i realized this morning that i forgot a couple details last night.
first of all, asher's weight. last week, asher weighed 15.2 kg (approx 33 lbs). yesterday, he weighed in at 16.9 kg (approx 37 lbs). that's right, in about 10 days, asher gained about 10% of his body weight.
sounds like a growth spurt...
until you remember that his legs were puffy...
and by that i mean, dr b was poking dents in his shins. go ahead, try that on yourself. i'm willing to bet you can't do it.
that's because you don't have edema. puffiness. fluid retention.
caused by congestive heart failure.
i'm really tired of all this. i really am.
Showing posts with label corrections (i hope there aren't many of these). Show all posts
Showing posts with label corrections (i hope there aren't many of these). Show all posts
Saturday, March 26, 2011
Wednesday, March 2, 2011
well, one year later, here we are...
that's right, folks, today is asher's first "fontanniversary." one year ago today, at exactly this time, asher was in the OR at SickKids, with dr c finishing off asher's new circulation.
one year ago today, dr c said, "hopefully this is the last surgery he ever needs."
i'll give you a moment to stop laughing at the irony... {hums a little tune}
k, so here's where things stand as of today:
i just talked to dr w, and asked her my questions about the pacemaker. and she was a freaxiating font of information. seriously, i kind of have the heebie-jeebies right now, actually. {shudder}
so i asked, "how does the battery have 3 years more life in it now than it did in october?" her answer: "pacers usually underestimate the remaining life at first. but as they're in the patient longer, they collect more data, and can make a better estimate of the power it has left. so it is more accurate now than it was then. but you know, i had the same question when i was doing my training." ok, that makes some sense. (and how cool is that? i officially think like a cardiologist! HAHA)
"ok," i asked, "but it's pacing 88% of the time. so it's firing that often, right?" "yes," she said. "so if it's firing that much more often, why is it that his HR is 100 every time we check his pulse?" "well," she said, "when we check his pulse, he's probably nervous or scared or in some pain, which makes his heart rate go up." ok, we'll go with that (for now). not sure i'm entirely on board with that explanation, but i'll go with it at the moment. beats the alternative. {shrug}
then dr w added, "at some point, once he's more stable, we'll adjust the threshold of the pacemaker, lower the settings to maybe 75 or so. that way we can save the battery. but i don't want to do it now when he's like this. but once he's stable, we'll do that. maybe in a few months."
i told her that he now gets pain in his chest every time he's active. he gets a little edgy and flushed and tells me that his heart hurts. every. single. time. she was quite concerned about this. hence the "unstable" comments.
meantime, she wants us to switch his reflux meds from ranitidine to lansoprazole or something else. she thinks that reflux might account for some of the chest pains. and she just might be right... at least to some extent...
but why is he suddenly refluxing so much? he doesn't have that issue anymore, except in certain situations... hmmm... but nothing is showing up on ECG, echo or chest x-ray... but two years ago, nothing showed up on tests, either...
maybe i'm just paranoid. who knows. it's possible. but for now, i'm just hanging out with my littlest man at home. because, oh yeah, he's afraid to go back to school. last time he was there, he was taken to emerg in an ambulance with chest pain. can you say, PTSD??? not that i blame him...
but i made him pinky swear that he'd go to school tomorrow.
but it'll probably just be for half a day. i'd rather ease him back in than just throw him back in full time.
so there you go. the latest goings-on in asherland.
have a great day!!!! :)
one year ago today, dr c said, "hopefully this is the last surgery he ever needs."
i'll give you a moment to stop laughing at the irony... {hums a little tune}
k, so here's where things stand as of today:
i just talked to dr w, and asked her my questions about the pacemaker. and she was a freaxiating font of information. seriously, i kind of have the heebie-jeebies right now, actually. {shudder}
so i asked, "how does the battery have 3 years more life in it now than it did in october?" her answer: "pacers usually underestimate the remaining life at first. but as they're in the patient longer, they collect more data, and can make a better estimate of the power it has left. so it is more accurate now than it was then. but you know, i had the same question when i was doing my training." ok, that makes some sense. (and how cool is that? i officially think like a cardiologist! HAHA)
"ok," i asked, "but it's pacing 88% of the time. so it's firing that often, right?" "yes," she said. "so if it's firing that much more often, why is it that his HR is 100 every time we check his pulse?" "well," she said, "when we check his pulse, he's probably nervous or scared or in some pain, which makes his heart rate go up." ok, we'll go with that (for now). not sure i'm entirely on board with that explanation, but i'll go with it at the moment. beats the alternative. {shrug}
then dr w added, "at some point, once he's more stable, we'll adjust the threshold of the pacemaker, lower the settings to maybe 75 or so. that way we can save the battery. but i don't want to do it now when he's like this. but once he's stable, we'll do that. maybe in a few months."
i told her that he now gets pain in his chest every time he's active. he gets a little edgy and flushed and tells me that his heart hurts. every. single. time. she was quite concerned about this. hence the "unstable" comments.
meantime, she wants us to switch his reflux meds from ranitidine to lansoprazole or something else. she thinks that reflux might account for some of the chest pains. and she just might be right... at least to some extent...
but why is he suddenly refluxing so much? he doesn't have that issue anymore, except in certain situations... hmmm... but nothing is showing up on ECG, echo or chest x-ray... but two years ago, nothing showed up on tests, either...
maybe i'm just paranoid. who knows. it's possible. but for now, i'm just hanging out with my littlest man at home. because, oh yeah, he's afraid to go back to school. last time he was there, he was taken to emerg in an ambulance with chest pain. can you say, PTSD??? not that i blame him...
but i made him pinky swear that he'd go to school tomorrow.
but it'll probably just be for half a day. i'd rather ease him back in than just throw him back in full time.
so there you go. the latest goings-on in asherland.
have a great day!!!! :)
Tuesday, January 25, 2011
so much has happened since the last post... don't worry, some of it's great!
this is what happens when i promise to post more often. God hands me more to post about. haha so here we go:
yesterday morning, i checked my emailfor the eighth time randomly, and there was an email from DC. you'll remember that she is working on a book about my littlest man. she and i have spent many hours talking about asher's journey, and now that that portion of the research is done, she wants to get in touch with some of the doctors and nurses who have "played an integral part in caring for asher (and you)." so she asked me who she should talk to... (sorry, christyne... that should say, "she asked to whom should she speak." teehee)
which docs and nurses should she talk to???? here's the list:
yesterday morning, i checked my email
which docs and nurses should she talk to???? here's the list:
- dr b, our amazing paediatrician (and dear friend)
- dr russell, our toronto cardiologist
- dr j, in london emerg
- dr g, in london emerg
- dr p, who is actually a paeds metabolics specialist, but was the attending in emerg that first morning when asher arrived.
- pepy and buffo. because you can't tell asher's story without talking to them.
- dr b, the toronto cardio who did all of asher's stents, some caths, and has been the attending on the ward for a few HSC admissions
- the first cardio we saw in toronto when asher was 8 days old
- dr f, asher's nephrologist
- dr a, who knows us very well. he got asher the GJ-tube, we've seen him in emerg, he's been the attending on the ward during admissions, he has sedated asher a couple times, i dealt with him in his administrative role... and the list goes on. (those of you in the know are peeing yourselves right now, aren't you??? HAHA)
- sarah m, the nurse who was there when asher first came to london emerg, and whom we saw in emerg several times, and who did her NP training in the cardio clinic, and who is now the enteral feeding NP. yup, lots of dealings with her over the years.
- Jenny and Paula, the single ventricle NPs at sick kids. they had our number memorized and would return my pages with just a "hey heather, what's he doing this time?" and a sigh when i filled them in.
- vicky and elaine, our home care nurses. they were amazing. and i mean, a. ma. zing. asher and i would both be dead if not for them. they were excellent at their job, and truly cared for us. they're both absolutely lovely, and asher's story is not complete without their input.
as i finished up this email to D, i realized that in calling all of them, she would run into a problem: patient confidentiality. which is a good problem, don't get me wrong. i'd hate to think that any random person could call up one of asher's docs and get any and all information they wanted. so hooray for confidentiality!! on the other hand...
it does pose a problem to someone writing a book about my littlest man.
so, i have been chatting with some london docs and sarah the NP to let them know about the project, and that i have no problems with them speaking with D. i also emailed dr f just now, and i spent some time this morning speaking with vicky, as well. i also emailed pepy and buffo last night, and as i type, i am on the phone paging the single vent NP on call (not sure if it's jenny or paula. haha) so that's that issue...
but, in a tangentially related note...
when i popped in to talk to dr welisch yesterday, she asked how asher is doing. "well," i thought, "i'm just waiting for him to get bad enough to bring in, but he does have some symptoms, and she did ask and she is his cardiologist..." so i told her. i told her about the flu the other week, and the paleness and blue spells and puffiness and irritability, and she said,
"well, why don't you bring him in on friday and we'll do a quick check." [insert wave of nausea]
and of course, we book the appointment, asher comes home from school, and...
he's hiccupping.
"so?" i hear you asking.
well! those "in the know" about wonky heart and gastro stuff know that hiccuping can either be nothing... or it can be something. well, not "something" in and of itself, but a symptom of... wait for it...
reflux.
(and angina, but we're not going there right now.)
at first i brushed it off. i mean, sometimes i get the hiccups and i don't have reflux.
but then it happened again a little while after he had snack. so, i decided to just ask him how he's feeling. not lead him or put ideas in his head. just a little, "hey, dude, how are you feeling right now?"... you know... just to see...
and hoping it's nothing.
he said,
and i quote,
"not good, mommy."
[insert wave of nausea]
"what do you mean? where do you feel sick, sweetie?"
"my heart hurts, mommy."
[insert wave of nausea]
ok, so now i'm going to be a little more specific in my questions:
"does your heart feel tight? like it's being squeezed?"
"no, not like dat."
"does it feel hot? like it's burning?"
"yeah. like it's burning."
now, ordinarily, reflux/heartburn is not a big issue. and a lot of heart kids (and adults with heart disease) have reflux.
(ever wonder why, by the way? there's a spot at the top of the stomach, right where the esophagus joins to it, and it's called the cardiac zone. when a heart is failing or distressed or recovering from surgery, the heart muscle becomes enlarged, just like any injured muscle. when the heart becomes enlarged, it bumps up against this spot on the stomach and annoys it. the problem is, this spot is right beside the valve - or more correctly, the sphincter - that allows food etc into the stomach and then closes to keep stomach contents... um... contained... in the... stomach... wow, that's pretty redundant there, isn't it? anyhoo... when the cardiac spot on the stomach is being bothered, the sphincter there has a hard time closing properly, which then allows stomach contents to go shooting back up the esophagus. because stomach juices have a pH level of about 2 - it's a shockingly strong acid!! - and the esophagus is not designed to withstand that sort of assault, the acid burns the esophagus. and this happens in the vicinity of the heart... hence the term, heartburn. and there you have it, folks, Reflux 101.)
and so, ordinarily, i wouldn't be worried about reflux, even in asher. but... when i look at the other symptoms... yeah... i'm not freaking out... i wouldn't even say "worried," per se... but i do think i made this appointment with cardio just in time.
sigh.
and let's see... what else has happened today... ah yes!!
i spoke with the school's principal this morning, regarding the "incident" from friday. she has looked into it, and apparently...
the EA in question...
had no contact with Asher on friday.
other than in the afternoon when he saw her and flipped out. but she didn't deal with him in the morning.
but...
it turns out...
asher doesn't like her, and he's angry with her.
"why?" you ask?
because, you see, she takes him to the bathroom when she has him. and asher... doesn't always want to go to the bathroom.
and when he's irritable like this...
it's best not to mess with him, apparently.
because he'll tell people that you pushed him.
so, there was no incident on friday. but we think we have an idea about where this came from:
you see, when asher needs to pee, even if it's an emergency and his bladder is about to explode, he will take his sweet time getting to the little boys' room. he'll stop to chat with people, play with toys, whatever. but this EA at some point must have put her hand on his back and tried to guide him to the washroom... when he didn't want to go. and so, "of course," in his mind, this is pushing.
and since he's mad at her, he told his own EA and me that he was pushed.
which, of course, leads to an investigation and all kinds of things.
sigh...
so, it would seem that my sweet little cherub... well, i'd say he still has a halo, but maybe it's a little tilted, dented and tarnished. haha-ish
so, asher and i are going to be having a little chat this week. because this behaviour is absolutely NOT OK. and yes, disciplining him is not easy right now... i mean, how do you discipline a kid who'll have a heart attack if he cries too hard?? but i'll figure something out, because this sort of thing cannot. happen. again. it just can't.
so that's what's new in our little corner of the universe today... (hopefully) there won't be anything to report until friday afternoon after cardio. (but you know i'll post if necessary. haha)
Wednesday, November 25, 2009
update
k, i'm sure you're all waiting to hear about the results of the cath. well, i don't have them yet. unfortunately, there was a mix-up, and asher's cath is booked for tomorrow morning at 11, instead of today. ugh.
so i will try to post tomorrow as soon as possible, to fill everyone in on how it went, and what they said, and all that. it may wait till later at night, or possibly till friday morning (we have to stay for 6 to 8 hours afterward, since they'll be using arteries, so we won't even get to leave till evening).
so yeah, i'll post the results as soon as i can. thanks. :)
so i will try to post tomorrow as soon as possible, to fill everyone in on how it went, and what they said, and all that. it may wait till later at night, or possibly till friday morning (we have to stay for 6 to 8 hours afterward, since they'll be using arteries, so we won't even get to leave till evening).
so yeah, i'll post the results as soon as i can. thanks. :)
Sunday, August 23, 2009
ok, so i was wrong about one little detail.
he's getting oxygen right now. he's only on 1 litre, but it is on. they'll likely be able to turn it off once he falls asleep, but for now, it's on. sorry about that.
Saturday, August 22, 2009
plus ca change...... sigh....
ok, so remember the other day when i said that everything was going swimmingly and asher has never been healthier and more stable than he is right now? yeah. forget that. sigh.
as you may or may not know, summer is not asher's friend. he loves the sunshine, and he loves being outside, playing in the sandbox, driving around in his little tykes car, drawing with sidewalk chalk, riding his trike, you know, all that fun - and normal! - 2-year-old stuff. but, alas, summer does not return to love. heat and humidity really take a lot out of him, unfortunately. and since we live where we do, there's a lot of humidity. (as for heat, yeah, where's this global warming we're being told about? i mean, would it be too much to ask to have temps above 23C?!?! i mean, seriously!!! anyhoo...)
due to the heat wave this week, asher wasn't looking so good. very pale and sweaty, not much energy, and so on. and blue spells. yeah. he's been having blue spells all week. but again, summer is not an ideal time for my little man. so he's been looking pretty bad this week. but, the weather wasn't nice, so i didn't think much of it. just brushed it off, knowing this is what happens. (that being said, he slept at his dad's place on monday night, because his apartment is cooler than the upstairs at my place, and since ash was looking pretty rough at dinner in the cool kitchen, i sent him to ed's.) but other than that, i brushed it all of.
and then came a storm on thursday, and that broke the humidity nicely. so friday was GORGEOUS!!! asher spent most of the day outside playing, making wonderful memories (i hope) with his brother and sister in the backyard. but...
he turned blue again a few times. not too badly. i mean, i've seen him worse, and recently, at that. but still, it wasn't hot, it wasn't humid, so really, ash should not have been doing this.
at dinner on friday, he was blue. and i don't mean a pretty shade of baby blue. i mean, his mouth was navy blue, and his hands were blue-grey and COLD!!! so needless to say, i took him to emerg. if it was still hot and humid, i wouldn't have thought much of it, and moved on with my day. but it wasn't. and he was not looking good. still playful, mind you, so i wondered if i was overreacting a bit, but i can't really be too careful with ash when he does this, so i took him in.
and of course, true to form, we got there and he was great. good colour, playful, vitals were great. seriously, he played the whole time we were there.
and the resident came to see him, and i said to him, "yeah, he's looking great, he's got lots of energy, he hasn't had a blue spell the whole time we've been here, so i'm happy to just take him home now." he seemed cool with that, so he went to chat with the attending. who sent in a nurse to check his sats (can't send him home with blue spells without checking the sats). and they were... sit down... 69%!!!!!!!! and since ash usually sits in the low 80s, this was a HUGE problem. we moved the probe around, putting it on his finger, his thumb, and still 69-74%. so we went out into the hall and tried another machine, hoping it would give us a better reading. nope. still low 70s. ugh. so we had him sit down, and put the probe on a toe. and it was still low 70s. after a few minutes of resting, though, it crept back up to the low 80s. but again, that was after some rest. so....
chest x-ray, ecg, and bloodwork (just a cbc this time, so they did a finger poke). everything looked fine, although his haemoglobin was only a bit higher than cardio wanted (they said, "if it's below 130, we'll have to admit him" which means transfusion). (and why do we care about haemoglobin? haemoglobin is the fancy-schmancy name for red blood cells. these carry oxygen to the body. hypoplasts/single ventricles usually have high haemoglobin to compensate for the low oxygen levels. if it gets too low, then there won't be enough oxygen in the blood, which shows up as low sats. transfusion = higher haemoglobin = higher sats. there you go. a quick phlebotomy lesson. feel enlightened? you should. lol) ok, so cardio wanted to see something higher than 130. asher usually sits in the 170s at least. last night, he was at 140. so we got to go home! hooray!!! but wow! that was close, eh?? eep!
well, then this morning, blithe and bram got up at their usual 7:30-ish. which is usually when asher gets up. and he woke up. crying. so he came in and cuddled up with me. and fell right to sleep (with charlie. seriously, he was using the dog as a pillow. too cute!) and he stayed asleep. all morning. i got up around 11 (we didn't get home from emerg last night till after 1, so i was i tiiiiiredddd!!! and i thought ash was feeling the same, so i didn't think much of him sleeping in. though, i'll admit, that boy can run on surprisingly little sleep sometimes, and he never sleeps in. he gets up with the other kids every day, no matter what) and i thought ash would get up at the same time... which he didn't. he just stayed upstairs. so i let him stay, thinking he was playing with one of his toys or something and would be right down. nope. he fell asleep again. which he doesn't do. ever. i went up to check on him after a while, and he was feeling pretty warm, so i grabbed a thermometer and.... 38.1!!! i even checked twice, just to make sure!!! and it was under his arm, which means his "real" temp was almost 40. (for those who don't live in canadian hospitals, let me convert that for you. 38.1C is 100.5F. 40C is 104F. yeah.) so after a quick consult with his homecare nurse, we trekked off to emerg.
they did some bloodwork, and it turns out that his white cells are WAY higher than they were last night, and now his bicarb is low (which means his blood is more acidic than usual. i can't explain this part. i used up all my knowledge of phlebotomy earlier. sorry). so doc decided to admit him for a few days, at least until his blood culture comes back on monday. this way he can get some IV antibiotics to help him fight off whatever it is that bugging him right now. they're assuming it's viral, because they can't find anything. no sign of infection in his ears, throat, tube site or urine.
and earlier, when i got back from getting some clothes etc, he was on oxygen. it seems that while i was gone, his sats dropped down to the low 70s again, and the docs ordered low 80s, so they had to put him on O2 for a while. right now he's about 79 to 83%. once he falls asleep, those numbers should go back up. (hypoplasts/single ventricle kids are the opposite of the rest of us. when we sleep, our oxygen levels go down. when they rest, theirs go up.)
so now we're in his room on D7-400. he's febrile again, a little over 39 degrees under his arm (which means it's a little over 40), so now we're watching for seizures and waiting for the tylenol to kick in. and in the meantime, he's watching treehouse (go, diego, go... thrilling... why does he shout so much?!?!?!?!?!) and i'm blogging and chatting with a friend.
so, yeah. we're here for the weekend. but i'm reachable. i'll be online a lot of the time, and i have my cell phone on (i'll post the number on the sidebar, in case anyone wants to make arrangements to drop off a chai latte for me, hint hint). so, yeah, basically, we're just hanging out here for the weekend. i'll keep the blog updated as i know things (like what it means that his bicarb is low... you know me, i'm determined to figure that out!! LOL), and any results from his culture. we're crossing all our crossables that this isn't sepsis, but i'm maintaining that it's a virus, since he's done this twice before (last november, and again in may), and it was viral. so yeah, we just have to let this run its course, and then we'll be home. i don't think we'll be here long.
i'll keep you updated. i'm on FB, and i'll be keeping my status updated, and i'll update here, as well. so, i guess i'll talk to you later. :)
as you may or may not know, summer is not asher's friend. he loves the sunshine, and he loves being outside, playing in the sandbox, driving around in his little tykes car, drawing with sidewalk chalk, riding his trike, you know, all that fun - and normal! - 2-year-old stuff. but, alas, summer does not return to love. heat and humidity really take a lot out of him, unfortunately. and since we live where we do, there's a lot of humidity. (as for heat, yeah, where's this global warming we're being told about? i mean, would it be too much to ask to have temps above 23C?!?! i mean, seriously!!! anyhoo...)
due to the heat wave this week, asher wasn't looking so good. very pale and sweaty, not much energy, and so on. and blue spells. yeah. he's been having blue spells all week. but again, summer is not an ideal time for my little man. so he's been looking pretty bad this week. but, the weather wasn't nice, so i didn't think much of it. just brushed it off, knowing this is what happens. (that being said, he slept at his dad's place on monday night, because his apartment is cooler than the upstairs at my place, and since ash was looking pretty rough at dinner in the cool kitchen, i sent him to ed's.) but other than that, i brushed it all of.
and then came a storm on thursday, and that broke the humidity nicely. so friday was GORGEOUS!!! asher spent most of the day outside playing, making wonderful memories (i hope) with his brother and sister in the backyard. but...
he turned blue again a few times. not too badly. i mean, i've seen him worse, and recently, at that. but still, it wasn't hot, it wasn't humid, so really, ash should not have been doing this.
at dinner on friday, he was blue. and i don't mean a pretty shade of baby blue. i mean, his mouth was navy blue, and his hands were blue-grey and COLD!!! so needless to say, i took him to emerg. if it was still hot and humid, i wouldn't have thought much of it, and moved on with my day. but it wasn't. and he was not looking good. still playful, mind you, so i wondered if i was overreacting a bit, but i can't really be too careful with ash when he does this, so i took him in.
and of course, true to form, we got there and he was great. good colour, playful, vitals were great. seriously, he played the whole time we were there.
and the resident came to see him, and i said to him, "yeah, he's looking great, he's got lots of energy, he hasn't had a blue spell the whole time we've been here, so i'm happy to just take him home now." he seemed cool with that, so he went to chat with the attending. who sent in a nurse to check his sats (can't send him home with blue spells without checking the sats). and they were... sit down... 69%!!!!!!!! and since ash usually sits in the low 80s, this was a HUGE problem. we moved the probe around, putting it on his finger, his thumb, and still 69-74%. so we went out into the hall and tried another machine, hoping it would give us a better reading. nope. still low 70s. ugh. so we had him sit down, and put the probe on a toe. and it was still low 70s. after a few minutes of resting, though, it crept back up to the low 80s. but again, that was after some rest. so....
chest x-ray, ecg, and bloodwork (just a cbc this time, so they did a finger poke). everything looked fine, although his haemoglobin was only a bit higher than cardio wanted (they said, "if it's below 130, we'll have to admit him" which means transfusion). (and why do we care about haemoglobin? haemoglobin is the fancy-schmancy name for red blood cells. these carry oxygen to the body. hypoplasts/single ventricles usually have high haemoglobin to compensate for the low oxygen levels. if it gets too low, then there won't be enough oxygen in the blood, which shows up as low sats. transfusion = higher haemoglobin = higher sats. there you go. a quick phlebotomy lesson. feel enlightened? you should. lol) ok, so cardio wanted to see something higher than 130. asher usually sits in the 170s at least. last night, he was at 140. so we got to go home! hooray!!! but wow! that was close, eh?? eep!
well, then this morning, blithe and bram got up at their usual 7:30-ish. which is usually when asher gets up. and he woke up. crying. so he came in and cuddled up with me. and fell right to sleep (with charlie. seriously, he was using the dog as a pillow. too cute!) and he stayed asleep. all morning. i got up around 11 (we didn't get home from emerg last night till after 1, so i was i tiiiiiredddd!!! and i thought ash was feeling the same, so i didn't think much of him sleeping in. though, i'll admit, that boy can run on surprisingly little sleep sometimes, and he never sleeps in. he gets up with the other kids every day, no matter what) and i thought ash would get up at the same time... which he didn't. he just stayed upstairs. so i let him stay, thinking he was playing with one of his toys or something and would be right down. nope. he fell asleep again. which he doesn't do. ever. i went up to check on him after a while, and he was feeling pretty warm, so i grabbed a thermometer and.... 38.1!!! i even checked twice, just to make sure!!! and it was under his arm, which means his "real" temp was almost 40. (for those who don't live in canadian hospitals, let me convert that for you. 38.1C is 100.5F. 40C is 104F. yeah.) so after a quick consult with his homecare nurse, we trekked off to emerg.
they did some bloodwork, and it turns out that his white cells are WAY higher than they were last night, and now his bicarb is low (which means his blood is more acidic than usual. i can't explain this part. i used up all my knowledge of phlebotomy earlier. sorry). so doc decided to admit him for a few days, at least until his blood culture comes back on monday. this way he can get some IV antibiotics to help him fight off whatever it is that bugging him right now. they're assuming it's viral, because they can't find anything. no sign of infection in his ears, throat, tube site or urine.
and earlier, when i got back from getting some clothes etc, he was on oxygen. it seems that while i was gone, his sats dropped down to the low 70s again, and the docs ordered low 80s, so they had to put him on O2 for a while. right now he's about 79 to 83%. once he falls asleep, those numbers should go back up. (hypoplasts/single ventricle kids are the opposite of the rest of us. when we sleep, our oxygen levels go down. when they rest, theirs go up.)
so now we're in his room on D7-400. he's febrile again, a little over 39 degrees under his arm (which means it's a little over 40), so now we're watching for seizures and waiting for the tylenol to kick in. and in the meantime, he's watching treehouse (go, diego, go... thrilling... why does he shout so much?!?!?!?!?!) and i'm blogging and chatting with a friend.
so, yeah. we're here for the weekend. but i'm reachable. i'll be online a lot of the time, and i have my cell phone on (i'll post the number on the sidebar, in case anyone wants to make arrangements to drop off a chai latte for me, hint hint). so, yeah, basically, we're just hanging out here for the weekend. i'll keep the blog updated as i know things (like what it means that his bicarb is low... you know me, i'm determined to figure that out!! LOL), and any results from his culture. we're crossing all our crossables that this isn't sepsis, but i'm maintaining that it's a virus, since he's done this twice before (last november, and again in may), and it was viral. so yeah, we just have to let this run its course, and then we'll be home. i don't think we'll be here long.
i'll keep you updated. i'm on FB, and i'll be keeping my status updated, and i'll update here, as well. so, i guess i'll talk to you later. :)
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...
we went to see paeds doc (dr b) today. we had a lovely visit with her. anyway, i got her all caught up on the last couple weeks in Asherland. you know the gist, congestive heart failure, trips to emerg, immunology clinic, upcoming visits to cardio in london and toronto. well...
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......
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......
Sunday, August 3, 2008
maybe i should have read my notes first...
i knew i needed my notes when i was posting on wednesday! arg, i hate it when this happens. i want this blog to be as accurate as possible, and then i go and do something like this. well, here's the correction:
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! :)
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! :)
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