Thursday, February 19, 2009

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?!

Monday, February 16, 2009

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!

Sunday, February 15, 2009

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! :)

Friday, February 13, 2009

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?!

Monday, February 9, 2009

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

Friday, February 6, 2009

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

Tuesday, February 3, 2009

How have i not posted about all this yet?!

It would seem i've been somewhat remiss the last couple weeks, not posting the latest news in Asherland. So, my apologies. And now i'll attempt to make up for it.

As you may or may not recall, Asher was admitted the other week to SickKids for the weekend for some good old-fashioned observation. They saw him desatting to the 50s and 60s, high blood pressures (and by high, I mean, higher than mine!), and his heart rate jumping up at the slightest activity. and just so we're clear about this "jumping up" comment, let me give you a couple examples:

  • He sat up in his crib, and his HR jumped to 140. When he sat up. Yeah.
  • He walked around his room for 5 minutes. 150. And short of breath.
  • He walked around the ward for 10 minutes. 170. And desat to 59%.
  • He took 10 steps across the play room. 155. Sats in the mid-60s all afternoon.

Ok, i realize that those numbers don't mean much to most of my readers, but that's ok. You heart moms and docs all know what i'm talking about (oh, please, Pepy, don't read this post. LOL). For those of you unschooled in the basics of Paediatric Cardiology, i'll say this: those numbers? Yeah. Not good. Asher simply should not be doing this at this stage. Or ever, in my opinion, but what do i know? Well, other than knowing that oxygen is good, and heart attacks are bad. (ok, fine, Wendy, i know a lot. Sheesh! i can hear you protesting from here! LOL)

When we were discharged from SickKids on the Monday, we were sent home with a Holter. Gosh, i love those. <rolls eyes> i understand that they're necessary and help detect rhythm issues and that sort of thing, but let me tell, it was not invented by a heart parent. Ah, well, i guess if it helps them to figure out what's going on in Asher's heart, it's a good thing. I guess. LOL

The other thing is the cath. Asher is scheduled for a cath on Wednesday morning. Don't know what they'll do for this? Well, let me tell you: they're going to be checking pressures and that sort of thing inside asher's heart and vessels in the area around his heart and lungs. How do they do that? Well, for starters, they will be inserting a long tube through a vein in his groin/hip area (the femoral vein) and traveling up that vein and into his heart, where they will be injecting dye into his heart and using that to look around. Inside his heart. Blech. They will also at this point check his pulmonary veins, those vessels that bring red (oxygenated) blood from the lungs to the atrium (left atrium in us, common atrium in Glenn kids). Once they've checked that stuff, they will remove the tube from his groin, and put another one into a major vein (the jugular, i believe, but don't quote me) in his neck. They will then travel down that vein and into his pulmonary artery branches (the vessels that take blood from his head, neck and upper body into the lungs. Blood from his lower body doesn't go the lungs yet). They will be looking around and checking the pressures in the PAs tomorrow, as well, knowing that the pressures were high in May after his surgery, and that Asher is very fond of scar tissue, and he has some lovely patches in there thanks to Dr Caldarone.

Needless to say, Wednesday is going to be a rather freaxious day. I'm not really looking forward to hearing what they find. You all know i have my theories. But to be honest, i don't know what i'm hoping for. I think i'm hoping that they'll find something wrong, because then they can fix it and Asher will improve. And if they don't find anything, then what is causing all these symptoms?!

So that's heart stuff. I will post results of the cath as soon as i can.

In other Asher stuff... we have nephro (kidneys) clinic this morning. Ultrasound, bloodwork and doc. And how much do i love our nephrologist?! Lovely, lovely man. Very nice. I don't think we'll be getting any real news today. The HCTZ has been helping to lower asher's blood pressure and reduce the calcium build-up in the kidneys, so i don't think that will be too much of a concern today. Calcium in the kidneys is not a good thing. And asher had quite a bit of it at one point, but in a delightful, non-Asher-esque development, it has been getting better over the last year or so, and i can't imagine that anything there has changed.

Let me see... anything else to report?... ah, yes. Got a call from genetics in Toronto the other day, and we have an appointment scheduled for April. I don't know too much what to expect, although i know i will be receiving a form in the mail in the next little while which will ask all about Asher's family history. That should be interesting. I'm (almost-ish) looking forward to this appointment, i think. I would like one of two things: either we will get some answers, or they will see that HLHS and his other issues have just "happened" and then they'll leave us be. (and yes, i know... the odds of a hospital leaving us alone would be a miracle, but a mom can dream, no?)

So, there you have it. The low-down on Asher's medical stuff right now. I'll post again when i have some more info for you. Meantime, please pray for my boy, and for us all. Thanks so much. Talk to you later! J