BEST PICS EVER!!!!!!!

thank-you so much to clint and shawn from renaissance studios for these amazing pics, and to geoff and staci (and chloe!) for hosting us for the afternoon. it was an amazing experience, and i'd LOVE to do this again.

clint is amazing. really. check out his website for more information, or if you just want to peruse his portfolio (and drool!). www.renaissancestudios.ca

if you want to order some prints of asher and sibs, just let me know. email/facebook me or leave a comment, and i'll send you the link and password so you can order what you want. :)

Here we go again....

Why am i slacking so much here?! Arg! Ah, well, i'll (try to) be brief. J

Last Monday night, while sitting at the dinner table, Asher did something he hasn't done in a while. He turned blue. And i mean blue. Almost navy blue around his nose, mouth and chin. He had a blue spell. And it lasted quite a while (almost an hour!). he wasn't distressed or anything: his breathing was fine, he hadn't aspirated anything, his mood was still chipper as ever. But still... navy blue! Yikes! So i took him to emerg.

He was put in a bed, not in a private room as usual (due to his immunodeficiency, they like to keep him separate from the rest of the kids – you have no idea the germs in emerg... no, really, you don't, and you don't want to!), so they could keep an eye on him. But Asher being Asher, he didn't want to just sit on a bed looking pretty, so he decided to wander around. And i mean wander. He took his sweet time and just meandered about. And turned blue. No real exertion, he wasn't running around or being rambunctious. He was honestly just walking. And he turned blue. So, the nurses sat him on his bed, hooked him up for some continuous sat monitoring (mid-80s the whole night, folks!) and got him a TV/DVD so he could watch cars. Even while he was blue, his sats remained perfect in the mid-80s, so the issue is not respiratory. In fact, they did a chest x-ray at one point, and doc said it was the best CXR of his she's ever seen.

Long story short(-ish), we went home. Cardio was consulted, but they said he may just have caught a draft and that caused the blue spell. Don't know how that could be the case in emerg when it happened twice, but ah well, what do i know? Funny story, though (well, heart moms will be amused, and a couple docs will be amused. The rest of you won't care.). cardio asked dr h what Asher's sats were when they were chatting, and she looked over and said, "89." Cardio said, "what?" she repeated "89." His response: "are you sure he's hypoplastic left?" yes, folks, we're sure. Definitely left. And to be honest, i think that 89 was a fluke. Asher must have just wiggled or something, because i don't remember an accurate reading of 89 in a very long time. Either way, still a funny story, no? J

And moving on....

I mentioned last week about Asher's tube site being infected, and doc putting him on keflex (an antibiotic). I had my doubts about it, but she said that if it didn't do the trick i was to bring him back in and she would prescribe something else.

Well, guess what.

It didn't work.

After a week of treatment, it wasn't any better.

In fact, it was worse. Much worse.

Of course, this was discovered after doc's office hours on a Friday. It simply could not wait till Tuesday, however. It was that bad. Very red, very oozy, very very, very gross.

And through all this, Asher's blue spells have continued. 2 or 3 a day, at least. And by Friday, he was getting short of breath throughout the day, as well. So, when i took Asher to emerg on Friday night, all this was mentioned.

So, here's the deal: emerg doc (hi, dr k!) put Asher on cipro (another antibiotic, and the one i wanted for him in the first place). She also suspects (as do i, by the way) that the blue spells and shortness of breath are linked to the infection. So, we were sent home again, and in record time this time! Our whole visit, including quite a wait for triage, was a little over 2 hours! Sign me up for visits like that anytime! J

So, there you go. Asher's health stuff up to now. Sometime in the next while, i will be posting some marvellous pics of Asher that were taken on Sunday. They're absolutely beautiful! Clint from Renaissance Studios is such an amazing photographer. I promise you'll be blown away. Those of you on my facebook may have already seen them. Breathtaking, truly. J

Oh yeah, and we had our first day with a shift nurse who was here for 4 hours today. This is the new plan that we came up with last week in my meeting with nursing and CCAC. Actual shift nurses on Mondays, Thursdays and Fridays, and then an RN visit on Sundays. I think it's going to be good. I'd been getting a little overwhelmed lately, and was having a hard time balancing all of Asher's care with being his mother, being the other kids' mother, keeping the house in order, and just everything life-related in general. So this is going to help, i think.

Also, i'm going to mention this quickly: Asher's buddy Yale (HLHS) finally got a new heart last Wednesday and he's doing marvellously! I'm going to be going up to Toronto this week to visit them, but so far, he's pink, he was successfully extubated within 3 days of surgery, and he's doing very, very well. And while we celebrate with Yale and his family, we need to remember the donor family as they grieve their loss. Pray for peace for them as they mourn, knowing that their loss means new life for Yale.

Ok, that's it for now. Blue spells, bad infection, shift nursing, amazing pics, and a new heart for Yale. Quite a ride over the last week or so! J have a great day, and i'll try to post more frequently now. J

only anne really needs to read this, but the rest of you can feel free, as well.

"eh-oh cookie, kees." (which means, Elmo cookie, please.)

he just said that. just like that. he wanted an elmo cookie, and he asked. and politely, too!

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.)

Happy Hallowe'en!

happy hallowe'en, from our little pumpkin (oh, yeah, and the rest of us, too).

well, anne, you asked for words... and i'm trying to avoid doing the dishes... so, here you go! lol

so, i'm organizing the dishes so i can get them washed (we're out of spoons and bowls for the kids), and asher sauntered into the bathroom. he walked over to the counter and spied a toy that's a pig on one side and a cow on the other. he climbed up onto the stool, and i heard...

"MOM! MOMMA! MOM! oink-a-ink... kees... ka-oink... kees... kees?" (translation: oink oink, please, oinkoink, please. please?)

so i gave it to him, and he said...

"ah-come. oink oink..[turns toy around to see cow] moomoo... mooooo."

yeah, he says "you're welcome" instead of "thank-you." he'll figure it out eventually. i think bram did the same thing, so i'm not worried.

now i'm off to do dishes. oh joy, oh bliss.

i was so touched by this...

blithe had a hard time at school today. once we got home, she broke down and cried on the kitchen floor. i scooped her up and held her. her heart was broken, and it hurt.

i held her as she cried. then something wonderful happened. just typing this, i have tears in my eyes. (get a tissue, then come back and finish reading... got one? ok.)

asher came up to blithe, put his hand on her arm, and leaned over to hug her. he held her for a moment, then stood up and signed "sorry." it was breaking his heart to see his big sister so upset. then, he pointed and said "tin" ("train"), and looked back at blithe and said "glithe" ("blithe"), then pointed back at the train and said "tin" and back at blithe, "glithe." then he took her hand in his and led her over to the train, where he played with her.

with everything he's been through, he has learned compassion and mercy. what a special gift for all of us, to see this beauty in my boy. and tonight, what a special gift for blithe.

i don't care what any doctors tell me, asher has the biggest heart of anyone i know.

No, i didn’t forget about you...

I worked out this afternoon instead of posting. And as i worked on my glutes and pecs and biceps (which now have some nice definition, by the way J), i pondered weakness. But that's a post on another blog... which will hopefully be ready in the next couple of days. (cut me some slack, here, people! I'm a single mom with 3 kids, one of whom has his own blog, i haven't been sleeping lately – arg, hypomania – and i'm working on figuring out my life at the moment... but i digress...)

Ok, so, Asher. This is his blog, after all. Focus, heather, focus....

Here we go...

Monday in London. Right.

Ok, we started in cardio. That went nicely. No tests. Yay! Asher's had enough tests lately, i think. And we didn't even see a doc!

Ok, i lied. I spied one wandering about the clinic. Dr Weslisch. She looks nice, and she kept eyeing Asher, but we didn't speak. I'm assuming that will happen soon enough, in emerg. The winter, it is a-coming. Anyhoo...

We only talked to liz yesterday. Your basic check-up. Sats were 85% (i know, i'm ecstatic, too!), BP was 109/43. Why do i remember these numbers? I don't know. Not like any of us needs to know the specifics, unless you're a cardio who used to follow my boy and you're curious... i didn't catch the pulse. Liz cleared it all before i got to that part. I don't think liz wants the parents to know that stuff. And why should we, really? But i have learned... sometimes, you need to know. So it's best to know as many of those numbers as possible. Even if you don't know what they mean. Although,by now, much to many a cardio's chagrin, i know what they mean. Yikes! Wow, i'm tired, i'm babbling. Ok, i'll just finish this off and go to bed...

So, the appointment was left like this: we go back in January for an echo. That will be six months since his last echo (in London, anyway), and then we're aiming for july. But did you catch that? We get to go 2 months between cardio appointments! We haven't gone that long since, what? February, i think. It's been a long time, anyway. So that's cardio.

Of course, this plan is ignoring the fact that we're at the end of October, and the fall is upon us, with winter following close behind. And we all know that Asher doesn't tend to do so well in the winter. Stupid wonky immune system. (and yes, i'm still confused over immuno. I mean, really, does anyone out there understand it?! Seriously! I don't even know where to start looking for info, that's how confused i am! Arg. Ok, enough of the rant... on to the rest of the day...)

So, after cardio, Asher and i had coffee with tanna, because yale was still in the unit and Asher can't go in for a visit. But tanna came out. Yale's doing better, though he's on his way now to Toronto for a work-up for a transplant. Let's hope it all goes quickly, and he can get listed, and his wait won't be too terribly long. Check his blog for details. The link's on the sidebar.

Then, off to Interventional Radiology. Asher's tube had started leaking on the weekend, but i thought it was the syringes on Saturday. Then i checked it to be sure, and nope, it's coming out of the tube itself. So, it had to be replaced. Even the doctor didn't want to do it. She was the one who had replaced it the last time... which, you'll remember, was last Tuesday. But they check, and the tube was actually cracked. There was a quite a split there. So, it had to be replaced. That was exhausting. But, Asher's getting all his formula and meds again, so that's good. I guess when you look at the big picture, it's not so terrible... well, for me it isn't. But then, i wasn't pinned down on the table under a GIANT x-ray machine while people in masks and lead stuck a tube in my small bowel. It's the one thing Asher can't stand. Tube changes. He hates them.

So, that was our day. First good, then not so much. And of course, all day, Asher didn't stop. He walked from Tim Horton's to IR, and then ran all over the place for 45 minutes in the waiting area and surrounding hallways. I think he missed the memo that said, "half a heart. Should get tired." Is there a doctor out there who can talk to him for me? Just explain the whole concept of rest for the heart kid. Because, yeah, he doesn't get it. Timmy's to IR is a long walk. Uphill. And he did it without complaining. In fact, he made it up that hill faster than tanna and me, and we have two ventricles! What's up with that?! Sheesh! Lol

So there you go. Maybe i'll edit this in the morning, but i'm too tired for that right now, so i'm going to bed. Talk to you later! J

EUREKA!!!! Oh, dr bertoldi, you’re gonna be impressed, i think! Lol (the rest of you don’t have to read this if you don’t want to. It’s about poop.)

Ok, for those of you who've been privy to my "i was so lost in immunology" rants over the last week and a half (honestly, i have never been more lost in an appointment as i was then! I mean, seriously! Does anyone understand immunology?! Because i'd like to talk to you if if you do! I have questions!), you may remember my confusion over the gastro issue that was discussed. The question of whether Asher is constipated because of nerve damage, as we (esp I) suspect, or if it's something congenital. Immuno's guess was anal atresia that's patent. I think i wrote about it last week. how can you have anal atresia that's patent, i asked. (for those who aren't versed in medi-speak, "atresia" means closed and "patent" means open. So now you understand my confusion!)

well, in my cyber-wanderings tonight, i decided to look up VACTERL (not VECTOR, as i had called it previously. Doc had an accent so i misunderstood). I went to Children's Hospital of Philadelphia (wonderful website, very good information), because that's where i learned about DiGeorge, so i thought i'd at least start there. So i searched "VACTERL." A few things came up, so i went through them. The first link just talked about causes of CHD, and included some info about a few syndromes and genetic abnormalities that contribute to CHD. DiGeorge is one of them. But they also said that some "associations" are linked to CHD. Like VACTERL, which includes Vertebral, Anal, Cardiac, Tracheal, Esophageal, Renal and Limb abnormalities. You'll notice that Asher's limbs and spine are fine, but the rest... yeah. I'm not saying he's got this VACTERL thing, but maybe it's worth pursuing, even if just to rule it out...

ok, so here's the "eureka" part of this story...

http://www.chop.edu/consumer/your_child/condition_section_index.jsp?id=-8782

here's the gist: there are several kinds of anal abnormalities. the first is anal narrowing, which basically means that it's technically intact, but it's narrow, so BM's are difficult, but possible. But every so often, they have to dilate it, to help things go a little easier. Yup, a balloon in the bum. Hello! L another abnormality is a membrane over the anus, so nothing can get out. Eep! and then, there's the whole anal atresia thing. Basically, the rectum and the anus are not connected. This can present one of two ways. First, they could be unattached, but there's a fistula, or abnormal channel going from the rectum to the outside, so poop can get out. Phew! Yucky, but lucky. Or, they're completely disconnected, and there's no fistula. Still yucky, but not so lucky. On the other hand, according to my medical dictionary, when it comes to fistulas, "surgical repair is not always possible." The above link explains the repairs in detail.

What does any of this have to do with Asher, you ask? Well, gentle (and by now, grossed out) reader, allow me to explain further. (and feel free to stop reading now. It's all about poop and bacteria and so forth, and my own opinion, albeit humble and uneducated, on Asher's gastro condition.) ok, here we go.

so, in the case of Anal Atresia, which, for the sake of this blog post, we'll assume asher has, there is sometimes a fistula present. Now, this fistula may not necessarily be a straight tube going straight out. Remember, this is an abnormality in an already wonky physiology, so why would it be so straightforward as that? And remember, too, that the gastro and urinary tracts are smooshed together pretty snugly in there. Not much for wiggle room. Sometimes these fistulae (that's the plural. Don't i look smart?! Lol) kind of connect with the urinary tract. Poop still gets out, and mostly through the bum, but not through the anus, and having taken a slight detour first.

Are you getting this? Alright, poop still gets out, but may sort of collide first with the urinary tract.

In which Asher has had numerous infections.

But not from any reflux in the urinary tract.

Nope. They've done tests, and that's not it. His pee goes the right way, just as it should. It doesn't go shooting back up toward the kidneys.

But what if, and think about this, what if bacteria are getting in there from another tract altogether?

"but, heather," you might ask, "wouldn't that mean he'd have poop bacteria in his urinary tract?"

My answer?

Yes. Quite possibly. It would.

One example of a poop bug: e. Coli.

Can you imagine having e. Coli in your urinary tract? It's possible for girls. Just wipe the wrong way, and voila! But for boys... not so easy.

Or common.

And yet...

Asher has had e. Coli in his urinary tract.

At least once.

I'm not saying, i'm just saying.

Ok, now, i know paeds reads this. So, just think about it. that's all i ask. oh, and then let me know what you think. K? Thanks! :)

pictures of homelife...

some friends (ok, one of asher's nurses and her husband) popped over this afternoon and brought gifts for the kids. blithe got a Happy Feet DVD and a doll, asher was given an airport set (toy helicopter - "hacot" - and plane, some cars, an airfield, some luggage and signage), and bram was given a fantastic train set. it's absolutely gorgeous! arturo picked it up somewhere but it didn't work, so he fixed it up, including a new electrical system, and gave it to bram. isn't that lovely?!

so, tonight, as i was making supper, the kids were all in the kitchen, playing with each other. and playing nicely! it is lovely to hear them all play, including the way they include asher in the play. it was heartwarming. so, i thought i would share it with you.


now, there's a bit of a story behind this next pic.

back in the spring, during one of our many visits to london cardio, i was chatting with a certain cardiologist from mexico. he noticed that asher was not particularly fond of sharing the thomas trains with other kids, and refused to come when called. one of us said that asher's spoiled, to which i replied, "but how do you discipline a kid who'll have a heart attack if he cries too hard?!" i expected the usual, "mom, you're paranoid." instead i got, "yeah, that's a problem." wha-?! well, this pic is for you, buffo, and for anyone else who thinks asher gets away with murder.
this was time-out number one tonight. he got another one a couple minutes later when he refused to make things right with nana. apparently, she had asked him to do something, which he refused to do. and by "refused" i mean that he yelled "NO!" repeatedly, then grabbed something of hers off the table and threw it across the room. yeah, time out for asher. and after the time out, after apologizing, he was asked repeatedly to pick up whatever it was and put it back, to which he replied "NO!" so... time out #2!

of course, now he's sitting blithely at the table in his high chair, singing Bob the Builder ("Bah Bih hahadooha kakaka!," roughly translated, but it's the exact rhythm, key, notes, everything!) and waiting for pizza. not that he'll eat any, all you medi-types reading this, but still... he's waiting for supper. the only person who can't eat is the only person at the table. ironic, n'est-ce pas? lol

btw, i didn't end up taking asher in to emerg yet. i decided to let him sleep overnight, which he did for the most part. right now i'm just keeping a close eye on him, but he'll be seeing someone medical in the next few days about those ears, rest assured.

anyway, have a great weekend, everyone! :)

please pray for Yale

he's in PCCU in london right now. his sats are in the 60s, his function is terrible, the word "transplant" has been uttered. please pray for him and his mom, tanna. here's the link to his blog if you want the details.

http://babyboyseaton.blogspot.com/2008/10/yale-is-in-icu.html

i have great friends

yesterday i had coffee with another heart mom... actually, another HLHS mom, to be specific. it was great. the kids were happy to see each other, too... well, they would have been, i'm sure, if they weren't suffering from heart failure and a double ear infection/tube infection, respectively. but we moms had a good time. :) anyway, i was telling her (and i've recently written on My Simple Life) about how horrible i feel with the whole food situation with asher, and the choice i have to make every mealtime. he wants food, but it could kill him, but so would a heart attack from crying if i withhold it from him. well, my friend wrote on my wall on Facebook today. here's what she wrote:

I had a thought yesterday when walking home... about how you feel a little bit of guilt when giving into Asher's wanting to eat... I was thinking there IS going to be a point when he will no longer need the tube right? and sure its dangerous for him to drink and eat...but how is he ever going to learn if you don't give him the experience.... You're a great mom!

you know, this little wall post really helped. what an encouragement on an otherwise horrid day. so, thank-you, T, for being such a great friend. and if you need anything, just let me know. i'm not far if you need me...

Asher in his not so happy place

Some of you may recall that the other week, Asher had his first ear infection. Also at the time, he had his first tube infection of the season. Oh, yeah, delightful. You may also recall that he was prescribed a course of Keflex, an antibiotic used to treat ear and tube infections.



Ok, so, funny story: we're in immunology on Wednesday, talking with the fellow. I had already told her about the ear infection the week before. Well, later in our uber-confusing appointment, she was assessing him, including checking his ears. She said, "so, the infection was in the left ear." I said, "no, right." She said, "no, left." I said, "no, it was in the right." "well," said she, "his left ear is pink now." Ok, so the story's not so funny. Not at all, actually. Anyway...



I've been keeping an eye on Asher over the last few days, checking for signs that the infection was getting worse. I've also been keeping an eye on his tube site, because, despite a week of antibiotics, the infection had not, in fact, cleared up. And when we checked it out yesterday, it was, in fact, worse. I'm sure you can guess where i'm going with this.



Or rather, where i went this. And with Asher.



That's right, we went to emerg. But i decided to take him in to London today, instead of St Thomas. For one thing, they know Asher better in London, and since i have no ink for my printer at the moment, i don't have a sheet listing all of Asher's issues and quirks. And, i figure, this is exactly what happened with Asher's tube back in January, and they handled that in London. So, i figure, we'll go there today.



We were there all day. It turns out that both of Asher's ears are infected now, although the left is worse than the right. Also, the tube... yuck!!!! It is the yuckiest, ooziest, crustiest, reddest, smelliest, most disgusting tube site i have seen in a very long time. Disgusting. So they swabbed it and sent it off for a culture.



And that took hours.



So, literally, we had to sit around in emerg, waiting, for about, oh, 5 hours or so.



Ok, the waiting isn't so shocking. But i was not expecting the swab/culture route. I thought they'd look at it, smell it, write a prescription, and send us blithely on our way. But, of course, that would have been too easy. Especially considering i hadn't eaten breakfast before going, so i was starving. Ah, well, at least i got to read some 8-month-old fashion magazines while we were there. And Asher watched Thomas and Wiggles DVDs. Which meant that i got to watch them, too. That was a fate worse than death cruel and unusual thrilling, let me tell you.



Anyway, they got the culture back, and it's the same bug he had on his tube back in January. So, they prescribed the same antibiotic: Cipro through the tube, and Fucidin on the tube site. And then they sent us blithely (and hungrily) on our way.



Well, we got home, hooked up his feed once more, and all was working well. Then, it was med time. So we gave him his Cipro. Or rather, we gave him part of his Cipro. You see, the tube f***ing clogged half-way through the dose!!!! Are you kidding me?! I can hear you say. Oh, my friend, i wish i were, believe me. And it's not just clogged, it's PLUGGED!! Nothing is getting through there right now.



well, i did the usual de-clogging routine. Water in a small syringe. Nope. So, saline in a small syringe. Nope. 
Saline with a smaller syringe (increase the pressure). Nope. It's plugged. Fantastic.


So i just talked to the Interventional Radiology nurse-on-call, and, as it turns out, they can't get any staff in tonight. Which means that we have to wait. Until 8:00 tomorrow morning!!!! Which means, you'll note, that Asher will be without food until about 9:00 tomorrow morning. After getting about 1 hour of his feed since noon today. And Asher gets nothing by mouth.


now, i know there's doctors reading this, and i'm sorry if you're offended. I'm tired, i'm stressed, and i'm ticked off that we just spent all day in emerg and then we have to turn around and go right back... first thing in the morning. Arg. So please don't take my bitterness personally. But seriously!!!!


I think i need to stop this post now before i get really ticked off. I need some coffee. From my happy place. I'll be back. Toodles! J

Asher in his happy place...

tim horton's. could i be any more proud? lol

So i says to her, i says, “You’re lovely.” But then later, i was confused. (go get a coffee, come back, and settle in. it's a long post.)

Well, today we had to go to SickKids. Honestly, sometimes i love that place. Without them, i wouldn't have Asher. we went today for a sedate echo. Oh, yeah, and immunology. But i'll get to that in a minute. First, cardio.


The echo went well. The chloral hydrate (sedative) kicked in while the nurse was still flushing it down the tube. She said it would take 30-60 minutes for it to take effect. Try 30-60 seconds. I'm not kidding. While she was doing the flush to get all the med in, asher was starting to weave on the bed and his eyes were glassing over and he actually tipped right over. He would have fallen right off the bed if we hadn't been standing right there. Anyway, asher got pretty belligerent, fighting the med for about 20 minutes, but then he just sort of stopped fighting, and within minutes he was hooked up to monitors and the tech had already started the study. I don't think asher even moved the whole time. Then the fellow took some pictures and then the tech took some more. It was thrilling. I read my book (Eat Pray Love by Elizabeth Gilbert, in case you're curious. I'm really liking it. Maybe i identify or something. But i digress.) then they did an ECG. Then we waited for asher to wake up. Yup, we drove to Toronto, arriving shortly after dawn, to sit in a dark room and watch asher sleep. Yup. Nice.


Well, he did wake up, and he was not happy. Belligerent, once again. Notice i'm not saying irritable. That's a cardiac symptom, or something you'd expect from waking a toddler too early from a sound sleep. Nope, belligerent. The dictionary defines "belligerent" as not a happy drunk, one prone to yelling and causing a disturbance and rudely demanding his own way. And he wasn't allowed to walk, because he was so dizzy he was tipping over even when sitting still, and smashing your head on a concrete floor, even when surrounded by medical people, is never a good idea. So, instead, he got strapped down in the stroller and got walked around the cardiac clinic while we waited for Dr Russell.


Well, she came in, sat down and said...



"everything looked good on the echo." Yay!



"if you're happy doing clinic visits in London now, i'm ok with that." Yay!



"i don't see a need for a cath right now. I'll order it for the fall, and then the fontan the following spring." Wha-?!



"how do you feel about that?"



So i says to her, i says, "You're lovely."



That's right, folks, pre-fontan cath next fall, which would be 2009, and then the fontan in the spring, which would be 2010, which is A YEAR AND A HALF AWAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!



I did mention to her, however, that i'm a bit worried about waiting that long. Not that i want my boy to go in for open heart surgery any time soon, but at least he's strong right now. Wouldn't it be better to do this when he's strong? He doesn't usually do so well in the winter/spring, and that weakens him, so i'm a little concerned about his strength going into the surgery. She agreed that that is a good point and something to consider, but she's still going ahead with next year for the cath. if we need to change those plans, we can. And you know, i'm cool with that. Really, i think i'm just freaked out about post-fontan stuff. Even the arch re-construction, complete with circulatory arrest, doesn't bother me nearly as much as all those potential post-Fontan complications (eg, PLE. Disgusting, and only occurs post-fontan. Basically, it is monster diarrhea that eliminates protein from the body. Nice, eh?). rationally, i know that none of these things might happen, asher may sail through it all with flying colours and not need a new heart for many, many years to come. But still, you know, i'm a mom. I worry.


But, at the end of the day, we don't have a cath for a year, surgery for a year and a half, and we didn't even get a next appointment date before leaving! See? She's lovely. J



Ok, so that's cardio. Delightful. Now on to immunology for our 12:00 appointment.



For which we waited 2 more hours.



In a tiny, tiny waiting room.



That was very busy.



And noisy.



And full of people.



Who stared at my drunken baby.



And doctors who would pop out of their conference room once in a while to make jokes about husbands and wives.



To me.



and ed.



Yeah.



And that was the fun part.



Then they called us in.



While i was down the hall in the ladies' room.



Because that's when they call you.


When you're in the loo.



Ok. enough fragment sentences.



So, we go in and talk to the fellow. Again, we're on the subject of DiGeorge Syndrome. Now, personally, i can see why they'd suspect DiGeorge. On the surface, it looks suspicious. Severe heart, wonky kidneys, t-cell deficiency, feeding difficulties, history of low calcium. But... when you actually look at asher's conditions and compare them to the list of DiGeorge issues, there's some significant differences:

1. Severe heart, yes, but Asher's heart is hypoplastic, not truncated. So, close, but wrong.
2. Asher's kidneys are underdeveloped, but not malformed.
3. Asher's feeding issues are mainly due to vagus and laryngeal nerve damage. Doubtful that it's congenital.
4. History of low calcium, yes, but not anymore. Now it's too high. The low levels only happened after his diagnosis/hybrid and Glenn.
5. Asher actually has Chromosome 22q11. (if you're not a geneticist, that will mean nothing to you. So don't worry if you have no idea what i'm talking about here.)
6. Facial deformities? Um, have you seen asher? I don't think so.
7. Low IQ? Again, um, have you met asher? I'd wager he's my smartest child. And remember, i have a 6-year-old cardiologist upstairs right now, and another boy who can talk for hours about trains and not repeat a single bit of information. He could write a book, that boy... if only he could write... or hold a pencil, for that matter. But again, i digress.
8. If, at some point down the road, asher develops a serious mental illness, it will more likely be attributable to a lengthy family history on both sides of his family tree, and not linked to any other congenital issues he has.

The only issue asher seems to have that screams out "DiGeorge! DiGeorge!" (at least to the immunologists in Toronto), is his t-cell deficiency. But, they said, that hasn't really been a huge issue, because most of his infections were viral and not cellular and the only one that concerned them was the sepsis but other than that he's never had severe diaper rash, so it could just be that the control they compared him too was uber-healthy, so that might not be an issue but let's do a bunch of bloodwork that genetics has ordered even though they're not seeing him yet and has anyone discussed VECTOR with you or have you heard about it? He might have anal atresia but that doesn't mean his anus is closed just missing so he could still poop but he's constipated and that fits with anal atresia too even though it might still be patent. (get out your medical dictionary, folks. Look up "atresia." Now look up "patent." You see why i was starting to get confused here.) and something about his vertabrae, has anyone looked at them? And has he ever had a reaction to any vaccines? Wha-? Does anyone see the connection here? If you do, please explain it to me, because i just don't get it.



Ok, i'm admitting here and now, once they started talking about the different infections asher's had and how some are immunology and some don't count, they lost me. i know why. They didn't dumb anything down for me. And that's understandable. A mother comes in and knows a TON about a syndrome her child may not even have, and they're going to assume that that mother knows a lot more stuff. Which i do. Unfortunately, that "a lot more stuff" is not, in fact, immunology, but rather cardiology and cardiovascular surgery. I read up on DiGeorge because of the connection with the heart stuff. (notice that i know the difference between truncated and hypoplastic defects. And then i wonder why people suggest i go to medical school. But i can't. I mean, the only thing i'd be interested in pursuing would be paeds cardio, but i couldn't do that, because then i'd know. I mean, i know that i already know, but then i'd really know, and i just don't want to know, you know?) ok, so doc thinks i know more than i do, so she's not dumbing anything down. And she's differentiating between types of infections. I know viral and bacterial. I know t-cells fight bacterial infections, and play a role in transplant rejection. There you go. That's the extent of my knowledge on immunology. That's it. Oh, no, wait, i lied. Sometimes, people need antibiotics to fight infections. But only bacterial ones. Meds can't help with viruses. And, um... sometimes, you get vaccinated. And some of those vaccines are "live," but i don't know which ones, or what that means, exactly. I have an idea, but if some are live, that means some are not, and if it's not a live vaccine, then how can it be effective? You see? Immunology is not my bag! So why couldn't she just pretend i don't know anything and talk slowly and clearly and monosyllabically? Because, my friends, that would be too easy.


Ok, so then they wanted to send us for bloodwork. And then they didn't. But they might. Nah, it can wait till our genetics appointment. and here's the req, if anyone else wants bloodwork done. but not in london. must be here. but they can wait. and yeah, the tests we've been talking about for the last 5 minutes, that you were starting to understand? Yeah, ignore those for now. We can't do those until he's 2, anyway. So, maybe we'll wait a few months. Besides, genetics will just want more tests done, and those can't be done till he's 2, although they may want them now and you will have to come here not go to London to see genetics there nope gotta come here and we want to test him for DiGeorge even though the last tests we did were negative and we've done the only test we can do but genetics blah blah blah now dad go take your wife out for a nice lunch i'm sure she likes seafood that would be nice see you in a few months here's the NP with your appointment card.


Did all that confuse you? Me, too. 


Wow, this is really long, so i'll stop for now. All in all, a mixed day. Great news from cardio. I can't tell if it was good news from immuno. I'll let you know when i figure that out (or find a doc who can translate for me). In the meantime, have a great rest o' the week, and i'll talk to you later! J

my big boy!!!!

hi everyone,

i'm writing to let you know that edwin and i have now separated permanently and will be getting a divorce. this has been a long, painful and sorrowful journey for each of us, but in the end, we are parting amicably and peacefully.

we still care for each other deeply, and will be supportive to each other for the rest of our lives. we continue to be best of friends. but we also now realize that we make better friends than spouses.

in all of this, the children are doing well.

there is now, at long last, peace between us, and this will help the children.

i really appreciate your prayers and support during this difficult time, and would ask that you continue to pray for us, as the road ahead during the next while will be stressful for all of us.

thank-you so much for your understanding. if you wish to talk, please feel free to contact me.

heather

another yale update

he's home!!! yay!!!

Yale update

check out his blog for details. keep him and tanna in your prayers. thanks!

http://babyboyseaton.blogspot.com/2008/10/still-at-sick-kids.html

yup, he can talk... now if only he'd stop once in a while!

i'm not kidding, he even talks with the soother still in his mouth! now, i'll admit i'm a bit of a newbie to the world of soothers, given that the other kids prefered me over anything else and both flat-out refused soothers (ok, i didn't even offer one to blithe, but we all know what bram's like... total mama's boy, he only wanted me, and if he couldn't have me, nothing else would do). but really, i would have assumed that the whole point of the soother is to stop noise from coming from the child's mouth. or am i wrong here? have i been misinformed somewhere along the way?

anyhoo... asher talks. a lot. like, all day. non-stop. suddenly, i'm the quiet one in the house! stop laughing, it's true. you doubt? allow me to illustrate:

today, i was getting asher dressed for his appointment with dr b (asher's fine, just an ear infection - another first in the family! - and that's causing his heart to work harder than usual, which is causing all the cardiac-looking symptoms). i went to put on his socks. i put on the first one. no biggie. then he picked up the second one.

me: where does that go?
asher: sock... toes.

look at that, folks! an (almost) sentence! how do you like them apples, eh?! :)

not that i'm counting down or anything...

in exactly 2 months, Asher turns 2!!!!!!!!!!!!

who knew he would make it this far, eh? and he's still going strong! yay, asher! :)

yes, but we got to come right home!!! how much do i like dr b!!!!

so, i took asher in to paeds today. he's been pale (not even the rosy cheeks!), sweaty, puffy, refluxing, short of breath, and when he sleeps, his arms and feet are almost charcoal grey. not pretty.

so i took him in to see dr bertoldi today, who checked his sats. 87%! (i'm loving post-Coles! it would seem as though asher likes having blood flow to and from his lungs) everything else seemed fine. even his liver was, to doc's surprise, right where it's supposed to be. imagine that, a liver tucked up in its own little nook, as though that's where it should be or something. she also checked his ears. his right ear is not red, per se. it's more along the lines of pink-ish. so basically, i'm to keep an eye on him and if he needs to be seen, he needs to be seen. sheesh! it's like she thinks i keep him away from doctors as much as possible, waiting as long as i can stand it to take him in. now, where would she get that idea, i wonder... lol

here's what you need to take away from this post: no meds, no call to liz, no trip to emerg. delightful! here's hoping dr b remembers this next time we're in, and we can repeat this. no more "yeah, i'm calling liz." (hint hint) ;)

something normal... and it was wonderful!

i took the kids to Springwater for a nature walk yesterday. it was wonderful. the weather was perfect for a hike: cool, with no rain in the woods, not too bright, not too dark, absolutely perfect!

i wore asher in the sling yesterday, too. i haven't been able to do that with him. i think he only ever went in the sling once, and he threw up all over me (obviously before we had his reflux under control!). so this whole time, he's been in the stroller. but let me tell you, it's not easy taking a stroller for a hike. so, i decided to wear him, and then he could walk for a bit, too.

it was nice to wear him. i wore the other kids so much, and i've been feeling a bit like i've been missing out a bit. i just haven't had nearly as much "cuddle time" with asher as i'd have liked. but you know what? he loved the sling!!! he spent the whole time chatting with me, pointing out things he saw ("tee," "chi-uk" [chipmunk, for those unversed in toddler-with-throat-issues-speak], "eef," "bam bife" [bram and blithe, according to asher], and of course, "mummum" which is what he calls me... awww!), giving me hugs and winks and loving every bit of "mummum" time. and i wasn't complaining, either! :) it all felt so normal, so simple, so perfect.

a couple times he wanted down from the sling, so i obliged. you can see for yourself how much he enjoyed that. [dr bertoldi, stop reading for a minute... just skip ahead a couple sentences... you don't need to read this next bit. i'll tell you when to start reading again.] but he was so short of breath, he'd be huffing and puffing pretty fiercely within a minute or so of walking, which isn't so normal for him lately, but i'm going to tell myself that hiking is more strenuous than running around the house. yeah, that works. [ok, dr b, you can start reading again.] he loved chasing after blithe and bram, and the older two loved being able to sit on the ground with him and look for acorn caps. [yikes! paeds should probably ignore that sentence, too. kids with no t-cells shouldn't really play in the dirt. so, dr b, just ignore this whole paragraph. thanks. lol]

it was, at least by my standards, a perfect morning. and i hope we have many, many more of these. so let's all touch some wood and say a little prayer and light a candle and do whatever it is we do to beg and plead to the cosmos for some stability, health and happy/normal days for asher and the rest of us. fall is upon us, my friends, which means that, for my immunodeficient boy, there will likely be many trips to paeds, who will call cardio, who will say "to emerg with him!" who will now have to actually look for something wrong because it's not hot out anymore. and let me tell you, that's not nearly as fun as it sounds. i'm hoping that none of the new cardios will know how i take my coffee (black, hint hint) for a very long time.

and while i've got your attention, an update on yale: he's being admitted in toronto tomorrow for a sedate echo, CT scan, and who knows from there. likely a cath and a barrage of other tests. please, God, let him just need a med change. anything else is just too much. please keep yale and tanna in your prayers. i'll post when i have details. or you can check for yourself; the link is on the sidebar. thanks. :)

please pray...

asher's friend yale is having some trouble right now. he's heading to SickKids this week for an MRI, and from there they'll determine what needs to be done. there are many possibilities; the big three are

1. med change. this is the easiest, for everyone, especially for Yale and his mom, Tanna.
2. surgery.
3. transplant (if the other 2 "solutions" don't work).

you can imagine this is a very stressful time for them. please pray for them and the doctors. the link to yale's blog is on the side bar (i think it's the first one listed under "Heart Journeys"). check out his blog for all the details. thanks.

'nuff said ;)

sorry about the lighting, or lack thereof. and once again, you'll have to tilt your head. (i am not responsible for any neck injuries caused by viewing this video.) but you get the idea. he's bipedal now, folks! :)