Sunday, August 31, 2008
that's right, folks, asher's tube came out today. which meant, of course, another trip to Interventional Radiology. you know, i hate that part of the hospital. and so does asher. he knows, as soon as they put the lead on and bring in the cart with sterile equipment, he starts to cry and cling to me.
and all i can do is pin him down and tell him that he's doing great.
we almost went the whole of august without a tube change. almost 2 months with the same tube.
and then, when annie was over this afternoon, asher joined us outside, with his tube trailing behind him.
ah, well, such is life with asher. just when we start thinking we're going to spend the rest of the day at home relaxing, we have to rush off to london.
it's exhausting, and i'm tired of it. but, as i told someone recently, i'll take it, because the alternative is much, much worse.
thanks for letting me vent a bit. we both just hate tube changes so much. :(
Monday, August 25, 2008
some favourite asher pics from the picnic. for the rest of the pics, check out the link in the previous post
here's some of the best pics of asher....
jodi lin, ryley, asher, hunter. one of these kids has their own original healthy heart. the others are single ventricles and transplant. other than asher (duh!), can you guess which kid has which heart? betcha can't! and that's the best thing about this picture, if you ask me. :)
asher grabbed my camera.
asher and dominic. 2 single ventricles, neither of whom seems to understand this.
it really was a wonderful day. asher made a new girlfriend, dominic's older sister jodi lin. yup, it's love, folks, but i don't think i'll be publishing those somewhat scandalous pics here, thank-you very much. they're in the FB album, though. lol anyhoo....
great day. thank-you so much, jenaia, for organizing the day. it really was wonderful to finally put some faces to the names and stories we read about on the wall and discussion boards. can't wait till next year! :)
Sunday, August 24, 2008
it was a great day, so much fun. it really was a wonderful time with other families who know what it's like, this life...
it was wonderful to meet so many other heart families, and i can't wait till next year! ttys! :)
Wednesday, August 20, 2008
everything went really well today. asher's echo was very good... his arch, which is severely stenotic (narrow narrow narrow), is unobstructed, meaning blood is flowing nicely through it. phew! this is great news, because the arch was dr hamilton's main concern the other week when he saw asher in emerg, so this is great.
there was no mention of the fontan, the word "reconstruction" was never spoken, and dr russell was very happy with how asher looks. she said that she still wants to see us in october, but that's mostly because she doesn't want asher to fall through the cracks before getting "well established" with his new cardio in london (i laughed and said, "oh, don't worry about that, asher won't let that happen!"). but she also said that if i think asher is doing well for the couple weeks leading up to the appointment, i can call her and we'll cancel or postpone the appointment.
i can't tell you what a relief it is to finally get good news from cardiology! yay!!!!!!!
Tuesday, August 19, 2008
i'm not anticipating much in the way of good news from dr russell tomorrow. well, no, she'll say that clearly he doesn't have CHF now. but that much i know already. she will say, however, that given his size and the scare he gave us all recently, that it's time to go ahead with the Fontan and arch reconstruction. (this means two separate surgeries, a week apart. one where they cool him so that his blood doesn't circulate at all while they work, and the other is open heart, which will include time on bypass.) the good news we could get is that they will forego the cath, since he just had one in april. that would be lovely.
please pray for us as we travel, for the other kids as they spend the day with my parents, and for ed and i as we spend a stressful day in toronto. i'll post when we get home and let you know how it went. thanks so much.
Tuesday, August 12, 2008
the good, the bad and the ugly. well, i don't really know what the "ugly" would be here, but it's a catchy title, so i'm going with it.
CARDIOLOGY (monday afternoon)
no echo, no ECG. they did these recently already, and they don't like to do too many tests. asher's weight is now 12.1 kg (a little over 26 lbs), though just how much of that is fluid and how much is him, i can't say. as for height, he is now at 79.5 cm (32"). that's quite a spurt: after his surgery in june, at post-op clinic, he was 75 cm. so he's gained almost 5 lbs in less than 2 weeks (can you say "fluid overload"?), but he's grown about 2 inches in the last 2 months! yikes! no wonder he can pull stuff off the bathroom counter now (yet another reason we keep the bathroom door closed. immunodeficient toddlers don't play in toilets. well, asher does, but he shouldn't. anyway...) ok, enough of the fluff, on to the meat:
liz was not impressed with asher yesterday. not that she should be. i can't imagine it's a good feeling to see a patient in congestive heart failure. and that's what this is. they can't understand why it's happening, though. yes, fluid overload, but... it came on so fast. we've been upping the volume of formula for a while now, and we've been going pretty slowly. but this came on somewhat out of the blue in the last week or so. sure, there were hints that it was coming (remember the trip to emerg when he was grey? yeah), but once it got going... well, let's just say that asher's reputation of crashing fast is well deserved. he was so short of breath during clinic. and while the colour on his forehead was better, liz said that his nose, mouth, hands and feet are blue/grey. she was also unimpressed by the puffiness around his eyes, and as she told him, "children your age shouldn't have folds around their ankles anymore." to which i replied, "what ankles?" she just kind of nodded reluctantly.
yeah, liz was right on friday. asher should be doing better than this.
and now moving on....
NEPHROLOGY (tuesday morning)
well, this is the "good" i refered to in the title. here's the deal:
asher's nephrocalcinosis, the calcium that has built up in his kidneys, is decreasing!!!! there's less in there! that's the miracle of HCT, my friends. this is what happens when nephro and cardio work together on a situation (back in march, asher needed a BP med, but he was still on the study drug, so they wanted to stay away from that same class of meds. so nephro decided on a diuretic, but since lasix would cause more calcium to build up, he consulted with cardio and they decided on HCT. the whole incident brought a tear to my eye and was, for so very many reasons, a dream come true. all you SN parents reading this know what i mean. sub-specialists never consult with other specialties. it's like there's no other organs but theirs. i'm not joking. so this was just beautiful.). so, yeah, less calcium means the filters are not as clogged, which means less chance of infection and better kidney function. that's right, folks, IT WAS ALL GOOD NEWS!!!!
but wait, there's more:
honestly, what am i going to do with all that time (other than cardio and CV surgery stuff, i mean, duh!)?! do you realize that we have never been able to go 6 months between appointments with any of asher's doctors?! this has never happened before, and to be honest, i'm still a little shocked. i mean, this just doesn't happen in Asherland! not that i'm complaining, mind you. honestly, i could have hugged dr filler when he said that... if i hadn't been lying unconscious on the floor! lol so, yeah. good news from nephro. yay!!!
so there you have it. the good, the bad, and i mentioned the ugly yesterday (which would have been my "wardrobe malfunction" during my meeting with dr a). so, that's it for today. i thought i'd end with the good news. oh, crap, i forgot one more thing from cardio. so i guess we're ending on a downer (again). sorry. but here it is:
liz wants to see asher again in 4 weeks. last time it was 6 weeks. now it's 4. weeks. not months. weeks. notice, the appointments are getting closer together. they don't do that because they like to see your smiling face. nope. means they need to keep a close eye on you. and, if you've been keeping track, asher's next cardio appointment is next week in toronto, and liz knew that when she said 4 weeks. so, average that out, and we're looking at 2 weeks between appointments right now. why does this feel so familiar? oh, right. it was like this pre-Glenn. the first stage. yup, wanna vomit. anyone else? ugh.
well, i think that's it for today. for real, this time. promise. and hopefully, i'll have nothing to report for a while. talk to you later. much later. ttfn.
Monday, August 11, 2008
yes, i'm showing off, but it's an update, too. i'll post about cardio in the morning. it's not a fun post like this one, so it'll wait.
today (monday) is cardiology in london. echo and liz. hopefully that will be it. i don't want to see any cardiologists, though i'm sure we will. asher's not doing so well, what with congestive heart failure (CHF) and all. i think some of the extra fluid is starting to come off, although when i went to bed last night, his head was very puffy and he vomitted after his meds. not good signs, my friends. he has about an extra kg (2.5 lbs) of fluid on board, which is not a good sign.
and just so you know the specifics of what we're facing: i took asher in to see dr b last thursday, but i already wrote some of that visit. you can check out that post later, i think the title has something to do with being desperate to understand medical terminology you have no need to understand (i can't imagine anyone being like that, can you? *wink*). well, she didn't like how he looked. bad colour, vomitting/refluxing, puffy (she made reference to his new "elephant ankles"), shortness of breath. i mentioned that his liver is enlarged and down, and she confirmed it. (FYI: the liver swells and drops because in CHF, the heart swells. this pushes the liver down out of its comfy little nook above the stomach. i'd like to know the long-term effects on the liver of repeated CHF, so if there's any hepatologists or ambitious cardiologists reading this who have the answer, please let me know. post a comment or email/facebook me. i'm serious. you may think i'm joking, but seriously, i need to know.) the liver thing, yeah, kind of a biggie symptom of CHF. ok, what else? oh, yeah. on friday, i took asher back in to see dr b, because now he's irritable. and yes, that's yet another symptom. (are you seeing any trends here?) she looked at him, and his eyes were puffy (or, puffier) and he was really working to breathe. sats are down, though not much (he had been mid- to high-80s for a while, now he's low 80s), and his breathing was wet. none of that is good, folks.
well, she called cardio and talked to liz, who talked to dr hamilton, who talked to dr russell (our toronto cardio). liz called dr b back, and said that we didn't need to come in that day (which was good, since we're going in today), but that "asher should be doing better than this." isn't that a delightful little comment? thanks, liz. ugh. but oh, wait, it gets better. dr b said to me, "has anyone talked to you about transplant yet?" well, to be honest, yes. but it was only when i asked specifically, and it was toronto cardio dr russell, and she said, "likely when he's a teenager." but that was when asher was only a couple months old, and we didn't know about his other issues, and he hadn't yet had all those infections that take a lot out of an already severely wonky heart.
so, yeah. liz isn't happy, the "T" word was spoken (albeit by paeds, not cardio, but you can bet i'll be asking about it now!). and that's our cardio prayer request.
my other request is this: after our appointment today, i'll be paging dr a, the top doc i spoke with last week (see the post called, "ok, i realize that in a perfect world...". why are my titles so long sometimes? ah, well, i'm heather, i talk. get used to it. lol). anyway, i'll be talking with dr a this afternoon about solutions to the whole "i never want to see that particular doctor again, thank-you very much. asher's too fragile, doc's too dangerous" situation. so far, i have this:
- try to come in between 3pm and midnight. usually do-able. CHF is slow, but requires attention, so if asher looks bad in the morning, i can wait a couple hours. sometimes.
- during the day, i can call ahead to emerg to see who the attending is. if it's this particular doc, i'll call liz and see if we can go straight to clinic instead. that should work, since they're not too keen on that doc dealing with asher, either.
- overnight: i pray to God we never need this one, but it's the only thing i can do. call an ambulance. that will send asher to st thomas emerg. they will give him oxygen if he needs it, maybe an IV if needed. then they call london, tell them what's going on, and rush us there (again by ambulance, with full lights and sirens the whole way. how do i know? been there, done that. surprised? why?). and i just have to trust that, if that doc is the attending overnight, that he will have listened to the st thomas doc and the paramedics, since God forbid he listen to me, because what do i know? obviously, nothing.
so, there you have it. the solution i've come up with. i'm going to mention the idea about a big meeting with everyone involved in asher's care, including the suggestion of a few other emerg docs. this is actually good, because some of them aren't aware that asher has "unusual vasculature" (wonky blood vessels) in his lungs. some of them misread that as being hazy or wet, but it's not. it's just that asher's weird. or, "unusual" as liz puts it. i love the idea of this meeting. totally not do-able, but i love it. and a mom can dream, right? hey!!! unless we come up with some sort of sheet to put in asher's chart that outlines all of his conditions and quirks and how they interact (ie, heart trouble and reflux, reflux and throat, infections and t-cell deficiency, t-cell deficiency and transfusions, oh, the list goes on and on). ooh, i like this idea, and it just came to me now! delightful! i have to write this down so i don't forget later! delightful! :)
anyway, so that's my stressful day today. add to that, i have quite a few other things i need to take care of, all requiring rather urgent attention, and none of which is pleasant (like, how can i keep my house? i don't know, but i don't think it's possible for much longer.). anyhoo, that's not asher-related, so i won't burden you with the details here. maybe i'll write about it on My Simple Life later. maybe not. dunno. wait and see. anyway, please pray today, since we're in for a bumpy ride today. thanks so much! :)
Sunday, August 10, 2008
he's not just the cutest child ever. there's a bit of a story here, too, trivial though it may be. ok, really, it's just an excuse to show him off...
"Mommy, you try!" um, let me think... no.
Saturday, August 9, 2008
Thursday, August 7, 2008
for those of you who, like me, are desperate to understand medical terms that you really don't need to know...
i found out what the "muscle wad" is. so, here you go:
think of a body builder. as they lift their weights and do whatever it is bodybuilders do (wow, i so don't know anything about bodybuilding. shocking, i know. lol anyhoo...), their muscles get bigger. the more you use a muscle, the bigger it gets. makes sense, right? ok, now, asher's right ventricle. it's pumping away, lubdub lubdub lubdub (well, probably more of a lub lub lub lub, he's kinda missing the dub. and no one gets that joke except maybe a couple of doctors who are reading this, but trust me, lubdub is the technical doctor-ese term for the heartbeat). so, the ventricle's pumping, doing whatever it is a left ventricle does. oh, but wait! it's a right ventricle, so it's not built for the workload of the left. that means it's working harder than it's designed to.
so, it's working hard, and as it does, the muscle gets bigger. when you're looking at it from the outside, it still looks the same. it's the same size, because really, there's no room for it to expand out. (do you see where i'm going with this yet?) it can't grow out. it can only grow in.
so, as the muscle gets bigger and the wall gets thicker, there is less space inside the ventricle. less space to be filled with blood. this means that, while ventricular function may look good from the outside, and the blood pressure may remain the same (because the force of the pump doesn't change), there is not as much blood going out with each pump.
yeah, kind of a problem. but what i'd really like to know is: WHAT CAN THEY DO ABOUT THIS?!?!?!?!?!?????????????????????????? yikes! short of not using the muscle, how do you make it smaller? and i mean other than dr caldarone's stent/scar tissue solution of digging it out and scraping it away. i don't like that option. a little too nauseating. i'd like something a little less, um, yucky/risky/invasive/horrifying, thank-you very much. oh, and i'd rather transplantation is not an option yet, either. as it is, i'm thinking transplanty thoughts when i think about the Fontan (but that's just me freaking out. you don't need to think that; it's just that i think about all this a little too much, in case you couldn't tell already). someone, tell me there's a med we can give asher that will shrink his heart muscle, if that's what he needs.
ok, breathing, breathing, in with the good air, out with the bad air, in with the good air, out with the bad air i don't think it's working i'm getting dizzy does anyone else hear that rushing sound or am i about to pass out? yikes, i'm hyperventilating. that can't be good.
so, while i go calm down and try to stop thinking such freaxious thoughts, you have a great day. and don't worry about me, i'll be fine. serenity now, serenity now......
Wednesday, August 6, 2008
dr hamilton called me on tuesday morning. he had just gotten off the phone with dr russell (asher's toronto cardiologist) and given her all the details of asher's current condition. she says, "he's supposed to come here in october. but it sounds to me like he can't wait that long." so, she wants to see him in the next few weeks.
tuesday afternoon, while at my psych appointment, SickKids called and left a message. asher's appointment is now scheduled for Wednesday, 20 August. full sedate echo (which will, i assume, include detailed imaging of asher's aortic arch) at 10:30, and then we see dr russell at 1pm. a long day, and a stressful one.
i don't think i'll be getting any good news at this appointment. please pray for us.
right, so you have some serious issues with the attending physician. in fact, you've dealt with this particular doctor several times, and each time, you've had, well, "less than optimal communication." you take the advice of other doctors and write a letter of complaint. and you give it to the Chief/Chair of Paediatrics (who, serendipitously, is your child's doctor) and the Senior Medical Director of Women's and Children's Services (who, although not your child's doctor, knows him very well, having treated him in various capacities many times). so, they read your letter, and ask you what you're looking for. "whatever you want, you got it."
so, i ask you, gentle readers, what would you ask for? money? would that solve the issues? no. so then, what else? all you really want is never again to deal with that doctor. one of your child's doctors have told you to fight him in the past, and that he needs to be avoided. in fact, at one point, asher's cardiologist said that if he needed to be re-admitted later in the week, he would be admitted under cardio so as to avoid this particular doctor.
well, i talked to "top doc" today, and he asked again what kind of resolution i'm looking for. i said that all i really want is to never deal with that doctor again. well, says top doc, that's not really possible. well, no, if it's as an in-patient, it's do-able. but in emerg, it's impossible. well, unless you bring asher in between 3pm and midnight, because then there's always two doctors there, so that's do-able. but other than that, short of calling in ahead of time, it's impossible.
now, i ask, gentle reader, what does that mean,"short of calling in ahead of time"? what would they do if i called in ahead of time? this is my query this evening. top doc told me to page him on monday when we're in for cardiology and we can discuss this further then, but what will i ask for? what "do-able" resolution am i seeking? as far as i can tell at the moment, there are two solutions:
- never, ever, for the rest of asher's life, deal with that particular doctor again. ever. ever. avoid him like the plague. forever. and ever. and ever.
- get this doctor to take asher, and me, seriously. you know, pay attention to all of his "quirks" and so forth (eg, the correlating risks between asher's reflux and swallowing issues). and listen to me when i say there's something wrong, and no, it's not gas. (you laugh, but i'm serious. it happened.)
so, here's where i need your help. what other solutions are there? my judgment is too clouded, being in the situation. if there are other solutions, and i mean whatever, let's pretend it's a perfect world and they're going to give me whatever i ask for. what do i ask for? you can email me, facebook me, or leave a comment here. but i really am looking for some input here.
i'll be talking with "top doc" again on monday, so i'd like to have some ideas and possible resolutions. thanks! :)
Monday, August 4, 2008
so, yeah, i took asher in to emerg today because he was pale, sweating on the head, puffy around the eyes, vomitting and refluxing, and short of breath even before he got out of bed. none of that is good. a lot of you know by now that these are some of the bigger symptoms of congestive heart failure, as well as some viral infections and who knows what all else.
well, they did the usual bloodwork, which all came back clean. they couldn't get a specific count on his platelets, which ordinarily would be a problem. but they couldn't count them because they all clumped together, which, for those who don't know the finer points of phlebotomy, is exactly what platelets are supposed to do. and while they couldn't get the number, it was in the normal range, so it's all good there. they also did a urine sample (bag this time; poor little guy, it's almost impossible to get a catheter in there anymore, and believe me, they've tried) which came back clean, too, so no infections there, either, thank-you very much, nitrofurantoin. let's see, what else? chest x-ray was fine, and no one came running over to hook him up to anything after his ECG, so i'm assuming that was all fine, too. but...
we saw the cardiologist. not one we know (dr hamilton, from toronto. lovely man. he remembered asher being presented for surgery a couple months ago), but that's ok. anyway, i told him all about the last surgery asher just had in may (can you believe it was that long ago already? yikes! time flies, eh?), and about the lingering complications and impending surgeries on his arch and third stage. he made a comment about asher's size, which i'm choosing to disregard (they often go by the child's size to determine if they're ready for the third stage. they like 12 kg. asher's at 11.5. yeah.). anyway, he went and reviewed asher's echo from the other week, and compared it to the more recent full echos etc from toronto. he said that asher's symptoms today could be caused by any one (or more) of the following:
- re-narrowing of the pulmonary veins. this is possible, since asher "heals too well" and tends to develop a lot of scar tissue. if you remember, they put plastes (patches) in his PVs in may.
- further narrowing of the aortic arch. this is also possible. asher's arch is severely narrowed already, which causes some problems. but now that he's starting to present with a lot of these other symptoms indicates that things in there are changing, especially now that we've eliminated the possibility of lurking infection.
- something about the "muscle wad" (? - that's right, folks, a term i'm not familiar with. but rest assured i'm going to be researching this thoroughly in the next little while. my new mission: exactly how does the heart pump?). this has something to do with the heart muscle expanding to allow blood into the right ventricle, which is working too hard as it is in order to be the de facto left ventricle, pumping the blood throughout the body. (if you've joined us late in the game here, the right ventricle is supposed to pump blood to the lungs, and the left pumps the blood throughout the body. asher doesn't have a left ventricle, which, thanks to a course of surgeries, forces the right to do the left's job. his blood now flows passively into the lungs from the upper body, and directly to the heart from the lower body. so only about 40% of his blood gets oxygenated in his lungs, which is why he's blue.) now, back to the explanation of the problem at hand. because asher's right ventricle is working harder than it is intended to, the muscle may be expanding too much, which weakens it and, by extention, the pump. the doc said it's possible that the ventricle isn't filling up with enough blood.
now, all that being said, he thinks the third is not entirely likely, since asher's ventricular function is good and it doesn't look too much like he has an outflow problem. ie, asher's not irritable or lethargic etc. so, we're disregarding the third option. and he didn't give much time to the pulmonary veins, which doesn't eliminate it as a possibility, but it's not the one he's focussing on for now. he did, however, express some concern about the situation with asher's arch. we know it's a problem, and quite a big one at that, and we know that it will require a surgical repair in the near future. but he said that other than the TEE (trans-esophogeal echo - an echo done by a camera down the throat - don't worry, it's a sedate echo, done in the OR), there doesn't seem to be any decent imaging of the arch. so, he's going to call dr russell if she's available, but he said that he was definitely going to call dr benson today, since he's on call in toronto this week. dr benson is the doc who did asher's cath in april, and he saw for himself how bad the arch actually is. in fact, i still remember how horrified he was when he learned that dr caldarone hadn't fixed the arch during the surgery. anyway, dr hamilton is going to call dr benson and discuss all of this. hopefully i won't hear anything from anyone cardiac until our appointment in london next monday. but you never know...
these two emerg visits in less than two weeks now have me concerned. asher had not been presenting with any issues since his surgery. and now he's starting to show some signs of deteriorating cardiac health once again. i knew these next ones were coming, but i don't know, i guess i convinced myself that they wouldn't be an issue until later, like the fall. or that the timing of the surgeries would be dictated by his weight, and not the urgency of the situation. so now i'm scared. this could all be happening sooner rather than later. and now i remember what "freaxious" feels like again. i'd almost forgotten it, but now it's back. yup, wanna barf. delightful.
anyway, it's now getting late, and i need to go to bed. it's a big day tomorrow. ed's taking the kids for the afternoon, i've got my appointment with the psychiatrist (finally! i made it!), i've got several calls i need to make, and i'm already exhausted. so i'm off to bed now. talk to you later! :)
a couple weeks back i told you about yale, who went in on the 16th for his stage 2 (norwood/glenn). he had a rocky go of it for a while there, but early last week, he realized that complications just aren't as fun as he first thought, and he was tired of CCCU. he was up on 4D by wednesday, and he came home over the weekend! go, yale, go! welcome to Stage 2 - much easier than the first!
this is a HUGE answer to prayer. thanks so much to everyone who sent prayers, good vibes, positive energy, etc his way, and don't forget to say a little "thank-You" now that he's home.
Sunday, August 3, 2008
regarding asher's t-cell function. i said the other day that, although his counts are low, the cells he does have, work, so they're not overly concerned. i think i forgot to mention that, when the fellow discussed asher's case with the division head, he said that asher's t-cell function was "insufficient" and required further testing and clinical follow-up. hence the appointment in october for more bloodwork. this bloodwork will be further testing of asher's t-cell function. this is a long test, done over several days, which is why they couldn't do the test on wednesday. the results would have been available over the weekend, and the techs aren't keen on coming in on the long weekend. so, we have to wait till october.
ok, i think that's it. sorry about the inaccuracy, folks. i usually take such care to ensure that my posts contain the most accurate information i have, and i dropped the ball this time. sorry about that. ah, well. now you know... have a great holiday monday! :)