after reading a particularly hilarious post on cake wrecks, asher has decided that he wants this song on his blog. enjoy!!



and seriously, go check out the cake wrecks post. after reading the first paragraph, before i'd even looked at a picture, i was laughing so hard my sides hurt and asher thought i was crying. it's just epic!!!!

i'm actually cool with this latest development, but every time i write a title it sounds bitter, so this is the title now

in the last six weeks, we've had a clinic appointment every week.

1. cardio. (the emerg appointment for function echo)
2. immunology. 
3. cardio (for holter)
4. nephro
5. cardio (for echo)
6. neuro

immuno was the usual "dunno. see you in six months." cardio was unproductive each time. nephro was delightful, since we don't go back for another year. then neuro today.

i'll admit, i actually had no idea what to expect today. i figured they'd formally diagnose asher with migraines and febrile seizures, but beyond that, i was in the dark.

but it turned out to be a very interesting appointment. as it happens, asher does not have migraines, which is a relief. and they weren't concerned with over three years of low oxygen to the brain, since he's developmentally on track (if not advanced), so that's also good. it was the seizure activity that caught their attention.

febrile seizures have been ruled out, but have been replaced with "seizures with fever." sounds like just a change in word order, but it's actually not:

• febrile seizures are seizures that are triggered by high fever.
• the term "seizures with fever" puts the focus on the seizure, and the fever is almost an after-thought. like it's something that coincidentally happens at the same time but is only remotely linked, if at all.

they now believe asher has epilepsy. i'll admit, this threw me for a loop, since this had not even occurred to me. at all. ever. i went in and was telling them that my parents, brother and cousin all get migraines. but for some reason, it never occurred to me to mention that my uncle has epilepsy. but when they asked if there is a family history of seizure disorder, i mentioned it, and they did the whole "nodding pensively" thing which heart and SN moms know so well.

so developmentally he's on track, he doesn't get migraines, and he has epilepsy. surprisingly, i'm actually laughing as i type this paragraph. you may think it's a "if you don't laugh, you cry" kind of thing, but i don't really think it is. (mind you, that could be because i haven't looked into epilepsy yet, so it's still a bit surreal, but i'm not freaking out, so that's a good thing.) they are ordering an EEG (i'll let you know the date when i find out), and we go back in four months. not as good as nephro's year, nor immuno's six months, but better than cardio's three, so i'm cool with that.

after the appointment, we moseyed on over to spend a few hours with our friends Allison and Brigid. the kids all played, allison got a smiling pic of asher with a mohawk, we ate some amazing banana bread, and... um... something else happened... what was it again?...

oh, yes, i remember...

asher had two seizures. nothing major. none of the shaking and everything you're likely imagining right now. no, these were "absent seizures." he was sitting at the table chatting away, then he stopped and went blank and unresponsive. and i mean, i was in his face saying his name, and nothing. just staring out the window. and there was nothing out there to look at. and wow, again, that all sounds like something that might scare some of you. it really isn't. kind of amusing that he did it after the appointment, but who knows? maybe he's been doing it all along and i just haven't noticed or have brushed it off because i didn't recognize it as seizure activity.

all things considered, i'm cool with all this. sure, it might not be spectacular news, but it's an answer. which means that it's not just all in my head.

it's in his. {wink}

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

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

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

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

"he doesn't look right."

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

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

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

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

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

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

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

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

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

so off we trekked for an echo.

which, of course, showed nothing.

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

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

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

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

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

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

ugh.

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

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

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

again, ugh.

it's how i roll

this morning, i was chatting with a friend, a fellow heart mom (gotta love facebook!), and i got to thinking. this life, you know, it does things to you. weird things. it warps you, in a way.

mind you, i almost titled this post, "quothe the heart mom to the cardiologist, 'do you know the kind of life i had to have to prepare for asher?!'" so maybe it's not heart life that does this. but it definitely reinforces it.

what i'm talking about, dear readers, is my sense of humour.

my warped and very, very, VERY dark sense of humour.

to whit, i give you some of the things i've laughed and joked about over the last 3+ years.

1. when asher was diagnosed, at 8 days old, it was rough. and by "rough," i mean that the next two days in their entirety were spent with docs giving me bad news. all the time. for two whole days. i said to asher's dad over supper on day 2, "ok, i need something to laugh at here. if i can laugh at just one thing, it won't be so horrible." and i started thinking. i'll admit, it took me a couple minutes, and i was starting to lose hope. and then, as i was about to give up, it hit me. "doc said he's going to be blue. well, that makes hallowe'en easy: he'll be grover."
2. leading up to the glenn, asher was very weak and not doing well at all. his sats were in the 60s, his BP was rising daily, he had no energy and was sleeping over 20 hours a day. and he didn't just have the glenn. he was to have the norwood AND the glenn at the same time. two very big surgeries at the same time. and at that point, asher was averaging an admission every month, plus appointments every single day, and countless trips to emerg. i was worn out, exhausted, and quickly running out of hope. i was certain that asher was going to die in the OR. you couldn't tell me otherwise. he was going. to. die. now, i tried to get past that thought. i wanted to believe that he would make it through. so i tried picturing life post-glenn. but every time i did, i could only see 2 kids at home. no asher. so that wasn't working. so i decided that the best i could do would be to imagine asher just surviving the surgery. even if he didn't make it home, at least he'd come out of the OR. i knew what to expect post-op in the unit, so i pictured that. horrible images to cling to, really, but i figured, if he made it through the surgery, he could still die in the unit, but at least i would be there when he passed. and then, one day, while picturing asher with all the tubes and lines and meds and monitors and everything, i realized that his rib cage would probably be suspended post-op. so i added that to my visualization. his chest open, wires wrapped around his ribs and looped over another wire above his crib. (don't know if you've ever seen it or not. it's not quite as gruesome as it sounds.) and then i started laughing. hysterically. i mean, i was almost literally peeing myself from laughing. because, i thought, when people asked me how asher was doing, i could say, "he's hanging in there."
3. during one trip to emerg, i was talking to a med student, and (trying to) teach him about asher's heart. he was having none of it. he insisted that he knew everything, and i knew nothing. he argued with me about what the surgeons have done, and the meds asher's on (i said at one point, "that's fine. you can disagree with me about Lasix and HCT. in fact, why don't you call the doc who switched the meds. his nephrologist. whose other specialty is pharmacology. it's dr f. you know. chief of paediatrics. you can ask him." yeah, i was not impressed with this clerk at all. anyhoo... once i had finished (trying to) teach kid about asher's conditions, he asked, "so, what caused all this?" "nothing," i answered, "HLHS just happens." "no, i mean, were you sick during the pregnancy? what made his heart go like this?" "nothing," i replied through gritted teeth, "HLHS. just. happens." "no, i mean, did you drink? did you do drugs? did you take meds you weren't supposed to?" well, i looked the young man in the eye, and said with a straight face (and without violence, i might add), "actually, somewhere around the 7-month mark, i sneezed too hard and his ventricle fell off."
4. during the spring, i was having lunch with D., dr caldarone's wife. (and no, that's not the surreal part.) these lunches were great; i would tell her about the journey with asher, and she would tell me all about "chris" (dr c) and their lives. anyway, it was during asher's pacemaker admission. D and i are having lunch, and she tells me about their dinner table conversation the night before. dr c was talking about pacemakers (not disclosing any confidential info, don't worry. just talking pacers in general) and one of the kids asked what a pacemaker looks like. so dr c described it, and the oldest said, "i think i had one of those in my desk! but i didn't know what it was, so i threw it out." but wait! that's not the funny part!!! the next day, dr c came in to do the informed consent bit etc. so i said to him, "now, you're sure you have a pacemaker for him, right? no one threw it out or anything?" 
5. another dr c story (i have several). asher went in to the OR at 8am on the morning of the Glenn. dr c came out to the waiting room at 8:40am. (all you heart moms should just read the story before you vomit; it's ok.) he came over to me and sat down. apparently he needed to add something to the consent form but he needed me to witness it so that it was legit. no problem. then he said to me, "ok, well, we haven't started yet." "I HOPE NOT! because you're out here!!!" and he just looked at me like i was crazy for a moment. then when he saw i was laughing, he laughed, too.
6. yet another dr c story. D and i were again having lunch (sometimes i just shake my head at the twists and turns and unexpected acquaintances that come my way in this life). we were discussing the letter i'd written to dr c back in december. i refer at one point to his hobbies (yes, he has some!!!), and she said that he bakes and makes "the best pasta sauce in the world," and "did you know he sews?" "I HOPE SO!!!"
7. back in the day (asher was 4 months old), he was admitted to PCCU in london. dr b came in to see us because he'd heard that we were there and he just wanted to check on asher and see how we were doing. he said at one point, "i'll be back in a little while. just a social call, to see how you're doing, if you need anything." i said to him, "while we're here, the only thing i ever need is coffee" (take note, readers in the area). "i can bring you coffee," he said, "how do you take it?" "two cream," i said. "alright, two cream. no sugar?" "i'm sweet enough," i replied with a smile on my face. "yeah, i'm not gonna touch that one!" he said. yes, folks, i can joke around with cardiologists. 

this is how a lot of us get through. we laugh. you may remember the post from the other day about band-aids. it's how we cope. it's true what they say,

"if you don't laugh, you cry."

and when there's so much to cry about, you learn to laugh at just about anything. it's how we roll.