so much has happened since the last post... don't worry, some of it's great!
Posted Jan 25 2011 2:02pm
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...
"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...
(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.
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.
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.
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.
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)