VICTORY IS MINE...ish...

for those of you who don't know, asher was admitted to sick kids on friday after his emergency sedate echo. dr russell had ordered it after i called her, and after dr b called her, after some, um, issues with london cardio. what's happened to them there?! asher's own doc doesn't know his diagnosis and doesn't recall meeting us. and then there's the incident with a certain NP all but hanging up on asher's paediatrician with a "it's not cardiac so you're going to have to figure this out without us."

so, asher was admitted on friday for observation. he spent saturday morning sitting calmly in a stroller while i was out (have you ever known asher to sit quietly for a couple hours? no, neither have i. this would be the "lethargy" i'd been talking about). once i got back, we went for a walk on the ward. after less than 10 minutes, asher sat down in the middle of the hall, dark blue, with sats at 59%. he was short of breath, and really didn't have the energy to get back to his room on his own. after a nap (2 hours), he played in the playroom. where his sats were in the 60s. and he kept having blue spells.

the next morning, he walked around his room, and after 5 minutes, he was huffing and puffing like a 50-year-old, 300-lb chain smoker with asthma after shoveling a driveway in february in hamilton. (pretty picture, no? lol) this was mentioned on rounds, and the cardio, after reviewing the episodes from saturday, and getting that report from the nurse, described the symptoms as "very concerning."

asher's issues on sunday weren't so much blue spells or sats (though he sat in the low 70s when awake). no, it was his heart rate and blood pressure. BPs were around 110/70, and his heart rate was all over the place. he sat up after a nap, and that sent his heart rate over 140. his walk to the playroom? yeah. 170. and when he took 10 steps to the shelf and back to the table where he'd been sitting, 155. and desat.

this morning on rounds, dr d thanked me for giving them a puzzle on a monday morning. haha, very funny. but she discussed the whole thing with dr r, and came back with this: asher's not going to have a heart attack in the next couple weeks so he's safe to go home. but his symptoms were serious and concerning and require further investingation. so.....

we came home today. they're doing a cath on the 4th, and they're going to look at pressures all over the place. apparently, the pressures in the PAs, around the glenn, were somewhat high in may, so they're starting there. and given asher's love of scar tissue, they're going to check out the pressures in the PVs. we also came home with a holter.

so, drs r and d discussed asher's case today, and they decided on the cath. but they also sent us home b/c these episodes don't seem to cause him to cause him much distress when they happen, and they don't think he'll have a heart attack in the next couple weeks, so he's safe at home. but you'll notice the short date. nice, eh? ugh.

getting you all caught up...

yes, i've been slacking a bit. ok, a lot. but i've been busy. mostly busy in emerg and clinics and trying to get someone cardiological to listen to me. here's the tale, but a shortened "in a nutshell" version:

asher has had an infection in his GJ-tube site for about 6 weeks now. first is it was treated with keflex, then with cipro, then they discovered that it's not bacterial after all, but rather yeast, so they prescribed an anti-yeast cream. after 10 days of that, and the site getting worse and worse every day, they prescribed an anti-yeast powder, and that seems to be working. but in the meantime....

asher's been having blue spells for about a month now. since 8 december, actually. we were sitting at the dinner table and he turned dark blue for no apparent reason. that was when cardio said in emerg that he must have caught a draft and "are you sure he's hypoplastic left?" yeah.

well, since then, he's been adding another cardiac symptom every few days. puffiness, shortness of breath, tachypnea (fast breathing, and yes, it's different than shortness of breath), lethargy, restlessness, reflux and vomiting, and so on. yup, basically, if it's a cardiac symptom, he's got it. lovely, no?

um, let me think... no. and so, i have had him in emerg roughly every week because of these symptoms, each time updating this list. so far, they have all blamed the symptoms on the infection (duh! his heart is working harder than usual because of this tube, so of course it's the infection. but in the meantime, HIS HEART, PEOPLE!! LOOK AT HIS HEART!!!), so they've been working on fixing the infection. which makes sense, but you kind of have to multitask with this kid of mine, because, um, he's kind of complicated. nothing is so simple as "fix the tube, then the heart." no. the heart has to be strong to get him through the infection. why do i get this, and no one else does?

and i know there are london heart moms reading this thinking, "why don't you just page the NP? she's good with this stuff. she'll listen." oh, yeah. brilliant. i did page her, as a matter of fact. and, well, she never returned my page. ever. yeah. SO not impressed over here.

well, i thought, if london's brushing us off, if we're falling through the cracks in london, i'm going over their heads. that's right, i called toronto. dr r (sick kids cardio) had handed us off to london back in the fall. but that was before asher got sick in november (and he hasn't been the same since!) and before this tube infection. and, long ago, dr r learned a valuable lesson: if i call and say asher's blue, it means he's blue. if i call and say he's sick, it means he's sick. and so, predictably, when i called her on monday morning, she listened. she actually said that the symptoms he's exhibiting now aren't normal for his stage, and he needs to come there for some testing. that's right. she listened. she said that she's going to get him in sometime in the next couple of weeks.

well, i got the call yesterday afternoon. asher's appointment is now booked for thursday, 22 january. sedate echo at 8am, doc at 11, then we'll get hooked up with a holter.

for those who don't know what a holter is, it's basically a long ECG. the heart's rhythms and whatever else (hey, i'm not a cardiologist yet, leave me alone! lol) is recorded over a long period of time, to see if anything funny is going on that's triggering these episodes. even though there's no apparent link between activity and the symptoms, something must be going on, so a holter should show it. i told her he has roughly 4 to 6 blue spells a day. so the holter, which is worn usually for 24 or 48 hours, will show what's going on. for more info about holter monitors, check out this link: http://www.aboutkidshealth.ca/HeartConditions/Other-Tests.aspx?articleID=6582&categoryID=HC-nh2-11h it's from the sick kids website, and tells you everything you need to know.

frankly, i don't know what i'm hoping for here. do i hope they find something? i don't know. there are so many reasons for something to go wrong with his heart rhythm. the Glenn, the vagus nerve damage, the stent in the right atrium (oh, buffo would be impressed that i know that! lol). then there's just a potential general weakening of the heart from the fever in november and the long infection. on the other hand, we all know how asher likes to do things his own way. so it could just be him misbehaving. lol

i don't know. i'm just putting these ideas out there. in the meantime, that's what's going on in asher's little world. i'll try harder to keep the blog up-to-date from now on. meantime, i just have to tell you, i typed this post on my brand-new notebook. it's cute. it has hearts on it. yes. i am a marketer's dream. lol

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