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.