on chest infections and immunology...

i just realized today that the last post here was about asher being sick, and i kind of left you hanging with that. my bad. so here's what you need to know.

he's better now. a few days of antibiotics cleared it up quite nicely, and although he's puffy off and on now, he's much better. so that's good.

and this week was our semi-annual immuno appointment.

i was all set to tell them that there's obviously nothing wrong with his immune system, since he's in school full time and the flu and chest infection were really the only things he's caught, and really, who doesn't get the flu or a chest infection in the winter in ontario, right? so he's fine and we're done, thank-you very much.

anyway, we went for the appointment, and the fellow came in. he asked a lot of questions like "has he had any weird rashes? any skin absesses? how long did it take him to get over the flu? what was the infection treated with? has he had this? has he had that?" oh, and the famous, "have you been to genetics?"

sigh... genetics...

now, immuno has been nagging me about genetics for 3 years now. they are convinced that asher might have DeGeorge Syndrome. i am convinced that he doesn't. wrong kind of heart defect, wrong kind of kidney issues, non-congenital feeding issues, he has chromosome 22q11 (the absence of which is an important marker of DiGeorge), and unless you count severe cuteness as a facial deformity, he doesn't have that issue, either. the only thing that's right is the type of immunedeficiency. so i don't think he has this particular issue. and really, what can genetics do? nothing. so why bother??

but i have tried this argument with them for a couple years now, and they're still nagging about it, so i tried another angle this time.

"well, i'm not currently planning on having anymore kids, so... yeah. we're not going. if i change my mind at any time, then we'll go. but the way things stand right now, i don't really see the point."

"oh. well, if you're not going to have any more kids, then there's really no point. no problem."

then on to the physical exam. he checked asher's ears, nose, and throat. then he laid asher down to check his stomach. he's feeling around and poking around and he says, "does that hurt?" to which asher replies, "nope. it doesn't hurt."

so, curious, i peaked around him and looked where he was checking. and laughed a little bit. and said,

"oh, yeah. i forgot to mention. the hard lump by the scar on his stomach... that's his pacemaker."

"oh, good! i was wondering what that was!"

and we laughed.

well, the fellow and i laughed. asher just laid there and asked about stickers.

so then doc came in. he complimented me on my boots (suede leopard print with 4" heels. yes, i rawk!! haha) and said this,

"well, his lymphocytes are low, but they seem to be working well enough. it could just be that he is at the very bottom end of normal for that, we're not sure. whatever it is, it doesn't seem to be a problem for him right now. but i think we need to continue with yearly monitoring in case it becomes a problem down the road at some point. how does that sound?"

what can i say? i agreed to that. because he actually gave me some information that i can use. for three years now it's been, "i dunno. see you in six months." instead, he told me the situation, and recommended yearly monitoring. i can live with that.

so now i have to find a planner for 2012, and learn what i can about lymphocytes. fun times! haha

and now for something completely different...

no goofiness or reflections today, i'm afraid. sigh...

for the last few days, asher's been coughing pretty badly. wet and crackly, and he's been pale, but it wasn't too serious. just a cough. i figured it was a little cold and it would go away.

it didn't.

in fact, it got worse.

today is his second day home from school. he hasn't been able to get a good sleep for the last couple nights, his heart has been hurting/burning, and he's very snuggly and cranky.

today, he was also puffy and blue.

delightful.

so, we went to see dr b this morning. at first, asher didn't want to go, but wanted to see his BFF B at the hospital. then he wanted to see dr w. i had to literally pull him into dr b's clinic. sigh...

but once she came in to see him, he answered all her questions and breathed deeply and coughed when she told him to, and in the end, he was diagnosed with

a nasty chest infection.

she put him on amoxil for 10 days (anyone else would have gotten 7 days, but it's asher, so it's 10). i'll be getting that filled while i'm at work this evening, and we'll get him all fixed up and better for his immunology appointment next week.

(oh, yeah. we see immuno at sick kids next wednesday. i'm not expecting anything to come of it. in fact, i hope they'll just discharge us, since if he truly were immuno-compromised, he would have gotten way sicker way more often since starting school. but that's just my opinion here.)

anyway, right now he's lounging on the couch with his transformers pillow, monkey blanket and Chickie. he's pretty blue and puffy and short of breath right now...

ugh. i hate it when he's like this.

please pray/cross crossables/send good vibes that the antibiotics will do the trick and he'll be back to his usual spunky self in no time, with no nasty complications or trips to emerg/cardio. if anything does happen, though, rest assured, i'll let you know.

another quick post, so i can get back upstairs to asher

he's doing much better today!!! he's been in a fabulous mood, full of energy, playful... right now he's in the playroom because he's been asking all day to go play with the train table. so he's a happy little man right now.

they're going to switch the vanco and cefotaxime to ampicillin, which is also IV but not quite as heavy-duty as the other ones. they also want to see about switching him to an oral med, which would mean home! :)

i've asked about nephro, so we'll see. we'll probably be leaving here with an appointment.

he's still not eating, though. they've turned down the IV fluids (which were for rehydration and line maintenance) in the hopes that the decreased volume might inspire him to eat and drink on his own. so far, that's not working. but we'll see. he only had 2 bites of pepperoni pizza for lunch. and a Reese cup. but he didn't even want his chocolate milk! what is wrong with this kid??? (although i'm not complaining too much about the choco milk. he didn't want it, so i took  it. teehee)

anyway, i've gotta run for now. i might post again later this evening, but i'm hoping there won't be anything to report, so pray/cross crossables/send vibes that the next post will be called "AND WE'RE OUTTA HERE!!!!!"

talked to the doc...

and there's good news and bad news.

good news first: so far, the blood culture is negative, which means that, at this time, sepsis has been ruled out. so that's AWESOME!!!!

bad news: urine culture was positive, which means we're looking at a UTI. we're staying in hospital for now, at least until we have sensitivities, and then we'll know which med will work. i had to delve waaaaay back into my memory and inform the doc that Septra has never worked for a UTI for asher, so she'll know that, even if it's sensitive to that, not to bother with that and to try something else. she also mentioned some imaging. he had a VCUG waaaaaay back in the way, and it was negative for reflux (basically, backflow in the urinary tract), but dr filler had said that if asher had another UTI he'd order another VCUG and possibly nuclear cystogram (sp?) because sometimes a VCUG can give a false negative. i'll keep you posted.

thanks so much for the prayers so far, and please continue to hold us in the Light for the next little while. i'll continue to keep you posted.

how we got here

well, asher's still sleeping, so i have a bit of time, so i thought i'd fill you in on the events of the last couple days while i have the chance.

asher came home from ed's on thursday prevening (that's around 4:30, for those who don't watch big bang theory... sheldon's right, it's the perfect term, lol). apparently, asher had barely eaten all day. now, just so you know, he hasn't really been eating much since the fontan at all, but especially since he came off the fat-free diet his appetite has almost entirely disappeared. he barely eats anymore, which is concerning since he's usually a bottomless pit, and when you're trying to pack on at least 5 lbs to avoid the dread "FTT" label, you need to EAT! but he hasn't been.

on thursday night, we had cheese pizza for supper. which he chose. which he barely touched. and by "barely touched," i mean that he took his piece of pizza, and then just left it. he didn't even take a bite. then he went to bed, having had some kool-ade and some water to drink. but that's it.

on friday morning, he had a tiny piece of cheese and a slice of ham for breakfast. then we walked the other kids to the bus, and when we got home, he climbed up onto my bed where i got him dressed, and then he just sat in my lap and cuddled with me for a while. normally i wouldn't complain about that, since he's usually a very active child and every second of cuddle-time is a treat for me, but he just curled up in my lap and rested his head against my chest and stayed like that for a while. so i started to get concerned, because at this point i'm usually chasing him all over the house and having trouble catching him (i'm not even joking. this kid is FAST!). but instead of playing, he wanted to watch a couple of the videos i posted here a couple weeks ago. after watching beaker sing Ode to Joy a couple times, and smiling at the swedish chef making hot dogs (asher's absolute fave), he literally just rolled over and fell asleep. this was around 10:15.

he never does this. i usually have to (almost) force him to nap in the afternoons... usually because i'm exhausted from chasing him all morning. so when he fell asleep mid-morning,

i called dr b.

i told her about his lack of appetite, that he has barely even been drinking lately, and she said to let him sleep for another hour or two and call her when he wakes up.

so he woke up around 1 (yes, you read that right, an almost 3-hour nap) and he looked... off.

his energy level was waaaaaaay down, the sparkle was gone from his eyes, and he looked, well... yellow. with a hint of grey. and his nose was blue.

so i called dr b, who said, "yellow?? that can't be right. take him outside and look at him again." so i did. and yup, yellow. with grey and blue undertones. isn't that swell.

she told me to take him to our emerg, since she's on call. she let them know we were on our way, and what his baselines are and about his colour wheel. so off we went.

when we got there, he just wanted to be carried (usually i'd be chasing him around the waiting room) with his head on my shoulder. at triage, his sats were 94% (he's usually 96-98%), his heart rate was 107 (usually he just rides his pacer; at most he's low 90s, even when active), and his BP was 79/52 (baseline is 120s/80s). and his colour? well... i'll get to that.

we were taken right in (which should raise the alarm right there, given that this was st thomas emerg) and put in a room and hooked up to the monitor. at this point, we were thinking it was dehydration and possible migraine. we had a chest xray and they drew bloodwork and started an IV for fluids. then he fell asleep. yes, you read that right, he fell asleep. he doesn't do this. ever.

when dr b arrived at 4, she came into the room, took one look at him and said, "why is he yellow?" "oh, you see it, too?" yeah.

i should mention at this point that the only other time in asher's life that he was yellow was when he was 8 days old and his liver had shut down. yeah. so we're not a fan of this colour. at all.

anyway, we were sent off to london by ambulance. on the way there,

the yellow disappeared, being replaced by a horrid shade of pale, still with the grey and blue undertones (which is an improvement over his usually; he normally is just blue and grey. guess he thought he'd mix it up a bit). but on the way... he started to get warm. like feverish. they took his temp and it was only 37.2 or so, but he felt like he was burning up. and he was still very lethargic.

into emerg, where his fever was even higher. cardio was consulted, but they were happy with the ECG from st thomas and the one done here upon arrival, so dr w is going to follow him closely this weekend, but she's ok with him for now. rhythm looks fine, so no huge concerns. it's just all the other symptoms...

they decided that the problem is likely an infection somewhere, and it's really starting to look like sepsis. so doc ordered two IV antibiotics: ceftriaxone and vancomycin. while the cef was running (this was the first one), asher developed a horrid red blotchy/mottled mess all over his torso. doc saw it from about 20 feet away, it was just. that. nasty. he told me that this can happen while vanco is running, but i told him that asher has been on both of these meds many, many times and this has never happened, so he was very concerned. he decided to throw some benadryl in with the IV, and that seems to have taken care of most of the redness. a few spots remained, but nothing major anymore.

eventually, his vitals stabilized. then the question became "unit or ward?" doc said that if he stayed stable like this, we would go to the ward, but if he destabilized again, we'd be going to the unit. thank God, he remained stable, so we're now on the ward.

we got to sleep around midnight or so, but asher is still asleep (he usually wakes up by 7:30 regardless of his bedtime). the plan for this morning is for more bloodwork, nasal and perianal swabs, and another urine sample.

but it's still really looking like sepsis.

they drew the culture in emerg and sent it off, so preliminary results should be back tonight. this will tell us if it is, in fact, sepsis. within a couple days after that, we would know the bug and which meds to use.

the theories about the source of sepsis? well, there's two:

1. spontaneous sepsis. sepsis usually happens when the blood picks up a bug from somewhere in the body and becomes infected. when asher had sepsis at 10 months, he had no other infections, so this is entirely within the realm of possibility again.
2. when i told emerg doc that asher's pacer site had become infected post-op in toronto, he became concerned. there is a possibility that there has been an absess in the pocket since then, just lurking, and now it's getting ugly. if this is the case, this is even worse than sepsis, because an infection in the generator pocket can shoot up the leads and go straight to his heart. and this is a distinct possibility, as well.

even if it is "just" a spontaneous infection, this is still terrifying. sepsis can lead to some horrifying complications, from toxic shock to endocarditis to heart attack to death. and this is asher, remember, so we're all bracing for some very asherish complications. (you know your kid is complex when he's his own adjective. LOL)

please hold us in the Light. pray, cross your crossables, light a candle, send good vibes, doodle a prayer... whatever it is you do, please do it now. we're all nervous and scared. he's pulled through sepsis before, but that means that he's had sepsis before, so we know what we're dealing with here, and it's scary.

my access to the internet is limited while here, but i'll do my best to keep you as up-to-date as possible. i will definitely post when the prelim culture is back, but the final report won't be ready for a few more days. we're here for a few days at least.

i don't have much time, so this will be a very quick post.

thanks, wen, for updating for me. but now i'm updating again.

forget what wendy wrote about dehydration and migraine. that's likely not it.

not by a long shot, actually.

it's looking like sepsis.

they've started him on two big antibiotics: ceftriaxone and vancomycin. when they started the cef, asher broke out into a horrid blotchy/mottled mess... which can happen with vanco, though i told the doc that asher's been on both these meds before and this has never happened. so they ran some benadryl through the IV and that seems to have taken care of most of the redness. there's still a few spots, but it's not nearly as bad as it was.

they've drawn a blood culture and sent that off. preliminary results should be back tomorrow evening, with the bug and med course mapped out a couple days later. until then....

we're admitted.

if asher's numbers stay the way they are right now, we'll be going to the ward. if he destabilizes again, however, it's the unit.

i'll keep you posted as we learn what's going on. the current theories are that it's either spontaneous sepsis like when he was ten months old (no other infections anywhere, just his blood, which doesn't usually happen, as sepsis is an infection that the blood picks up from somewhere else), or that there has been an infection and/or absess lurking undetected in the pacer pocket since april. that's possible, too. so who knows. when i know, you'll know.

please hold him in the Light right now. this is scary. thanks.

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! :)