I need to stop typing these up in Word; it’s too easy to go long. But there’s a lot to be said, so settle in.

I realize I haven't been posting here very faithfully over the last few weeks. There's a reason for that. We've been busy. Two birthdays (Asher turned 2 on Tuesday; Bram turned 4 on Friday), Christmas shopping, eating by mouth, fighting CCAC, doctor's appointments, mystery vomiting for, and um... no, I think that's it. Gosh, it felt so much busier than that. Maybe I just have poor time management. (LOL. And arg. This will make sense in a bit, don't worry.)

Let's start with the birthdays and Christmas. Those are fun.

So, it turns out that my 2-year-old boy who loves Thomas and Elmo is the hardest person in the world to shop for. You wouldn't think so, but it's true. Apparently, the only Elmo thing available this year is that stupid Elmo Live thing, which I hate (hence the "stupid" comment). But, we managed. He had a blast and was, predictably, spoiled rotten with gifts. If you haven't seen the pics from his birthday, check them out. I posted the link to this Facebook album in his birthday post, but I'll post it here again: http://www.facebook.com/album.php?aid=64789&l=d2f94&id=593667512
and yes, he had cake. More on that in a moment.

As for the Christmas shopping, well, I have the same dilemma there for Asher. Again, stupid Elmo Live. That's pretty much it. Why is Elmo not cool anymore?! Next to Super Grover (who ranks up there with Batman and Wolverine, as far as I'm concerned, albeit for very different reasons! LOL), Elmo's the coolest Muppet ever! I don't get it! arg. You can't imagine my frustration. And then there's the clothes situation! That's even worse!

I wanted to get the kids Christmas outfits. I found a gorgeous dress for blithe, and an adorable little outfit for Bram (beige, brown and orange, with a sweater vest and a tie – too cute! And not nearly as nerdy as it sounds, so don't laugh). But Asher, he's tricky. I know what you're thinking: "but heather, he's that gorgeous blue-eyed blond with rosy cheeks and a spunky personality! You could put him in almost anything! He'd be great to shop for!" haha, you'd think so, but you'd be wrong, my friend! Spunky personalities are easy to dress. And blond-haired, blue-eyed beauties are easy to dress. But... here's the problem, as I see it:

The "in" colours this season for little boys: blue, grey, white. And so almost everything I've seen for boys this season is blue, grey and white.

I have seen Asher each one of those colours in the recent past.

And put those colours on him, and they will do nothing but accentuate his blue undertones. And when you think that the trendy accent colour for boys this season is black, well, that will just scream "hi, I have half a heart and really low oxygen levels." So, no.

Ok, so the blues, greys, whites and blacks are all out. So, you'd think think red, right? Yeah, good idea. Let's put his "goal" colour right by his face. That'll work. Um, let me think... no. That will simply draw your attention to the fact that he is not anything close to this colour. Sure, there's a pinkish hue to his cheeks, but there's an actual blue to his forehead, nose and mouth. So red's out.

Purple, then. Oh, I'm sorry; I forgot to include that on the list of colours I've seen him turn. So no.

Orange. Yeah. The complementary colour to blue. That won't accentuate his cyanosis. *rolls eyes*

Yellow? No one should wear yellow. Ever. But that's just my opinion. (so not a yellow fan.)

That leaves us with green. At Christmas. Easy, you'd say. Ah, my friend, you have never gone out looking specifically for something green for a blue 2-year-old, now, have you? No. I have. Not so simple. Because apparently, green is not the trendy colour this Christmas. The one year I need it is the one year it's nowhere. Nice.

Well, I shouldn't say "nowhere." I did manage to find a gorgeous sweater at The Children's Place last week in green stripes. And I mean GORGEOUS!!! (they also had a blue one like it, and I was tempted to buy it, but only to use for trips to emerg and such, as a colour reference: "so, he was this colour this morning, and now he's this colour down here, and last night he turned the exact shade of this stripe on the sleeve." Handy, but I think I'll wait till it goes on sale, thank-you very much.) But he needs pants and a shirt to go with it. Perfect. Not a problem. There should be loads in his size (2T), right? Yeah. Maybe. But not in this hemisphere, I'm afraid. They had the perfect cords. So cute. And available in every size but his. And they had the perfect little white dress shirt. Adorable! Also available in every size but his. I can't tell you how much I love shopping for this kid. Ugh. So, there you have the saga of the Christmas outfit, up to today. But we do have a bit of a time element here. You see, my AMAZING friends Geoff and Staci know how obsessed I am with the photography of a friend of theirs (really, it can't be healthy, but seriously, folks, he's incredible!). So what did Geoff and Staci surprise me with the other day? A PHOTO SHOOT WITH CLINT ON THE 14^TH!!!!!!!!!!!!!!!!!! AAAAAAAAAAAAAAAAAAH!!!!!!!!!!!!!!!!!! That's a week away!!!!!!!!!!!!!!!!!!!!! So, the older 2 are taken care of as far as their clothes are concerned. But Asher! Eep! I need to go shopping again!

Ok, on to eating by mouth... and this will be quick, because by now you've gone to his birthday pics and seen for yourselves: HE CAN EAT BY MOUTH!!!!!!!!!!!!!!!!!!!!! He ate birthday cake the other night, and he had pizza for supper. And when I say "eating," I mean he's swallowing, actually swallowing, and not aspirating! Nothing is going into his lungs! He can actually swallow!!!!! You have no idea how amazing this actually is! Just a few weeks ago I was getting so discouraged, thinking that he would always be entirely tube-dependent and never able to eat like the rest of us do. Sure, he had be putting food in his mouth for a while now, but he was leaving it in there for hours and we'd be pulling supper out of his mouth before bedtime (which is much more disgusting than it sounds, believe me). He also had pizza tonight, which by now you've read about below. And his new favourite food in the entire world... can you guess? CHEERIOS! How normal is that?! And how thrilled am I?! J You can't even imagine! Growing up, I hated normalcy. Now, I crave it like a toddler craves cheerios. Like Asher craves Cheerios! From the moment he comes downstairs in the morning until the moment he goes to bed at night, he's asking for cheerios: "chee-ose. Kees?" (Side note, here: for his birthday, I managed to find a cloth Elmo book, but I also got him one of those cheerios cup/bowl things they have at the Superstore, and his very own box of Cheerios. And all he wanted was the cheerios! Yay!!! J) and Thursday was his 2-year check-up (also delightfully normal, and mostly all good), and when I told dr b about the cheerios, she said, "oh, ok." (No swallow study yet, mind, but whatever, she said, "oh, ok" so I'm going with that. LOL).

Moving on... what's next?... ah, yes, fighting CCAC. Did you know that Asher doesn't need daytime nursing? That what will really help him to, say, survive and me to get a good night's sleep, is to have stranger sitting up awake in our bedroom (he sleeps in my room for now) all night? That's right. CCAC tried to cut our daytime nursing, which means no more monitoring of his health, and only give us night nursing. Well, actually, she tried for a PSW, who, you'll note, cannot give meds or anything. You can imagine how I reacted. During our hour-long phone conversation the other day, I made it quite clear to her that her plan (which she continued to refer to as our plan regardless of my feelings on the subject) was crap and I would not tolerate it. she argued with me, saying that what I need is sleep, and that if I had better time management I'd be able to get all my living (that is to say, errands, doctor's appointments, picking the kids up from school, rest, breaks from a medically fragile child, etc etc etc etc) on the days he's at Ed's, and that I should be fine to do all of Asher's care by myself with no support the rest of the time. If I had night nursing for Asher, apparently, I would be refreshed in the morning every day. At that comment, I laughed and said, "You don't have a special needs child, do you?" "Well, no," said she, "but I can imagine it's about a hundred times more stressful than parenting a healthy child." "Oh, you think?" I said, ever so politely and not at all bitingly or rolling my eyes. "When was the last time you woke up refreshed?" she asked. "Um, how about, before I had kids." "Well," she replied, "welcome to parenthood." I'm not kidding. That's what she said. So, apparently, what I need is a stranger sitting awake in my bedroom overnight and a more realistic grasp of parenthood, and then I'll be able to handle all of Asher's care by myself. And, throughout our conversation, she kept saying "we're client-directed care" but then in the next sentence it was all about "government mandates" and "responsible use of human resources." Which means, "screw you, mom, I've got a piece of paper from a politician that says you don't need help keeping your child alive."

Ok, if you've met me (or read my blogs, or if you heard me on the phone with her last week), you will know two things: I told her that clearly her priority is not, in fact, Asher's health or survival but rather her precious paperwork. (Yes, I'm just that blunt. Those are my actual words.) And you will know that in the end, I won. She almost cried at one point (never piss me off when it comes to Asher. I'm his momma and I'm gonna do everything I can to keep him alive, and if that means I complain to high-up hospital administrators or make a grown woman cry, I'll do what I have to do). In the end, she said, "well, I'll take what you've said to my manager and I'll call you back in a few minutes." Half an hour later, she called me back. They're leaving Asher's care the way it is right now. She's gone till March now, and at that time, we'll sit down and have a big meeting with herself, her manager, nursing, dietary, and me and we'll all discuss Asher's care and see what he actually needs. But the story's not done.

That afternoon, Asher had an appointment with paeds (he wasn't doing so well that day). I mentioned the CCAC situation to doc, and she, of course, got ticked. For those of you who don't know Asher's paeds, she's a lot like me, only feisty and with a tendency to fight for Asher's wellbeing. I like her. J She wanted all the details: what care we have now, what they wanted to give us, the case manager's name, everything. She said, "I'll give her a call today, because this is not acceptable. And then I'm going to call Steve Peters and tell him that he can either reign in CCAC or come here right now and show me the plans for the respite home they're going to build in St Thomas for these special needs kids and their families. And then I'm going to call the province's child advocate and tell him what CCAC's trying to do." See why I like her? Feisty. I have a lot of respect for that woman. Apparently I was the third parent to come in to her office that week (!) and tell her that CCAC was trying to cut their services. Stupid government mandates that take priority over people's health and lives. ARG!!!!!!!!!!!!!!!!! (If you're interested in getting a little political here, feel free to call your MPP and/or the child advocate about this situation, and feel free to mention Asher specifically. Direct him/her to this blog, if you want. I don't mind. Wink wink) and a funny little end-bit here to the CCAC episode: the case manager called me again on Friday morning last week, and said, "So, dr b called me this morning and we had a very, um,... interesting conversation." I said, "Yeah, I bet you did!" (Oh no, I'm not still ticked). She said, "So, we will be leaving Asher's care the way it is for the next few months, and then in March when we have our conference, she will be joining us to provide us with her perspective. Is that ok with you?" I said, "Absolutely, that's perfect. The only person who knows Asher better than her is me, so I'm quite happy she'll be there." "Good," said the CM, "but now I will need to make one change to Asher's care-" (did you catch that? "We're keeping things the way they are" and then "I have to make one change." Hmmm....) "-and change his services to RPNs instead of RNs." I replied, "We already get RPNs. They share with the RNs." "Well," said she, "I have to change it to only RPNs." Now, again, you've met me, right? And you're aware that I am stubborn and determined, right? And that I will do anything for my boy? Yeah. I said, "No. We're going to have one RN a week. And I want V---." "Um, ok. I can arrange that." Hence my status line last week on Facebook: "Heather is shouting from the rooftops: "VICTORY IS MINE!!!" so, yeah, CCAC sucks, entirely political, not caring about people's health. Esp medically fragile children's health. And in the end, I win. She had no idea who she was dealing with when she called me and tried to cut our services.

Doctor's appointments and mystery vomiting: this will be quick. Asher was vomiting for some reason. For almost 2 weeks. Don't know why. No one could figure it out. I even took him to emerg for it. it started a few days after he was discharged last month and lasted WAY too long for anyone's liking. But, long story short, he didn't drown, didn't even aspirate, and we have all learned a valuable lesson: when you mix pedialyte with pediasure (formula), it curdles. Seriously. Yuck. So don't try to do that. Makes kids barf. And makes moms unhappy. So don't try it.

and Asher's 2-year check-up was on Thursday, which went generally well. He's hitting milestones and growing and speaking at his level and learning new skills all the time. His newest skills: doing up his jacket. I have to start the zipper, but if then he can pull it all the way up. J and when you think that Bram only recently learned how to do up his own coat, this is AMAZING! And his other new skill starts off every morning now: he stands up in his crib, unhooks the feed set from his tube, closes the cap on his tube, and throws the feed set across the room. I didn't know he could do this until the morning I heard something fall on the floor but thought it was just a toy, so I left it. but imagine my surprise when I got up to find a river of formula running across my floor (he hasn't figured out how to pause the feed yet), and his tube closed. Yeah. And by now I've actually watched him do this, and it's quite a sight! That, gentle reader, is one smart toddler! They learn what they live, I guess, and this is what he lives with, so I shouldn't be so surprised, but still! It's awesome! J

ok, I'll stop now. I think that about covers it for now. I'll try to get back to posting more often, but apparently I have to work on my time management skills (gosh, maybe I should get night nursing, and then I can blog at 3am, and stay all caught up. Grr, CCAC, grr). Ok, I'll be good. And I'll try to be better at this posting thing now. I'm sure we're all getting tired of the novels, and would much prefer little blurbs instead. I can't make any promises (you know me too well for that! LOL), but I'll see what I can do. Talk to you later! J

"Glife! Bam! teezza!" or, A Boy and His Temper, or Not NPO Anymore (albeit unofficially - wink wink)

... which, translated into actual-speak (as opposed to toddler-speak), is "Blithe! Bram! Pizza!"

so, in case you hadn't yet figured it out, we had pizza for supper tonight. asher's choice. seriously! mom and i were discussing our options (basically just "pizza? or what else is there?"). asher jumped on the "teezza" idea. he even helped nana get it ready! (ok, it was frozen, so he cheered her on). mind you, i don't think he has yet grasped to concept of cooking time. he screamed and wailed the whole time it was in the oven, as though we were depriving him of food. nice, eh?

and let's count the number of things wrong with the previous paragraph. first, we're letting a toddler dictate the menu. next, we're letting a kid with terrible circulation help take food from the freezer. i don't like taking him past the freezer section at the grocery store without a winter coat, mitts and a hat! but there he was tonight. finally, he spent 15 minutes or so screaming (you all remember my dischipline dilemma, right?). that's some great parenting there, let me tell you. lol
anyhoo... eventually, and none too soon for asher, it was time to eat. we put asher in his high chair while i sliced up the pizza. he passed the time calling his sister and brother to the table, and yelling at me to hurry up. yeah, he's a delight today.

i gave him a piece. it's on his plate. now, of course, he's ticked because he has food in front of him and we haven't prayed yet, so he can't eat. (it's almost pavlovian, really.) you can't tell from the pic, but he's the only one at the table.

by now the kids have said grace, and we're digging in. (btw, asher during grace is adorable! he closes his eyes and sort of mumbles along and says "ahmeh" at the end. mom and i are godless heathens, however, because we inevitably just watch him and giggle quietly.)

"don't bother me. i'm eating." 'nuff said.

YAY ASHER!!!! YOU'RE 2!!!!!!!!!!!!!!!!

so, for those of you who are not keeping track (and i can't imagine anyone who follows this blog not keeping track!),

TODAY IS ASHER'S 2ND BIRTHDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

i have way too many pics to post here, so i'm including in this post a link to the facebook album i created for this event. the pics are wonderful.

it was the best birthday i've celebrated in, oh, i don't know, a year! only, i think this one was better. no big party, just some friends, some family, and oh, yes, my friends,

SOME CAKE!!!!!

there's a reason i've labeled this post "real honest to goodness normalcy."

(and yes, i'm aware i haven't posted here recently. there's a bunch of reasons for that. but i'm saving that for another post, and in it i will regale you with tales of my battle with CCAC, who WANTED TO CUT OUR SERVICES TO ONLY NIGHT NURSING!! but again, that's a post for another day. today, we celebrate asher. so, here's the link. enjoy!)

oh, and anne: when i brought the cake out and put it on the table, asher took one look at it and said, clear as day, "cake." that's my wordy boy! :)

the facebook link:
http://www.facebook.com/album.php?aid=64789&l=d2f94&id=593667512

Yes, but he’s a sweet little imp...

Ok, so by now you all know of my discipline dilemma: how do you discipline a kid who'll have a heart attack if he cries too hard? Well, perhaps this isn't such a problem as I'd previously thought. Let me tell the tale:

The other day, Asher and Blithe were playing in the living room. Well, to be honest, Asher was playing. Blithe was colouring with her pencil crayons. Which she keeps in a lovely white basket. Which was, at the time, on the coffee table. Right in front of Asher. I'm sure you see where I'm going with this.

He dumped them all on the floor.

And she didn't appreciate that.

"Mommy, Asher dumped my pencil crayons on the floor!" (Ok, I'm trying to get her to stop tattling and deal with these issues herself, but I also need to teach Asher, so I went along this time.)

"Asher," said I, "that was not nice. You help Blithe pick them back up."

Well, he didn't like that idea. I ended up helping Blithe pick them up. Ah, well. But...

When I said, "that was not nice," he looked at Blithe and signed "sorry." So she said, "I forgive you, Asher."

"Hugs?" he asked.

And they hugged.

And I smiled.

So, he still hasn't gotten this idea of fixing what he did, but he's really gotten the hang of fixing the relationship, and what's more important? Some pencil crayons on the floor, or being right with his big sister? You see? He is a sweetie, even if he is the most impish sweetie I know.

URGENT!!!! yale. please pray.

yale's not doing so well. he's on a vent in CCCU at sick kids, waiting for a heart. tanna's not doing so well, either; she's starting to lose hope.

here's the link to yale's blog; all the details are there.
http://babyboyseaton.blogspot.com/2008/11/terrible-things-happen-in-matter-of.html

please pass this along to anyone you know, as well. they need as much prayer as they can get right now. thanks.

wha-?! it's only been a week since i last posted?! are you sure? it's felt so much longer than that.... here's the tale... but be warned, it's epic.

ok, you remember last monday i took asher to london emerg with croup. well, thank-you, dr k for the dose of dex; it worked wonders and the croup cleared up immediately. delightful. still, i kept an eye on the bug (asher, that is) on tuesday, just in case... he doesn't like playing by the rules all the time, so you've gotta watch him like a hawk.

well, wednesday was ed's grandmother's funeral, so i had the kids. asher wasn't quite right. basically, off and on all day, he was tachypnic, irritable, with increased cyanosis (for those non-doctor-types reading this, he was breathing fast but not laboured, cranky cranky cranky, and bluer than usual) and had a VERY runny nose.

so, we went to the funeral. but after the service, asher was still a little off, so i called paeds. she was on call at STEGH last week, so we went to see her there. of course, by the time we got there, asher was... yup, you guessed it... PINK! AND HAPPY! AND BREATHING FINE!!!! ARE YOU KIDDING ME?! i raced all the way back to st thomas to get asher in to see the doc, because there's something strange going on, and he's FINE! sats were 86%!!! i mean, really. what a waste of gas, if you ask me. arg.

so, we went back to the church for the meal. but after a while, we noticed that asher was showing all those sypmtoms again, but with one minor little difference: a fever. i wasn't quite sure what to do, so i took him home, thinking the car ride would do him some good. alas, this time, it did not. so i checked his temp and it was 37.7 C. that's a fever, though not super high. so, i took him to london emerg, because i know what those symptoms can sometimes indicate (sometimes it's just a cold, sometimes it's failure. you never know with asher, though, so i can't take any chances). by the time we got to emerg, his nose had stopped running and his breathing had slowed down somewhat, and of course he was all happy and smiley and asher-esque, his sats were great, but... his fever was up to 38.3! so they gave him some tylenol. (for those wondering why i wouldn't give him tylenol before taking him in, here's my reason: sometimes, the degree of the temp can tell a lot about what's going on. some things lead to high fevers, some to low. it all depends. and there's other factors, too, like mood and colour and breathing and how they all interact with the fever. so, in my opinion, unless it's super high, i want the docs to see his real fever, instead of me telling them what it was. anyone can make up a number. i want them to actually see it, when possible.) ok, rant over...

well, we went right in (as usual. asher never waits in emerg), and dr k was on again. "you couldn't stay away, could you?" "well, you know, he missed you guys yesterday, and he's been begging to come back all day." "yeah, i thought so." lol seriously. i can joke around with the docs. think we're there a lot? anyhoo... i told her asher's numbers from the day, the temps, the resps, the colour (i need to make a colour wheel for easy reference, i think, and carry it around in my purse), the mood, and so forth. she ordered a chest x-ray and a urine sample (bag). both were, of course, clean. no pneumonia, no UTIs, no weird bugs. and by now, asher's fever was gone and he was wandering emerg and flirting with everyone and basically demonstrating why he is (or probably should be) the mascot down there. i mean, really. so, since he was feeling better, doc sent us home, but with the strict instructions that if the symptoms returned, to bring him back to emerg immediately, and they would, of course, do bloodwork and really start looking for the cause, since the obvious culprits had been ruled out. ok, so, we go home. asher sleeps fairly well, mostly due to the fact that it's now late and night and we're both tired.

the next day, which was thursday, ed had the kids, since he didn't have them on wednesday. i went out shopping for work with my friend/"boss" (she owns the scrappin' store where i teach, and i went along to look for papers for this week's class). i'd given ed all my instructions, which i know i don't really have to, but i'm the mother of a SN kid, so i do this for my own peace of mind. basically, it was, "if he's breathing fast, cranky, bluer, or spikes a fever, call me." i figured we'd be ok, at least till i got home. he was fine overnight, and in the morning, he seemed to be doing well enough. (this is where the guilt kicks in.) we were in brantford eating lunch when he called. "how high was asher's fever yesterday?" "38.3. why?" "well, it's 38.5 now." "WHAT?!?!?!?!?!" "38.5." "ok, give him some tylenol, i'll be home as soon as i can."

needless to say, we sped home. especially once ed called and said, "so, i gave him tylenol and motrin, and he's up to 38.7."

they dropped me off at home, i went in the house, picked asher up, threw him in the van, and flew to london emerg. where he was triaged and put in a private room (b/c of his immunodeficiency). where they monitored his sats. for 3 hours. until doc came in and said, "well, his sats are good, and he seems stable. you can go. cardio wants to see you in the morning; do you know where the clinic is?" yeah, so she sent us home. no tests, just sat monitoring.

given the abundance of reflux and the referal to cardio, i was a little paranoid about taking asher home to sleep in his crib with the apnea blanket/monitor that's broken and not working properly. (be warned, more guilt. it may not show up here, but trust me, i'm feeling it.) so i went to wal-mart to spend $125 i don't have on an apnea blanket. thank the good Lord for overdraft (as much as i hate it, arg!). well, see, remember the weather last week, how gorgeous it was? it was beautiful on thursday, so when i took asher to emerg, i had him dressed warmly, but no coat. just blankets on him in the stroller. we weren't going to be outside very long, anyway. but, by the time we got to wal-mart, his breathing was sounding weird, he was crying weird, and when i went to get him out, he was shaking from head to toe. i thought he was just really cold, till i felt his forehead and noticed the fever. but still, i thought, "well, sometimes you get the chills with a fever, so he's just shivering." i wrapped him in blankets and ran into the store. i put him in a cart and we raced to the back of the store, as far from any drafts as possible. he was still shaking. and breathing kind of weird. and not really acting like himself, though i can't really describe it properly. by the time we paid, i was really getting freaked out. i'd grabbed a hoodie because i still thought he was shivering and put it on him in the store (and paid for it, but he was SO wearing it), but he still didn't stop shaking. i put him in the van and decided i couldn't take him home, but i didn't want to take him back to london b/c we'd just gotten brushed off there. i knew our paeds was still on call (we'd only seen her the day before, after all), so i paged her and told her what was going on. i was so calm. well, in my head i was trying to be. in reality, i think i was panicking a bit. asher's fever was only getting higher and he was STILL shaking and breathing weird and not crying normally. she told me to drive straight to STEGH emerg, park in front of the doors and run him in; she'd meet us there. "and heather," she added, "drive carefully." "i will." "no, heather, seriously, drive carefully." (how panicky was i?!)

so, i did as i was told. parked right in front of the emerg doors and ran him inside. they were waiting for us, and dr b was right there. we were rushed into a private room, and asher was stripped faster than i'd ever seen anyone strip a child. he was still shaking. his fever, when they checked it, was 39.4 C. (not sure exactly how high that is in F, but it's up there. i'm hospital mom, remember, i only know celsius, milligrams and kilos. that's it. ask me pounds and inches and stuff, and i don't know. but metric, that's what i know.) anyway... doc was assessing asher, and she noticed that he was holding his head to one side, so she tried to turn it gently the other way. asher flipped out. so she stopped. then tried to lower his chin toward his chest. he flipped out again. so she stopped. another doctor came in, and she showed him. they looked at each other and nodded. know what's lovely? when two docs look at each other and nod silently, right in front of me. because you know what? the second asher flipped when she tried to turn his head the first time, i knew what she was thinking. meningitis. so, then she looked at me and said, "ok, with all these symptoms, and with the pain when he turns his head, we're going to have to do an LP. we need to check his spinal fluid. i have to do it. you don't have to stay in here when i do it, though." um, good!

i went outside and made some phone calls.

i called ed, and ever so calmly got him caught up.

then i called pam, and ever so calmly got her caught up. she said, "i'll be right there. give me 10 minutes."

then i called annie, and ever so calmly got her caught up.

within 15 minutes, pam and hal were there with coffee, and annie arrived shortly after. and apparently, ed was trying to find a way to come to the hospital, because he'd never heard me freaking out during a medical emergency before. (yeah, those "ever so calmly" comments... i wish! i was kind of, um, yeah, freaking. crying. panicking. asher had never seized before, and meningitis and sepsis are scary, and we had just been in emerg, and i wasn't with him all day and i should have been and it's all my fault b/c i sent the kids to school b/c i was tired and now asher gets some weird bug that could kill him. oh, and btw... the "LP"... for those who don't know... it's a spinal tap. it's just the fancy medi-term for it. lumbar something-or-other. poke? i think that's it, but i could be wrong.) so, i have a great support network, who all rushed to be with me when i was scared out of my mind. and after the poke, dr b gave asher a stuffed animal, an adorable little dog that he loves. thanks, dr b! :)

they also gave asher his very own... IV. which took several pokes, and ended up in his forehead, because that's the only place where the veins were any good. so they started him on fluids and antibiotics. a big one. ceftriaxone or cefotaxime (sp?). one of those two, i get them confused. they're both big, though. they cover just about everything. so that was good... until the IV came out mid-dose. so they had to give the rest by IM injection in his thigh. they decided to do that instead of trying for another IV. by now they were already working on getting a transport to london, so they thought london should get to put the IV back in somewhere. everyone in st thomas as tired of poking him. (thank-you, by the way.)

so, off we went to london around midnight. dr b went in the ambulance with asher, and hal drove me. obviously, they got there first, since they had lights and sirens the whole way. "it's asher" said dr b when questioned.

(oh, the LP was clean, which ruled out meningitis. but that left us with... query sepsis with febrile seizures. nice, eh? that's what we were working with.)

by the time hal and i arrived in emerg, dr b was getting the london attending all caught up, including specific instructions that went a little like this, "this is Mom. listen to her. whatever she says, go with it. she knows asher better than anyone, if she says something's wrong, go with it; she knows what she's talking about." aw, i'm blushing. and, YAY! lol i like instructions like that. lol because what i really need is my ego inflated just a little. lol

ok, so they got an IV in, eventually. (thank-you, hal, for not punching anyone during all those pokes. that would not have been good.) i talked with the clerk and gave her asher's complete history.

we spent the night in emerg. by morning, all the admission stuff was done and there was a room waiting for us on the floor.

ok, so we were to be admitted for 48 hours for IV meds and observation while we awaited preliminary culture results. meanwhile, until saturday night, asher was still spiking high fevers every 4 to 6 hours (basically, once the tylenol wore off), and often having seizures with the fever. (FYI: febrile seizures are real seizures that happen with a high fever. they aren't painful, they don't cause any damage to the brain, they don't significantly raise the risk of developing epilepsy or any other seizure disorders. there's really no significant risk associated with febrile seizures, unless the child is in the bathtub at the time, in which case there's a risk of drowning. the only other real risk is high blood pressure, heart attack and stroke... for the parent who's never seen this before and then had a doc ordering spinal taps and huge IV meds and lights and sirens all the way to london! i'm ok now, but on thursday night, yeah, not so much!) so, it was usual hospital life for us this weekend, as we waited for the culture results.

which we got on sunday morning.

clean.

everything was clean.

no bugs.

YAY!!!!!

although, you do realize, of course, that cardio was hovering all weekend. first, liz and sarah came up on friday morning, surprised to find us there with query sepsis, although that explained why we didn't come for our appointment in clinic that morning. and about 20 mins after they assessed asher (and horrifyingly confirmed the whole "hard to discipline a kid who'll have a heart attack if he cries too hard" thing... honestly, is it too much to ask that cardio lie to me once in a while and say "mom, you're paranoid"? i know it's true - about the heart attack, not the paranoia - so really, just play along, please? am i really asking so much? i don't think so!), they came back up with dr r, our new cardio. he was on call this weekend. he came up every day to check on asher. haha, he asked me if i had any questions for him about all this. i laughed and said, "dear me, no, we've been through this, and i know too much as it is!" sometimes i wish i had questions for the docs. that would be nice, i think. just once... a mom can dream, right? lol

ok, so, cultures were clean, which means no meningitis, no sepsis, no endocarditis, no bacterial upper respiratory tract infection. they came up with this: a virus. but... consider this...

white cells, including neutrophyls, were "sky high." these fight bacterial infections. some other kind of cell (curse you, immunology!!!!!!!!) which fights viral infections, was very low. now, i know what you're thinking, and it's actually the other way around. if the cells are high, it's because they've been creating more and more troops to fight off an invading illness. think military strategy for a moment (ironic metaphor for a pacifist, but it works, so we'll just go with it and leave politics alone, shall we?): you never get attacked, there's no huge risk to the country, you have no wars to fight. do you really need oodles and oodles of troops? no. a couple batalions'll do. (oh, i'm so not a military strategist, can you tell? lol) but... once there's a war and you're in it, suddenly there's a draft and the numbers of soldiers swell and you build yourself a strong army to conquer the enemy. antibiotics are like the countries you signed pacts with, and they come and help you out during a war. they help, but it's still you fighting your war. (wow, maybe i do get some of this immuno stuff. still, i want to know more...) the point is this: those bug-fighting white cells, at such high levels, indicate a bacterial infection somewhere. don't know where, but all the numbers indicate bacteria. besides which, we got some fluid and big meds into him, and he improved in a few days. those virus-fighting cells were really low, indicating that there was likely not a virus. i don't know. dr b and dr s (infectious disease) seem to think that there was a bug in there somewhere. or, also likely, asher doesn't do things the normal way. the new theory is that asher knows the rules, but chooses to ignore them. he didn't miss any memos. he got them, read them, and said, "oh, you think so, do you? mwahaha." like the Joker. or lex luther. or some other cool bad guy.

when docs changed on monday, we had a consultant we'd never met before. before he left, he reminded me, "you know, even kids as complicated as asher still get colds sometimes, and you just have to get used to that."

ok, so very long story short (lol), asher was admitted thursday in london with query sepsis with febrile seizures. he was discharged monday with a cold.

sorry it's taken me so long to post here. i knew it would be long, and i was dreading it. (mostly, i'm just trying to ignore my guilt, and by writing it here, i'm sharing it with you all. i was trying to avoid doing that.) anyway, now you're all caught up. asher's starting to feel better, though he's still cranky. i think he's just tired from a long weekend at the hospital. but aren't we all? well, have a good night, and i'll talk to you later (and i'll try to be brief next time). :)

yup, it's fall...

which means that it's that time of year again, the time of year for...

nasty respiratory viruses!

asher and i had a lovely time at 1am last night, hanging out in the bathroom with the shower running at full blast. we sang and danced to cheesy 80s tunes ("you spin me right round, baby, right round, like a record, baby, right round round round"), played with dinky cars, and made sure his IV pole followed closely enough behind.

why hang out in the bathroom in the wee hours? why not be in bed, sleeping peacefully?

because

that would be too easy

and nothing can be easy with asher

especially in november.

he has croup.

which wouldn't normally bother me, if it was one of the other kids. blithe was prone to it when she was younger, so i'm kind of a pro with it.

but frankly, asher needs all the oxygen he can get. so, this can be a bit of a problem. potentially. let's hope he'll be ok.

anyway, i've gotta go hook up his feed and put bram down for a nap and measure the walls in the kids' bedrooms and put in a load of laundry and take something out for supper and bask in the beauty that is the top of my scrappin desk (see my scrappin blog for details on that... the link's on the sidebar, if you're interested.)