plus ca change...... sigh....

ok, so remember the other day when i said that everything was going swimmingly and asher has never been healthier and more stable than he is right now? yeah. forget that. sigh.

as you may or may not know, summer is not asher's friend. he loves the sunshine, and he loves being outside, playing in the sandbox, driving around in his little tykes car, drawing with sidewalk chalk, riding his trike, you know, all that fun - and normal! - 2-year-old stuff. but, alas, summer does not return to love. heat and humidity really take a lot out of him, unfortunately. and since we live where we do, there's a lot of humidity. (as for heat, yeah, where's this global warming we're being told about? i mean, would it be too much to ask to have temps above 23C?!?! i mean, seriously!!! anyhoo...)

due to the heat wave this week, asher wasn't looking so good. very pale and sweaty, not much energy, and so on. and blue spells. yeah. he's been having blue spells all week. but again, summer is not an ideal time for my little man. so he's been looking pretty bad this week. but, the weather wasn't nice, so i didn't think much of it. just brushed it off, knowing this is what happens. (that being said, he slept at his dad's place on monday night, because his apartment is cooler than the upstairs at my place, and since ash was looking pretty rough at dinner in the cool kitchen, i sent him to ed's.) but other than that, i brushed it all of.

and then came a storm on thursday, and that broke the humidity nicely. so friday was GORGEOUS!!! asher spent most of the day outside playing, making wonderful memories (i hope) with his brother and sister in the backyard. but...

he turned blue again a few times. not too badly. i mean, i've seen him worse, and recently, at that. but still, it wasn't hot, it wasn't humid, so really, ash should not have been doing this.

at dinner on friday, he was blue. and i don't mean a pretty shade of baby blue. i mean, his mouth was navy blue, and his hands were blue-grey and COLD!!! so needless to say, i took him to emerg. if it was still hot and humid, i wouldn't have thought much of it, and moved on with my day. but it wasn't. and he was not looking good. still playful, mind you, so i wondered if i was overreacting a bit, but i can't really be too careful with ash when he does this, so i took him in.

and of course, true to form, we got there and he was great. good colour, playful, vitals were great. seriously, he played the whole time we were there.

and the resident came to see him, and i said to him, "yeah, he's looking great, he's got lots of energy, he hasn't had a blue spell the whole time we've been here, so i'm happy to just take him home now." he seemed cool with that, so he went to chat with the attending. who sent in a nurse to check his sats (can't send him home with blue spells without checking the sats). and they were... sit down... 69%!!!!!!!! and since ash usually sits in the low 80s, this was a HUGE problem. we moved the probe around, putting it on his finger, his thumb, and still 69-74%. so we went out into the hall and tried another machine, hoping it would give us a better reading. nope. still low 70s. ugh. so we had him sit down, and put the probe on a toe. and it was still low 70s. after a few minutes of resting, though, it crept back up to the low 80s. but again, that was after some rest. so....

chest x-ray, ecg, and bloodwork (just a cbc this time, so they did a finger poke). everything looked fine, although his haemoglobin was only a bit higher than cardio wanted (they said, "if it's below 130, we'll have to admit him" which means transfusion). (and why do we care about haemoglobin? haemoglobin is the fancy-schmancy name for red blood cells. these carry oxygen to the body. hypoplasts/single ventricles usually have high haemoglobin to compensate for the low oxygen levels. if it gets too low, then there won't be enough oxygen in the blood, which shows up as low sats. transfusion = higher haemoglobin = higher sats. there you go. a quick phlebotomy lesson. feel enlightened? you should. lol) ok, so cardio wanted to see something higher than 130. asher usually sits in the 170s at least. last night, he was at 140. so we got to go home! hooray!!! but wow! that was close, eh?? eep!

well, then this morning, blithe and bram got up at their usual 7:30-ish. which is usually when asher gets up. and he woke up. crying. so he came in and cuddled up with me. and fell right to sleep (with charlie. seriously, he was using the dog as a pillow. too cute!) and he stayed asleep. all morning. i got up around 11 (we didn't get home from emerg last night till after 1, so i was i tiiiiiredddd!!! and i thought ash was feeling the same, so i didn't think much of him sleeping in. though, i'll admit, that boy can run on surprisingly little sleep sometimes, and he never sleeps in. he gets up with the other kids every day, no matter what) and i thought ash would get up at the same time... which he didn't. he just stayed upstairs. so i let him stay, thinking he was playing with one of his toys or something and would be right down. nope. he fell asleep again. which he doesn't do. ever. i went up to check on him after a while, and he was feeling pretty warm, so i grabbed a thermometer and.... 38.1!!! i even checked twice, just to make sure!!! and it was under his arm, which means his "real" temp was almost 40. (for those who don't live in canadian hospitals, let me convert that for you. 38.1C is 100.5F. 40C is 104F. yeah.) so after a quick consult with his homecare nurse, we trekked off to emerg.

they did some bloodwork, and it turns out that his white cells are WAY higher than they were last night, and now his bicarb is low (which means his blood is more acidic than usual. i can't explain this part. i used up all my knowledge of phlebotomy earlier. sorry). so doc decided to admit him for a few days, at least until his blood culture comes back on monday. this way he can get some IV antibiotics to help him fight off whatever it is that bugging him right now. they're assuming it's viral, because they can't find anything. no sign of infection in his ears, throat, tube site or urine.

and earlier, when i got back from getting some clothes etc, he was on oxygen. it seems that while i was gone, his sats dropped down to the low 70s again, and the docs ordered low 80s, so they had to put him on O2 for a while. right now he's about 79 to 83%. once he falls asleep, those numbers should go back up. (hypoplasts/single ventricle kids are the opposite of the rest of us. when we sleep, our oxygen levels go down. when they rest, theirs go up.)

so now we're in his room on D7-400. he's febrile again, a little over 39 degrees under his arm (which means it's a little over 40), so now we're watching for seizures and waiting for the tylenol to kick in. and in the meantime, he's watching treehouse (go, diego, go... thrilling... why does he shout so much?!?!?!?!?!) and i'm blogging and chatting with a friend.

so, yeah. we're here for the weekend. but i'm reachable. i'll be online a lot of the time, and i have my cell phone on (i'll post the number on the sidebar, in case anyone wants to make arrangements to drop off a chai latte for me, hint hint). so, yeah, basically, we're just hanging out here for the weekend. i'll keep the blog updated as i know things (like what it means that his bicarb is low... you know me, i'm determined to figure that out!! LOL), and any results from his culture. we're crossing all our crossables that this isn't sepsis, but i'm maintaining that it's a virus, since he's done this twice before (last november, and again in may), and it was viral. so yeah, we just have to let this run its course, and then we'll be home. i don't think we'll be here long.

i'll keep you updated. i'm on FB, and i'll be keeping my status updated, and i'll update here, as well. so, i guess i'll talk to you later. :)

and the word of the day is: ABSURD, as in, "the last couple months have brought a million things i would NEVER have expected"

ok, so apparently, it's been about 2 months since i posted here about asher himself. and wow, so much has happened. but for once,

MOST OF IT IS GOOD!!!!!

i start with the not-so good, and then move into the good, so we're ending on a happy note today. sound good? ;)

ok... where did i leave off in june? ah, yes, the trip to our local emerg because of a tube infection, and doc wanted to admit asher for CHF (congestive heart failure). HAHAHAHAHA!!!!!! sorry, it's just that CHF is just such a normal part of our lives (horrifying as that may be, it's true) that i don't really think of it as admit-worthy. ah, well, it all got sorted out, and we left with a script for cipro.

which clogged his tube. yeah. seriously. so, the friday after we got the script, we were in Intervention Radiology for a tube replacement. i hate those, i really do. and asher's not a huge fan of them, either. :(

so they changed the tube, and saturday night, the cipro clogged his tube. again. so...

sunday morning, we were back in IR for another tube replacement. and you'd think, by now, i'd be pretty used to all this, and while it's stressful for both of us, i can get through it. apparently, this time, not so much. haha bit of a story here:

so, they've put in the tube, and the nurse is just securing it. doc has wandered off to do whatever docs do after shoving a tube into a toddler's small bowel. anyway, i'm standing there, still holding asher down, when all of a sudden,

"i'm going to pass out."

they look at me and i'm pale and clearly not feeling right. so they order me onto the floor. (and it's sunday morning, remember, so picture all this with me dressed up for church. yeah.) in comes the doctor, who grabs me a stool for my feet. then he gets me a pillow, because i'm resting my head on a (dirty) concrete floor. (and yes, in the middle of all this comotion, i actually thought, but this is going to wreck my hair and i still have to go to church! funny what the mind does at times like that, eh? because there's no way i'm that shallow! ) so then they give me a choice: do i want ginger ale, or orange juice? i didn't know, so they brought me ginger ale. and so there i was, lying on the floor in interventional radiology, with a pillow and a warm blanket, my feet on a stool, drinking ginger ale while the doctor dressed asher for me. it was quite a scene. so they let me lie there for a few minutes, to make sure i was ok, and then a nurse walked with me down the hall to mom and the kids, who were waiting.

now, this is how often we're in IR: mom asked what happened (because i am still very pale and clearly not feeling well), so the nurse fills her in. and then adds, "it's funny, because she's never done this before! all the times she's been here, and she's always handled it so well, she's the mom who can take it, so this is just so surprising!" that's right, she used the phrase "all the times she's been here." this nurse knows me. in interventional radiology. my least favourite part of a hospital. yup. ugh. but i recovered, and when we got to church, asher ran into his classroom and played as if nothing had happened.

so we finished the course of meds, and it was good.

then a week or so later, asher came down with a nasty cough. a barky cough. in july. yeah. croup. only asher gets croup in JULY!!! so off we trek to emerg, where we have a delightful chat with dr k, who was not the attending, but just popped over to chat. that's right, a social call from an emerg doc. yeah. nice, but in an absurd sort of way. anyway, we chatted with her, ash got a dose of dex, and we went home, and all was good.

and then i'm sure there was another tube change in there somewhere, but i can't remember when or why. but there was.

then his tube site got infected. again. ugh. so off to (london) emerg we trek once more. and the attending that evening was dr joubert, whom i really like. head of emerg, and as i recall, his specialty is paeds cardio. which i appreciate. LOL ok, so he looks at the site, swabs it, and gives us script for an antibiotic. but not cipro! something else, that starts with d, i think, but i don't remember what it's called. but it worked, so you can bet next time i'll be calling the pharmacy to find out what it was so i can mention it to whichever doc we're seeing. because this med DIDN'T CLOG HIS TUBE!!!!! HOORAY!!!!!!!

now, once that course was done, asher was pink, happy, not puffy, breathing nicely, everything was awesome! and THAT, my friends, was when we had a cardiology visit in toronto.

the nurse, siobhan, took one look at asher and nearly cried because he looked so good. all his numbers were absolutely perfect (well, for him, anyway). sats: 85-86%. that's all i remember. i didn't bother paying attention to his HR and BP because they were perfect, so who cares!! asher had energy, he was playful and happy; honestly, i have NEVER seen him look as good as he looked that day. even dr russell couldn't believe it! she was shocked that he looked so good, especially after 2 tube infections and croup. it was just so wonderful!

oh, and her decision re upcoming clinics: she's cool with us sticking with her in toronto, which is nice, because i'm still refusing to deal with london. and as for upcoming clinic visits: we'll have an echo when we go for pre-cath clinic in october and that's it!!!!!!! echo/pre-cath, cath, fontan. that's the plan. asher's doing so well, we don't need to go back until the cath!!!!

in the meantime, asher's doing fantastically with his eating... when he does eat. and he's doing really well with swallowing. he drinks water perfectly without a problem. you've probably heard him (seriously, why are all my kids loud swallowers?!?! it's disgusting!!! grossest. sound. ever.) so i took him to see dr b about changing his feeding schedule so it only runs at night. my thought was that, with the pump only being off a few hours a day, he's not getting really hungry, so he doesn't want to eat. but i know he can now, so we changed his feeds to run at night, and naptime. and the change in him is incredible!! he's so happy now to just be a normal kid! no more backpack, other than when he wants to be like blithe and bram and pretend he's going to school. and that's a normal backpack, not the one for the pump! and it's filled with toys, instead of medical equipment!! it's so wonderful!!!

and there's something else to report... but what is it?? ah, yes, i remember. asher was sliding off my bed the other day, and his tube got caught on the top of the mattress while he kept sliding. so... back to IR. that was last monday morning. another week, another tube. and this replacement was so bad... i almost passed out again, and asher was crying that it was "too scary" and "hurts me" and trying so hard to get away. but we got the new tube in, and he got some stickers, and by the time we left the hospital he was happy again. that kid.

well, after that tube change, i decided that all this needs to change. i took him to see dr b (paeds) that afternoon to discuss his tube. namely this: i want to change it from GJ to G. (for those non-enteral-savvy-types: a G-tube goes directly into the stomach. feeds can be larger, and spaced several hours apart [bolus feeds]. asher was given a GJ-tube, which goes through the stomach, down through digestive tract and into the small bowel [jujenum]. this is the 2nd-to-last resort tube.)

so, a little history here: asher has always been tube-fed, since his diagnosis at 8 days old. he had an NG-tube for the first 9 months (naso-gastric: goes up the nose, down the throat, and into the stomach). this was due to his difficulty swallowing (dysphagia) and fatigue during feeds. at 9 months, he was given a GJ-tube, because of his severe reflux (which by then was causing apnea and failure to thrive) and the aspiration risk associated with his throat problems. now, a lot of asher's gastric issues were believed to be caused by some damage to his vagus nerve, which would have happened during his Glenn (open heart surgery - including aortic arch reconstruction, done at 6 months). this damage would take time to heal (1.5 to 3 years is the norm). and fyi, the GJ-tube is one of the "last resort" tubes. it is NOT one they do routinely, for a lot of reasons. but this is the only one that would really help asher, so it had to be done.

so, since getting his GJ-tube in September '07, asher's been on continuous feeds, which means that he is being fed 20 hours a day at first, then down to 18 hours, and now, 13 hours (thanks to overnight-only feeds and high cal formula).

but lately, since changing the feeds to nighttime only, asher has been making remarkable progress in his eating. in fact, last night at supper, he ate almost as much as bram! he's been eating really well, actually, with no aspiration issues, no reflux, no difficulty swallowing whatsoever. he still tires out from eating, though, so he is not yet able to eat enough to sustain himself, but he's getting there! (and that's a cardiac issue, not gastric, so who knows if that will ever change) but now we're at the point where he only needs the tube for meds and calories. which means....

tomorrow morning, asher and i go to london to consult with gastro about changing that tube. i'm sure they'll say yes, and it's just a matter of time before that pesky GJ-tube is just a distant memory. :) i'll post tomorrow and let you know how it all goes.

so that's our lives over the last couple months (at least as far as asher's stuff is concerned). sorry it was such a long post. i'll try to do better at staying on top of things here in the future. promise. :)

If You Only Had One Wish...

so, i have an app on facebook called "circle of moms" and every once in a while (every week or so, i don't know, i don't keep track) i get a link to their blog. this week, there is a poll on there, asking what you would wish for your child. the choices are:

• health
• true love
• wealth
• influence
• professional success

so i'm posting the link here for all you moms... please participate, and read the comments that people have left (including my own, if you feel so inclined).

http://fansofbeingamom.com/?p=73

emerg update

so, as i said in the last post, i took asher to emerg tonight. i took him to our local hospital b/c his paeds in on call this week, so i felt comfortable taking him there.

well, with the waiting room packed, dozens of people waiting, asher was taken right in and put in his own room. the room, coincidentally, looked freakishly like an operating room, complete with giant light above the bed. and i say "freakishly" because, well, asher freaked out. he did NOT like that room. and he REALLY did not like that light. the one right above the bed. yeah. i have never seen him that upset in emerg before, which is saying something, given how much time he has spent in emerg.

anyhoo... the doc came in, and checked him out. i gave her a VERY brief history of asher (why do i keep forgetting about his looooooooooooong history of congestive heart failure? i mean, really, he's always right on the verge of it, and he's on so many meds for it. specifically, ALL his meds save domperidone treat it.) anyhoo.....

i guess this doc has never seen a toddler with CHF, so she was almost ready to admit him! LOL she asked me what i'd think about staying, and i said, "it's just CHF... i've dealt with that at home for 2.5 years. we usually just up his diurretic and go for follow-up. i don't really think he needs to be admitted for this." she didn't seem convinced.

we also went for an infection in his tube site. it's been getting uglier and uglier over the last week. and by now we all know about his wonky immune system, and how he really can't handle bacterial infections (or viral ones, either, but that's a whole other story). so, during my discussion with the doc about his tube site and such, i said, and i quote, "and i know the usual antibiotic for this type of infection is keflex, but it doesn't do anything for asher. we try it every time, and it never works." so she asked what usually does the trick, and i told her that cipro ends up being the med of choice.

so she went and discussed all of this with dr b. she said not to bother admitting him, but that she'd be on the ward in the morning, and if i wanted to bring him in to see her, that's cool. she also said, "listen to mom. keflex doesn't work. go with cipro instead." hooray for paeds!!!!! :)

so.... asher's home tonight, about to get his first dose of cipro, and i'm not sure, but he just might be going over to the hospital in the morning, just for a quick visit with "docter tollee" but i haven't decided yet for sure. but there you go. our evening. :)

and now, after re-reading what i've written, it sounds like my chat with the doc was, um, somewhat confrontational. it really wasn't. it was actually quite pleasant. in fact, she reminded me of my favourite emerg doc in london, so it was all good. :) i know this doc just hasn't dealt with anyone quite like asher before. and in the end, she listened to me, and that's a good thing. :)

i suppose he might have a point.... *might* have a point... i'm not saying he's right. but he might be. ;)

our dinner conversation tonight:

me: seriously, is there anything better than hash browns?!

asher: yes.

me: oh, really? what?

asher: me!!!

and on another quick note: i'm taking him to emerg tonight. his paeds is on call in town here, so we're going there. his tube site is looking pretty bad, and his nurse this morning recommended taking him to see the doc. and he's uber pale lately (see the pic), with blue spells, sweating, puffiness and SOB. :( so, i'm taking him in to get checked out, and i'll post sometime this weekend with the verdict.

hooray! more good news! go asher go!!!!

so, heard from cardio this week....

dr russell is very pleased with how well asher is responding to his new meds. so, her nurse told me yesterday that dr r wants to see asher again in clinic.... wait for it... IN 8 WEEKS!!!!!! MID-JULY!!!!!!!!!!!!! WOOHOO!!!!!!!!!!

and after that... the cath.

in... wait for it... OCTOBER!!!!!!!!!!!

and they'll book the fontan from there.

sign me up for more news like that! awesome!!!!!!!!!!

look at my boy, growing up so fast! :)

asher and "easter bunny" on his big boy bed
look at him, with his big elmo and the blanket i made blithe when she was a baby... and now she passed along to her baby brother. :)