Saturday, January 16, 2010

you're gonna want to sit down before you read this........ BECAUSE IT'S AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ASHER'S TUBE IS GONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
i hadn't run a feed through that tube in almost 3 months, because he's eating so much on his own. so much so that, you may remember, he has actually gained weight since the fall. that's right! my little man, who didn't eat by mouth for 2-1/2 years, is eating everything by mouth now!!!!

and taking his meds orally, too!!!!!!

which means that, anymore, the only thing the tube has been good for has been collecting bacteria. boo!!! so this afternoon, after he'd been begging me for days, the tube came out.

for good.

it's all bandaged nicely now, and asher couldn't be more proud of himself. and the other kids are proud of him, too (just ask the cashier at wal-mart! LOL). and me... well, there are no words for how proud i am of asher. he's come a long way. it wasn't so long ago that eating and drinking was just too much for his little heart. and then with the nerve injury, swallowing anything could have killed him. and now look at him!!! growing and thriving and just being a NORMAL BOY!!!!!!!!!!

this is probably the most amazing day asher's had in a VERY long time. :) it just shows how absolutely miraculous this boy truly is. and now, how absolutely normal he is.

Tuesday, January 12, 2010

let the countdown begin!!!!!!

i got a call from the HSC surgical co-ordinator yesterday. there's a funny story about it, but first, the good news:

asher's surgery is scheduled for March 2.

the fontan.

asher's ONLY surgery.

no mention of arch reconstruction. just the fontan. i still want to vomit, but it's a happy vomit, so it's good. one surgery instead of two. ECMO (by-pass) instead of circulatory arrest. planned surgery only instead of fixing unforeseen problem AND planned surgery. it's almost too good to be true!!

and now the funny story:

ok, so she called yesterday as asher and i were heading in to emerg in london. asher had had several blue spells in less than 24 hours, which was a marked increase over his usual one every few days. so she asked if i had a paper and pen handy, and i said, "well, actually, we're on our way to the hospital right now, so no."

"oh, to sick kids?" she asked.

"no, children's in london. we're going to emerg."

"oh, no! what's going on?"

"oh, nothing big. just a few blue spells."

to which she replied... get ready for this... "ok, i'm writing all this down. now, these blue spells, has he ever had them before, or is this something new for him?"

i'll give you a minute to stop laughing. (don't feel bad. i literally laughed out loud when she asked that!)

so i said, "no, he gets them all the time, but he's had several more today than usual, so i'm taking him in."

"well," she said, "make sure they check him out thoroughly, do everything they're supposed to do. they need to get to the bottom of this."

i'm not going to tell her that we waited in the waiting room, then they put us in ambulatory care, where they gave him a quick listen, check his BP, and sent us home. (which makes it sound like a quick trip. we were actually there for 4 hours or so. and his sats were fine, his BP was a bit low in triage, but it was fine later before we left. and we're NEVER in ambulatory care. i think this was the first time asher's ever been in there.)

so there you go. surgery date and a trip to emerg. all in all, a normal day in our world. :)

Friday, January 8, 2010

hey! guess what!!!

asher's tube is infected again!

we changed the dressing today, and lo and behold, it was all things nasty infection. blech. so i called our paediatrician, who said, "ok, which med do you want?" i told her clyndamycin, since it's the one that works (she isn't the one who gave us clavulin). doc asked, "ok, no problem, but you've gotta give me some time, b/c i don't have the dose here, and i'll have to look it up."

would you be surprised to know that i replied with, "oh, i have it right here." LOL

so, i gave her the dose, specified PO instead of G-tube, which was a lovely specification. (for those who don't know, "PO" means "by mouth." that's right, folks, asher now takes all his meds by mouth!) then i gave her the number for the pharmacy, and we picked up the med tonight. LOL

anyhoo, just thought i'd let you know, b/c i promised that i'd post about the infection, when/if the clavulin worked. and it didn't.

and there's another fun post, but i'll do that tomorrow, when i'm not so tired. it's about asher's 3-year check-up, which was earlier this week. oh, wait, that was only yesterday. yeah, i'm going to bed now. goodnight! :)

Monday, January 4, 2010

cutest. kid. ever.

k, i just rediscovered these pics tonight, and i had to share them. sadly, though, i don't remember when they were taken. all i know is that it's in the hospital in London... i think... but i don't remember why we would have been there in the last couple months when he wore this hoodie. hmm... ah, well, doesn't really matter. what matters is that my little man is the cutest little thing ever. you know i'm right.

Friday, January 1, 2010

the plan for asher's surgeries

so i got a call from dr russell on wednesday, of course, when i couldn't talk. LOL anyway, we now have the plan for asher.

the plan is to do his surgery(ies) in late february to early march, which is wonderful. for one thing, it gives us a bit more time. i was expecting by "early new year" that would mean mid-january. this gives us quite a bit more breathing space. it also means that asher is stable enough to wait that long. quite a change from a year ago. :)

you'll recall that time a year ago, asher was suffering from CHF after his illness in november, and we were getting brushed off in london. thank-you, dr russell, for listening to me. she's such an awesome doc! :)

ok, i should go for now. two posts in one morning, and it's not easy to type with a sat probe on your finger! LOL ttyl :)

ps - i'll post specific dates when i get them.

another day, another trip to emerg

ok, on sunday i posted that ed took asher to emerg with (another) tube infection, and they prescribed clavulin. well, on monday, asher was febrile (low-grade fever), puffy, lethargic, somewhat irritable, and a really bad shade of blue/grey. so i took him to emerg. we saw dr joubert, whom i informed of the infection, and he was concerned, because, well, he knows asher by now. whenever we're in emerg and he's one of the attendings, we deal with him. it's lovely. i really like him, and the fact that he knows cardio better than any of the other emerg docs is reassuring. so he ordered bloodwork (CBC and culture) and a chest x-ray, just in case. but at the end of the day, there's no obvious signs of failure, and the bloodwork was a little off, but that could just be the tube infection. so he sent us home, promising to call if the culture was positive. he hasn't called. so i'm happy.

on another, non-asher note, i have now been admitted to hospital. i went to emerg in st thomas on tuesday night, thinking i had an ear infection that was affecting my throat, because the glands were swelling and i was having really trouble breathing. i was sent home with liquid codeine for the pain, and something to gargle. but how can you gargle when you can't tilt your head or breathe?? and liquid codeine would help... if i could swallow, which i couldn't. nice. my condition continued to deteriorate, and i couldn't sleep, couldn't breathe, couldn't swallow my own saliva, and my neck was so swollen i didn't have a chin anymore. my dear friend annie took me to emerg in london, where i was rushed in (within an hour, instead of 7-8), and quickly diagnosed with supraglottitis (an infection of the epiglottis, which causes it to swell and block the airway... yeah, it's potentially fatal. i have a tracheotomy kit beside my bed right now, and i was minutes from going to the OR to be intubated.) it was really scary. now i understand a bit of what asher goes through: no oral feeds, IVs, constant sat monitoring, bloodwork, stuck in a hospital all the time, trouble breathing, irritability and anxiety. yeah, it's scary. but now today, after several doses of IV steroids and antibiotics, some oxygen therapy and lots of fluids (when i'm allowed anything), seems to be doing the trick, and today i feel better than i've felt for days. oh, and let's not forget the pain meds. mmm... pain meds... although when you're NPO and have the munchies, it's not so fun. LOL

so that's an update for this week. hopefully there will be nothing else to post any time soon.

oh, no, i spoke too soon, but i'll put it in another post.