Monday, March 14, 2011

sigh...

a little bit about asher first, then moving on to bigger, more important things...

asher's amazing paeds dr b talked to dr caldarone the other day. she asked him whether or not asher's chest pains could, in fact, be growing pains. dr b figures, he put all that stuff in there, so he should know, right?

he said, "have they looked into the possibility of ischemia (lack of blood/oxygen to the heart muscle)?"

"they checked his CAs in an echo, but that only shows the beginning of the vessels, so it's not conclusive. and since these pains only happen when he's active, it's got me wondering... but doc said they can't do a stess test on a 4-year old..."

"but they can do a stress echo. that's easy to do." (a stress echo is where they give the patient a dose of dobutamine to increase the heart rate, replicating the cardiac effects of exercise, and they do the echo/US to see how the heart functions under stress.)

so dr b is going to be speaking with london and yes, dropping names (she asked dr c, "can i tell them i talked to you?" and he was cool with that) and asking about a stress echo. from what i have seen of london, i don't think they like to do DSEs (dobutamine stress echo), but i could be wrong, but we may be facing a trip to toronto's clinic.

dr caldarone pointed about that it is not uncommon for fontans to develop ischemia, which is why it came to his mind right away and he is concerned. ischemia can be asymptomatic (no symptoms), or it can lead to things like chest pains and heart attacks and all kinds of things.

one more quick thing about asher: i will be taking him in for another session of play therapy this week. since he was taken to emerg from school the other week, he has regressed in a few ways and has decided that he just wants to be a little boy forever because he's scared of growing up. just a month ago he was all about being a big boy, but now... not so much. i'm just waiting for an appointment time.

but in happy asher news, he is now working on potty training. he's actually out of diapers now. (ok, it all started because i ran out of diapers and only noticed right at bedtime one night, and since i refuse to take the kids to the store at 8:30 at night, we had to make do.) but he's been in underwear for a little over a week now, and he's doing great!!! he's dry overnight, and he's usually dry all day, with only a few accidents all week. he's actually becoming quite proud of himself!!!

so now that you're caught up on asher, we're switching gears a bit to something far more urgent and important.

Asher's favourite "best," his friend B, is back in hospital. asher and i met B and her mom in hospital last spring, and we have become very close. B is not a heart kid, but is extremely complex and fragile. and this admission... yeah. it's bad. terrifying. i cry whenever i think about what's going on, actually. here is the latest, from her mom's FB status:
It has been a long night - B has not turned the corner yet. I have not seen her blood results yet today, but through the night the bleeding started. I will spare you the gory details, but this is "the" next step in the DIC - the only way to treat it is to eliminate the cause, and that is taking its time. Please continue to pray, cross your crossables, whatever you can do...
if you're interested in reading more, to better understand what is going on, please check out her blog. this is a terrifying admission. right now, Brigid needs all the prayers she can get, as do Allison and the rest of the family, not to mention the docs who are trying to figure out what's going on so they can treat her, and the nurses who are caring for her. please please please pray, send vibes, cross crossables... whatever it is you do, please do it. and please spread the word. this is a wonderful family, a dear friend of mine, a beautiful little girl who is asher's "best," and this is absolutely heartbreaking and terrifying. please pray, spread the word, add them to your prayer lists, your church's prayer chain. thank-you.

i'll try to keep you posted on B. suffice it to say, this illness is not getting better yet. she needs a miracle. thank-you.

No comments: