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there are no words... and yet i'm blogging??... i need help.

Posted Oct 16 2010 8:59am
those readers who are on my facebook or got my texts yesterday are aware of the fiasco o' the week. the rest of you... sigh... settle in, gentle readers, for a long and horrifying tale. (ok, maybe less "horrifying" and more "frustrating/crazy-making.")

i took asher to see our paediatrician on thursday afternoon because he looked "off." i couldn't quite place it, other than that he looked pale and just wasn't quite his usual ebullient, non-stop, Taz-on-speed self. doc checked him out. it turns out, his blood pressure was 80/52. that might explain a few things.

and then, she listened to his chest.

and said,

"i didn't know he had a residual murmur after the fontan."

i looked at her and said, "he doesn't. they ripped all those parts out, remember?"

and yet... there's a murmur. where there shouldn't be one. and where there hasn't been one since the norwood/glenn at 6 months. over three years ago.

yeah.

so she went and called cardiology. she talked to dr n, who said that if asher was unchanged in the morning, that he would need to come in to clinic to be assessed fully. so we made an appointment for 9:00am friday.

on friday morning, i got blithe ready for school (bram's asthma has been acting up, so i gave him friday off). asher was asleep when she left. then i came inside, and got my stuff ready for the day. asher was still asleep. i told bram to get dressed, which he did, with the light on in the room he shares with his little brother. the little brother, you'll note, who slept through all of that. i had a shower. i got dressed, i put on make-up. i came out of the bathroom at 8:55 (ignore the fact that this is 5 mins before we're due at paeds, please), and asher had just woken up.

"so he slept in," you say. "no biggie, right?"

oh, gentle reader, if only that was right. you see, asher doesn't sleep in. ever. he wakes up every morning at 7:00. on the dot. every day. regardless of what's going on in the world, regardless of the fact that his mother is  not a morning person, regardless of everything, asher gets up at 7am. every. single. day.

and yesterday, he got up at 8:50am.

and when i looked at him, he was pale, he'd been sweating overnight, he was grumpy (he's usually happy and playful as soon as he opens his eyes). and speaking of "opening his eyes"... i don't know how he managed to do that yesterday, since his eyes were unbelievably puffy. i've seen him puffy before, but it's been a very long time since i'd seen this kind of puffiness. probably since post-op after the Coles. he was just. that. puffy. he was also irritable and pale, and there's something else.... what was it?.... oh yeah! his mouth and nose were navy blue!!!!!!! honestly, doc thought i'd given him a blue popsicle for breakfast. that's how blue he was.

and before you start thinking, "but he's a heart kid. of course he'll turn blue!" let me assure you: since the fontan, asher does not turn blue. his sats are normal and he doesn't go blue. especially not like this. this was frightening.

and... she heard the murmur again.

the one that shouldn't be there.

so! before sending us to cardio, she sent us to our local emerg because doc "needs to know he's stable before he goes to london." so off we go. it was probably a six-minute drive. and asher almost fell asleep on the way. again, he doesn't do that. especially during a short drive. at 9am. it just. doesn't. happen.

so we went to emerg, and they did a chest x-ray, and got him ready for some oxygen. but his sats were ok (96-98%) so that wasn't necessary. but when the attending listened to him, guess what she heard! that's right!

a systolic murmur.

so asher was diagnosed officially with "CHF with systolic murmur." london cardio was consulted and they said, "he needs to come in here right now." we were told to go to emerg, but that it would be a "straight to cardio" visit, meaning that we would be in emerg, but they would not be assessing him, that we would only be seeing cardiology.

who insisted that asher be seen right away.

immediately.

these are key words. remember them.

alright, so off we go to london emerg. they took us into the department at 11:30. and they paged cardio. twenty minutes later, they paged cardio again. and cardio said, "we're on our way." meanwhile, asher is sitting in his bed, playing and chatting and improving as time went on. at this time, as well, the attending in emerg, who was sitting right across from us was... dr j, who used to be a cardiologist before switching to emerg. remember his proximity and his specialty. they'll come into play later on.

by 2:00, cardio had still not arrived, and asher was doing better. so i told the emerg staff that i was comfortable taking asher home at this point, but that i would bring him right back if he worsened again. they understood.

now, let me be clear here: sure, i was frustrated by having to wait over 2 hours to see the docs who insisted that asher come right in because he needed to be assessed immediately. i understand, things happen in hospitals and delays occur. i get that, especially since so many times it has been asher who caused the delays for other patients, and i appreciated that the docs focused on asher when he needed it. so i get that, and while i was frustrated (as anyone would be), i understood. and i was looking at asher whose energy had returned, who was less puffy and who seemed to be doing a bit better. so i said that i would take him home and bring him back right away if he needed to be seen.

at this point, i went to the washroom before we left. and of course, this was when cardio showed up. but not a doc. nope. (and please note the words "not a doc." wow, that's catty, but only those of you who know what i'm talking about will get that. and you'll laugh. haha) nope, no doc. it was liz, the NP. (you remember liz, no? here, let me refresh your memory. feel free to click here  and here  to be reminded. not in the mood to click? here's the gist: the CHF in jan '09 that liz said asher didn't have, and the chylo and symptomatic bradycardia that liz said asher didn't have. you'll note: if we'd listened to her and gone with her "treatment" plan, asher would be dead.) so this is who they sent to emerg to assess asher. well, fortunately, she heard the murmur and asher was hauled upstairs to the clinic and had a full echo and ECG and pacer check and toronto was consulted.

oh, wait, that's not at all what happened. (except the "toronto was consulted" part. that actually happened. but read on for those details.)

liz wanted to listen to asher before we left. "that's fine," i said to her, and then i added "under my breath" (haha) "we're leaving anyway." because i knew what would happen. now, let me be clear once again. if liz had heard the murmur, we would have stayed. asher isn't supposed to have a murmur anymore, and so if he has one now, it's a problem and needs to be dealt with and so we would have stayed and dealt with everything cardio wanted to do. but shock of all shocks, she listened to him for 3 seconds while he chatted, played and moved around, and...

she didn't hear a murmur.


i'll give you a moment to pick yourself up off the floor, since i'm sure you fell off your seat when you read that. i mean, she's so thorough and takes asher so seriously and is always so on the ball with his care and treatment and... yeah.

so she sent us home. surprise, surprise.

i got the boys into the car, and i'll admit, i was so angry (because i had also specified in march that i refuse to deal with liz anymore anyway, so the fact that they sent her down to see us just made things even worse!!!) i took a couple minutes to calm down before operating a motor vehicle. i didn't think it would be a good idea to drive a large vehicle when i was in that mood. so i breathed for a minute, and texted a few friends
we're going home. but don't ask about it yet. i'm too angry.
my nice little text. by the time i got home, i had calmed down a little bit, and sent this epic text
i'm so angry i'm shaking. the trip was supposed to be straight to cardio thru emerg. we waited 45 mins for a bed (no prob [they were short-staffed]). when they called us in, they paged cardio, who were expecting us. 30 mins later they called cardio again, who said, "we're on our way." after waiting 2 more hours, i said, "asher looks fine now, so we're leaving. i'll bring him back if i need to." i went to pee, and THAT is when LIZ showed up. of course she didn't hear a murmur and gave us her PERMISSION to leave. CHF and a new murmur, and $10.50 for parking and a whole effing day wasted. i'm so pissed i could cry.
my other nice little text.

so our marvellous paeds called london cardio to talk with them. apparently, the doc, dr r (whom i like, generally speaking) told her that i had "refused treatment" and that "if she's so dissatisfied with the treatment here, maybe she should take asher to a different hospital."

dr b got off the phone with him... and called dr russell in toronto. she told dr r about asher's symptoms and the  murmur, and dr r was not impressed. in fact, she is very concerned and said that asher needs to be assessed fully right away. she offered to see him next week in her clinic.

so i thought about that for a little bit, and decided to give her a call. i also told her about asher's symptoms etc, and she asked what had happened in emerg, and i filled her in. i told her that if it was a doc who hadn't heard the murmur, then fine. if liz had heard the murmur, we would have stayed. but i'm very concerned, and i would like to take her up on her offer to see him next week. apparently, she is away on wednesday and thursday, so she could see him friday, but in her words, "i think that's too long to wait." so we're going in on tuesday, even though it isn't her clinic day. she's making a special appointment for asher, and he will be fully assessed. echo, ECG, she will check him out, etc.

see? this is why i love dr russell. this is why i love having two hospitals keeping an eye on my littlest man.

meanwhile, this morning, asher is pale, quiet, distinctly not energetic (read: he's just sitting on the couch, expressionless, not talking, and looking pretty lazy). he slept in later again this morning. and he's not peeing. he didn't pee much overnight, and he hasn't peed much today. something's not right here.

so i just might be taking him in to emerg today. if/when i do, i'll let you know how it went.

and yes, before you ask, i'm going to be speaking to the chief of paediatrics at the hospital (who also happens to be asher's nephrologist). i'm going to fill him on how we have been treated by liz (read: formal complaint), and i'm going to ask for two things, if/when asher "needs to be seen right away"
  1. cardio brings him straight to clinic, instead of through emerg. or...
  2. we are sent to emerg, but not as "straight to cardio." if he needs to be seen "right away," please let him be assessed by emerg, and they will consult cardio, if necessary.
this should not happen again, to us or any other heart kid. and i intend to do everything i can do make sure it doesn't happen again.
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