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."

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

and here i sit, not sure how i actually feel about it all.

we're adding another specialist today. asher's been wheezing for a while now, he has a nasty wet and crackly cough, his sats are dropping. nothing much shows up on x-ray, but maybe the CT scan will show something when the time comes.

it's all so strange... it almost feels pointless, going to see another doctor, hoping they'll fix my baby, since they can't. sure, maybe they can fix his resp issues...

but they can't fix him.

because

"given that the fontan is palliative, he's doing as well as can be expected."

yes, i know that, technically, that is all good news. he's doing as well as can be expected. hooray!! but...

at the same time...

there's that p word.

why has that comment hit me so hard? i mean, it's completely true. the fontan is palliative. they can't fix asher's heart, but they can make it keep beating for a little while longer. and that's what they've done. but it's not a repair, and it's not permanent. his circulation can't last like this.

it is the very truth of the statement that hurts. i suspect i'd let myself believe that maybe, just maybe, asher will grow up. i mean, he's made it through so much already, right? he should have died so many times by now, and yet here he is, right? maybe he'll beat the odds and he'll finish high school and college and he'll get married and have kids and have a great career and he'll live to be 107.

given that the fontan is palliative, he's doing as well as can be expected.

i can almost hear the clock ticking.

this morning, like the last few weeks, i've been wrestling with the seeming futility of all of this. why bother taking him to emerge? why bother seeing cardio? why bother starting with a new specialist? why bother with tests? if this is the best he's gonna do, then what's the point?!?!

but...

what if these docs can give him just a few more years? then again, what if he still has a few more years, and they can give him ten more years? what if they can do something that will allow him to not only start high school, but to finish high school??

what a horrible thing it is to hope against hope that your child will live long enough to go to high school.

and yet, this is my reality.

there's no denying it: HLHS is a death sentence. given asher's extensive list of diagnoses, and his history, and his present, the odds aren't in his favour for a long life. he's not actively dying right now, thank God. but there are the little things that pop up and add up and take their toll on him...

and on me...

and sometimes, it's just a little much.

and sometimes, it's not nearly enough.

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...

How CHD messes with your head... or maybe just how Asher does... hard to tell sometimes...

So, last night, asher was grey.

And i remembered another time when he was grey in his sleep.

Last spring.

When his heart rate was in the 20s and 30s.

As soon as i saw him, i flashed back to those nights. Those scary, scary nights.

Those freaxiating nights.

Those heartbreaking nights.

I didn’t think he’d survive long enough to get the pacemaker. I don’t think i ever put that into words, either spoken or in writing, but that’s what i was thinking at the time.

And so, when i saw him last night, sleeping, grey...

I thought about taking him in to emerg. Because... you know... what if...

His heart wasn’t beating fast enough...

But i looked at him, lying there, so grey, so peaceful.

Not short of breath,

Not sweating,

Not indrawing beneath his ribcage,

And rousing when i moved his arm.

And i thought... well, i can rouse him, so that’s good... and he doesn’t seem distressed right now, so that’s good...

But he is grey.

And he really shouldn’t be.

I called amazing dr b because, honestly, i didn’t know what to do. Should i take him in? Should i just brush this off? He can’t have a slow heart rate anymore. It will always be at least 80.

But then i thought... what if his pacemaker isn’t working properly???

But then, wouldn’t he be sweating? Or short of breath? And un-rouse-able?

But he’s so grey.

This is what this life does to a mom, after a while. He’s been through so much. And i’ve been through so much with him. and i’ve learned a lot. I’ve learned to listen to my instincts, but i’ve also learned all the clinical things to watch for.

So now, whenever he has a symptom, i begin to wonder,

Should i take him in for this? I’ve seen him like this before, and it was bad... but he doesn’t have any other symptoms. Just this one. So should i take him in?

I just don’t know anymore.

It used to be so easy. When he was very young, if he had any symptoms at all, even “just” a runny nose, i took him in. And they always found a problem. Which always ended up messing with his heart in one way or another.

See, he’s had all these symptoms so often, for so long, it’s gotten to the point where i’ve built up a tolerance for some of them. Even his colour wheel, i’ve become so accustomed to it... I can brush off pale (for a few days). I can tolerate blue. But any shade of grey makes me want to vomit. 

So what do i do? Do i listen to the same advice i gave my close heartmom friend, “better to be paranoid than indifferent, because the paranoid mom will be right once in a while.” But what if i’m reacting to something that really is nothing? And now that everything is different post-fontan...

What if i’m brushing off all these things, and they actually are something... but “i’ve seen him worse, so, meh.”

Sometimes, I don’t know how to tell anymore.

On the other hand, i’m tired. Maybe some rest. Or better (and more realistically) yet...

Caffeine!!!!

(have i mentioned i’ve become hooked on lattes?? It’s true.) 

crystal balls, looking back, and the unanswerable questions that break my heart

a friend of mine has a blog about parenting a medically fragile child. her daughter's condition is different than asher's, but our journeys as mothers have often been very similar. and so her post today broke my heart. i'm not going to summarize it here; you can check it out for yourself, if you're interested. but i want to share my reactions to it. and please know, i don't always think about these "unanswerable questions"... in fact, i very rarely do. i know that i don't know the future and i'm ok with that. except today, it would seem. but it's part of the journey, so i'm sharing it.

when a family has a special needs or medically fragile child, suddenly, the entire family dynamic changes. in every imaginable way. we went from "ed, heather and the kids" to "asher and heather... and aren't there some siblings in there, too?" since 10 december, 2006, my life became centered around asher. asher became my identity. even my email addy is "wonkyheartmom" for crying out loud! his wonky heart became my wonky heart.

as for blithe and bram... sigh... (please bear with me in this post. my heart is breaking and i'm in tears, so if there's typos, it's because i can't see them.) it's like there are two sets of children in my life now. there's asher, and there's "the kids." and "the kids" are blithe and bram. yes. they're separate. when asher is in the hospital, or he's in emerg, or he's sick at home, i need help with "the kids." and that never means asher. that means blithe and bram. i mean, think about it: people ask me all the time how asher is doing. occasionally, they'll ask how i'm doing. rare is the person who asks about blithe and bram. and by "rare," i mean, i don't remember the last time someone asked about them. here's just two examples: a book is being written about life with a single ventricle kid, and ours is one of the families being "showcased" (for lack of a better term). the authors wanted to know about asher and his parents. the kids? mostly overlooked (because we did discuss them, but not in depth). and when i was asked to share at church about our journey, they asked about asher and me. again, there was no mention of blithe and bram, other than that i have three kids. i'm not blaming anyone here; it's natural to focus on asher, because his part in this is so obvious and dramatic. but still... i have two other kids whose stories don't get told.

and how have blithe and bram responded to all of this? generally speaking, they deal with all of this wonderfully. a SN/MF mother's dream. they are strong, joyful, resilient, compassionate. they just roll with it. "asher's in the hospital again? hooray! that means we get to spend time with nana!!" but then i wonder... you know... in the bigger picture...

blithe knows way too much about asher's condition. and i don't just mean that she knows about all the defects in his heart and she can tell you about the surgeries and she can find the aorta on a picture of a healthy heart (b/c there isn't one on the picture of asher's heart, and she knows that, too). i mean... she knows. she knows he's fragile. she knows that there is no medical explanation for why he's still here. she knows that he could pass very quickly, with very little warning. as for bram... he was so young when asher was born, to a large extent, this is the only kind of life he has ever known. the instability and unpredictability and stress and chaos and unknowing. up until the other week, he assumed that when he was asher's age, he had all kinds of scars on his torso, too.

and then there's the non-asher factors that go with this life, which are inextricably intertwined with the journey. asher's care is expensive. so um... yeah. i'm usually broke. and the kids know that. we don't get to buy new clothes very often, and when we do, they're not super cool. they're super cheap. we don't get to eat out very often. a full tank of gas is a luxury. the kids are aware of this. they don't get the cool toys that they see advertised on TV. nope, they have to make due with the same broken toys they've had for years, unless their dad buys them something (which is also nothing expensive). i mean, seriously, right now, asher needs a new pair of everyday shoes. and can i buy him a pair? nope. he's just gonna have to make do with these shoes that don't stay on his feet, because i just don't have the money for a new pair. as for groceries... the kids don't get lunchables or special treats, they don't get their favourite cookies. they get homemade cookies. and sandwiches on homemade bread (other than today, because my mother bought a loaf of bread for us on saturday)... i'm not trying to say we're starving or anything; they're fed, don't worry. but my point is this: the kids have to sacrifice a lot.

and it's not just sacrificing material things, either. as joyful and gracious as blithe and bram both are, there are those tell-tale markers of this life: they both struggle a bit with anxiety. granted, some of that is genetic. but it doesn't help that they have very little control or predictability in their lives. i'm working on getting some sort of routine now, but it's hard. we've been without it for so long, i feel like i have no idea how to do that anymore. but even developing a routine now is a huge change for them, and that causes them stress.

the point i'm trying to make is this: having asher in our lives has been very difficult. yes, it's wonderful, he's an amazing boy, and i love him more than i ever imagined i could ever love another person, and he is a gift and a blessing in innumerable ways. don't misunderstand me. but... sometimes...

and i'm just being honest here...

i ask myself, "if i could go back, knowing what i know now, what would i have done?" if i knew the cost to us as a family, if i knew how he would suffer, if i knew how blithe and bram would suffer...

would i change anything?

and again, i'm being honest here.

knowing what i know now, both about the condition/treatments/odds/etc and about the life itself,

i would still have made the same decision.

but i would not have brushed off some of the options quite so quickly. i would have at least entertained the thought for a few minutes, instead of snapping at the cardio. i would still have chosen the hybrid. i honestly would not change a single thing that i have done over the last nearly 4 years. but i would have given more thought to the impact of my decision on the other kids. again, i'm not saying that i would have chosen comfort care. i wouldn't have. it's not mine to decide how long another person lives, so i wouldn't have chosen that. i would still have chosen the hybrid, too, even though a couple complications along the way were directly because of that surgery.

and then there's the other unanswerable questions...

how will this life impact blithe and bram as they grow up? what kind of adults will they become? what kind of parents will they be? or will they even have children at all, too afraid to risk having a child like their brother? will they hate me and resent the life i chose for us? will they hate God for giving us this life? or will they grow up to love God? will they find comfort and refuge in Him and His promises? will they be compassionate toward other people? will they have learned to embrace today instead of fearing tomorrow or regretting yesterday? will they see God and Beauty and Light where others see darkness? or will they be consumed by fear and anxiety and mental illness?

if i'd had a crystal ball back in the day, even before asher came onto the scene, i think i would have made pretty much all the same decisions i've made anyway. and in the meantime, "all" i can do is to do my best, love them unconditionally and completely, and trust that God has plans for them, plans to prosper them and not to harm them, plans to give them hope and a future. it's just...

sometimes it would be nice to know ahead of time...

would it surprise you to know i spent last night reading?

no? ah, you know me well. ;)

well, here is what i found: epilepsy adds yet another layer of complexity to asher's already complex health and treatment. take some of these statements from an article i read:

Isolated seizures can transiently influence cardiac function, and epilepsy, if not managed appropriately, can lead to serious cardiac dysfunction.

gosh, isn't that fantastic. basically, it means this: seizures can cause a heart to fail. this is rare in patients with a healthy heart. but the problem is that asher's heart is not in the greatest shape, he lives with congestive heart failure, and one cardiologist, when asked just how much seizure activity asher's heart can tolerate, answered "not much." too much seizure activity is not good for asher's heart.

but, you'll note, having epilepsy means that asher is prone to seizures.

On the other hand, cardiovascular disease and treatments can precipitate new seizures or alter the management of pre-existing epilepsy.

heart disease and treatments can cause seizures.

asher has heart disease. and he is being treated for it.

so, you see the problem here. seizures can cause the heart to fail. and a failing heart can cause more seizures.  which can lead to more failure. which can lead to more seizures. which can lead to more failure. which can lead to more seizures. and so on, and so on, and so on, and so on.

isn't neurocardiology fantastic? (the article i just linked to is where i got some of the information for this post. it's actually quite interesting.)

check this out:

Brain ischemia [...] can cause seizures.

what's "brain ischemia," you ask? it's a sudden decrease in blood flow to the brain. you'll note, this is also what causes fainting, as per the neurologist. you'll also note, asher fainted the other week. twice. (is anyone else nauseous right now, or is it just me?)

but, what would cause brain ischemia, you ask? well, how's this for an answer, again from the article:

Structural cardiac disease and arrhythmias cause impaired or turbulent cardiac output. The result may be poor cerebral perfusion.

translation: when there are problems with how the heart is built (and/or rebuilt), there are problems with how the blood leaves the heart and goes to the brain. arrhythmias also cause this.

asher has structural problems with his heart, and he has arrhythmia. and these issues, because of the issues with blood flow to the brain, cause seizures. which diminishes heart function. which, you'll remember, leads to more seizures.

the article also lists cardiac conditions and treatments that can "lower the seizure threshold" (the minimal conditions necessary to produce a seizure). four of these are congestive heart failure, congenital heart defects, "cardiac surgeries and other interventions," and heart meds. there are others, but i listed the four that apply specifically to asher.

ok, now, i realize that this all sounds pretty terrifying. and i'll admit, right now, i'm more than a little worried. give me a couple days, once i've sorted this all out in my head, and i won't feel so bad. but it's still very new and fresh, and i just need to get all this out before it really starts messing with me. but you know that i will be calling cardiology today, in london, and probably in toronto, too. i just need some reassurance right now. thanks for humouring me today.

if it's thursday, this must be paeds. and emerg. and cardio.

true, the sentence above makes a witty post title. sadly, however, it doesn't make a good day. in fact, i think there's only one word which properly sums up today: ugh. with a capital UGH.

it started off delightfully enough. after falling asleep shortly after 1am, i woke at 4:45. and i mean, wide awake. nice. so i stayed in bed for about an hour or so, and then decided to head out for a drive through the country. after which, i came home, showered, and went to meet the kids for breakfast (they've been with their dad for the last two days).

and as we sat in A&W, i was looking at asher. closely. for a long time. until i finally said aloud what i'd been thinking for over 20 mins:

"he doesn't look right."

so i called our wonderful paeds, dr b, who is on call this week. i told her, "asher's pale, and his forehead is grey, and his eyelids and nose are blue."

"what??" she exclaimed incredulously, "why is he all of those colours?"

"i don't know," i replied, "he's usually one or two of them. he's never all of them."

so she had us go to the paeds ward at the hospital. we got there around 9:30. then doc walked into the room, and, taking one look at my littlest man, said, "he's blue." and it went from there.

the numbers, for those who understand and want to know:

• BP was 90/52. (his norm is 120s/80s.)
• HR was mid-90s to low 100s. (he usually rides the pacer, so his HR is 80 dead on.)
• sats were 90 to 92%. (his new baseline is 96-98%... so, normal. these numbers are distinctly not in the normal range.)
• activity level was decreased, and he wasn't as co-operative as usual. mind you, he was still in constant motion, but not as shockingly fast as usual.)

so we were sent down to emerg for a chest x-ray, ECG and bloodwork.

amusing story about the x-ray techs: first, they were going to put asher in the pig-o-stack. delightful contraption, if you've never seen it. it's a wood table, with a hole and bicycle seat in the middle, and a large clear plastic tube which they close tightly around the screaming baby/toddler with his arms above his head. pretty, no? ugh. anyway, they were surprised to hear that he's now a pro at sitting on a stool for the pics. they looked at me like i was crazy, but i just said, "you'll understand when you see his x-ray." so they did the first shot, and when they looked at it, one of them said, "oh! he's had a lot of surgeries!" "why has he had all those?" the other asked. "because he only has half a heart," i replied casually. they didn't respond. but i giggled inside, i'm not gonna lie.

at 2:30, we had everything done, and emerg doc came in to say, "dr b has talked to cardiology in london, and they want you to go there right now for an echo. you can drive him, but you have to go now. they're waiting for you."

so off we trekked for an echo.

which, of course, showed nothing.

and his ECG in london (the second of the day, you'll note) was "asher perfect."

and his chest x-ray was "asher perfect" (meaning, you can clearly see all his little extra bits and pieces in there, which is always very cool... and fun, when it startles the x-ray techs who have never seen a paced 3-yo with lots of staples, coils and stents. teehee).

and his numbers weren't much different. his BP had dropped to 88/60, which, according to liz, is good.

so dr r doesn't quite know what's going on today. the bloodwork is ok, his haemoglobin was right where it should be, and it all looked good, actually. so, once again, asher had the docs scratching their heads. and me craving poutine (because in addition to laughing, that is the other way i cope. true story.) so we left the hospital shortly before 5, i think. oh, yeah. fun times. but at least asher got to watch some of toy story and toy story 2 and play with some trains.

oh, and a story before i depart. dr r came out to get us after the echo, and on our way to a room, he said, "i checked out his website the other day." "really?" i said, surprised, since he's not asher's cardio. "yeah, it was interesting. i was googling the hemi-coles procedure, and his site was right there." so i told him about the other docs who read the blog, and he laughed to hear that this blog is where they get some of their info.

anyway, this post doesn't quite convey the drudgery of the day. especially when you factor in all the waiting and sitting and the fact that by 11am i was falling asleep. but you'll note that we didn't get any answers. just a lot of "now we know his baseline" and "i dunno, call if he gets worse." a delightful day. and so, to sum up,

ugh.

btw, i just realized i didn't post about our immuno clinic last week. so here's the details (yes, the details, because i'm truly not leaving anything out here): "i dunno. see you in 6 months. now let's draw over 2 ounces of blood from the wee boy." now, spread all that out over 4 hours, and you've got the picture. seriously, that was the entire day. oh, and rush-hour traffic with 3 rowdy kids in the backseat all the way home. c'mon, admit it, you're jealous. {rolls eyes}

and since this is a bit of a downer post (or at best semi-boring), i'll leave you with the funniest thing i've read in a very long time, and quite possibly ever. enjoy!!!

oh, and i should add that tonight i got a text from his dad (the boys are staying with him for an extra night this week), saying that asher pinked up after supper. of course he did!! after we spent the day in hospitals.

again, ugh.

downer alert: it's late, i'm tired, and asher is just so very skinny. :(

on tuesday, asher goes in to paeds for his monthly weight check, and this time, i'm not expecting a gain.

in fact, i'm anticipating a loss.

asher doesn't often eat anymore. a couple bites of a meal is his usual. unless he's racing with someone (who knows enough to let him win). but that's only a trick to get him to eat at all.

today was the first day in about a week that he's had an appetite. he ate a bowl of cereal for breakfast, an apple, a chocolate bar (gotta love a church with a snack bar!), a cookie, a smoothie (with polycose in it, but shhh! don't tell him that!), another apple, a bowl of lentil and sausage casserole, and some of a second bowl of casserole (both of which contained polycose. again, that's a state secret, and i'll trade you to the russians for someone not nice if you breathe a word of that to asher).

but today, when he was having his bath... i could count his ribs. and he's got an outtie again.

fyi, asher doesn't usually have an outtie. except when he's skinny skinny.

i had just donated his IV pole to the drama ministry at church to use as a prop. i told them that this was my act of faith, that i'm stepping out here believing that asher won't need it again. the director said, "if you need it back, let me know, and you can have it." "oh, if i have anything to say about it, we won't need it back. i'm not feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again!"

but apparently, i'm feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again.

it's just so discouraging. i've buttered mcdonalds hashbrowns and pasta, i've used more oil to cook than i ever imagined possible, i've given him chef boyardee and fed him chocolate bars and ice cream and cookies and more fast food than should legally be allowed, and added Polycose to everything, including milkshakes, scrambled eggs and pasta sauce. for nothing.

with his heart the way it is, it is pretty much impossible to put weight on him. he knows he needs to eat, he knows he needs to gain weight, he knows he might get a tube... and yet, he doesn't eat.

and i don't want to keep reminding him of the (possibly/likely) impending tube, because he's already struggling with his PTSD, getting sad and scared off and on throughout the day for no apparent reason. so i don't want to threaten him with another tube, in case it harms him psychologically. especially since he's making some progress with that (he actually tells me - if i ask him - how he's feeling, which he never did before, so this is actually good news on that front).

i also don't want to have to force him to eat, because i've wrestled with food issues, and i don't want him to have to go through something similar. i don't want him to see food as the enemy, or as something he "has" to do. i want him to have a healthy relationship with food, and i don't think that threatening him to eat all the time is the way to nurture that. i'm trying to think long-term here, even while dealing with short-term issues.

and i don't want to turn mealtime into a battle of wills. i want mealtime to be happy, fun, a loving communal experience with the family.

so far, racing works. but other than that... nothing. even bribery doesn't work.

this is really hard right now. i want him to have a normal life with normal kid problems, like bruised knees and "brammy just took diney away from me" and "dare no cheese!!!!" (yes, he'll eat cheese. assuming we have some in the house.) but balancing normalcy with health issues, trying to integrate his medical requirements into everyday life without overwhelming it or traumatizing him all over again can be downright impossible sometimes.

i'll figure this out. i will. but tonight i'm exhausted (i haven't had a decent night's sleep in about 2 weeks now) and i'm discouraged by the lack of progress on the weight front.

in case you're wondering...

heart life is hard sometimes.

really hard.

things uttered today

• at 6:20 am: "yes, asher, you can have pepperoni pizza for breakfast."
• at the dollar store: "asher, what do you want for a treat?" "i want one of dese, mommy" (points to an ice cream sandwich) "perfect!" "oh, mommy, i not want dat. i want candy." sigh "ok, hunnybun, you can have that blow-pop instead."
• at the grocery store: "thanks, blithe. we could use that coupon for whipped cream. hmm... how many should i buy?"
• "EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!" as asher runs - literally! - around the entire superstore. i'm not even joking. the whole store. running. usually away from me or right in front of someone else's cart.
• "mommy, i hab dis?" as asher hands me a Yop that he grabbed while helping blithe to pick up some whipped cream.
• "please, God, let this be high in fat... what?! only 3g of fat?!?! well, every little bit counts, i guess."
• "please, God, let the all-beef hot dogs have more fat than the regular ones." fyi, all-beef hot dogs have less fat than the regular ones. guess which ones we got?
• "why is homo milk $1 more than 2%?!?! ok, fine, i'll just get 2%, and mix it with table cream. it's got 18%. that will have to do."
• "why is all the yogurt and sour cream and cottage cheese low fat?! i want as high fat as possible!!"
• "no, i'm not buying those pudding cups. i'm going to get some instant pudding, because i can make that with cream."
• "EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!" asher, still running throughout the store.
• "i'll go get him, mommy." "thank-you, blithe."
• "put me down!!" shrieked as blithe carried the paced single-ventricle heart kid from the next aisle back to our cart in the freezer aisle, where i was contemplating ice cream and Carnation instant breakfast (which is expensive, by the way!!).
• "ok, which beans have the most fat? oh, wait, i have beans at home, and i can cook those up and mix in some butter when i give them to him."
• "oh, wow, what a great price for crushed tomatoes! they're non-fat, but i can mix some polycose and olive oil into the sauce, and butter his pasta. perfect!"
• at home: "look, mommy, i hab cheese!"
• "asher, did you drink your yop already?" "oh, yes, mommy, i did!" i'm not joking. that's how he answered, all sing-songy and with a smile.
• "yes, asher, absolutely, you can have ice cream for supper."
• "asher, do you want a second hot dog with cheese?" "oh, yes, please, mommy."
• "mommy, i hab more ice cream?" "yes, you can. you ate some of each of your hot dogs, so you can have some more ice cream."

 i'm not even exaggerating here. these are actual, direct quotes from today. this is just messed up. LOL

oh, seriously, come ON!!! enough is enough, already!!!!

Now, you know i don’t usually post this sort of thing, but i really need to get this out, and i figured, hey, why not blog it for everyone to read? Because i know you’re all dying to know about the insane minutiae of our lives. (haha)

First up, the week’s goings on at home. Sigh.

It had been pretty windy and rainy here earlier in the week. So much so, in fact, that a branch on a large tree in the backyard battered the chimney, and on Tuesday night, as i was out taking asher’s meds over to his dad’s place... the chimney fell. Not the whole thing, mind you. Just the top 3 feet or so. Three feet of cinderblock and clay. Came crashing down. Onto the roof of the bathroom.

Now let me explain this a bit so you have a visual:  the house is two storeys at the front, with the bedrooms on the second floor. At the back of the house is a one-storey addition which houses the kitchen and bathroom. The chimney is attached to the 2-storey part, and it was quite high because of the high peak. So it probably fell about 15 feet onto the roof of the bathroom. About 400 lbs crashing down, which dented the roof, broke the frame beneath, and sent a broken beam through the bathroom ceiling, along with all kinds of insulation and drywall. The ceiling was literally caving in.

I’m happy to say that insurance is covering it, which is nice, although i had a couple not-so-small panic attacks when i thought about the deductible. I’m a single mom with no income, so where i was supposed to come up with $500 is beyond me. BUT!! When the adjuster and project manager came over to assess the situation the next morning, we were outside looking at the chimney and he (project manager) was talking about rebuilding the chimney. So i said, “well, the chimney isn’t used anymore. The exhaust from the furnace comes out of that pipe over there by the ground.” He and the adjuster looked at each other, and she (adjuster) asked him if he could just level the chimney off and cap it, which he said they could do very easily, so she looked at me and said the most glorious sentence i have heard in a loooooooong time: “well, since that’s the case, i’m going to waive the deductible for you, since to rebuild it would have cost a lot more money.” That’s right, folks, no more deductible for me!! hooray!!!!!! So that was a relief, so much so that i nearly burst into tears.

now, during the repairs, we can't stay at the house. this is our only bathroom, and it's going to be out of order for a couple days while they re-do the bathroom. so... they're going to put us up at a hotel for a couple days, and i don't have to pay a cent for that!! hooray!!!! and to be honest, i'm looking forward to it. and so are the kids. it's not a holiday per se, but it's as close to one as we're gonna get for a while, so we're pretty excited.

in the meantime, a couple crews have been out to seal up the roof and make it water-tight, which is nice, since we don't need water damage in addition to all of this. and yesterday, another crew came out, tore out a lot of the drywall from the ceiling (all of which needs to be replaced, by the way), and sealed it up with plastic so that (theoretically, at least) that nothing else will come crashing down. it's all sealed up, as well, and the broken beam and other heavily damaged areas are now braced with 2x4s. but the kids all know not to go near the beams; asher was telling smokey today, "no touchie touchie, smokey. no touchie." too cute. especially given that he was shaking his finger at her from the other side of the room. i love that boy.

but you may have surmised from the title of this post that this is not the end of the chimney saga. and you'd be right. you see, this afternoon, i noticed that the tree, which is about 6 feet (if that) from the house... is broken. twisted, cracked and leaning on an unnatural angle. and the top of the tree, which is higher than my house, is hanging directly above the back bedroom. my back bedroom. and the bedroom at the front of the house on that side. the boys' bedroom. where asher sleeps. right next to the outside wall. not that it matters which side of the room he's on when the ceiling and attic and roof all come crashing down. so tonight i'm praying the tree holds in the storm (which it has so far), and i'm going to be pointing it out to the adjuster tomorrow. i'm hoping that they will pay to have the tree removed to avoid any further damage to the house. because if they don't take it down, it's going to come down on its own, and it will take the house with it, which will cost them WAY more money than a simple tree removal. so pray/cross your crossables/send reasonable vibes that they'll go for this idea, and i won't have to pay to have the tree removed. (i've already called the city. it's too far onto private property for them to remove it. which means i'll have to take care of it myself. so i'm hoping i don't. because i really can't afford to do it. ugh.)

so that's the house this week.

now for asher, which is going to be a short report this time. he's been doing very well lately. in fact, he's much better. that is, if you ask him. haha i shouldn't laugh. he is doing well. he's got a lot of energy lately, which is lovely to see. however, he is still pale, and while he has a lot of energy, he also gets tired much more quickly than pre-fontan, and he gets short of breath pretty quickly. he is also still sweating while he sleeps, and he doesn't always have a great appetite lately. we're hoping that he'll just need a minor adjustment to his pacemaker, which they can do in clinic on monday morning, so i'll keep you posted. 

and we're hoping for something simple like this, because frankly, i'm running out of steam here, and i don't know how much longer i can keep going like this. the last few months have really taken their toll on me emotionally. i'm completely worn out and don't have the energy or brain power to handle any more crap. right now i'm on the verge of tears just typing this, which might also be due to the fact that i'm really tired at the moment. a good sleep just might do the trick, but there's been so much stress over the last while that i'm really feeling worn out and drained. i know i'll keep going, and whatever is going on, i'll deal with it, because that's what i do. but i'll also admit that i haven't always been taking care of myself the way i should, but that's my own fault, and i can and will fix that. so no worries there.

and yes, there's more. and this is a rant, so feel free to stop reading now. i just need to get this off my chest.

for those of you reading who are not heart parents, or for those of you whose heart kid is (relatively) mild... say, has never had surgery... don't try to tell me that i don't get it.

i received an email this week from someone, and it really hurt me. and insulted me. and frustrated me. i was told that i "don't understand what it's like to have a child who gets admitted for things that everyone else's kid gets over in a heartbeat." apparently, i don't know what it's like to have a child on whom "the little things take a real toll." i have no idea what it's like to have a child who is unstable. i don't understand.

apparently, this person has forgotten that asher has spent time in ICU with a cold. that he has been admitted three times for a HEADACHE!! (ok, granted, it was migraines that were causing febrile seizures, but still! who else gets admitted for a migraine?! and three times, at that!!) and that one of these headaches sent his CHF into overdrive and he needed open heart surgery because it devastated his heart, but he couldn't have the surgery because his pressures were so high the operation would kill him. croup required an extra trip to cardio. RSV, for which bram spent 4 days in hospital, got asher admitted for four days. 

i am sick and tired of people trying to "beat" me in some sick, twisted competition to see whose child is more unstable. really? is that a competition you really want to be in? because you can't win that one against me. i'm sure (hoping, for purely selfish reasons, admittedly) that there is someone out there who can beat me. but i don't know who they are. sure, i take asher's stuff in stride and deal with it and somehow manage to laugh and rejoice and smile through (most of) it. but it's hard sometimes. really hard.

because it doesn't stop. and while some people just keep their eyes peeled for the tiniest things that might be going wrong with their child, i would much rather bury my head in the sand. i can't even count the number of times i have said to doctors, "what i'm looking for here is, 'mom, you're paranoid. go home.'" and you know what happens instead? we get admitted. (but you'll notice that i said this to doctors, which means that i took him in anyway, even though i didn't want to, and i was hoping i was wrong.)

know what sucks? HLHS. 

know what else sucks? someone telling you that you have no idea what it's like to have a child who is unstable and could die from something little. being told that you don't understand what it's like to have a child who is in and out of hospital all the time. being told that you just don't understand this life at all.

because let me tell you, i could write a book about it!! (or at least a blog or two.)

if you want to be supportive, or a friend, or even if you're venting about the crap in your own life (which i'm very understanding of; we all need to vent, because we all have stress, and what's nothing to me might be major to you, and i get that, so vent away). just don't. don't. DON'T tell me that i don't understand. because if that's what you think, knowing anything about asher and his journey...

then just leave me alone.

I need to stop typing these up in Word; it’s too easy to go long. But there’s a lot to be said, so settle in.

I realize I haven't been posting here very faithfully over the last few weeks. There's a reason for that. We've been busy. Two birthdays (Asher turned 2 on Tuesday; Bram turned 4 on Friday), Christmas shopping, eating by mouth, fighting CCAC, doctor's appointments, mystery vomiting for, and um... no, I think that's it. Gosh, it felt so much busier than that. Maybe I just have poor time management. (LOL. And arg. This will make sense in a bit, don't worry.)

Let's start with the birthdays and Christmas. Those are fun.

So, it turns out that my 2-year-old boy who loves Thomas and Elmo is the hardest person in the world to shop for. You wouldn't think so, but it's true. Apparently, the only Elmo thing available this year is that stupid Elmo Live thing, which I hate (hence the "stupid" comment). But, we managed. He had a blast and was, predictably, spoiled rotten with gifts. If you haven't seen the pics from his birthday, check them out. I posted the link to this Facebook album in his birthday post, but I'll post it here again: http://www.facebook.com/album.php?aid=64789&l=d2f94&id=593667512
and yes, he had cake. More on that in a moment.

As for the Christmas shopping, well, I have the same dilemma there for Asher. Again, stupid Elmo Live. That's pretty much it. Why is Elmo not cool anymore?! Next to Super Grover (who ranks up there with Batman and Wolverine, as far as I'm concerned, albeit for very different reasons! LOL), Elmo's the coolest Muppet ever! I don't get it! arg. You can't imagine my frustration. And then there's the clothes situation! That's even worse!

I wanted to get the kids Christmas outfits. I found a gorgeous dress for blithe, and an adorable little outfit for Bram (beige, brown and orange, with a sweater vest and a tie – too cute! And not nearly as nerdy as it sounds, so don't laugh). But Asher, he's tricky. I know what you're thinking: "but heather, he's that gorgeous blue-eyed blond with rosy cheeks and a spunky personality! You could put him in almost anything! He'd be great to shop for!" haha, you'd think so, but you'd be wrong, my friend! Spunky personalities are easy to dress. And blond-haired, blue-eyed beauties are easy to dress. But... here's the problem, as I see it:

The "in" colours this season for little boys: blue, grey, white. And so almost everything I've seen for boys this season is blue, grey and white.

I have seen Asher each one of those colours in the recent past.

And put those colours on him, and they will do nothing but accentuate his blue undertones. And when you think that the trendy accent colour for boys this season is black, well, that will just scream "hi, I have half a heart and really low oxygen levels." So, no.

Ok, so the blues, greys, whites and blacks are all out. So, you'd think think red, right? Yeah, good idea. Let's put his "goal" colour right by his face. That'll work. Um, let me think... no. That will simply draw your attention to the fact that he is not anything close to this colour. Sure, there's a pinkish hue to his cheeks, but there's an actual blue to his forehead, nose and mouth. So red's out.

Purple, then. Oh, I'm sorry; I forgot to include that on the list of colours I've seen him turn. So no.

Orange. Yeah. The complementary colour to blue. That won't accentuate his cyanosis. *rolls eyes*

Yellow? No one should wear yellow. Ever. But that's just my opinion. (so not a yellow fan.)

That leaves us with green. At Christmas. Easy, you'd say. Ah, my friend, you have never gone out looking specifically for something green for a blue 2-year-old, now, have you? No. I have. Not so simple. Because apparently, green is not the trendy colour this Christmas. The one year I need it is the one year it's nowhere. Nice.

Well, I shouldn't say "nowhere." I did manage to find a gorgeous sweater at The Children's Place last week in green stripes. And I mean GORGEOUS!!! (they also had a blue one like it, and I was tempted to buy it, but only to use for trips to emerg and such, as a colour reference: "so, he was this colour this morning, and now he's this colour down here, and last night he turned the exact shade of this stripe on the sleeve." Handy, but I think I'll wait till it goes on sale, thank-you very much.) But he needs pants and a shirt to go with it. Perfect. Not a problem. There should be loads in his size (2T), right? Yeah. Maybe. But not in this hemisphere, I'm afraid. They had the perfect cords. So cute. And available in every size but his. And they had the perfect little white dress shirt. Adorable! Also available in every size but his. I can't tell you how much I love shopping for this kid. Ugh. So, there you have the saga of the Christmas outfit, up to today. But we do have a bit of a time element here. You see, my AMAZING friends Geoff and Staci know how obsessed I am with the photography of a friend of theirs (really, it can't be healthy, but seriously, folks, he's incredible!). So what did Geoff and Staci surprise me with the other day? A PHOTO SHOOT WITH CLINT ON THE 14^TH!!!!!!!!!!!!!!!!!! AAAAAAAAAAAAAAAAAAH!!!!!!!!!!!!!!!!!! That's a week away!!!!!!!!!!!!!!!!!!!!! So, the older 2 are taken care of as far as their clothes are concerned. But Asher! Eep! I need to go shopping again!

Ok, on to eating by mouth... and this will be quick, because by now you've gone to his birthday pics and seen for yourselves: HE CAN EAT BY MOUTH!!!!!!!!!!!!!!!!!!!!! He ate birthday cake the other night, and he had pizza for supper. And when I say "eating," I mean he's swallowing, actually swallowing, and not aspirating! Nothing is going into his lungs! He can actually swallow!!!!! You have no idea how amazing this actually is! Just a few weeks ago I was getting so discouraged, thinking that he would always be entirely tube-dependent and never able to eat like the rest of us do. Sure, he had be putting food in his mouth for a while now, but he was leaving it in there for hours and we'd be pulling supper out of his mouth before bedtime (which is much more disgusting than it sounds, believe me). He also had pizza tonight, which by now you've read about below. And his new favourite food in the entire world... can you guess? CHEERIOS! How normal is that?! And how thrilled am I?! J You can't even imagine! Growing up, I hated normalcy. Now, I crave it like a toddler craves cheerios. Like Asher craves Cheerios! From the moment he comes downstairs in the morning until the moment he goes to bed at night, he's asking for cheerios: "chee-ose. Kees?" (Side note, here: for his birthday, I managed to find a cloth Elmo book, but I also got him one of those cheerios cup/bowl things they have at the Superstore, and his very own box of Cheerios. And all he wanted was the cheerios! Yay!!! J) and Thursday was his 2-year check-up (also delightfully normal, and mostly all good), and when I told dr b about the cheerios, she said, "oh, ok." (No swallow study yet, mind, but whatever, she said, "oh, ok" so I'm going with that. LOL).

Moving on... what's next?... ah, yes, fighting CCAC. Did you know that Asher doesn't need daytime nursing? That what will really help him to, say, survive and me to get a good night's sleep, is to have stranger sitting up awake in our bedroom (he sleeps in my room for now) all night? That's right. CCAC tried to cut our daytime nursing, which means no more monitoring of his health, and only give us night nursing. Well, actually, she tried for a PSW, who, you'll note, cannot give meds or anything. You can imagine how I reacted. During our hour-long phone conversation the other day, I made it quite clear to her that her plan (which she continued to refer to as our plan regardless of my feelings on the subject) was crap and I would not tolerate it. she argued with me, saying that what I need is sleep, and that if I had better time management I'd be able to get all my living (that is to say, errands, doctor's appointments, picking the kids up from school, rest, breaks from a medically fragile child, etc etc etc etc) on the days he's at Ed's, and that I should be fine to do all of Asher's care by myself with no support the rest of the time. If I had night nursing for Asher, apparently, I would be refreshed in the morning every day. At that comment, I laughed and said, "You don't have a special needs child, do you?" "Well, no," said she, "but I can imagine it's about a hundred times more stressful than parenting a healthy child." "Oh, you think?" I said, ever so politely and not at all bitingly or rolling my eyes. "When was the last time you woke up refreshed?" she asked. "Um, how about, before I had kids." "Well," she replied, "welcome to parenthood." I'm not kidding. That's what she said. So, apparently, what I need is a stranger sitting awake in my bedroom overnight and a more realistic grasp of parenthood, and then I'll be able to handle all of Asher's care by myself. And, throughout our conversation, she kept saying "we're client-directed care" but then in the next sentence it was all about "government mandates" and "responsible use of human resources." Which means, "screw you, mom, I've got a piece of paper from a politician that says you don't need help keeping your child alive."

Ok, if you've met me (or read my blogs, or if you heard me on the phone with her last week), you will know two things: I told her that clearly her priority is not, in fact, Asher's health or survival but rather her precious paperwork. (Yes, I'm just that blunt. Those are my actual words.) And you will know that in the end, I won. She almost cried at one point (never piss me off when it comes to Asher. I'm his momma and I'm gonna do everything I can to keep him alive, and if that means I complain to high-up hospital administrators or make a grown woman cry, I'll do what I have to do). In the end, she said, "well, I'll take what you've said to my manager and I'll call you back in a few minutes." Half an hour later, she called me back. They're leaving Asher's care the way it is right now. She's gone till March now, and at that time, we'll sit down and have a big meeting with herself, her manager, nursing, dietary, and me and we'll all discuss Asher's care and see what he actually needs. But the story's not done.

That afternoon, Asher had an appointment with paeds (he wasn't doing so well that day). I mentioned the CCAC situation to doc, and she, of course, got ticked. For those of you who don't know Asher's paeds, she's a lot like me, only feisty and with a tendency to fight for Asher's wellbeing. I like her. J She wanted all the details: what care we have now, what they wanted to give us, the case manager's name, everything. She said, "I'll give her a call today, because this is not acceptable. And then I'm going to call Steve Peters and tell him that he can either reign in CCAC or come here right now and show me the plans for the respite home they're going to build in St Thomas for these special needs kids and their families. And then I'm going to call the province's child advocate and tell him what CCAC's trying to do." See why I like her? Feisty. I have a lot of respect for that woman. Apparently I was the third parent to come in to her office that week (!) and tell her that CCAC was trying to cut their services. Stupid government mandates that take priority over people's health and lives. ARG!!!!!!!!!!!!!!!!! (If you're interested in getting a little political here, feel free to call your MPP and/or the child advocate about this situation, and feel free to mention Asher specifically. Direct him/her to this blog, if you want. I don't mind. Wink wink) and a funny little end-bit here to the CCAC episode: the case manager called me again on Friday morning last week, and said, "So, dr b called me this morning and we had a very, um,... interesting conversation." I said, "Yeah, I bet you did!" (Oh no, I'm not still ticked). She said, "So, we will be leaving Asher's care the way it is for the next few months, and then in March when we have our conference, she will be joining us to provide us with her perspective. Is that ok with you?" I said, "Absolutely, that's perfect. The only person who knows Asher better than her is me, so I'm quite happy she'll be there." "Good," said the CM, "but now I will need to make one change to Asher's care-" (did you catch that? "We're keeping things the way they are" and then "I have to make one change." Hmmm....) "-and change his services to RPNs instead of RNs." I replied, "We already get RPNs. They share with the RNs." "Well," said she, "I have to change it to only RPNs." Now, again, you've met me, right? And you're aware that I am stubborn and determined, right? And that I will do anything for my boy? Yeah. I said, "No. We're going to have one RN a week. And I want V---." "Um, ok. I can arrange that." Hence my status line last week on Facebook: "Heather is shouting from the rooftops: "VICTORY IS MINE!!!" so, yeah, CCAC sucks, entirely political, not caring about people's health. Esp medically fragile children's health. And in the end, I win. She had no idea who she was dealing with when she called me and tried to cut our services.

Doctor's appointments and mystery vomiting: this will be quick. Asher was vomiting for some reason. For almost 2 weeks. Don't know why. No one could figure it out. I even took him to emerg for it. it started a few days after he was discharged last month and lasted WAY too long for anyone's liking. But, long story short, he didn't drown, didn't even aspirate, and we have all learned a valuable lesson: when you mix pedialyte with pediasure (formula), it curdles. Seriously. Yuck. So don't try to do that. Makes kids barf. And makes moms unhappy. So don't try it.

and Asher's 2-year check-up was on Thursday, which went generally well. He's hitting milestones and growing and speaking at his level and learning new skills all the time. His newest skills: doing up his jacket. I have to start the zipper, but if then he can pull it all the way up. J and when you think that Bram only recently learned how to do up his own coat, this is AMAZING! And his other new skill starts off every morning now: he stands up in his crib, unhooks the feed set from his tube, closes the cap on his tube, and throws the feed set across the room. I didn't know he could do this until the morning I heard something fall on the floor but thought it was just a toy, so I left it. but imagine my surprise when I got up to find a river of formula running across my floor (he hasn't figured out how to pause the feed yet), and his tube closed. Yeah. And by now I've actually watched him do this, and it's quite a sight! That, gentle reader, is one smart toddler! They learn what they live, I guess, and this is what he lives with, so I shouldn't be so surprised, but still! It's awesome! J

ok, I'll stop now. I think that about covers it for now. I'll try to get back to posting more often, but apparently I have to work on my time management skills (gosh, maybe I should get night nursing, and then I can blog at 3am, and stay all caught up. Grr, CCAC, grr). Ok, I'll be good. And I'll try to be better at this posting thing now. I'm sure we're all getting tired of the novels, and would much prefer little blurbs instead. I can't make any promises (you know me too well for that! LOL), but I'll see what I can do. Talk to you later! J

Asher in his not so happy place

Some of you may recall that the other week, Asher had his first ear infection. Also at the time, he had his first tube infection of the season. Oh, yeah, delightful. You may also recall that he was prescribed a course of Keflex, an antibiotic used to treat ear and tube infections.



Ok, so, funny story: we're in immunology on Wednesday, talking with the fellow. I had already told her about the ear infection the week before. Well, later in our uber-confusing appointment, she was assessing him, including checking his ears. She said, "so, the infection was in the left ear." I said, "no, right." She said, "no, left." I said, "no, it was in the right." "well," said she, "his left ear is pink now." Ok, so the story's not so funny. Not at all, actually. Anyway...



I've been keeping an eye on Asher over the last few days, checking for signs that the infection was getting worse. I've also been keeping an eye on his tube site, because, despite a week of antibiotics, the infection had not, in fact, cleared up. And when we checked it out yesterday, it was, in fact, worse. I'm sure you can guess where i'm going with this.



Or rather, where i went this. And with Asher.



That's right, we went to emerg. But i decided to take him in to London today, instead of St Thomas. For one thing, they know Asher better in London, and since i have no ink for my printer at the moment, i don't have a sheet listing all of Asher's issues and quirks. And, i figure, this is exactly what happened with Asher's tube back in January, and they handled that in London. So, i figure, we'll go there today.



We were there all day. It turns out that both of Asher's ears are infected now, although the left is worse than the right. Also, the tube... yuck!!!! It is the yuckiest, ooziest, crustiest, reddest, smelliest, most disgusting tube site i have seen in a very long time. Disgusting. So they swabbed it and sent it off for a culture.



And that took hours.



So, literally, we had to sit around in emerg, waiting, for about, oh, 5 hours or so.



Ok, the waiting isn't so shocking. But i was not expecting the swab/culture route. I thought they'd look at it, smell it, write a prescription, and send us blithely on our way. But, of course, that would have been too easy. Especially considering i hadn't eaten breakfast before going, so i was starving. Ah, well, at least i got to read some 8-month-old fashion magazines while we were there. And Asher watched Thomas and Wiggles DVDs. Which meant that i got to watch them, too. That was a fate worse than death cruel and unusual thrilling, let me tell you.



Anyway, they got the culture back, and it's the same bug he had on his tube back in January. So, they prescribed the same antibiotic: Cipro through the tube, and Fucidin on the tube site. And then they sent us blithely (and hungrily) on our way.



Well, we got home, hooked up his feed once more, and all was working well. Then, it was med time. So we gave him his Cipro. Or rather, we gave him part of his Cipro. You see, the tube f***ing clogged half-way through the dose!!!! Are you kidding me?! I can hear you say. Oh, my friend, i wish i were, believe me. And it's not just clogged, it's PLUGGED!! Nothing is getting through there right now.



well, i did the usual de-clogging routine. Water in a small syringe. Nope. So, saline in a small syringe. Nope. 
Saline with a smaller syringe (increase the pressure). Nope. It's plugged. Fantastic.


So i just talked to the Interventional Radiology nurse-on-call, and, as it turns out, they can't get any staff in tonight. Which means that we have to wait. Until 8:00 tomorrow morning!!!! Which means, you'll note, that Asher will be without food until about 9:00 tomorrow morning. After getting about 1 hour of his feed since noon today. And Asher gets nothing by mouth.


now, i know there's doctors reading this, and i'm sorry if you're offended. I'm tired, i'm stressed, and i'm ticked off that we just spent all day in emerg and then we have to turn around and go right back... first thing in the morning. Arg. So please don't take my bitterness personally. But seriously!!!!


I think i need to stop this post now before i get really ticked off. I need some coffee. From my happy place. I'll be back. Toodles! J

So i says to her, i says, “You’re lovely.” But then later, i was confused. (go get a coffee, come back, and settle in. it's a long post.)

Well, today we had to go to SickKids. Honestly, sometimes i love that place. Without them, i wouldn't have Asher. we went today for a sedate echo. Oh, yeah, and immunology. But i'll get to that in a minute. First, cardio.


The echo went well. The chloral hydrate (sedative) kicked in while the nurse was still flushing it down the tube. She said it would take 30-60 minutes for it to take effect. Try 30-60 seconds. I'm not kidding. While she was doing the flush to get all the med in, asher was starting to weave on the bed and his eyes were glassing over and he actually tipped right over. He would have fallen right off the bed if we hadn't been standing right there. Anyway, asher got pretty belligerent, fighting the med for about 20 minutes, but then he just sort of stopped fighting, and within minutes he was hooked up to monitors and the tech had already started the study. I don't think asher even moved the whole time. Then the fellow took some pictures and then the tech took some more. It was thrilling. I read my book (Eat Pray Love by Elizabeth Gilbert, in case you're curious. I'm really liking it. Maybe i identify or something. But i digress.) then they did an ECG. Then we waited for asher to wake up. Yup, we drove to Toronto, arriving shortly after dawn, to sit in a dark room and watch asher sleep. Yup. Nice.


Well, he did wake up, and he was not happy. Belligerent, once again. Notice i'm not saying irritable. That's a cardiac symptom, or something you'd expect from waking a toddler too early from a sound sleep. Nope, belligerent. The dictionary defines "belligerent" as not a happy drunk, one prone to yelling and causing a disturbance and rudely demanding his own way. And he wasn't allowed to walk, because he was so dizzy he was tipping over even when sitting still, and smashing your head on a concrete floor, even when surrounded by medical people, is never a good idea. So, instead, he got strapped down in the stroller and got walked around the cardiac clinic while we waited for Dr Russell.


Well, she came in, sat down and said...



"everything looked good on the echo." Yay!



"if you're happy doing clinic visits in London now, i'm ok with that." Yay!



"i don't see a need for a cath right now. I'll order it for the fall, and then the fontan the following spring." Wha-?!



"how do you feel about that?"



So i says to her, i says, "You're lovely."



That's right, folks, pre-fontan cath next fall, which would be 2009, and then the fontan in the spring, which would be 2010, which is A YEAR AND A HALF AWAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!



I did mention to her, however, that i'm a bit worried about waiting that long. Not that i want my boy to go in for open heart surgery any time soon, but at least he's strong right now. Wouldn't it be better to do this when he's strong? He doesn't usually do so well in the winter/spring, and that weakens him, so i'm a little concerned about his strength going into the surgery. She agreed that that is a good point and something to consider, but she's still going ahead with next year for the cath. if we need to change those plans, we can. And you know, i'm cool with that. Really, i think i'm just freaked out about post-fontan stuff. Even the arch re-construction, complete with circulatory arrest, doesn't bother me nearly as much as all those potential post-Fontan complications (eg, PLE. Disgusting, and only occurs post-fontan. Basically, it is monster diarrhea that eliminates protein from the body. Nice, eh?). rationally, i know that none of these things might happen, asher may sail through it all with flying colours and not need a new heart for many, many years to come. But still, you know, i'm a mom. I worry.


But, at the end of the day, we don't have a cath for a year, surgery for a year and a half, and we didn't even get a next appointment date before leaving! See? She's lovely. J



Ok, so that's cardio. Delightful. Now on to immunology for our 12:00 appointment.



For which we waited 2 more hours.



In a tiny, tiny waiting room.



That was very busy.



And noisy.



And full of people.



Who stared at my drunken baby.



And doctors who would pop out of their conference room once in a while to make jokes about husbands and wives.



To me.



and ed.



Yeah.



And that was the fun part.



Then they called us in.



While i was down the hall in the ladies' room.



Because that's when they call you.


When you're in the loo.



Ok. enough fragment sentences.



So, we go in and talk to the fellow. Again, we're on the subject of DiGeorge Syndrome. Now, personally, i can see why they'd suspect DiGeorge. On the surface, it looks suspicious. Severe heart, wonky kidneys, t-cell deficiency, feeding difficulties, history of low calcium. But... when you actually look at asher's conditions and compare them to the list of DiGeorge issues, there's some significant differences:

1. Severe heart, yes, but Asher's heart is hypoplastic, not truncated. So, close, but wrong.
2. Asher's kidneys are underdeveloped, but not malformed.
3. Asher's feeding issues are mainly due to vagus and laryngeal nerve damage. Doubtful that it's congenital.
4. History of low calcium, yes, but not anymore. Now it's too high. The low levels only happened after his diagnosis/hybrid and Glenn.
5. Asher actually has Chromosome 22q11. (if you're not a geneticist, that will mean nothing to you. So don't worry if you have no idea what i'm talking about here.)
6. Facial deformities? Um, have you seen asher? I don't think so.
7. Low IQ? Again, um, have you met asher? I'd wager he's my smartest child. And remember, i have a 6-year-old cardiologist upstairs right now, and another boy who can talk for hours about trains and not repeat a single bit of information. He could write a book, that boy... if only he could write... or hold a pencil, for that matter. But again, i digress.
8. If, at some point down the road, asher develops a serious mental illness, it will more likely be attributable to a lengthy family history on both sides of his family tree, and not linked to any other congenital issues he has.

The only issue asher seems to have that screams out "DiGeorge! DiGeorge!" (at least to the immunologists in Toronto), is his t-cell deficiency. But, they said, that hasn't really been a huge issue, because most of his infections were viral and not cellular and the only one that concerned them was the sepsis but other than that he's never had severe diaper rash, so it could just be that the control they compared him too was uber-healthy, so that might not be an issue but let's do a bunch of bloodwork that genetics has ordered even though they're not seeing him yet and has anyone discussed VECTOR with you or have you heard about it? He might have anal atresia but that doesn't mean his anus is closed just missing so he could still poop but he's constipated and that fits with anal atresia too even though it might still be patent. (get out your medical dictionary, folks. Look up "atresia." Now look up "patent." You see why i was starting to get confused here.) and something about his vertabrae, has anyone looked at them? And has he ever had a reaction to any vaccines? Wha-? Does anyone see the connection here? If you do, please explain it to me, because i just don't get it.



Ok, i'm admitting here and now, once they started talking about the different infections asher's had and how some are immunology and some don't count, they lost me. i know why. They didn't dumb anything down for me. And that's understandable. A mother comes in and knows a TON about a syndrome her child may not even have, and they're going to assume that that mother knows a lot more stuff. Which i do. Unfortunately, that "a lot more stuff" is not, in fact, immunology, but rather cardiology and cardiovascular surgery. I read up on DiGeorge because of the connection with the heart stuff. (notice that i know the difference between truncated and hypoplastic defects. And then i wonder why people suggest i go to medical school. But i can't. I mean, the only thing i'd be interested in pursuing would be paeds cardio, but i couldn't do that, because then i'd know. I mean, i know that i already know, but then i'd really know, and i just don't want to know, you know?) ok, so doc thinks i know more than i do, so she's not dumbing anything down. And she's differentiating between types of infections. I know viral and bacterial. I know t-cells fight bacterial infections, and play a role in transplant rejection. There you go. That's the extent of my knowledge on immunology. That's it. Oh, no, wait, i lied. Sometimes, people need antibiotics to fight infections. But only bacterial ones. Meds can't help with viruses. And, um... sometimes, you get vaccinated. And some of those vaccines are "live," but i don't know which ones, or what that means, exactly. I have an idea, but if some are live, that means some are not, and if it's not a live vaccine, then how can it be effective? You see? Immunology is not my bag! So why couldn't she just pretend i don't know anything and talk slowly and clearly and monosyllabically? Because, my friends, that would be too easy.


Ok, so then they wanted to send us for bloodwork. And then they didn't. But they might. Nah, it can wait till our genetics appointment. and here's the req, if anyone else wants bloodwork done. but not in london. must be here. but they can wait. and yeah, the tests we've been talking about for the last 5 minutes, that you were starting to understand? Yeah, ignore those for now. We can't do those until he's 2, anyway. So, maybe we'll wait a few months. Besides, genetics will just want more tests done, and those can't be done till he's 2, although they may want them now and you will have to come here not go to London to see genetics there nope gotta come here and we want to test him for DiGeorge even though the last tests we did were negative and we've done the only test we can do but genetics blah blah blah now dad go take your wife out for a nice lunch i'm sure she likes seafood that would be nice see you in a few months here's the NP with your appointment card.


Did all that confuse you? Me, too. 


Wow, this is really long, so i'll stop for now. All in all, a mixed day. Great news from cardio. I can't tell if it was good news from immuno. I'll let you know when i figure that out (or find a doc who can translate for me). In the meantime, have a great rest o' the week, and i'll talk to you later! J