How have i not posted about all this yet?!

It would seem i've been somewhat remiss the last couple weeks, not posting the latest news in Asherland. So, my apologies. And now i'll attempt to make up for it.

As you may or may not recall, Asher was admitted the other week to SickKids for the weekend for some good old-fashioned observation. They saw him desatting to the 50s and 60s, high blood pressures (and by high, I mean, higher than mine!), and his heart rate jumping up at the slightest activity. and just so we're clear about this "jumping up" comment, let me give you a couple examples:

• He sat up in his crib, and his HR jumped to 140. When he sat up. Yeah.
  
• He walked around his room for 5 minutes. 150. And short of breath.
  
• He walked around the ward for 10 minutes. 170. And desat to 59%.
  
• He took 10 steps across the play room. 155. Sats in the mid-60s all afternoon.
  

Ok, i realize that those numbers don't mean much to most of my readers, but that's ok. You heart moms and docs all know what i'm talking about (oh, please, Pepy, don't read this post. LOL). For those of you unschooled in the basics of Paediatric Cardiology, i'll say this: those numbers? Yeah. Not good. Asher simply should not be doing this at this stage. Or ever, in my opinion, but what do i know? Well, other than knowing that oxygen is good, and heart attacks are bad. (ok, fine, Wendy, i know a lot. Sheesh! i can hear you protesting from here! LOL)

When we were discharged from SickKids on the Monday, we were sent home with a Holter. Gosh, i love those. <rolls eyes> i understand that they're necessary and help detect rhythm issues and that sort of thing, but let me tell, it was not invented by a heart parent. Ah, well, i guess if it helps them to figure out what's going on in Asher's heart, it's a good thing. I guess. LOL

The other thing is the cath. Asher is scheduled for a cath on Wednesday morning. Don't know what they'll do for this? Well, let me tell you: they're going to be checking pressures and that sort of thing inside asher's heart and vessels in the area around his heart and lungs. How do they do that? Well, for starters, they will be inserting a long tube through a vein in his groin/hip area (the femoral vein) and traveling up that vein and into his heart, where they will be injecting dye into his heart and using that to look around. Inside his heart. Blech. They will also at this point check his pulmonary veins, those vessels that bring red (oxygenated) blood from the lungs to the atrium (left atrium in us, common atrium in Glenn kids). Once they've checked that stuff, they will remove the tube from his groin, and put another one into a major vein (the jugular, i believe, but don't quote me) in his neck. They will then travel down that vein and into his pulmonary artery branches (the vessels that take blood from his head, neck and upper body into the lungs. Blood from his lower body doesn't go the lungs yet). They will be looking around and checking the pressures in the PAs tomorrow, as well, knowing that the pressures were high in May after his surgery, and that Asher is very fond of scar tissue, and he has some lovely patches in there thanks to Dr Caldarone.

Needless to say, Wednesday is going to be a rather freaxious day. I'm not really looking forward to hearing what they find. You all know i have my theories. But to be honest, i don't know what i'm hoping for. I think i'm hoping that they'll find something wrong, because then they can fix it and Asher will improve. And if they don't find anything, then what is causing all these symptoms?!

So that's heart stuff. I will post results of the cath as soon as i can.

In other Asher stuff... we have nephro (kidneys) clinic this morning. Ultrasound, bloodwork and doc. And how much do i love our nephrologist?! Lovely, lovely man. Very nice. I don't think we'll be getting any real news today. The HCTZ has been helping to lower asher's blood pressure and reduce the calcium build-up in the kidneys, so i don't think that will be too much of a concern today. Calcium in the kidneys is not a good thing. And asher had quite a bit of it at one point, but in a delightful, non-Asher-esque development, it has been getting better over the last year or so, and i can't imagine that anything there has changed.

Let me see... anything else to report?... ah, yes. Got a call from genetics in Toronto the other day, and we have an appointment scheduled for April. I don't know too much what to expect, although i know i will be receiving a form in the mail in the next little while which will ask all about Asher's family history. That should be interesting. I'm (almost-ish) looking forward to this appointment, i think. I would like one of two things: either we will get some answers, or they will see that HLHS and his other issues have just "happened" and then they'll leave us be. (and yes, i know... the odds of a hospital leaving us alone would be a miracle, but a mom can dream, no?)

So, there you have it. The low-down on Asher's medical stuff right now. I'll post again when i have some more info for you. Meantime, please pray for my boy, and for us all. Thanks so much. Talk to you later! J

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!