dad's. and i'm going to make an appointment for him to see paeds again, and i'm going to take him for play therapy on tuesday. we're going to keep going, because we're waiting for God and trusting God, and that gives us the strength we need to get through today. today we ran and didn't grow weary. tomorrow we may walk and not faint. our pace isn't the fastest and we don't actually know where we're going, but we'll just keep on going.

and for today, that's enough.

Saturday, March 26, 2011

oops, my bad...

i realized this morning that i forgot a couple details last night.

first of all, asher's weight. last week, asher weighed 15.2 kg (approx 33 lbs). yesterday, he weighed in at 16.9 kg (approx 37 lbs). that's right, in about 10 days, asher gained about 10% of his body weight.

sounds like a growth spurt...

until you remember that his legs were puffy...

and by that i mean, dr b was poking dents in his shins. go ahead, try that on yourself. i'm willing to bet you can't do it.

that's because you don't have edema. puffiness. fluid retention.

caused by congestive heart failure.

i'm really tired of all this. i really am.

Friday, March 25, 2011

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.



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."


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.


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.

Monday, March 14, 2011


a little bit about asher first, then moving on to bigger, more important things...

asher's amazing paeds dr b talked to dr caldarone the other day. she asked him whether or not asher's chest pains could, in fact, be growing pains. dr b figures, he put all that stuff in there, so he should know, right?

he said, "have they looked into the possibility of ischemia (lack of blood/oxygen to the heart muscle)?"

"they checked his CAs in an echo, but that only shows the beginning of the vessels, so it's not conclusive. and since these pains only happen when he's active, it's got me wondering... but doc said they can't do a stess test on a 4-year old..."

"but they can do a stress echo. that's easy to do." (a stress echo is where they give the patient a dose of dobutamine to increase the heart rate, replicating the cardiac effects of exercise, and they do the echo/US to see how the heart functions under stress.)

so dr b is going to be speaking with london and yes, dropping names (she asked dr c, "can i tell them i talked to you?" and he was cool with that) and asking about a stress echo. from what i have seen of london, i don't think they like to do DSEs (dobutamine stress echo), but i could be wrong, but we may be facing a trip to toronto's clinic.

dr caldarone pointed about that it is not uncommon for fontans to develop ischemia, which is why it came to his mind right away and he is concerned. ischemia can be asymptomatic (no symptoms), or it can lead to things like chest pains and heart attacks and all kinds of things.

one more quick thing about asher: i will be taking him in for another session of play therapy this week. since he was taken to emerg from school the other week, he has regressed in a few ways and has decided that he just wants to be a little boy forever because he's scared of growing up. just a month ago he was all about being a big boy, but now... not so much. i'm just waiting for an appointment time.

but in happy asher news, he is now working on potty training. he's actually out of diapers now. (ok, it all started because i ran out of diapers and only noticed right at bedtime one night, and since i refuse to take the kids to the store at 8:30 at night, we had to make do.) but he's been in underwear for a little over a week now, and he's doing great!!! he's dry overnight, and he's usually dry all day, with only a few accidents all week. he's actually becoming quite proud of himself!!!

so now that you're caught up on asher, we're switching gears a bit to something far more urgent and important.

Asher's favourite "best," his friend B, is back in hospital. asher and i met B and her mom in hospital last spring, and we have become very close. B is not a heart kid, but is extremely complex and fragile. and this admission... yeah. it's bad. terrifying. i cry whenever i think about what's going on, actually. here is the latest, from her mom's FB status:
It has been a long night - B has not turned the corner yet. I have not seen her blood results yet today, but through the night the bleeding started. I will spare you the gory details, but this is "the" next step in the DIC - the only way to treat it is to eliminate the cause, and that is taking its time. Please continue to pray, cross your crossables, whatever you can do...
if you're interested in reading more, to better understand what is going on, please check out her blog. this is a terrifying admission. right now, Brigid needs all the prayers she can get, as do Allison and the rest of the family, not to mention the docs who are trying to figure out what's going on so they can treat her, and the nurses who are caring for her. please please please pray, send vibes, cross crossables... whatever it is you do, please do it. and please spread the word. this is a wonderful family, a dear friend of mine, a beautiful little girl who is asher's "best," and this is absolutely heartbreaking and terrifying. please pray, spread the word, add them to your prayer lists, your church's prayer chain. thank-you.

i'll try to keep you posted on B. suffice it to say, this illness is not getting better yet. she needs a miracle. thank-you.

Sunday, March 6, 2011

my bad :S

i realized at church today that i had forgotten to update the blog here with some more recent developments. my bad. so here we go...

the other night - thursday, i believe - i was chatting with our amazing paeds dr b. she informed me that she was not overly convinced by london's take on things, and so she called toronto cardio to talk it over with them.

and, it would seem, toronto was very concerned by what they heard.

and, it would seem, toronto wants asher to come to pacemaker clinic in toronto.

because, it would seem, they think there is, in fact, something wrong with asher's pacemaker.

and, it would seem, they are not overly impressed with her idea to lower his pacer setting when he's stable enough. (which, frankly, is fine by me, since she wants to lower it to 75, and asher was having chest pain right around that point, so 80 is quite alright in my books.)

now, i didn't get a chance to call SickKids on friday, so i'll be calling tomorrow, talking it over with them a little further, and setting an appointment date for their pacemaker clinic.

and then i'm going to vomit.

i'm going to be honest here: i want to go with dr w's ideas here. i like the idea of growing pains and more data and asher being worried or stressed somehow when his pulse is checked in clinic.

but... and again, i'm being honest... i'm not entirely convinced. part of me still... doubts, i guess. it's not that i don't trust dr w, because i do. i think she's a great doctor. she cares, she understands that i'm a mom and i'm concerned about my boy. she knows what it's like to be in position. she identifies, understands, cares, listens, explains... everything you could ever want in a cardiologist. except...

ok, i'm going to tell you a little story:

over the last couple weeks, i've been asking asher off and on (mostly when he's becoming flushed and/or grey) how he's feeling. but, in an effort to keep him honest, i'll ask him how he's doing when he looks fine. and once in a while, mostly on a whim (read: when i think of it), i check his pulse.

i did that yesterday, in fact. for no real reason, i sat him on my lap, found his pulse, and counted for a full minute. he was relaxed and calm and happy. no worries. just snuggling quietly with mommy. and his pulse was...

wait for it...


dead on, 100. not 99, not 101. one. hun. dred.

which is, you'll note, exactly his heart rate every time it's checked anymore. every. single. time.

100 bpm.

now, i have some thoughts about this (surprised? haha)... it's really kind of a hunch... but it does involve the pacemaker not working properly. i'm hoping i'm wrong. i really hope i'm wrong.

but the freaxious feeling in the pit of my stomach just won't go away...

i'll keep you posted. and i promise i'll do a better job over the coming days.

meanwhile, please pray for us. please pray for asher, that he will be ok. he's still having chest pain every day. his energy is still up, but the pains come on every time he's active. so please pray for him. also, please pray for me. like i said, i have this knot of freaxia in my gut that just won't go away. pleasse pray for peace for me, that i'll continue to trust God, trust the docs, trust asher... that i'll do the right thing, speak the right words, ask the right questions, that sort of thing. please pray for me. i also haven't been sleeping very well lately, and if we have to drive to toronto, i need to be alert enough to get us there and back safely. (haha) trust me, i'm not a danger behind the wheel, and i actually have enough energy during the day. it's just that i'm not sleeping at night, so please pray that i can get some rest.

now, for something a little lighter...

asher and i went out last night, just the two of us. a little date, if you will. we went to see Gnomeo & Juliet, and he loved it. ok, so did i. i saw it the other week with bram, and i've loved it both times. it just doesn't get old. it's such a cute movie. and this coming from a Shakespeare purist here, but this movie is sooooo cute, it's great! love it!!! seriously, go see. both my boys had a great time. we all highly recommend it. :) in fact, it's asher's "best" movie right now. awesome! :)

Wednesday, March 2, 2011

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!!!! :)