Monday, August 4, 2008

we were actually greeted by name by the triage nurse today, if you can believe that!

for those of you who saw my facebook status today, we're home. for those who didn't see it, here it is: "Heather is taking asher in to emerg again. he's pale, sweating on his head, vomitting and short of breath. all this at rest in the a/c. i hope i'm paranoid." (btw, if you didn't see my status, it could be because we're not FB friends. add me to your list. i'm very friendly. but i digress...)

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:
  1. 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.
  2. 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.
  3. 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! :)


Annie said...

Many... many HUGS my dear friend. Just a phone call away.

Pam Hedden said...

Just when you think you can relax for a minute . . . lol . . . Asher throws something new into the mix . . .

Admit it . . . your life is never boring . . .

I hope they find out it is whatever will be the easiest to fix.

Just a couple of block away if you need me, you know.