Monday, September 28, 2009

enough of the bad news... here's what he's REALLY like :)

at bedtime tonight, i asked asher to put his boots by the door. i meant, in the basket with all the other kids' shoes, or on the shoe rack with mine. i forgot that a 2-year-old asher is a literal asher. lol
we were cuddling in bed tonight, trying to get him to sleep. (didn't work, btw... he's playing with blocks right now... serves me right for letting him fall asleep at 5pm.) anyway, he rolled over so he was facing me, and he said, "mommy, you so pretty. you so snuggly, too." and then he threw his arms around me and hugged me.
he plays with charlie (our dog) every chance he gets. and charlie is very patient, letting asher grab onto his face, pull his legs, that sort of thing. sometimes, charlie starts licking him, which gets shrieks of delight and "charlie likes me! charlie likes me!!"
we went grocery shopping today, and he threw a fit when i wouldn't buy him cheese strings. he absolutely loves those things!! the kid's obsessed with fake cheese! ugh!
i think that's about it for now. there's a million other things, but i'm gonna keep them for myself, if you don't mind. ;) i just wanted you to know he's more than a wonky heart and feeding tube. he's an absolute joy, and i adore him. <3

Sunday, September 27, 2009

the countdown is on

while organizing my craft space today, i found a letter from sick kids about asher. his pre-fontan cath has been scheduled for november 25th. they will use this cath to set a date for his third stage surgery, when they complete the surgical course for his HLHS. i'll post the details of that surgery once we have a date set for it. but there you go. november 25. not as close as i'd thought, but still... is anyone else feeling slightly freaxious??

because it's not enough with asher's stuff...

so much has happened recently around here...

asher's tube is still (or again) infected, quite badly. doc put him back on clyndamycin for another week. i'm hoping this will clear it up, because he spent wednesday, thursday and part of friday crying because his tube hurt so badly. he hasn't been crying this weekend, so i think it's on the mend.

i'm going to try something new with him once this course of antibiotics is done. i'm going to try giving him some probiotics. he's been on antibiotics since early august, with only a few days here and there without them. and given that, after the staph infection earlier this month, he ended up with a fungal infection in the tube site, i really think this has the potential to help him immensely. (for those who don't live in paeds clinics: antibiotics kill bacteria. that's what they're for. and they do a good job. but the problem is that they kill all the bacteria. our bodies still need some bacteria to keep everything balanced. but when the good bacteria is gone, it disrupts the balance, and things like yeast and fungus can begin to cause problems, which explains why some people struggle with yeast infections while on antibiotics. probiotics help restore the balance to the body, by promoting the growth of "good" bacteria.)

on another non-asher note... blithe was diagnosed earlier this week with ADHD. and, i know this will shock you, so make sure you're sitting before continuing to read this sentence... sitting?... good. i've started a blog. it's called My Girlie & Me, and in it, i'm going to write about how blithe is doing, medical and non-medical ways of dealing with this condition and how blithe is doing with it all, and resources i've found on the subject. feel free to check it out: i just set it up today, but rest assured there will be more posts coming. (as if there was any doubt about that! LOL)

Thursday, September 17, 2009

now, i know it's been a while, but once you read this post, you'll understand why it's been so long since i updated.

ok, so last time i posted here, asher was getting his g-tube. and that went really well. it was very quick, not quite as traumatic for asher as tube changes usually are, and we were all happy. since then, the tube's been working great, and i'm loving this whole non-gj life.

there's even a bonus i hadn't anticipated! asher gets hungry now! he actually eats at every meal, and actual measurable amounts, no less! and he's loving it! i think he's starting to feel more like an average, normal kid, instead of a SN kid, and that's wonderful! well, except for one minor little problem... ALL HE WANTS TO DO IS EAT!!!!!!! wow, never thought i'd complain about that! lol

and if you're wondering, his favourite foods are chocolate chip cookies, pepperoni pizza, and cheese. specifically, "orange cheese." if it's not orange, he's not interested. lol

as for everything else, well...

as i said in an earlier post, asher's tube site was infected. i took him to emerg on the sunday night a couple weeks ago, and they swabbed it, and the sample grew staph. nice, eh? ugh, that's what happens when you're in the hospital as often as asher is. :( so we were given a script for clyndamycin (aka, Dalacin). but...

and you know there's always a "but" with asher...

the infection didn't clear up. so after five days on clynda, we trekked back to emerg. where they swabbed the site, and they prescribed cipro, but told us to continue the clynda for its full course, because of the staph. but she added, if it got any worse, asher would have to be admitted for IV antibiotics.

so we gave the cipro a whirl. but after a few days of that, the infection just looked worse. and i mean, it was the worst-looking tube infection i've ever seen, and my boy's had some doozies. (remember when he had to be admitted for this very thing? yeah, that was bad. this was worse.) so again, back we went to emerg, with bags packed, ready to be admitted. by now there was an absess-looking-thing on the site, and it was all things nasty infection. blech! all i'd have to do was look at it, and he'd cry. and this after a week and a half of big antibiotics. we saw the doc, who swabbed the site again. apparently, the previous swab hadn't grown anything, but the doc this time was certain it looked like MRSA (drug-resistant staph... not good). so he discontinued the cipro and prescribed... get this... keflex. that's right. the med that has NEVER worked for asher's tube infections. that's what he gave us. and i said to him, "that never works. he's been on it before, many times, and the infections always get worse. it's not going to work." he says, "no, staph responds to keflex. so we're gonna try that." forget that asher has a weak immune system and half a heart and really can't tolerate these kinds of stubborn infections. nope. doesn't matter. we were sent home with a script for keflex.

i was not impressed.

so, the next morning, i called my favourite paediatrician. her advice (and i'm quoting here): "take him right back to emerg right now and demand to see dr s."

well, you know me, i always do as i'm told. ;) so we went back to emerg one last time. where dr k consulted with dr s (infectious disease specialist), who figures that since the last two swabs grew nothing, that the problem is likely no longer bacterial, but rather fungal, and the antibiotics are making it worse.

well, let me just say this: dr s is my favourite person ever now! the med she prescribed worked beautifully - after the first dose, his site was noticeably better, and by the third (and last), it was back to healthy.

you'll notice i wrote "was back to healthy." that's right, past tense. ugh. i changed asher's dressing today, and it was nasty. oozy and red and painful. needless to say, he was not a happy camper. so i took him to dr b today, and she looked at the site, and we left with a prescription for clynda again. so we'll see how this works. cross your crossables. :)

so there you go. several trips to emerg, a couple nasty infections, and charlie is muttering in his sleep right now. lol has nothing to do with asher, but it's cute. lol