a quick heads-up

dr russell called this afternoon. she's presenting asher in conference right now, and she'll call tonight with the plan. so stay tuned........

if this is thursday, it must be paeds

yup, we went in to see paeds today. shocking, i know!

today, asher's nurse was checking his vitals, and lo and behold, his heart rate was 184!! eep!!! he's also been short of breath all day, and to say he was flushed would be an understatement (no coughing, though).

well, this is asher we're talking about, so you know that by the time we got to the doctor's office, his heart rate was 117, which is his baseline, and his sats were 82%. of course he was fine! he went for a ride in the car, so obviously he'd be fine! lol

so that was our adventure today. he gave us a little scare, but in the end, he was fine. aren't emotional roller coasters fun?!

Wonky He(Art) Day '09

we celebrated wonky heart day (14 feb) with friends, and during the afternoon, we did some crafts with the kiddies. finger painting was a big hit, as you can see! gotta love that tongue sticking out, eh? how much do i love this kid of mine!

because where better to celebrate Wonky Heart Day, really...

... than in emerg! lol

it's like he knew what day it was or something, honestly! yesterday afternoon, asher had about 6 blue spells. and by "blue" i mean literally, his eyes/nose/mouth was navy blue. six times this happened, each spell lasting at least 20 minutes. because that's just what we all want to see, isn't it? ugh.

but he wasn't distressed at all during the spells. no shortness of breath, no lethargy, no (extra) irritability. although a couple times he did get himself excited; once he laid down on the floor for a couple minutes to calm down, and another he turned bright red and started coughing (and those who know what that means are nauseous with me right about now).

but given the frequency of the spells, i decided to take him in to emerg to get checked out. but his sats were fine (mid-80s, and yes, he is hypoplastic left! sheesh!), HR was good, no distress, and of course, he was not blue when we got there. because it would be too convenient to have a blue spell when there's doctors around, right? lol

so, i scared the crap out of the poor medical student who has clearly never met a hypoplast before, and then we talked to the attending (who knows asher very well), who sent us home. she said that there's really nothing they can do about the blue spells, that they're just going to happen until his next surgery, and in the meantime, just keep an eye on him.

and isn't that a delightful thought. that asher will just have spells when he's navy blue until his next surgery.

well, i hope you all had a wonderful Wonky Heart Day. we actually did around here, other than the unscheduled trip to london. talk to you later! :)

and now for something completely different....

so this morning i made smoothies for breakfast. asher wanted a little bit, so i poured some into a cup for him.

after the kids left for school, i went upstairs to get dressed. and asher followed me, cup in hand. i wouldn't let him on the bed with me, so he sat on the floor, babbling away about his "mnoonlie" (that's how he says "smoothie"). and then he took off. i could hear him going down the stairs, still talking about his mnoonlie. and i could hear him pattering about the downstairs still talking about his mnoonlie. he came back upstairs, still babbling about that mnoonlie. he ran into my room and said,

"towels.... clean up..... mnoonlie."

at that point, i looked at the floor, and there was a dollop of smoothie on my floor. asher had spilled some, and went all the way downstairs to the kitchen, brought the towels upstairs, and then cleaned up his mess all by himself. how proud am i?!

Because where else would we spend our Sunday evenings?! lol

So, ed brought the kids home from the weekend at his place. And he said to me, "there's a bit of a bump under asher's cath site on his leg."

Now, those readers familiar with cardiac caths know what i'm talking about here. For those of you who are blissfully unaware of the ins and outs of the week post-cath, let me explain. They went in through two sites in asher's groin: a vein, and an artery. The sites on his groin and neck are all very bruised, though healing. But wow! Does this kid hate having the bandages changed! Anyhoo... your instructions post-cath include how and when to do the dressing changes, and things to watch for. The usual signs of infection: redness, oozing, heat, and so forth. The other thing to watch for: a bump under the site. Yup, a bump. A bump.... yeah, not so good. And yeah.... that's what asher has.

So, surprise, surprise, off we trekked to emerg.

We got there, and it was packed. And i mean packed. Standing room only in the waiting room. And that was just the people they'd already triaged! The triage line was long long long. One of the nurses came out to get the names of the kids waiting to be triaged, and the second nurse came up and said, "i'll just take asher in to the back room there and check him out. C'mon, Asher." And the looks i got from the other parents! Nasty! I mean, really, it's understandable, since Asher was sitting in his stroller playing contentedly, chatting with me and laughing, playing hide and seek and checking out the stickers on his blue card. But still! They were not impressed. But the nurse and i laughed about it when we got into the room, and she said, "well, i don't want to break asher's confidentiality, so i can't say, 'is your kid here with cardiac problems? Because Asher has half a heart, so he goes first.'" And we laughed. Oh, yeah, we are there WAY too much!

And then, in the middle of this busy busy waiting room, where the wait was 3 to 4 hours, we came out of triage, registered, and were taken right in. And the whole time, my boy is laughing and chatting and basically looking like there's nothing wrong with him. Again, you can't imagine the venomous looks i was getting from some of the other parents. We're greeted by name by a couple nurses, triaged right away, and taken straight in. Meanwhile, there's kids with fevers and all kinds of things, and we're taken right in. To a private room at the back. Yeah.

Ok, so, i told them about the bump, and some concerning CHF symptoms asher's been having. Now, let this give you an idea about the cath site bump: they ignored the congestive heart failure symptoms and focused on the bump. I'm not joking. "oh, he is puffy, you're right. Well, let's have a look at that cath site."

In the end, though, they checked out the site, consulted cardiology (not our doc. It was a different doc on this week... probably a good thing, since i've lost all confidence in our own doc), and sent us home. Basically, it's likely just a glorified bruise right now. Keep an eye on it, and if it gets worse, dr welisch will be happy to check it out in clinic, but yeah, no biggie, go home. Thank-you very much, i say! The less time my boy has to spend in dirty emerg the happier i am! Yeah, altogether, we were there a little over an hour (imagine the looks we got on our way out, too! Eep!). i paid less than $5 for parking! Gotta love it when that happens, eh? ah, the simple joys of SN/heart life, eh? <wink>

So there you go. Our Sunday evening ritual. (ok, not quite, but it sure feels like it sometimes! LOL) have a great day!

 

Oh, wait! Before i forget: today's the day they present asher in conference in Toronto. This is when they decide on the plan for him, including dates for surgeries and stuff. I'll post when i hear. J

Asher's cath. the long-awaited update.

asher did well, some bleeding at first but that seems to have slowed down now. but we're stuck here till 8pm b/c they used an artery, and you have to wait 6 hours post-cath for an artery. arg.

oh, so the problem is........ ready for this?..... sit down before you read it....... function. the problem is cardiac, not respiratory, like london says. hmm... funny how..... but i was wrong, too, turns out. arch, PAs and PVs were all "fine"; on the small side but nothing that required intervention right now. they did coil off some collaterals, though, but that needed to be done a year ago, so no big surprise there.

they'll be presenting asher for the fontan, and dr russell will likely let us know their decision at our next appt, which is next week. and since the issue is function, i'm guessing it won't be a long date. sigh. but hey, asher's "fine" and they're sending us home tonight, so i'm "happy."

i'll update the blog later, but i thought i'd let you know how everything went.

oh, and buffo gave me some great tips on dealing with london; i'm gonna ask for a new doc, at his suggestion. he even told me which one to ask for. oh, the things we talked about! lol