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

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

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

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

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

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

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

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

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

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

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

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

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

talked to the doc...

and there's good news and bad news.

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

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

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

how we got here

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

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

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

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

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

i called dr b.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

but it's still really looking like sepsis.

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

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

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

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

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

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

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

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

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

not by a long shot, actually.

it's looking like sepsis.

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

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

we're admitted.

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

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

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

Asher Update

Heather asked me to update her blog.   Looks like Asher is being admitted with suspected migraine and possible dehydration.   He's really lethargic, no appetite and his bp & sats are much lower than his normals.    Asher has suffered migraines before and has an upcoming consult with neuro to look into it more.   If you've ever had a migraine you know how awful they are and I imagine they are a million times worse for a small child.   Please keep them in your thoughts and prayers.   Pray that Asher's bp comes up and that he's back to playing and chasing his brother and sister really soon.   Also pray for Heather as she watches her sweet little boy endure another admission and all that goes with it.

Thanks

Wendy

i don't really have a pithy title for this post yet. but no worries. when i think of one, i'll add it. (wow, this title amuses me! ROFL)

i'm changing things up a bit today with this post. no asher updates today, because, well, he's fine. at least nothing update-worthy, which is a delightful change, if you ask me. no, today's post is in a different vein (lol) entirely.

over the last few years, i have been asked many times, many many times, too many to count actually, how i do what i do with asher. people tell me all the time that, if they were in my position, they wouldn't be able to do it. to handle all the admissions and appointments and trips to emerg and surgeries and symptoms and scares and the knowledge that this child may not make it. the unpredictability and the constant upheaval and broken hearts and stress and strain and exhaustion and fear. the uncertainty and unknowing of it all. "how is it," i have been asked, "that this woman is a basket case because her baby had to get a needle, and yet you have to pin asher down for IVs and consent to horrifying procedures and you're still sane and even happy?" my answer, dear readers, is this:

Zero Circle

Be helpless, dumbfounded,
Unable to say yes or no.
Then a stretcher will come from grace
     to gather us up.

We are too dull-eyed to see that beauty.
If we say we can, we're lying.
If we say No, we don't see it,
That No will behead us
And shut tight our window onto spirit.

So let us rather not be sure of anything,
Beside ourselves, and only that, so
Miraculous beings come running to help.
Crazed, lying in a zero circle, mute,
We shall be saying finally,
With tremendous eloquence, Lead us.
When we have totally surrendered to that beauty,
We shall be a mighty kindness.

                                           ~ Rumi

asher's condition has left me dumbfounded, "unable to say yes or no." if i say yes, it means that i enjoy this, that i'm ok with it, and that i'm happy my baby has to go through all this. if i say no, i would be fighting this reality, waging an unwinnable war against something i cannot change. i have learned over the years the wisdom of buffo's advice: "don't try to control what isn't in your hands to control." so i just go with it, not fighting, just doing what i have to do, signing what i have to sign, going where i have to go... and you know, it's true: it's like there has been some sort of cosmic stretcher that gathers me up and carries me. that's how i get through.

i don't know how long i'll have asher. i'm really not sure. frankly, he should be dead 15 times by now, so who knows, really. he could go next week; he could bury us all (my money's on the latter, knowing him, but again, who knows). and so i have accepted that i have today. only today. so i embrace that. all i know is that there is a plan for this boy, and he won't go anywhere until it's done, so i'm trusting God to take us where He wants us to go.

when i asked God to heal asher, and He said no, that was not the miracle He is going to do with ash, i said, "ok, but You made him this way, so You sustain him this way." and all i can do now is to trust. trust God, trust the docs, trust my instincts, trust asher. really, that's all i can do. i have let go of all of my plans for this boy (not my hopes, mind you. just my plans), and i simply trust. God has the plan, asher has the fight, the docs have the skill and know-how. me, i just watch for symptoms and take him in when he needs to go and give him his meds and do what i can to keep him alive for a little bit longer. but i'm simply doing what i need to do; i have no real say in any of this. if i did, asher would have a left ventricle and an aorta, and they would be healthy, and they would be his own. he would have no scars, he wouldn't know what a stethoscope is, and he would be scared of blood pressure cuffs and sat probes. and i would still know nothing about hearts, having never even heard of paediatric cardiology. but such is not the case.

so i've let go. when it comes to this kid, i am helpless, dumbfounded, unable to say yes or no. i say simply, lead us. and i have surrendered to this beauty, even when it isn't so beautiful. because it is all somehow even more beautiful in those moments, because it is in those moments that i get to see something more. i peak out the window onto spirit, and see the miraculous beings come running to help. docs and nurses and RTs and surgeons and anaesthetists and therapists... and angels sent running to asher's side by the thousands of people who pray for him, and by the One who has plans for this kid, plans to prosper him and not to harm him, plans to give him hope and a future. and i get to watch all of this happen every. single. day. and all i have to do is hang on for the ride.

i hope this rambling post makes sense to you. it's really so difficult sometimes to put into words how i deal with all of this. but it's so simple: i don't get a say, so i do what i have to do, and trust. that's it. because that's all i can do. i can't change any of this, no one asked if i was interested in being a heart mom. i was simply handed this broken-hearted boy and told to hang on. so i do. and i'm very, very glad i do.

ok, seriously, you HAVE to read this book!!!!!! (THE WET ENGINE, once again)

When he was born, with his missing chamber, and we thought he might die any day, I loved him inarticulately, and raged at his Maker for making a broken boy, and many a night I sat rocking with him and thought about grace; what grace was this, to build a big pink boy with the bright face of an apple and a heart too weak to drive him through boyhood? A cruel gift of life and death at once. Now he is repaired for a while, a few years, a boyhood, before he needs a man's heart, and I have learned to shut my mouth and learn about grace: the deft grace of the doctors who edited him, the open grace of the thousand people who prayed for him in churches and temples and stupas and chapels and novenas, the grace with which he carries the body God gave him and Dave [Liam's cardiologist] edited and surgeons carved in a way dreamed up by le docteur Francis Fontan.

I rub the peachfuzzcrewcutted head of my boy when he wanders past me in the kitchen, and I hold him in my arms when we sit on the couch in the dark marveling at ogres and orcs, and I rub his back at night, cupping his round face in my hand, whispering Gaelic in his ears, holding his hand when we cross the streets, rubbing his legs and feet when he cries at night from growing pains, feeling his bicep when he flexes to show me he is more powerful than his many heroes, because there is always a jolt of joy in the touch, even when I am furious at him; because when I touch him there he is, and somehow my body never forgets the fear of the loss of his body. There's some kind of electric magnetic thing at play - an electric love in his heart and mine.

"Without touch, God is a monologue, an idea, a philosophy," wrote the late great American mystic Andre Dubus. "He must touch and be touched... in the instant of the touch there is no place for thinking, for talking; the silent touch affirms all that, and goes deeper: it affirms the mysteries of love and mortality."

To which I say amen and then amen and then again amen.

this is from pages 69-70 of The Wet Engine, by Brian Doyle. it's a brilliant book, and this heart dad writes so beautifully of what it's like to live with and love and raise and cherish and fear and nurture a single ventricle kid. it's all true. every word of it (except the word "repair" in the first paragraph; there is no repair for these CHDs). every moment he describes, every emotion, every thought, every fear, every hope, every prayer... this is what it's like.

and i wouldn't change a single second of it. honestly, i wouldn't. especially the good ones.

and especially the bad ones.

because, in those genius words words i hold imo pectore,

"one way or another, he has always found his way."

to which i say amen and then amen and then again amen.

yes, it's been a while, and yes, there's QUITE an update... don't worry, some of it's GREAT!!!

oh, my sweet little man...

i don't remember if i've mentioned this before, but a few weeks ago, probably in the midst of some boredom, i decided to read over asher's blog here, starting at the beginning. and i got to the posts from after the coles in May 2008. now, we all know my habit of telling you all about clinic visits, including vitals, height and weight. i've always done this because i know there are some readers who would ask me anyway, so i just post it here and then no one has to ask me. (teehee) i had no idea it would be such a handy record...

it turns out that asher gained less than 1 kg between the coles 2 years ago, and the fontan in early march. he was 12.2 kg in june 2008, and weighed 12.8kg at the fontan pre-op. that's about a 1 lb difference for my non-metric readers. 1 lb. in 2 years. yeah.

i discussed this with his paeds a few weeks ago, and she was also somewhat concerned. she offered to set us up with a dietitan, but really, there's nothing she can tell me that i don't already know, so we decided on just periodic weight checks with the doc. that works. why waste resources, right?

so, on wednesday, i took asher in for his weight check. he has actually gained: he's now up to 13.6 kg. this was great! a huge gain in two weeks! wonderful! but he still has a loooooooooong way to go to catch up. after the coles, asher was around the 80th percentile for weight. he's now around the 20th. that's quite a drop. but doc's awesome, and gave us some great tips and ideas for fatty foods to get this kid back to a better size. this includes milkshakes with pediasure plus at bedtime, lots of cheese, homo milk instead of 2%, polycose added to just about everything. we're on it, and we'll get him fat again. so no worries... well, i am worried that this will also end up fattening me up... but polycose can be added to only asher's dishes, so hopefully the other kids and i won't put any extra weight on in the process.

let's see, what else happened wednesday....? hmmm..... oh, yes.

I REGISTERED ASHER FOR SCHOOL IN THE FALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

junior kindergarten. already. all day, every day. can you believe it??? i can't!! he is soooo excited! he keeps saying, "i a big boy. i go school! i ride the bus wiff brammy and blivey!!" that's right, folks, my littlest man will be boarding the school bus in september with his brother and sister and heading off to school! oh, sweet normalcy!!! hard to believe he's at this point already. it seems like just yesterday he was a tiny babe, and now he's a big boy!!!! hooray!!!!!

but...

and why, oh why are there always "buts" in asherland??

dr b (paeds) and i were discussing this on wednesday, that i would be registering him for school. she said that she would call the school that afternoon and talk to them about asher, because they're going to need a heads-up.

• asher might be somewhat delayed socially, having spent so very much time in hospitals, isolated from other kids.
• asher will require a modified phys ed programme. he might not be able to participate for the full time, due to fatigue. but he will also require someone to monitor him, because he won't stop when he needs to, so someone else will have to pull him out.
• they need to know about his colour wheel: all those glorious shades of pale, blue and grey that he is wont to turn without warning, and often for no apparent reason.
• asher will have activity restrictions, because he cannot participate in anything that involves electricity, magnets, or activities that could result in a bump to his stomach.
• they need to know about what symptoms to watch for.
• they will need to know what to do when he shows symptoms, or gets bumped on the head (or shows up with lots of bruises), or shows signs of pacemaker malfunction.
• he may not be fully potty-trained when he starts school due to meds. we're working on it, but he's spent his whole life on diuretics and will be on them for the rest of his life, so it's a challenge. he has made some progress, but it's hard. (i'm just glad his no longer on diuretics and laxatives! that would be impossible!!!)
• they need to be aware that asher may have some emotional difficulty with school. because sometimes these kids can develop some symptoms of post-traumatic stress disorder (PTSD)...

which leads to the next part of this update.

and this is the heartbreaking part.

a couple weeks ago, you may recall, i posted that asher had started crying at naptime and told me he was scared of doctors. this happened at home. when he was fine. and there were no doctors around.

i mentioned it to dr b on wednesday, and she said, "yeah, i remember that." so we talked about it for a couple minutes, and she told me to call KW.

a therapist.

so this morning, asher goes for his first play therapy session.


my heart hurts to think about this. and i can't help but think it's partly my own fault that he's in this situation... well, sort of. maybe i'm just afraid he blames me for everything. lately, he's been daddy's boy. he's even told me a few times that he doesn't love me. just daddy. (mind you, two minutes later he'll look at me and say, "mommy, guess what." "what?" i say. "i love you." awwwwwwww!!) but still. i am the one who takes him to clinic appointments. i am the one who takes him to emerg. i am the one who pins him down for bloodwork and IV starts. i am the one sitting at his bedside in the unit, on the ward, in emerg. i am the one who rips him away from his brother and sister and toys and kitty and everything he loves to take him to the hospital or a clinic. i do all this because i love him and want him to be as healthy as possible, and i want him to stay with us as long as possible, so i do what i have to do... but all this has hurt him so badly. he's been through so much, and i was right there for all of it. sometimes i feel like i've failed him somehow; i've protected his body, but what about his spirit? i'm supposed to be the one who protects him and stops people from hurting him. instead, i pin him down while they poke and prod, and i hand him off to total strangers who carry him off to the OR...

i'll post later and let you know how his session goes this morning. but i guess this is a huge prayer request for him. we've done everything we can for his heart... but in the process, we hurt his heart. sigh. please pray for healing for him. it's such a hard journey he has had in his life so far, and it likely isn't going to stop anytime soon, so please pray for him. thanks.

Imo Pectore

When the pope makes a decision about the naming of a cardinal, but declines to name that new cardinal publicly, because to name him publicly would bring unwelcome attention, which is to say that the government or regime or junta or dictatorship or commissariat or executive committee of the nation in which the new cardinal resides would be even more interested than usual in stilling the heart of the new cardinal, for fear of his increased influence on the hearts of the faithful in his country, then the pope keeps the new cardinal's name imo pectore - in the innermost recess of his heart. Other than His Holiness the Pontiff of Rome, no one knows how many more cardinals there are in the world than we think there are. Their names are revealed only after they die. Many times in the long history of the Roman Catholic Church the Pope has died suddenly without having the chance to inform anyone of the cardinals he holds in his heart; so when that particular pope's heart ceased to beat, the names of his secret cardinals flew from their muscular home and vanished. The more I think about this the more riveting it is to me. Lesson: there are secret words in every heart. For almost ten years now I have had five secret words in the innermost recess of my heart, and I reach in there sometimes and unpack the box they're in and inhale their redolent spice, always fresh, always restorative, always miraculous water to a thirsty man: he should do very well. I don't forget those words. Those are good words.
                                           ~ Brian Doyle, in The Wet Engine

the words i hold imo pectore: "One way or another he has always found his way." those are good words, too.

(click here or on the title of this post to go to amazon to order your copy of this amazing book.)

please pray

hey folks! just a quick post tonight... and it's not about asher, because he's fine. he's got a cold, but he'll get over it. no worries. anyway....

i need to ask you, once again, to pray for asher's little friend brigid. she's not doing well. she's back in hospital with sepsis again, but a different bug than last time. this one is also from her gut that has been picked up by her blood. they've got a plan in place, but...

allison has had some pretty heartbreaking conversations with the docs, and things don't look good for brigid in the big picture. she's got some pretty heav-duty, complex issues going on, and well...

just pray. or whatever you do, please do it, and do it lots. this is a wonderful family, and brigid is such a sweetheart, and allison is a lovely woman and a great mom and honestly, one of the strongest, smartest people i know. i don't even know what to ask that you pray for... maybe give this a whirl... prayer when you don't have words. whatever you do, please do it now and over the next while. this is a very serious condition Brigid has, Allison is losing hope, even though she's doing amazingly well, but still... it's not looking good for her little girl right now, so please please pray. thanks. <3

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.

We Heart Recipes

another heart mom (wendy, chris' mom) and i have started a blog together (yes, i know, i have a lot of blogs. LOL). it is a recipe blog called We Heart Recipes, and we post heart-friendly recipes (most of the time; there will be the occasional comfort-food recipe, as well). we'll be posting fairly regularly, not only the recipes but also any conditions it may help (i just posted the fat-free creamy pasta sauce i made for asher's chylothorax). there are some great links to check out, and our boys' stories. check it out, and check back regularly.

and for the record, the cappuccino at the top is decaf. ;)

you've gotta check out this blog! (click the title of this post to take you there)

i have a link to this blog on the side bar (under "heart journeys") but i wanted to point it out to you tonight specifically. the blog is called Adventures of a Funky Heart! and it is written by a man in his 40s who is a CHD survivor... he was born with tricuspid atresia (the valve between the right atrium and right ventricle is closed... similar to asher's mitral atresia, but on the other side of the heart, and creating similar, but distinct, issues).

he's quite incredible, actually, working constantly to raise CHD awareness and to keep his readers abrest of the latest developments in the world of congenital heart disease and surgery... as well as a look back at some significant developments in the treatment of CHD. he also reaches out to his readers; in a recent post, he asked is there was anyone who had, or whose child had undergone, a one-and-a-half ventricular repair.

Funky Heart is a great blog. he updates regularly, his information is very interesting (especially if you're a heart mom, but i'm sure someone else out there might find it interesting, too). he included a link the other day to Dr John M, who is a (adult) cardiologist and electrophysiologist who writes about heart health, cardiology, and healthy living. also a great blog, also included in the sidebar here.

i highly recommend you check out these blogs, if you are at all interested in learning anything about wonky hearts. steve at funky heart is especially inspiring, given that he has CHD himself, and that he works so hard for the cause.

my poor little man...

he's been through so much over the last few months... well, actually, he's been through so much over the last 3 years and 5 months.

and he's gone through it all with so much joy and grace and laughter and beauty and strength. he rarely complains, only in the moment, but once the IV is in, or the blood is sent off the lab, and he wakes from sedation, or the feeding tube is in place... he's back to his usual self, playing and chatting contendedly and filling everyone around him with hope and light.

and he still does this.

usually.

yesterday afternoon, he was tired (ok, i was, too), so we went upstairs for a nap. we climbed into bed, pulled the blankets up... and he started to cry.

"what's wrong, sweetie?" i asked, thinking it was just tired tears.

"i scared, mommy."

i'll admit, initially i thought it was fear of monsters under the bed or something. so i asked what he was scared of.

"dokkers."

and my heart broke.

he is now scared of doctors and nurses and hospitals and, well, anyone who shows up with a stethoscope or a name badge on a lanyard. he has been through so much, especially in the last few months. and now, of course, he's old enough to understand what is going on, but not old enough to understand why it's happening. he knows he's covered in scars and zippers. he knows he has a pacemaker. he knows he sees medi-types too often. just this week, for example, just this week he has been to emerg and his paed's clinic. just. this. week.

and this is a good week.

i held asher as he fell asleep. and while he dozed, i moved to set the alarm, in case i fell asleep, too. i needed to meet the kids when they got off the bus. i moved a few inches over

and asher woke up

screaming

"don't leave me, mommy! don't leave, mommy! stay here!! don't leave me!!!"

and my heart broke all over again.

so i just held him, as he cried, as i cried.

look what i got!!!!

that's right, folks, i'm going to spend the next few days learning how to read and interpret ECGs. :D

i <3 justina. 'nuff said.

asher's new favourite song. enjoy!

on a happier note...

only 3 days left of fat-free. which means...

friday is fat day!!! :) it's funny that i'm so excited about this. i don't usually cook high-fat; i think i just don't like being told that i can't do something. yes, i'm a bit of a rebel, i'll admit.

anyway, to see what we're having for supper on friday, click here or on the title of this post. and do note the amount of fat per serving. part of me wants to barf when i see it, but part of me just can't wait for friday.

hey, the kids aren't here for the next couple of days... maybe i'll give it a trial run. ;)

oh, yeah. some of you may not click the link. so i'll just tell you what the recipe is for. TACO PIE!! WITH GROUND BEEF AND CHEESE AND SOUR CREAM AND MORE CHEEESE AND TORTILLA CHIPS AND MORE CHEESE!!!!

for deirdre, in hopes that you'll read this before wednesday...

what timing. i mean, really, what ridiculous, back-stabbing timing asher has...

i was looking forward to seeing you on wednesday. now that the fontan and the bradycardia are behind us, i was going to regale you with tales of normalcy. not our "creeping normalcy," but actual, honest-to-goodness normalcy. i've lost the extra pounds i put on in the hospital, and i've started working out again, and physically, i feel great. sure, i'm still exhausted, but that's ok. i can nap with asher in the afternoons, and i can go to bed with the kids now, because asher doesn't get meds at midnight anymore, just at bedtime. the kids are happy to be home, and they're playing so well together (usually), and asher is quickly re-learning how to share and play with others again. (he'd been on his own - other than me - for 7 weeks, so he'd gotten used to playing on his own, and all his toys were only for him, and he didn't need to ask bram for that train or car and blithe didn't take his toys for her barbies... but he's adjusting.) we've only got a few days left of the fat-free diet, but i've discovered that fat-free cream cheese makes a great cream sauce for pasta, especially when you throw in some spinach and sundried tomatoes. i've done dishes and laundry and tidied up. i've gone grocery shopping. i have spent time with my friends, and i've read a couple cheesy romance novels and on friday night i went to see my friend's band play in london. i have a job lined up, just waiting for funding right now. i was planning on returning to my spirituality group and getting started back with the music team at church. money's tight, but it always is, and we get by. last week i started prepping the garden for planting, and there's garlic coming up from last year, and i think i want to grow tomatoes and zucchini and herbs and spinach this year, maybe some hot peppers, too. i had those a couple years ago and they were great. and today, asher and i were working on potty training, because he's "a big boy now" and "big boys go to da baffroom" so asher "not need pull-ups anymore, just underwears." and he was doing so well. only one accident all day; my dream was that he'd be fully trained by the end of the week, since he's so determined.

i imagined sitting down with you and filling you in on our normal life, our stable life, and you'd be so happy to hear it all, and you'd be amazed at how asher could go from a heart barely beating anymore to completely stable in such a short period of time.

and then came naptime. and he was short of breath from climbing up the stairs. (he hasn't had that problem in months.) and once he fell asleep, he started sweating again. a lot. i could have wrung out his thomas pillowcase. and he was pale. very pale.

i called our paediatrician's office and told them what was going on, and please tell me she'll wait to see him tomorrow, because "other than the shortness of breath and paleness and sweating, he's fine and not distressed." (you might not get that, but please tell dr c that i was laughing while i said that, totally joking, because he'll see the humour, i'm sure.) she sent us to emerg instead. oh, why, God, can't a doc just brush off some symptoms once in a while? is that too much to ask?

so off we went. ash, me and the kids. (and yes, it's like i have two families. there's asher, and there's the kids. rarely are they grouped together. it's what this kind of life does to you.) we were greeted at triage by name and the nurses were amazed by his sats, which are now gloriously normal. he sounded clear, and even though he's pale today, they could all see how pink he now is. i joked that it's amazing what some oxygen and heart that beats can do for a kid. they didn't realize that he'd gotten a pacemaker, but of course, they know him, so they weren't surprised. we went to register, and the nurse there knew asher and called him by name. another mother looked at us funny, and i just said, "we're here a lot, can you tell?" and we laughed. we got into emerge, and another nurse came over because he'd seen asher's sats on the monitor and he saw asher's colour from the nurses' station and needed to see him for himself, figuring asher had had the fontan but he didn't know for sure, and he was really happy to see asher looking so well, and recommended that the kids try hot dogs with peanut butter, which personally i think sounds disgusting, but bram is all excited to try it now. delightful.

the resident came over and asked if asher had a fever, runny nose, cough, any cold symptoms, and i told her that if he did we wouldn't be there, because that's just a cold and he'll get over it. she looked at me weird. but i was honestly hoping to hear that i was paranoid, that it was humid today, and that asher is otherwise fine. so she ordered a chest x-ray and ECG, and i expected they'd find nothing.

the x-ray was ok. asher didn't want to go, but he hurried through his popsicle and was excited to show blithe and bram the fish in the radiology waiting room. he was so funny during the x-ray. they had to do each shot twice, because he moved during the side view, and during the straight-on shot, just as they were taking the pic, he put his hands up and asked if we were done. haha, no. but then we were, and he got some stickers for himself (thomas, percy and james) and got some for bram (thomas and james) and some for blithe (snow white). and i got to see his x-rays. i hadn't had the chance to see his pacemaker yet, so i wanted to see it. it's so cool! there's the generator, which you can fully see in the side-view pic, and i saw the leads attached to his heart. wow, i love hearts! and i noticed that there was no fluid accumulating, which is why they wanted the x-ray, just to make sure, even though he sounded clear. when the resident came to discuss it with me, she said it looked ok, and i replied, "yeah, i didn't see any fluid on the x-ray," and again she looked at me weird. but whatever. she's never met us before; she doesn't know that i look at all his x-rays in london, and i know what they should look like, and i can pick out the problems before they do.

then she pulled out the ECG. the one asher had helped with, putting some of the stickers on himself and pulling the leads off when it was done. i looked at the report, but it was upside down so i just ignored it, figuring it would look ok (a mom can dream) and we could go home because i'm just not used to how a fontan should behave.

and she said that there was a problem with his T-wave on a couple lines, that they were pointing down instead of up, and they're letting us go home because we're going to be following up with cardiology this week. (i was unaware of an appointment this week with cardio. we were supposed to be free until the end of the month when we went in for pacemaker clinic. so i'll be calling about this in the morning.)

so now there's another problem with asher's heart. and of course, it's electrophysiological. because i don't understand electrophysiology. so obviously that's what he'll go for. something i don't get. and now i'm tired again. wait, tired isn't the word. weary, i think, is better. and so completely sick of all of this. the fontan was supposed to be the end of all of this. and then when it wasn't, that's ok, because the pacemaker would take care of this, and we're done now, and we're going to have normal lives now, for the first time in asher's life, it was all going to be normal. and it was, for a few days there. a few wonderful, miraculous, unprecedented days. what a joke. it was just a tease. like a carrot dangled in front of us for a couple weeks, and just when i started to let myself believe that it was in our grasp, it was yanked away, out of reach.

and i could just cry.

and i just want to sleep.

i cried tonight when i was getting asher ready for bed. bram gave me a hug. blithe gave me her favourite stuffed animal to sleep with because i "need mufu more than i do, mommy," and she wants to sleep with me tonight, so that, if i start to cry, she can just hug me and it will be ok. asher just played and was oblivious to anything being wrong in the world.

and i resent him for that. i hate to admit it, especially publicly, but it's true. it's his heart that's breaking mine right now, and he just carries on as though everything is hunky-dory. that's his little gift, i guess. but tonight, in the mess of this, having been blindsided again, i'm having trouble with that. i'll probably feel better in the morning, and when i see you on wednesday, i'll probably be back to myself again, but for some reason, i wanted to write this tonight, while i'm feeling it, because it's fresh and you want to know what this life is like.

and this is it. honestly.

see you wednesday.

seriously?! you have GOT to be kidding me!! i thought we were done with this by now!!

i give up.

ok, i don't give up. but i'm sick of all of this, i really am.

today, asher was/is pale, short of breath, and very sweaty. i could have wrung out his pillow after his nap today, and asher is not a sleep-sweater. yeah. so i called our paeds, who of course...

sent us to emerg.

where i was hoping for (and expecting, to be honest), "mom, you're paranoid. he's got half a heart and it's humid out. this will happen. go home."

what i got instead was...

"there's an inversion in his T-wave on the ECG. you have an appointment with them on wednesday, right? we'll let you go home, but only because you're seeing them this week."

let me be clear here, i was not aware of an appointment with cardiology this week. i knew we are scheduled to go for pacemaker clinic at the end of the month, but this appointment was not on my calendar, and now i'm worried.

and scared.

and confused.

between the fontan and the pacemaker, wasn't asher supposed to be stable now? weren't we supposed to be done with all of this? where's the stability we'd been promised before the fontan?

oh, wait. i forgot. we're talking about asher, and he does things his own way.

and leave it to him to choose the one complication that i simply do not understand. at all. everything else about paeds cardio and CHD i understand, or at least can figure out if i think about it for a couple minutes. but this! electrophysiology is beyond me. i just. don't. get it.

a friend gave me a link to read about arrhythmia and the different waves on the ECG (click here on the title of this post to check it out), and it's helping... but, um... what do they mean by depolarization and repolarization? and when you consider that the T-wave has something to do with the repolarization of the ventricles after the contraction, i'm completely lost. and i can't find my favouritest book ever, my trusty, little red medical dictionary that (ironically) buffo (an electrophysiologist) told me i shouldn't have.

so right now, to be honest, i just want to cry. i thought this was all done with. and i thought the pacemaker was going to solve all these problems.

oh, wait. the T-wave was never a problem until today. of course! because why would asher show all his cards at once? that would be too easy.

and for those of you following my FB status lines this afternoon... ;)

defenders of the universe, Superash and Superbram. so, no worries, folks. they'll protect us! LOL (oh, yeah, this was still the night before the fontan... stupid blogger is messing up my attempts to post more than 2 pics at a time!! boo, blogger, boo!!)

UPDATE: just realized that not all my readers are on my facebook. (and why not? add me. seriously.) anyway, here's what you missed:
"heather is happy that superbram and spiderash figured out what was causing that earthquake in space."
"heather wants to reassure everyone, even though there is a giant basket hurtling toward the town from outer space, that superash and wonderblithe are on it. so, no worries. ;)"

note the blue line at the bottom... those are his SATS!!!!!!!! pre-fontan was 78-82%!!!! thank-you, dr caldarone!!!!!

post-fontan

note the colour of his toenails. not blue anymore!!! and you'll see why in the next pic...

some old pics, from pre-fontan and post-op. be prepared to be amazed!!

this van exploded across the street from my parents' house at 2am, the night before asher's fontan.

bram and asher, in their matching superman pj's.

asher, post-op in CCCU. note the colour. and the smile. and the flower that he specifically requested at pre-op, and was delighted to see on his bed in the unit (yes, he even remembered.)