so much has happened since the last post... don't worry, some of it's great!

this is what happens when i promise to post more often. God hands me more to post about. haha so here we go:

yesterday morning, i checked my email for the eighth time randomly, and there was an email from DC. you'll remember that she is working on a book about my littlest man. she and i have spent many hours talking about asher's journey, and now that that portion of the research is done, she wants to get in touch with some of the doctors and nurses who have "played an integral part in caring for asher (and you)." so she asked me who she should talk to... (sorry, christyne... that should say, "she asked to whom should she speak." teehee)

which docs and nurses should she talk to???? here's the list:

• dr b, our amazing paediatrician (and dear friend)
• dr russell, our toronto cardiologist
• dr j, in london emerg
• dr g, in london emerg
• dr p, who is actually a paeds metabolics specialist, but was the attending in emerg that first morning when asher arrived.
• pepy and buffo. because you can't tell asher's story without talking to them.
• dr b, the toronto cardio who did all of asher's stents, some caths, and has been the attending on the ward for a few HSC admissions
• the first cardio we saw in toronto when asher was 8 days old
• dr f, asher's nephrologist
• dr a, who knows us very well. he got asher the GJ-tube, we've seen him in emerg, he's been the attending on the ward during admissions, he has sedated asher a couple times, i dealt with him in his administrative role... and the list goes on. (those of you in the know are peeing yourselves right now, aren't you??? HAHA)
• sarah m, the nurse who was there when asher first came to london emerg, and whom we saw in emerg several times, and who did her NP training in the cardio clinic, and who is now the enteral feeding NP. yup, lots of dealings with her over the years.
• Jenny and Paula, the single ventricle NPs at sick kids. they had our number memorized and would return my pages with just a "hey heather, what's he doing this time?" and a sigh when i filled them in.
• vicky and elaine, our home care nurses. they were amazing. and i mean, a. ma. zing. asher and i would both be dead if not for them. they were excellent at their job, and truly cared for us. they're both absolutely lovely, and asher's story is not complete without their input.

as i finished up this email to D, i realized that in calling all of them, she would run into a problem: patient confidentiality. which is a good problem, don't get me wrong. i'd hate to think that any random person could call up one of asher's docs and get any and all information they wanted. so hooray for confidentiality!! on the other hand...

it does pose a problem to someone writing a book about my littlest man.

so, i have been chatting with some london docs and sarah the NP to let them know about the project, and that i have no problems with them speaking with D. i also emailed dr f just now, and i spent some time this morning speaking with vicky, as well. i also emailed pepy and buffo last night, and as i type, i am on the phone paging the single vent NP on call (not sure if it's jenny or paula. haha) so that's that issue...

but, in a tangentially related note... 

when i popped in to talk to dr welisch yesterday, she asked how asher is doing. "well," i thought, "i'm just waiting for him to get bad enough to bring in, but he does have some symptoms, and she did ask and she is his cardiologist..." so i told her. i told her about the flu the other week, and the paleness and blue spells and puffiness and irritability, and she said,

"well, why don't you bring him in on friday and we'll do a quick check." [insert wave of nausea]

and of course, we book the appointment, asher comes home from school, and...

he's hiccupping.

"so?" i hear you asking.

well! those "in the know" about wonky heart and gastro stuff know that hiccuping can either be nothing... or it can be something. well, not "something" in and of itself, but a symptom of... wait for it...

reflux.

(and angina, but we're not going there right now.)

at first i brushed it off. i mean, sometimes i get the hiccups and i don't have reflux.

but then it happened again a little while after he had snack. so, i decided to just ask him how he's feeling. not lead him or put ideas in his head. just a little, "hey, dude, how are you feeling right now?"... you know... just to see...

and hoping it's nothing.

he said,

and i quote,

"not good, mommy."

[insert wave of nausea]

"what do you mean? where do you feel sick, sweetie?"

"my heart hurts, mommy."

[insert wave of nausea]

ok, so now i'm going to be a little more specific in my questions:

"does your heart feel tight? like it's being squeezed?" 

"no, not like dat."

"does it feel hot? like it's burning?"

"yeah. like it's burning."

now, ordinarily, reflux/heartburn is not a big issue. and a lot of heart kids (and adults with heart disease) have reflux. 

(ever wonder why, by the way? there's a spot at the top of the stomach, right where the esophagus joins to it, and it's called the cardiac zone. when a heart is failing or distressed or recovering from surgery, the heart muscle becomes enlarged, just like any injured muscle. when the heart becomes enlarged, it bumps up against this spot on the stomach and annoys it. the problem is, this spot is right beside the valve - or more correctly, the sphincter - that allows food etc into the stomach and then closes to keep stomach contents... um... contained... in the... stomach... wow, that's pretty redundant there, isn't it? anyhoo... when the cardiac spot on the stomach is being bothered, the sphincter there has a hard time closing properly, which then allows stomach contents to go shooting back up the esophagus. because stomach juices have a pH level of about 2 - it's a shockingly strong acid!! - and the esophagus is not designed to withstand that sort of assault, the acid burns the esophagus. and this happens in the vicinity of the heart... hence the term, heartburn. and there you have it, folks, Reflux 101.)

and so, ordinarily, i wouldn't be worried about reflux, even in asher. but... when i look at the other symptoms... yeah... i'm not freaking out... i wouldn't even say "worried," per se... but i do think i made this appointment with cardio just in time.

sigh.

and let's see... what else has happened today... ah yes!!

i spoke with the school's principal this morning, regarding the "incident" from friday. she has looked into it, and apparently...

the EA in question...

had no contact with Asher on friday.

other than in the afternoon when he saw her and flipped out. but she didn't deal with him in the morning.

but...

it turns out...

asher doesn't like her, and he's angry with her.

"why?" you ask?

because, you see, she takes him to the bathroom when she has him. and asher... doesn't always want to go to the bathroom.

and when he's irritable like this...

it's best not to mess with him, apparently.

because he'll tell people that you pushed him.

so, there was no incident on friday. but we think we have an idea about where this came from:

you see, when asher needs to pee, even if it's an emergency and his bladder is about to explode, he will take his sweet time getting to the little boys' room. he'll stop to chat with people, play with toys, whatever. but this EA at some point must have put her hand on his back and tried to guide him to the washroom... when he didn't want to go. and so, "of course," in his mind, this is pushing. 

and since he's mad at her, he told his own EA and me that he was pushed.

which, of course, leads to an investigation and all kinds of things.

sigh...

so, it would seem that my sweet little cherub... well, i'd say he still has a halo, but maybe it's a little tilted, dented and tarnished. haha-ish

so, asher and i are going to be having a little chat this week. because this behaviour is absolutely NOT OK. and yes, disciplining him is not easy right now... i mean, how do you discipline a kid who'll have a heart attack if he cries too hard?? but i'll figure something out, because this sort of thing cannot. happen. again. it just can't. 

so that's what's new in our little corner of the universe today... (hopefully) there won't be anything to report until friday afternoon after cardio. (but you know i'll post if necessary. haha)

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.

oh, wow, isn't this fantastic? (the problem with blogs is that you can't hear the sarcasm in my voice)

so, this should be interesting. they're opening a new $100million research centre in hamilton, ontario. they will be researching heart and stroke prevention, diagnosis and treatment. isn't that fantastic??

except for one minor problem.

they aren't researching congenital heart disease. only acquired heart disease.

you'll understand if i'm not thrilled about this. don't get me wrong, i appreciate the need to research acquired heart disease. it affects millions of people around the world every year. but, um... what about the people who have heart disease who did nothing other than be born?? do they not count? or is researching the #1 birth defect not important. in canada, 1 in 70 babies is born with heart disease of one type or another (and there are over 100 kinds, of varying degrees of severity). i guess they don't count.

you can read the article about the reseach centre here. and fyi... i'm planning on writing a few letters about this. to the research centre, the spec and other local news media, the local MPP, the minister of health... because this just isn't right. these kids are overlooked too often. and that's gotta change. grrrr.

because it's not enough with asher's stuff...

so much has happened recently around here...

asher's tube is still (or again) infected, quite badly. doc put him back on clyndamycin for another week. i'm hoping this will clear it up, because he spent wednesday, thursday and part of friday crying because his tube hurt so badly. he hasn't been crying this weekend, so i think it's on the mend.

i'm going to try something new with him once this course of antibiotics is done. i'm going to try giving him some probiotics. he's been on antibiotics since early august, with only a few days here and there without them. and given that, after the staph infection earlier this month, he ended up with a fungal infection in the tube site, i really think this has the potential to help him immensely. (for those who don't live in paeds clinics: antibiotics kill bacteria. that's what they're for. and they do a good job. but the problem is that they kill all the bacteria. our bodies still need some bacteria to keep everything balanced. but when the good bacteria is gone, it disrupts the balance, and things like yeast and fungus can begin to cause problems, which explains why some people struggle with yeast infections while on antibiotics. probiotics help restore the balance to the body, by promoting the growth of "good" bacteria.)

on another non-asher note... blithe was diagnosed earlier this week with ADHD. and, i know this will shock you, so make sure you're sitting before continuing to read this sentence... sitting?... good. i've started a blog. it's called My Girlie & Me, and in it, i'm going to write about how blithe is doing, medical and non-medical ways of dealing with this condition and how blithe is doing with it all, and resources i've found on the subject. feel free to check it out: http://adhdmomandkid.blogspot.com/ i just set it up today, but rest assured there will be more posts coming. (as if there was any doubt about that! LOL)

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

yup, it's fall...

which means that it's that time of year again, the time of year for...

nasty respiratory viruses!

asher and i had a lovely time at 1am last night, hanging out in the bathroom with the shower running at full blast. we sang and danced to cheesy 80s tunes ("you spin me right round, baby, right round, like a record, baby, right round round round"), played with dinky cars, and made sure his IV pole followed closely enough behind.

why hang out in the bathroom in the wee hours? why not be in bed, sleeping peacefully?

because

that would be too easy

and nothing can be easy with asher

especially in november.

he has croup.

which wouldn't normally bother me, if it was one of the other kids. blithe was prone to it when she was younger, so i'm kind of a pro with it.

but frankly, asher needs all the oxygen he can get. so, this can be a bit of a problem. potentially. let's hope he'll be ok.

anyway, i've gotta go hook up his feed and put bram down for a nap and measure the walls in the kids' bedrooms and put in a load of laundry and take something out for supper and bask in the beauty that is the top of my scrappin desk (see my scrappin blog for details on that... the link's on the sidebar, if you're interested.)

EUREKA!!!! Oh, dr bertoldi, you’re gonna be impressed, i think! Lol (the rest of you don’t have to read this if you don’t want to. It’s about poop.)

Ok, for those of you who've been privy to my "i was so lost in immunology" rants over the last week and a half (honestly, i have never been more lost in an appointment as i was then! I mean, seriously! Does anyone understand immunology?! Because i'd like to talk to you if if you do! I have questions!), you may remember my confusion over the gastro issue that was discussed. The question of whether Asher is constipated because of nerve damage, as we (esp I) suspect, or if it's something congenital. Immuno's guess was anal atresia that's patent. I think i wrote about it last week. how can you have anal atresia that's patent, i asked. (for those who aren't versed in medi-speak, "atresia" means closed and "patent" means open. So now you understand my confusion!)

well, in my cyber-wanderings tonight, i decided to look up VACTERL (not VECTOR, as i had called it previously. Doc had an accent so i misunderstood). I went to Children's Hospital of Philadelphia (wonderful website, very good information), because that's where i learned about DiGeorge, so i thought i'd at least start there. So i searched "VACTERL." A few things came up, so i went through them. The first link just talked about causes of CHD, and included some info about a few syndromes and genetic abnormalities that contribute to CHD. DiGeorge is one of them. But they also said that some "associations" are linked to CHD. Like VACTERL, which includes Vertebral, Anal, Cardiac, Tracheal, Esophageal, Renal and Limb abnormalities. You'll notice that Asher's limbs and spine are fine, but the rest... yeah. I'm not saying he's got this VACTERL thing, but maybe it's worth pursuing, even if just to rule it out...

ok, so here's the "eureka" part of this story...

http://www.chop.edu/consumer/your_child/condition_section_index.jsp?id=-8782

here's the gist: there are several kinds of anal abnormalities. the first is anal narrowing, which basically means that it's technically intact, but it's narrow, so BM's are difficult, but possible. But every so often, they have to dilate it, to help things go a little easier. Yup, a balloon in the bum. Hello! L another abnormality is a membrane over the anus, so nothing can get out. Eep! and then, there's the whole anal atresia thing. Basically, the rectum and the anus are not connected. This can present one of two ways. First, they could be unattached, but there's a fistula, or abnormal channel going from the rectum to the outside, so poop can get out. Phew! Yucky, but lucky. Or, they're completely disconnected, and there's no fistula. Still yucky, but not so lucky. On the other hand, according to my medical dictionary, when it comes to fistulas, "surgical repair is not always possible." The above link explains the repairs in detail.

What does any of this have to do with Asher, you ask? Well, gentle (and by now, grossed out) reader, allow me to explain further. (and feel free to stop reading now. It's all about poop and bacteria and so forth, and my own opinion, albeit humble and uneducated, on Asher's gastro condition.) ok, here we go.

so, in the case of Anal Atresia, which, for the sake of this blog post, we'll assume asher has, there is sometimes a fistula present. Now, this fistula may not necessarily be a straight tube going straight out. Remember, this is an abnormality in an already wonky physiology, so why would it be so straightforward as that? And remember, too, that the gastro and urinary tracts are smooshed together pretty snugly in there. Not much for wiggle room. Sometimes these fistulae (that's the plural. Don't i look smart?! Lol) kind of connect with the urinary tract. Poop still gets out, and mostly through the bum, but not through the anus, and having taken a slight detour first.

Are you getting this? Alright, poop still gets out, but may sort of collide first with the urinary tract.

In which Asher has had numerous infections.

But not from any reflux in the urinary tract.

Nope. They've done tests, and that's not it. His pee goes the right way, just as it should. It doesn't go shooting back up toward the kidneys.

But what if, and think about this, what if bacteria are getting in there from another tract altogether?

"but, heather," you might ask, "wouldn't that mean he'd have poop bacteria in his urinary tract?"

My answer?

Yes. Quite possibly. It would.

One example of a poop bug: e. Coli.

Can you imagine having e. Coli in your urinary tract? It's possible for girls. Just wipe the wrong way, and voila! But for boys... not so easy.

Or common.

And yet...

Asher has had e. Coli in his urinary tract.

At least once.

I'm not saying, i'm just saying.

Ok, now, i know paeds reads this. So, just think about it. that's all i ask. oh, and then let me know what you think. K? Thanks! :)

pictures of homelife...

some friends (ok, one of asher's nurses and her husband) popped over this afternoon and brought gifts for the kids. blithe got a Happy Feet DVD and a doll, asher was given an airport set (toy helicopter - "hacot" - and plane, some cars, an airfield, some luggage and signage), and bram was given a fantastic train set. it's absolutely gorgeous! arturo picked it up somewhere but it didn't work, so he fixed it up, including a new electrical system, and gave it to bram. isn't that lovely?!

so, tonight, as i was making supper, the kids were all in the kitchen, playing with each other. and playing nicely! it is lovely to hear them all play, including the way they include asher in the play. it was heartwarming. so, i thought i would share it with you.


now, there's a bit of a story behind this next pic.

back in the spring, during one of our many visits to london cardio, i was chatting with a certain cardiologist from mexico. he noticed that asher was not particularly fond of sharing the thomas trains with other kids, and refused to come when called. one of us said that asher's spoiled, to which i replied, "but how do you discipline a kid who'll have a heart attack if he cries too hard?!" i expected the usual, "mom, you're paranoid." instead i got, "yeah, that's a problem." wha-?! well, this pic is for you, buffo, and for anyone else who thinks asher gets away with murder.
this was time-out number one tonight. he got another one a couple minutes later when he refused to make things right with nana. apparently, she had asked him to do something, which he refused to do. and by "refused" i mean that he yelled "NO!" repeatedly, then grabbed something of hers off the table and threw it across the room. yeah, time out for asher. and after the time out, after apologizing, he was asked repeatedly to pick up whatever it was and put it back, to which he replied "NO!" so... time out #2!

of course, now he's sitting blithely at the table in his high chair, singing Bob the Builder ("Bah Bih hahadooha kakaka!," roughly translated, but it's the exact rhythm, key, notes, everything!) and waiting for pizza. not that he'll eat any, all you medi-types reading this, but still... he's waiting for supper. the only person who can't eat is the only person at the table. ironic, n'est-ce pas? lol

btw, i didn't end up taking asher in to emerg yet. i decided to let him sleep overnight, which he did for the most part. right now i'm just keeping a close eye on him, but he'll be seeing someone medical in the next few days about those ears, rest assured.

anyway, have a great weekend, everyone! :)

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

here you go, dr bertoldi, as promised. lol

ok, are you sitting down? you might want to; i'm about to give you quite a shock. something extraordinary happened today.

asher was pale. and sweaty. and refluxing and vomiting. and blue. and short of breath. with low sats, high heart rate.

so dr bertoldi called liz.

who said, "to emerg with him!"

so we went to emerg.

ok, there's the shock o' the day. i didn't like how asher looked, so i took him to paeds and she said, "yeah, he's looked better; i'm calling liz." are you surprised? really? why?

well, we get to emerg, tell them asher's symptoms (and btw, his colour when we got there? pale/pink. no blue. of course). well, apparently, despite the fact that i brought asher in to emerg a month ago with these exact symptoms and they investigated "query failure," and then a week later i took him back in and cardio said "yup, definitely CHF," obviously the problem would be...

yup, you guessed it, his GJ-tube in the wrong spot. of course! that explains everything! sheesh! well, as it turns out, his tube is in the right spot, so that's not the problem. (and for the docs reading this, i am aware that these problems could, in fact, be caused by the tube in the wrong spot. i'm just saying...) ok, so we eliminated that issue. so, if it's not gastro, obviously it's....

a UTI. so, bag him and check his pee. and yup, you guessed it... it's clean. nothing wrong in there.
now, i don't want to be that mom who shows up and says "it's his heart it's his heart it's his heart i won't leave without seeing cardio it's his heart." nope, i don't want to be that mom... again (don't laugh, paranoia is a side-effect of heart parenting, don't you know!) anyhoo... the problem is that we had docs tonight (resident and attending) who don't know asher. now, if it had been a couple other docs, then maybe i could have said, "look, i'm not saying, i'm just saying..." and they wouldn't have rolled their eyes at me. they may even have humoured me and called cardio. but tonight, we had people who don't know us. and apparently, don't know much about HLHS, either.

the nurse we had was quite concerned that asher's sats were 85%. the resident asked me if HLHS is caused by something happening during pregnancy (i wanted to say, "yeah, i conceived. that's what caused it." instead i just said, "no, HLHS just happens" and tried not to hit him. ok, i understand, HLHS is rare so the residents don't know much about it, but still, what freaking difference does it make to his treatment if it's my fault or God's?! i mean, seriously, people? if i said that i had sneezed too hard around the 7-month mark and that caused his left ventricle to fall off, would they have ordered an echo tonight? sheesh!). and um, let's see, ah, yes, the doc said, "yeah, i really don't have any idea why he'd have these symptoms." definitely docs who don't know ash.

ok, this post is sounding a lot more bitter than i feel. sorry about that. i'm really not bitter. maybe frustrated that my boy and i just spent 4.5 hours in emerg so that they could say, "yeah, i don't get it. maybe he's just hot." yeah, i'm tired and i have a headache. and disgusted by how dirty the floors in emerg are. yuck! asher's feet are black! disgusting! not surprising, but gross nonetheless.

anyway, i'm off to medicate my boy and go to sleep. talk to you later! :)

update on asher's pump. and i'm apologizing ahead of time, but seriously, Kangaroo sucks.

have you ever made a decision you later regretted? i know, stupid question; we all have. well, here's mine: choosing a Kangaroo pump for asher! seriously, what a terrible company to deal with! for sooooo many reasons. here's a summary:

1. the technical support number is nowhere to be found, other than perhaps in the pump's manual.
2. you have to order the manual separately.
3. they don't tell you this, until you get the pump, figure it out on your own, but then run into difficulty with it. i'm not joking.
4. the tech support number is not on the Kangaroo website.
5. they do not give out their tech support number to pharmacies which distribute their pumps.
6. if you experience difficulties with your pump, say, on the weekends, you're S-O-L. tech support doesn't do weekends. or evenings. again, not joking.
7. they do not provide pumps to distributors (like the one we deal with). this means that, if you run into difficulty with your Kangaroo pump and say, it dies, you cannot get another one until your is repaired or replaced. the pharmacy/distributor must lend you another kind of pump. not another model. another company altogether. still not joking.
8. if your your pump dies (eg, the motor burns out because you run it 20 hours/day to feed your child, which, you'll note, is the very thing it's designed to do), they will only replace it with another pump that is the same model as your first one.
9. if your replacement pump dies (eg, the motor burns out because you run it 20 hours/day to feed your child, which, you'll note, is the very thing it's designed to do), they will only replace it with another pump that is the same model as your second one, which was, you'll remember, the same model as the first one, which burned out only 5 months previous.
10. if you cause a stink and tell people in customer service that their pump is "crap" and you refuse to take another one of the same model (Kangaroo ePump, for those who are wondering), they will offer you the smaller version of the same pump.
11. if you mention that you much prefer the models similar to those in hospitals, they say, "too bad, it's this or nothing. you can always get a pump from another company, you know."
12. in case you're wondering, enteral feeding pumps can cost around $1000. the ePump costs $1500. still not joking.
13. they must be aware that the average family does not have an extra $1500 for another pump, so really, you're screwed and have to go with Kangaroo and take their stupid crappy pumps.

but heather, i'm sure you're wondering, don't you have some government funding which pays for most of asher's enteral feeding supplies? why, yes, as a matter of fact, we do. it's through ADP (Assistive Devices Plan, or something like that). well then, heather, the answer is just so simple! they will cover the cost of a new pump, so just find one you like and order it, duh! ah, but the answer is never so simple, gentle reader. you see, ADP will only cover the cost of a pump every 5 years. that's right, 5 years. asher's only had this funding less than one year, which means, you'll note, that we still have over 4 years until they will cover a new pump for us.

so you can see my dilemma. i don't want another kangaroo pump, because they are crap. and more info you may need about his pump dying:

1. asher has not been gaining weight the last month or so. (he's being closely monitored by a dietitian, so i know this for a fact.)
2. asher is supposed to get 920 mL/day of formula to meet his minimum calorie requirements and gain weight as necessary.
3. by the end, the pump was only delivering approx 840 mL/day.
4. that's a difference of 80 mL, which is equivalent to 80 calories (which is a lot when you're only getting around 900 kCal/day).
5. again, asher has not been gaining weight during the last month or so.
6. until we got the loaner from Yurek's. he has definitely gained weight in the last week - you can tell when you pick him up.
7. the loaner we got from Yurek's is not a Kangaroo.
8. i love the loaner pump we got from Yurek's, and would love to get a pump like that for asher.

again, here's my dilemma. i could, in theory, call the lady back from Kangaroo and say "thank-you ever so much for your 'help', but let me tell you what you can do with your ePump. ... and once the doctors have pulled it out again, do let me know how the surgery went; i'd be ever so curious." but that's only in theory. in reality, i would never say that. i wouldn't care how the surgery went.

but seriously... i don't want another kangaroo pump. i'm quite enjoying the Patrol pump we have at the moment. truly, a delightful pump. so easy to work, even asher has figured it out (i'm not joking here, either. just ask my mom). here's the link, if you're curious: http://www.southwestmedical.com/Nutrition_Feeding/Feeding_Pumps/Patrol_Enteral_Pump/1045p0

truly, a delight to work with. but note the price. and that's an american site; i couldn't find a canadian one, but since we have one of these pumps at the moment, i know i could get one. i'd just have to go through the pharmacy home health department. too easy, really. except for the obvious detail here:

i don't have the money for one of these pumps. the only pump i can afford is the one Kangaroo will send me for free. that asher needs. because he's entirely tube-fed. so he needs a good, quality pump that won't burn out and die in a few months. and given our record with the ePump, i'm almost certain it will happen again. and the one they're sending us is the smaller version, which may very well die even sooner.

now, i could try on monday to track down a contact at whichever ministry runs ADP (i think it's community services, but i'm not sure) and plead my case. and hopefully, someone will be sympathetic and approve funding for a new pump. but given that's it's the government, i doubt that will happen.

but please don't take this the wrong way. i'm not asking for money here. i know it sort of sounds like it, and i'm sorry, because that's not what i'm trying to do here. rather, i'm trusing God for a miracle. i'm trusting God for this miracle: money for a different pump. i need to feed my baby. i need to ensure he has quality equipment to do that. but i need money in order to purchase said quality equipment. so, please God, provide us with a way to get a new pump.

ok, venting is done. you can now resume your life. and i'll keep panicking and worrying, and everything will be just like it was before. have a great weekend! :) h

UPDATE: while perusing the internet, i found a different pump i would love for asher. the link is on the sidebar. the EnteraLiteInfinity. check it out! too perfect (as long as it works!).

YOU'VE GOT TO BE KIDDING ME!!!!!!!

not again!

tube came out. we're going to the hospital at 4:00 to get it replaced... again.

seriously, when is he going to get the idea that eating by mouth is infinitely better than tube feeds? is anyone else sick of all this, or is it just me?

i'll keep you posted.

ps - please pray for a couple of heart kids:

Dominic (HRHS): had his Fontan on Tuesday, and he's doing really well. he's already up on 4D! go dominic go! he's in a lot of pain, and his sats are still low, so as of yesterday he was getting lots of pain meds and has those pesky nasal prongs (which he hates - don't they all). so keep sending prayers and good vibes and whatever else you do.

Owen (transplant): in hospital right now with possible sepsis. at the moment, they're still waiting for the blood culture results. remember sepsis? yeah, it sucks, and can do a lot of nasty things. those buggies like to play on stents, shunts, grafts, you know, really whatever's in there, especially if it isn't there in a healthy heart. and, blood goes everywhere, which means it's carrying this infection everywhere. that's not so good. owen is likely immunocompromised due to the transplant, so his body isn't very good at fighting off infections. please pray for him, that the culture will be negative (asher's cultures have come back negative several times, and he looked really bad, so it can happen, my friends!). also, tomorrow is owen's 2nd birthday, and he'll be in hospital. he already spent his 1st b-day in hospital, so this is a rather discouraging, especially for the family. so please pray for them, too.