i realized at church today that i had forgotten to update the blog here with some more recent developments. my bad. so here we go...
the other night - thursday, i believe - i was chatting with our amazing paeds dr b. she informed me that she was not overly convinced by london's take on things, and so she called toronto cardio to talk it over with them.
and, it would seem, toronto was very concerned by what they heard.
and, it would seem, toronto wants asher to come to pacemaker clinic in toronto.
because, it would seem, they think there is, in fact, something wrong with asher's pacemaker.
and, it would seem, they are not overly impressed with her idea to lower his pacer setting when he's stable enough. (which, frankly, is fine by me, since she wants to lower it to 75, and asher was having chest pain right around that point, so 80 is quite alright in my books.)
now, i didn't get a chance to call SickKids on friday, so i'll be calling tomorrow, talking it over with them a little further, and setting an appointment date for their pacemaker clinic.
and then i'm going to vomit.
i'm going to be honest here: i want to go with dr w's ideas here. i like the idea of growing pains and more data and asher being worried or stressed somehow when his pulse is checked in clinic.
but... and again, i'm being honest... i'm not entirely convinced. part of me still... doubts, i guess. it's not that i don't trust dr w, because i do. i think she's a great doctor. she cares, she understands that i'm a mom and i'm concerned about my boy. she knows what it's like to be in position. she identifies, understands, cares, listens, explains... everything you could ever want in a cardiologist. except...
ok, i'm going to tell you a little story:
over the last couple weeks, i've been asking asher off and on (mostly when he's becoming flushed and/or grey) how he's feeling. but, in an effort to keep him honest, i'll ask him how he's doing when he looks fine. and once in a while, mostly on a whim (read: when i think of it), i check his pulse.
i did that yesterday, in fact. for no real reason, i sat him on my lap, found his pulse, and counted for a full minute. he was relaxed and calm and happy. no worries. just snuggling quietly with mommy. and his pulse was...
wait for it...
100.
dead on, 100. not 99, not 101. one. hun. dred.
which is, you'll note, exactly his heart rate every time it's checked anymore. every. single. time.
100 bpm.
now, i have some thoughts about this (surprised? haha)... it's really kind of a hunch... but it does involve the pacemaker not working properly. i'm hoping i'm wrong. i really hope i'm wrong.
but the freaxious feeling in the pit of my stomach just won't go away...
i'll keep you posted. and i promise i'll do a better job over the coming days.
meanwhile, please pray for us. please pray for asher, that he will be ok. he's still having chest pain every day. his energy is still up, but the pains come on every time he's active. so please pray for him. also, please pray for me. like i said, i have this knot of freaxia in my gut that just won't go away. pleasse pray for peace for me, that i'll continue to trust God, trust the docs, trust asher... that i'll do the right thing, speak the right words, ask the right questions, that sort of thing. please pray for me. i also haven't been sleeping very well lately, and if we have to drive to toronto, i need to be alert enough to get us there and back safely. (haha) trust me, i'm not a danger behind the wheel, and i actually have enough energy during the day. it's just that i'm not sleeping at night, so please pray that i can get some rest.
now, for something a little lighter...
asher and i went out last night, just the two of us. a little date, if you will. we went to see Gnomeo & Juliet, and he loved it. ok, so did i. i saw it the other week with bram, and i've loved it both times. it just doesn't get old. it's such a cute movie. and this coming from a Shakespeare purist here, but this movie is sooooo cute, it's great! love it!!! seriously, go see. both my boys had a great time. we all highly recommend it. :) in fact, it's asher's "best" movie right now. awesome! :)
Showing posts with label that freaxious feeling in the pit of my stomach just won't go away. Show all posts
Showing posts with label that freaxious feeling in the pit of my stomach just won't go away. Show all posts
Sunday, March 6, 2011
Wednesday, February 23, 2011
technology is great... until there's a glitch. {wave of nausea}
and when the glitch could kill your child... {wave of nausea}
asher's london cardio, dr w, has suspected for a few weeks now that asher's pacemaker isn't quite doing what it's supposed to do. what with the symptoms, like grey spells, it was a possibility.
turns out...
she's probably right.
almost every day for the last few weeks, asher has told me that his heart hurt. sometimes it burned, sometimes it just hurt. and something else always hurt, too, like his throat, jaw...
(ok, a warning: i'm going to try hard to not to vomit while i write the rest of this post. it's just. that. freaxiating.)
yesterday, shortly after noon, i got a call from the school. it was asher's EA (educational assistant). she said that asher told her that his chest was hurting. she also said that he was flushed and several people had remarked that he was puffier than usual. so i asked to talk to him, and i asked him,
"hey, hunny, how are you?"
"not good."
"what's wrong?"
"my heart and my arm hurt."
"your heart and your arm????"
"yes."
"which arm?" (at this point i realized that he can't show me which arm over the phone. and he doesn't know his right from his left. on to plan B...) "show mrs e which arm hurts, and give her the phone, please... {mrs e comes to the phone} which arm did he just show you?"
"his left arm. why?"
"because he's saying it hurts. he needs to be seen. right now."
a couple phone calls and the school called 911 and asher was rushed to emerg.
the vitals en route were as follows:
asher's london cardio, dr w, has suspected for a few weeks now that asher's pacemaker isn't quite doing what it's supposed to do. what with the symptoms, like grey spells, it was a possibility.
turns out...
she's probably right.
almost every day for the last few weeks, asher has told me that his heart hurt. sometimes it burned, sometimes it just hurt. and something else always hurt, too, like his throat, jaw...
(ok, a warning: i'm going to try hard to not to vomit while i write the rest of this post. it's just. that. freaxiating.)
yesterday, shortly after noon, i got a call from the school. it was asher's EA (educational assistant). she said that asher told her that his chest was hurting. she also said that he was flushed and several people had remarked that he was puffier than usual. so i asked to talk to him, and i asked him,
"hey, hunny, how are you?"
"not good."
"what's wrong?"
"my heart and my arm hurt."
"your heart and your arm????"
"yes."
"which arm?" (at this point i realized that he can't show me which arm over the phone. and he doesn't know his right from his left. on to plan B...) "show mrs e which arm hurts, and give her the phone, please... {mrs e comes to the phone} which arm did he just show you?"
"his left arm. why?"
"because he's saying it hurts. he needs to be seen. right now."
a couple phone calls and the school called 911 and asher was rushed to emerg.
the vitals en route were as follows:
- BP was 116/54.
- sats were 94% (down a bit off his norm, but not much. not enough for 02)
- heart rate was 74.
74?!?!?!?!
yes. 74.
his pacemaker is set so that his heart rate doesn't go below 80.
his heart rate went below 80.
and when i saw him, he was scared (he never gets scared, especially when he gets to ride in an ambulance), his forehead was grey, and his cheeks and mouth were the brightest shade of red i have ever seen on him. even with a high fever, asher has never been that flushed.
he still had pain in his chest and arm by the time he got to emerg. this was about 40 minutes after i got the call from the school.
so the doc ordered a chest x-ray, bloodwork and an ECG.
asher and i played a bit, and rested a bit.
after a couple hours, his heart rate was up to about 82. and fyi, his usual anymore is 100. but it's over 80. but you'll note, about 20 bpm slower than usual.
in the end, doc didn't have any concerns. quoth he, "if an adult came in with chest pain like this, i'd continue to investigate and look into things like coronary artery disease. but he's too young for that."
to which i almost snapped replied, "he's also too young for a pacemaker, bloodthinners, diuretics, beta blockers and ACE-inhibitors. what's your point?" but i bit my tongue.
i called our amazing paeds dr b once we were discharged. i told her everything, including the uber low heart rate. so she called cardio. then she called me back, saying that dr w wants to see asher on thursday at 1:00, and she'll check his pacemaker.
now, if you know me, you know that i have been thinking about this non-stop since yesterday. coronary artery disease? pacemaker? symptomatic bradycardia? chest pain????????? wha-?!?!?!
never fear, gentle readers, i have figured this out.
sure, there's a possibility that asher may have coronary artery disease. with asher, anything is possible, especially when you take into account the very heart unhealthy diet he's on in an attempt to pack on some pounds. so i'm not ruling that out. but i wouldn't bet on it, either.
no, my money would be on the pacemaker.
and now you're confused. so i'll explain.
chest pain (aka angina) occurs when the heart muscle does not receive adequate oxygen. now, with CAD, plaque builds up on the walls of the arteries, decreasing the amount of blood that can flow through. decreased blood through the arteries means less blood getting to the heart, which means less oxygen getting to the muscle. which means bad.
with symptomatic bradycardia (aka, heart rate is low and affecting function), the heart is not beating fast enough. this means that less blood is being pumped through the coronary arteries. which means that less oxygen is getting to the heart muscle. which means bad.
and with heart block like asher's, his heart rate doesn't always go up with activity. which means that his body (including his heart) needs more blood and oxygen, but his heart can't send it out. this is what causes things like fainting, grey spells, dizziness, chest pain... oh. and the chest pain... can feel like tightness, a weight on the chest, or... burning... yes, angina and reflux can feel the same... making them easily misdiagnosed as the other...
so here's where things stand right now:
asher is not going to school until this is sorted out and his pacemaker is working and his heart is beating and not... um... attacking. it's too risky.
asher has been instructed to tell someone (me, his dad, my mom... whichever adult he's with at the time) when his heart hurts, and if his jaw, neck, shoulders or back hurt. we need to know right away. because if he starts to have chest pain, he needs to go to emerg. right away.
i am trying not to feel guilty. for weeks now, asher has been telling me that his heart hurts. that he gets dizzy. that his neck, throat and jaw hurt. and i was brushing it all off, thinking it's nothing more than a bit of reflux or tiredness. sure, i've been watching him, playing chicken with him, if you will, but still... he's had these symptoms, and i did nothing. ok, i mentioned the grey spells to cardio. and i told dr b about the reflux (or what i thought was reflux... now i don't know...). so in my head i know that i did the best i could with the information i had at the time... but knowing that what i didn't know could have killed my baby... and could still do him a lot of harm until his pacemaker gets sorted out...
i just want to cry.
instead, i'm breathing. and i'm trusting God. i don't know what is going to happen, and i'm scared out of my mind, but i'm trying to trust God. i don't succeed 100% of the time, i'll admit. but i'm working on it. so i'm working on breathing and keeping busy and just waiting for the appointment tomorrow afternoon.
ps - sheryl, i've been thinking about this off and on for the last 6 months... and i think you might be right. at least some times. times like this, for example. sigh...
Saturday, January 29, 2011
would i have named my son *asher* if i ever thought he'd turn the colour of *ash*?
sigh...
that's right, folks. asher is, as i type this post, sleeping.
and asher is, as i type this post, grey.
he's not distressed or anything. in fact, his cheeks are nice and rosy and pink.
but the rest of his face...
nose, forehead, around his mouth...
grey.
and he has been for about 40 minutes now.
the first couple times i checked on him, i turned the light on in his room, and he didn't move. this time, i turned on the light and moved his arm off his face, and he grumbled and turned onto his back. so he can be roused, so that's a good sign.
but still...
he's grey.
but that's his only symptom.
{calls amazing dr b}
k, so it is now about 20 minutes after i started typing this post. i have (if you were paying attention, haha) called dr b.
some quotes from the conversation:
that being said, i have to pop up to cardio on monday to return the holter. and i'm going to mention to someone that he was grey tonight. of course, dr w won't be in the clinic on monday, so pray/send vibes/cross crossables that dr r will be around, and i can mention it to him.
sigh.
that's right, folks. asher is, as i type this post, sleeping.
and asher is, as i type this post, grey.
he's not distressed or anything. in fact, his cheeks are nice and rosy and pink.
but the rest of his face...
nose, forehead, around his mouth...
grey.
and he has been for about 40 minutes now.
the first couple times i checked on him, i turned the light on in his room, and he didn't move. this time, i turned on the light and moved his arm off his face, and he grumbled and turned onto his back. so he can be roused, so that's a good sign.
but still...
he's grey.
but that's his only symptom.
{calls amazing dr b}
k, so it is now about 20 minutes after i started typing this post. i have (if you were paying attention, haha) called dr b.
some quotes from the conversation:
"your instincts aren't usually wrong, heather." "yes, i know..."
if you're concerned enough to call me, you're concerned enough to take him in.
k, i'm gonna say, wake him up, and if he pinks up, then he's probably ok. if he doesn't pink up when you wake him, you're gonna have to take him in.so, while still on the phone with dr b, i checked on asher again. and he was pink...er. still a bit grey-ish, but not like earlier. so i (probably) won't be taking him in tonight.
that being said, i have to pop up to cardio on monday to return the holter. and i'm going to mention to someone that he was grey tonight. of course, dr w won't be in the clinic on monday, so pray/send vibes/cross crossables that dr r will be around, and i can mention it to him.
sigh.
Thursday, January 27, 2011
for the newer readers, "freaxia" is a horrid combination of fear, dread, anxiety and nausea. blech.
it's 14 hours till asher's cardio appointment.
and we weren't supposed to see them till april.
so, asher's got all these symptoms. now, i'm trying not to say "this is the problem"... even though i'm bracing myself. i mean, i remember paula quizzing me and insisting i learn this list of symptoms before taking asher home after the hybrid. i've been watching for these exact symptoms for over four years now.
and now i'm seeing them again.
i always feel this way before an "unscheduled" cardio appointment. you know the ones... you aren't scheduled for anything, but then the doc says, "why don't you just bring him in... let's get him in this week."
and for those of you who think that's fantastic, that we didn't have to wait...
here's the thing about health care in ontario:
if you can wait, you do. if you can't, you don't.
(and i'm not trying to start a debate about the healthcare system here. i'm just saying, that's the rule they go by.)
but here's what's really getting to me tonight:
what if they find something wrong??
or...
what if they don't find something wrong???
i know something's not right with asher lately. i could guess, but i'm not going to. i refuse to allow myself to do that. i simply refuse. because then my mind goes to all sorts of unhealthy places, and i just don't want to do that right now.
so, i'm trying to decide what's worse. i mean, if they find something wrong, that sucks, but they'll deal with it. and we'll get through it. but still... it means that something is wrong.
but if they don't find something wrong, then... what?
this, gentle readers, is what freaxia is all about.
and so, once again tonight, i am trying to breathe and smile/laugh my way through this. a close heartmom friend and i were chatting tonight and laughing about something, and it was good to distract myself, laugh at myself ("like, seriously?!?!" HAHAHAHA)... it took my mind off things for a while.
so, yeah. breathe. smile. hold it all in the Light. some ice cream doesn't hurt (esp if you've lost another 7 lbs, bringing you down to your lowest healthy weight ever). and smile. breathe. and then smile. and just for good measure, breathe some more.
and carry on.
and we weren't supposed to see them till april.
so, asher's got all these symptoms. now, i'm trying not to say "this is the problem"... even though i'm bracing myself. i mean, i remember paula quizzing me and insisting i learn this list of symptoms before taking asher home after the hybrid. i've been watching for these exact symptoms for over four years now.
and now i'm seeing them again.
i always feel this way before an "unscheduled" cardio appointment. you know the ones... you aren't scheduled for anything, but then the doc says, "why don't you just bring him in... let's get him in this week."
and for those of you who think that's fantastic, that we didn't have to wait...
here's the thing about health care in ontario:
if you can wait, you do. if you can't, you don't.
(and i'm not trying to start a debate about the healthcare system here. i'm just saying, that's the rule they go by.)
but here's what's really getting to me tonight:
what if they find something wrong??
or...
what if they don't find something wrong???
i know something's not right with asher lately. i could guess, but i'm not going to. i refuse to allow myself to do that. i simply refuse. because then my mind goes to all sorts of unhealthy places, and i just don't want to do that right now.
so, i'm trying to decide what's worse. i mean, if they find something wrong, that sucks, but they'll deal with it. and we'll get through it. but still... it means that something is wrong.
but if they don't find something wrong, then... what?
this, gentle readers, is what freaxia is all about.
and so, once again tonight, i am trying to breathe and smile/laugh my way through this. a close heartmom friend and i were chatting tonight and laughing about something, and it was good to distract myself, laugh at myself ("like, seriously?!?!" HAHAHAHA)... it took my mind off things for a while.
so, yeah. breathe. smile. hold it all in the Light. some ice cream doesn't hurt (esp if you've lost another 7 lbs, bringing you down to your lowest healthy weight ever). and smile. breathe. and then smile. and just for good measure, breathe some more.
and carry on.
Tuesday, January 25, 2011
well, today *could* have really, really sucked...
yeah, today could have been better on some levels... but it's nothing a smile and a giant bag of salt & vinegar chips can't fix...
tonight, i filled asher's dad (aka, ed) in on what the principal (mrs h) had told me this morning. at first he laughed (because yes, it is kinda funny...), but when i reminded him that asher accused someone of abusing him because he's mad at her and doesn't like her... he stopped laughing, and said he'd talk to him tonight. (i was working, so he had the kids this evening.)
and i spoke with asher at bedtime...
i had told ed that the whole thing was a "secret" because asher didn't want to hurt anyone's feelings. so he and i each told asher that mrs j (the EA in question) had been sobbing in mrs h's office when she found out what he'd said.
when asher heard this, he became very sad.
so ed took the kids out tonight to pick up a gift for asher to give mrs j's baby (friday is the last day before her mat leave).
and when asher said his prayers tonight, he prayed, "dear God, thank-You for this lovely with me, mrs e, mrs b, mrs g (his EA, ECE and teacher), and please help me to cheer up mrs j."
tomorrow morning, i'm taking asher in to school, and he's going to apologize to mrs j for saying all this about her.
and we both told him that if he ever pulls this crap again, he's going to be in a ton of s*** trouble. (neither of us used those crossed out words... well, i know i tried not to. and i doubt ed did, either... but i know i was definitely thinking them. haha)
and let's see, what else happened today...
well... my rear tire blew on my way to work. literally, 15 feet from the parking lot. nice.
and then, in the middle of trying to give a customer her parcel, my system shut down. there was a message on the screen about a system error... and it just... shut down. and of course this is when everyone in st thomas decides to pick up their parcels. haha. well, it actually wasn't funny at the time. my system was down for at least 15 minutes. i still don't know what happened... but it would reboot, then shut down. then reboot. then shut down. i'm not kidding... this happened four times. and the line-up getting longer and longer.
sigh...
ok, yes, there was more that happened today, but i won't go into details... because my point, gentle readers, is this:
sure, you can't control what happens sometimes. you just can't.
but
you can control how you respond to it.
i'll admit, at one point this evening, i just wanted to cry when i thought about asher and the EA, and my truck, and a couple other things. and then...
a customer arrived, so i smiled and helped them out...
and suddenly, i didn't want to cry anymore.
yes, i was still thinking about everything that happened today. and yes, it's a lot of stress smooshed into one day. but...
i spent this evening reminding myself to breathe (i have a tendency to hold my breath when i'm stressed). and i smiled at my customers and joked with a few of them... and told my boss that i'll take any extra shifts she'd need me for over the next little while (thereby tackling two of the stressors at the same time)...
and i remembered that i can't fix my tire when i'm working. and ed can talk to asher, and i'll take the littlest man to apologize to the EA tomorrow. and the computer (eventually) righted itself, and since ed and the kids would have to give me a ride after work, i'd get to see the kidley-winks tonight, and i don't have to pay for prescriptions so dr w can prescribe anything she wants on friday and i won't panic about the cost...
and i remembered to breathe...
and hold each situation in the Light...
no specific prayers. just holding them up. because i don't know how they should be resolved. i just want God to do whatever He's going to do, but keep us all alive in the meantime...
and you know... i got through tonight. and i'll get through tomorrow. and the next day. and the next.
it really is amazing what you can get through if you just breathe and have a little faith...
Saturday, January 22, 2011
k, it's been a while...
yes, yes, it's been a while, and i haven't posted a "real" asher update. so here we go.
a couple of weeks ago, asher was looking "off." he was pale, short of breath, sleeping more than normal... just not his usual self. so i took him to see our wonderful paeds, who checked him out, and...
his sats were 92%!!!!
this time last year, i would have been thrilled (and a little concerned) to see sats like that. but now?? post-fontan? now that all his blood goes to his lungs? um...
not so much.
his heart rate was also over 100. much higher than his norm, since he usually rides his pacemaker and his HR is 80 to 85. so that was concerning.
when she listened to his chest, she thought it sounded pretty nasty. so she sent us down for a chest x-ray, and when we got back up to see her, she had looked at it and she said it looked "yucky." yes, that's a technical medical term which means "not good." by this time, his sats were back up to a nice 96%, so that was better, and she offered to admit him, and it was tempting, but we decided that he would go home and come back to see her the next morning. she also ordered a nasal swab, just to check for viruses etc, and prescribed a dose of Tamiflu for the day, just in case it was the flu.
the next day, she gave the bad news that his swab was indeed positive for the flu, so it was tamiflu for the next 6 days.
he recovered nicely.
and i discovered something interesting: apparently, since i work at shoppers...
I DON'T HAVE TO PAY FOR PRESCRIPTIONS!!!!!!!!!
how awesome is that?!?! especially when you have one child who needs a week of tamiflu (at roughly $5 per pill), and i needed antibiotics and steroids to treat a bad case of strep (yes, my throat closed twice), and bram needed a new ventalin inhaler, some antibiotics and steroids to treat a super-bad asthma attack (an ambulance ride, chest x-ray, lots of steroids, sats at 88-93%, blue lips/eyes/nose/nails, and a ride in a wheelchair - the highlight of the evening for him, especially when he found out that asher has never ridden in a wheelchair!). yup, it's been a medically-eventful month around here, and would have been rather expensive, too, if i didn't work where i do. :)
but back to asher...
since he had the flu the other week, he... um... yeah... hasn't been great.
in fact, i'm kind of playing chicken with him right now...
for the last couple of weeks, he has been very pale, there's been the odd blue spell (as in... ahem... once a day...), and he's puffy, and well, a little irritable. it's not super bad right now, not quite at the point where i would take him in to be seen... but... i hate to admit this, but... yeah... he's getting there.
it's not the symptoms that are bothering me (entirely). it's the fact that they've continued for so long, without getting better. so expect an update at some point this week about a trip to emerg or clinic.
and there's another thing...
i got a call from the school yesterday, and apparently, there was an incident with one of the EA's (educational assistants). asher has his own EA who is with him all day, but there is another EA who covers her breaks twice a day. and yesterday afternoon, when she came to cover mrs e's break, asher got very upset and refused to go with her. he wanted nothing to do with her. so after some questioning, it turns out that something happened with her in the morning.
i won't go into all the details, but suffice it to say... that EA won't be dealing with asher anymore.
the whole thing was probably nothing, and she didn't intend to do anything. and with asher's increased irritability, it may be exaggerated in his mind. but the fact remains that it was an issue to asher, and it was enough that he got very upset when he saw her.
i discussed all this with the principal, and she will discuss asher's most recent cardiac status with all the EAs on monday and she will speak privately with the EA in question and find out her side. but mrs h (the principal) will make sure she understands that someone else will be covering mrs e's breaks from now on.
the principal also offered to report it to CAS, but i turned that down... initially. but when i questioned asher about the incident when he got home... he said "it's a secret" and initially refused to talk to me about it. frankly, that concerns me, and i'm now thinking of taking her up on her offer to report it. i don't want to put asher through any more, but seriously??? this is a medically fragile child with decreased cardiac stability, and someone who should have known better did something she shouldn't have. and whether it was intentional or not, i don't care. it shouldn't have happened. at all.
so that's the most recent goings-on in asherland. not a super-exciting post, but i thought i should get you all caught up.
i'll try not to go so long between updates from now on.
but since the universe doesn't revolve around asher and the rest of us here...
i'd like to ask you to pray for asher's friend brigid and her mom allison. brigid is in the hospital right now with sepsis, and on top of the usual sepsis issues, she is also struggling with some complications from the treatment. these complications are terrifying, and allison is very shaken by them. i won't go into the details, but it's scary. please please please pray/light a candle/cross your crossables/send good vibes for brigid and allison. they really need them right now. thank-you. and allison and brigid, i'm holding you in the Light, and i love you both very, very much.
a couple of weeks ago, asher was looking "off." he was pale, short of breath, sleeping more than normal... just not his usual self. so i took him to see our wonderful paeds, who checked him out, and...
his sats were 92%!!!!
this time last year, i would have been thrilled (and a little concerned) to see sats like that. but now?? post-fontan? now that all his blood goes to his lungs? um...
not so much.
his heart rate was also over 100. much higher than his norm, since he usually rides his pacemaker and his HR is 80 to 85. so that was concerning.
when she listened to his chest, she thought it sounded pretty nasty. so she sent us down for a chest x-ray, and when we got back up to see her, she had looked at it and she said it looked "yucky." yes, that's a technical medical term which means "not good." by this time, his sats were back up to a nice 96%, so that was better, and she offered to admit him, and it was tempting, but we decided that he would go home and come back to see her the next morning. she also ordered a nasal swab, just to check for viruses etc, and prescribed a dose of Tamiflu for the day, just in case it was the flu.
the next day, she gave the bad news that his swab was indeed positive for the flu, so it was tamiflu for the next 6 days.
he recovered nicely.
and i discovered something interesting: apparently, since i work at shoppers...
I DON'T HAVE TO PAY FOR PRESCRIPTIONS!!!!!!!!!
how awesome is that?!?! especially when you have one child who needs a week of tamiflu (at roughly $5 per pill), and i needed antibiotics and steroids to treat a bad case of strep (yes, my throat closed twice), and bram needed a new ventalin inhaler, some antibiotics and steroids to treat a super-bad asthma attack (an ambulance ride, chest x-ray, lots of steroids, sats at 88-93%, blue lips/eyes/nose/nails, and a ride in a wheelchair - the highlight of the evening for him, especially when he found out that asher has never ridden in a wheelchair!). yup, it's been a medically-eventful month around here, and would have been rather expensive, too, if i didn't work where i do. :)
but back to asher...
since he had the flu the other week, he... um... yeah... hasn't been great.
in fact, i'm kind of playing chicken with him right now...
for the last couple of weeks, he has been very pale, there's been the odd blue spell (as in... ahem... once a day...
it's not the symptoms that are bothering me (entirely). it's the fact that they've continued for so long, without getting better. so expect an update at some point this week about a trip to emerg or clinic.
and there's another thing...
i got a call from the school yesterday, and apparently, there was an incident with one of the EA's (educational assistants). asher has his own EA who is with him all day, but there is another EA who covers her breaks twice a day. and yesterday afternoon, when she came to cover mrs e's break, asher got very upset and refused to go with her. he wanted nothing to do with her. so after some questioning, it turns out that something happened with her in the morning.
i won't go into all the details, but suffice it to say... that EA won't be dealing with asher anymore.
the whole thing was probably nothing, and she didn't intend to do anything. and with asher's increased irritability, it may be exaggerated in his mind. but the fact remains that it was an issue to asher, and it was enough that he got very upset when he saw her.
i discussed all this with the principal, and she will discuss asher's most recent cardiac status with all the EAs on monday and she will speak privately with the EA in question and find out her side. but mrs h (the principal) will make sure she understands that someone else will be covering mrs e's breaks from now on.
the principal also offered to report it to CAS, but i turned that down... initially. but when i questioned asher about the incident when he got home... he said "it's a secret" and initially refused to talk to me about it. frankly, that concerns me, and i'm now thinking of taking her up on her offer to report it. i don't want to put asher through any more, but seriously??? this is a medically fragile child with decreased cardiac stability, and someone who should have known better did something she shouldn't have. and whether it was intentional or not, i don't care. it shouldn't have happened. at all.
so that's the most recent goings-on in asherland. not a super-exciting post, but i thought i should get you all caught up.
i'll try not to go so long between updates from now on.
but since the universe doesn't revolve around asher and the rest of us here...
i'd like to ask you to pray for asher's friend brigid and her mom allison. brigid is in the hospital right now with sepsis, and on top of the usual sepsis issues, she is also struggling with some complications from the treatment. these complications are terrifying, and allison is very shaken by them. i won't go into the details, but it's scary. please please please pray/light a candle/cross your crossables/send good vibes for brigid and allison. they really need them right now. thank-you. and allison and brigid, i'm holding you in the Light, and i love you both very, very much.
Wednesday, September 22, 2010
i think some EEG leads would be helpful to have around the house [wink]
so, asher went for an EEG this afternoon. it was interesting.
i picked asher up from school. he'd had a great morning! he went to the gym with another little boy and they played with frizbees, and asher LOVED that! he was talking all afternoon, "i hab da red fizbee, mommy. also, da udder liddle boy hab a pink one. and we frew dem around. it was fun, mommy!" i have to say, i'm glad asher is still getting some phys ed-type activity. as much as he loves computers, i'd hate to think that they would simply replace phys ed with a desktop. so he got to run around and play in the gym with another child, and that was awesome. he also made a nice little craft this morning with yellow cardstock (that's my boy!) and some scissors (fine motor skills extraordinaire!) and glued the pieces together to make an "airplane" for himself and a "car" for me. as you might expect from a 3 yo, they looked nothing like an airplane or a car, but he was excited about his craft. he's doing so well in school, it's just wonderful to see how much he's maturing and growing up after even a couple weeks in school. honestly, it makes my heart go up. waaaaaay up!
and then we went to the hospital for the EEG. as he was sitting in his seat behind me in the truck, i checked in the mirror and he was staring out the window. so i reached back to tickle his leg (just ignore the bad driving habits and keep moving along in the story, people, there's nothing to see here). and his response? he stared out the window. so i tickled him again. still staring. so i called his name. still staring. after several more seconds, he started playing with his pacer protector.
and that, dear reader, is how one describes an absence seizure, aka "petit mal" seizure.
now, i have to be honest here. i'm having trouble with this diagnosis. maybe it's that it's still so new, maybe it's that i don't know enough, maybe it's how powerless i feel when he has these seizures. and he's having so many. i've been noticing at least 2-3 a day now. and then that makes me wonder... how long has this actually been going on? i never really paid attention to it before, because i never knew to watch for it. but now that i recognize it, it happens so often... and there's nothing i can do about. i just have to roll with it, document it, watch for things like eye twitching, make sure he doesn't drown in the tub, but other than that, there's nothing i can do. i'll get past this, i know i will. i had the same fears in the early days, when asher was newly-diagnosed with HLHS. but i adapted and learned and i no longer feel helpless and guilty and powerless and afraid when it comes to asher's heart. but this is his brain, we're talking about. i guess i've always figured that the heart and brain are the two organs you want healthy, for some reason. not that the others aren't important, too, but i think i've always taken comfort in knowing, sure, his heart's pretty wonky, but hey, at least his brain is ok.
and now, his brain is not ok.
again, i will get past this. i know it's not his major health issue, so i take some comfort in that. meanwhile, please pray for me a bit that i can get past this.
ok, so on to the EEG. we arrived at the hospital and and asher handed the clerk his cards and we were registered. asher was pretty disappointed that they didn't have stickers to put on his hospital card. (he likes to collect stickers on there, and he only has one right now. his old card, which one clinic kept, had about seven!) and off we traipsed to the lab.
they took us straight in, and asher was delighted to see all the nemo and fish stickers on the wall. his faves were Dory and the dolphins jumping out of the "water." while the lady put all the leads (23 of them!!) on his head, he was quite the little chatterbox. it was so cute! he told her all about school, blivey and brammy, and smokey and the kittens. the tech asked me at one point, "is he always this well behaved?" "he's used to tests," i answered. and then the test started.
now, for those of you who have never experienced an EEG, you have to be very still and quiet. for the whole test. which should take about 40 minutes. and knowing asher and his energy levels, i was afraid we'd be there for hours. well, guess what!! the test took about 40 minutes!! he had to lie still, which he did, for the most part. we only had to tell him three times to stop moving and close his eyes, which surprised me... and didn't surprise me (see "he's used to tests" comment above). but his favourite part of the whole test was the strobe light. he was almost laughing out loud during that part! but he didn't, and it went well.
so now we just wait for the results. and a note about the results: if it's positive, it's positive, and they will know what's going on in that little brain of his. if, however, the results are negative... yeah, that means nothing. haha apparently, there's a 50% chance of a false negative with an EEG. the neuro told me about a patient of his with severe epilepsy, and it took eight (count 'em!) EEGs for anything to show up, even though they knew she was having seizures frequently. gosh, isn't that reassuring. haha know what's nice? tests with actual answers. i like those. they please me, on some weird level i don't fully understand. ok, i lie. i know exactly why i like answers. ready? here's why: because they're answers. and then we know what we're dealing with, and i can read up and watch for symptoms or whatever, and we can do something. ok, mostly it's because i get to learn new stuff. i like that. it's just so interesting!! sure, it's a bit horrifying and nauseating, but it's interesting, too. (which really just confirms what i've been saying about myself all along: i'm a nerd.)
so now, given how calm and quiet asher was during the test... do you think they'd give me some EEG leads - just the leads, not the whole, um, test-doing-contraption-thingy (where's a dictionary/thesaurus when i need one?!) - to have at home? you know, for when asher's all wound up and running around like the tasmanian devil/energizer bunny that he is... it might buy me 40 minutes of quiet... sigh... a mom can dream, right?
i picked asher up from school. he'd had a great morning! he went to the gym with another little boy and they played with frizbees, and asher LOVED that! he was talking all afternoon, "i hab da red fizbee, mommy. also, da udder liddle boy hab a pink one. and we frew dem around. it was fun, mommy!" i have to say, i'm glad asher is still getting some phys ed-type activity. as much as he loves computers, i'd hate to think that they would simply replace phys ed with a desktop. so he got to run around and play in the gym with another child, and that was awesome. he also made a nice little craft this morning with yellow cardstock (that's my boy!) and some scissors (fine motor skills extraordinaire!) and glued the pieces together to make an "airplane" for himself and a "car" for me. as you might expect from a 3 yo, they looked nothing like an airplane or a car, but he was excited about his craft. he's doing so well in school, it's just wonderful to see how much he's maturing and growing up after even a couple weeks in school. honestly, it makes my heart go up. waaaaaay up!
and then we went to the hospital for the EEG. as he was sitting in his seat behind me in the truck, i checked in the mirror and he was staring out the window. so i reached back to tickle his leg (just ignore the bad driving habits and keep moving along in the story, people, there's nothing to see here). and his response? he stared out the window. so i tickled him again. still staring. so i called his name. still staring. after several more seconds, he started playing with his pacer protector.
and that, dear reader, is how one describes an absence seizure, aka "petit mal" seizure.
now, i have to be honest here. i'm having trouble with this diagnosis. maybe it's that it's still so new, maybe it's that i don't know enough, maybe it's how powerless i feel when he has these seizures. and he's having so many. i've been noticing at least 2-3 a day now. and then that makes me wonder... how long has this actually been going on? i never really paid attention to it before, because i never knew to watch for it. but now that i recognize it, it happens so often... and there's nothing i can do about. i just have to roll with it, document it, watch for things like eye twitching, make sure he doesn't drown in the tub, but other than that, there's nothing i can do. i'll get past this, i know i will. i had the same fears in the early days, when asher was newly-diagnosed with HLHS. but i adapted and learned and i no longer feel helpless and guilty and powerless and afraid when it comes to asher's heart. but this is his brain, we're talking about. i guess i've always figured that the heart and brain are the two organs you want healthy, for some reason. not that the others aren't important, too, but i think i've always taken comfort in knowing, sure, his heart's pretty wonky, but hey, at least his brain is ok.
and now, his brain is not ok.
again, i will get past this. i know it's not his major health issue, so i take some comfort in that. meanwhile, please pray for me a bit that i can get past this.
ok, so on to the EEG. we arrived at the hospital and and asher handed the clerk his cards and we were registered. asher was pretty disappointed that they didn't have stickers to put on his hospital card. (he likes to collect stickers on there, and he only has one right now. his old card, which one clinic kept, had about seven!) and off we traipsed to the lab.
they took us straight in, and asher was delighted to see all the nemo and fish stickers on the wall. his faves were Dory and the dolphins jumping out of the "water." while the lady put all the leads (23 of them!!) on his head, he was quite the little chatterbox. it was so cute! he told her all about school, blivey and brammy, and smokey and the kittens. the tech asked me at one point, "is he always this well behaved?" "he's used to tests," i answered. and then the test started.
now, for those of you who have never experienced an EEG, you have to be very still and quiet. for the whole test. which should take about 40 minutes. and knowing asher and his energy levels, i was afraid we'd be there for hours. well, guess what!! the test took about 40 minutes!! he had to lie still, which he did, for the most part. we only had to tell him three times to stop moving and close his eyes, which surprised me... and didn't surprise me (see "he's used to tests" comment above). but his favourite part of the whole test was the strobe light. he was almost laughing out loud during that part! but he didn't, and it went well.
so now we just wait for the results. and a note about the results: if it's positive, it's positive, and they will know what's going on in that little brain of his. if, however, the results are negative... yeah, that means nothing. haha apparently, there's a 50% chance of a false negative with an EEG. the neuro told me about a patient of his with severe epilepsy, and it took eight (count 'em!) EEGs for anything to show up, even though they knew she was having seizures frequently. gosh, isn't that reassuring. haha know what's nice? tests with actual answers. i like those. they please me, on some weird level i don't fully understand. ok, i lie. i know exactly why i like answers. ready? here's why: because they're answers. and then we know what we're dealing with, and i can read up and watch for symptoms or whatever, and we can do something. ok, mostly it's because i get to learn new stuff. i like that. it's just so interesting!! sure, it's a bit horrifying and nauseating, but it's interesting, too. (which really just confirms what i've been saying about myself all along: i'm a nerd.)
so now, given how calm and quiet asher was during the test... do you think they'd give me some EEG leads - just the leads, not the whole, um, test-doing-contraption-thingy (where's a dictionary/thesaurus when i need one?!) - to have at home? you know, for when asher's all wound up and running around like the tasmanian devil/energizer bunny that he is... it might buy me 40 minutes of quiet... sigh... a mom can dream, right?
Friday, August 6, 2010
the "emergency" cardio appointment
we just got back from cardiology, so i thought i'd post about how it went. i'll start with the good news.
his sats were 98%!!!!!!!!!!!!!!!!!!!!!!!!!! i just can't get used to numbers like that! we spent so long in the 60s to low 80s, and now that he's (usually) in the high 90s, i still haven't really adjusted. it still just makes me happy.
and that's the good news.
ok, now on to the rest of the appointment.
his blood pressure was... um... interesting. 110/82 in his left leg, and 90/63 in his right arm. the gradient (difference) is better than it was last week, but it's still pretty big.
then we went to see dr w to check the pacemaker. the chest x-rays last week showed nothing wrong with the leads, which means that electricity is getting from the generator to the heart without interruption, so that's good. and when dr w investigated the generator today, she found... nothing.
there's nothing wrong with the generator. at least, nothing that showed up, anyway. so they put a holter on asher, and he'll wear that until tomorrow afternoon. we'll take it in on monday, and dr w will review the results as soon as she can (it can take a couple days to get the information out of the holter). i mentioned to her that i had a couple other ideas about the cause of the problem. when i told her about the arch, she said that once she gets the holter report, if it's negative, they'll keep looking. she asked when we're scheduled for another echo, and when i said october, she said that she'll get us in sooner to have a look specifically at the arch.
i've gotta say, i'm now exhausted. i may just end up taking the kids out for supper tonight, just so i don't have to cook, because i don't think i should be around anything sharp or hot right now. haha and i just want to cry. i was actually hoping she would have found a huge problem with the pacemaker. at least then it's something simple, and even more importantly, it's an answer. alas, not in asherland. so we wait.
so here is my prayer request for tonight: please pray that asher blacks out. it doesn't have to happen tonight. anytime between now and 3:00 EST tomorrow afternoon. that way it will show up on the holter. and if you feel weird praying for something bad to happen to the wee lad, pray for dizzy spells... and that he tells me when he's dizzy. i know it sounds strange praying for weird symptoms, but this way they'll be recorded and the docs can see what his heart is actually doing when he has them. thanks so much.
psalm 27:14
his sats were 98%!!!!!!!!!!!!!!!!!!!!!!!!!! i just can't get used to numbers like that! we spent so long in the 60s to low 80s, and now that he's (usually) in the high 90s, i still haven't really adjusted. it still just makes me happy.
and that's the good news.
ok, now on to the rest of the appointment.
his blood pressure was... um... interesting. 110/82 in his left leg, and 90/63 in his right arm. the gradient (difference) is better than it was last week, but it's still pretty big.
then we went to see dr w to check the pacemaker. the chest x-rays last week showed nothing wrong with the leads, which means that electricity is getting from the generator to the heart without interruption, so that's good. and when dr w investigated the generator today, she found... nothing.
there's nothing wrong with the generator. at least, nothing that showed up, anyway. so they put a holter on asher, and he'll wear that until tomorrow afternoon. we'll take it in on monday, and dr w will review the results as soon as she can (it can take a couple days to get the information out of the holter). i mentioned to her that i had a couple other ideas about the cause of the problem. when i told her about the arch, she said that once she gets the holter report, if it's negative, they'll keep looking. she asked when we're scheduled for another echo, and when i said october, she said that she'll get us in sooner to have a look specifically at the arch.
i've gotta say, i'm now exhausted. i may just end up taking the kids out for supper tonight, just so i don't have to cook, because i don't think i should be around anything sharp or hot right now. haha and i just want to cry. i was actually hoping she would have found a huge problem with the pacemaker. at least then it's something simple, and even more importantly, it's an answer. alas, not in asherland. so we wait.
so here is my prayer request for tonight: please pray that asher blacks out. it doesn't have to happen tonight. anytime between now and 3:00 EST tomorrow afternoon. that way it will show up on the holter. and if you feel weird praying for something bad to happen to the wee lad, pray for dizzy spells... and that he tells me when he's dizzy. i know it sounds strange praying for weird symptoms, but this way they'll be recorded and the docs can see what his heart is actually doing when he has them. thanks so much.
psalm 27:14
no, i hadn't forgotten about you... i just *really* don't want to post about this...
yes, i know, it's been over a week since i last posted here. and i know a lot of you are going to be thinking, "wow, things must be going great in asherland!" sadly... not so much.
after the marathon day in paeds, emerg and cardio last week, things went from bad to worse. and i mean, w.o.r.s.e. asher told me on saturday, "mommy, i dizzy again."
note the word "again." isn't that fantastic.
when i asked him about that, he said that he'd been dizzy at the hospital. which meant, that all day thursday, he was dizzy and just not telling me about it.
and he was dizzy again on saturday.
i had been suspecting since friday that he might be dizzy, since he was stumbling like he was drunk while running around. nothing major. just semi-losing his balance.
then, on saturday morning, he fell down in the driveway.
and hit his head on the ground.
so when i say he "fell down," i don't just mean that he tripped and scraped his knee. no, that would be normal, right? oh, God, why oh WHY can't he just trip and scrape his knee?!?! just once! that's all i ask. just a scraped knee. put a little band-aid on it and he's good to go. nope, not my kid. a scraped knee would be too simple.
he was running around, laughing and playing with blithe and bram and then all of a sudden, BOOM! he's dropping to the ground without a word. and when i picked him up, he told me he was dizzy when he fell.
the same thing happened later in the day at a store. he was running around (i was trying to corral the kids, but i was distracted and they were having fun so they were having none of it), and BOOM! down he went, hitting his head on the counter.
of course, i dropped down to his level, got him to sit up, and i asked him, "asher, were you dizzy before you fell just now?" "yes, i dizzy." and i got a little nauseous.
"asher, did your head feel funny before you fell down?" "yeah, like dare cotton balls in my ears." and i got a lot nauseous.
"asher, did everything go black right before you fell?" he answered quietly and avoiding my gaze, "yeah."
"asher, when you fell down this morning, did everything go black?" "yeah."
does anyone else want to vomit right about now????
so our paeds, the fabulous dr b, sent us to emerg in london, and let them know we were on our way. we were there for three hours, while they monitored him, did a chest xray and an ECG. they wanted to see if he would do it again. of course, he didn't, because when he fainted during the day, he'd been running around and playing, and he wasn't doing that in emerg, just sitting on his bed.
needless to say, they didn't find anything, so they sent us home.
cut to this week. dr b has called our toronto cardiologist, dr russell and told her about the fainting spells and dizziness. "oh, dear, he shouldn't be doing that," was her response.
so that's where we're heading this afternoon. you'll note, half-way through what was supposed to be a little mini-vacation for the kidley-winks and me.
in the meantime, i've been doing some reading and thinking (you're not actually surprised by that, are you?) and i have three ideas about what could be causing these symptoms:
so today, we're cutting short our mini-vacation to return to london cardiology for a pacemaker check and a holter (a 24-hour ECG). not exactly my idea of a great way to spend a friday afternoon, but we gotta do what we gotta do.
so, yeah. asher has some pretty major symptoms right now, and they're not good. but we're working on it, and we'll get it figured out quickly, and then they will be dealt with quickly. because a fontan with a pacemaker simply should not be fainting. it just. shouldn't. happen. so this is very scary, and i don't mind admitting that i'm feeling pretty freaxious lately. so please hold us in the Light. and please pray that the docs figure out what the problem is.
funny little God-moment this morning, though. as i was reading my Bible, i came across a verse and, well, let's just say that i've claimed it as my own for now, and it's helping (or at least, inspiring me to not skip cardio this afternoon).
after the marathon day in paeds, emerg and cardio last week, things went from bad to worse. and i mean, w.o.r.s.e. asher told me on saturday, "mommy, i dizzy again."
note the word "again." isn't that fantastic.
when i asked him about that, he said that he'd been dizzy at the hospital. which meant, that all day thursday, he was dizzy and just not telling me about it.
and he was dizzy again on saturday.
i had been suspecting since friday that he might be dizzy, since he was stumbling like he was drunk while running around. nothing major. just semi-losing his balance.
then, on saturday morning, he fell down in the driveway.
and hit his head on the ground.
so when i say he "fell down," i don't just mean that he tripped and scraped his knee. no, that would be normal, right? oh, God, why oh WHY can't he just trip and scrape his knee?!?! just once! that's all i ask. just a scraped knee. put a little band-aid on it and he's good to go. nope, not my kid. a scraped knee would be too simple.
he was running around, laughing and playing with blithe and bram and then all of a sudden, BOOM! he's dropping to the ground without a word. and when i picked him up, he told me he was dizzy when he fell.
the same thing happened later in the day at a store. he was running around (i was trying to corral the kids, but i was distracted and they were having fun so they were having none of it), and BOOM! down he went, hitting his head on the counter.
of course, i dropped down to his level, got him to sit up, and i asked him, "asher, were you dizzy before you fell just now?" "yes, i dizzy." and i got a little nauseous.
"asher, did your head feel funny before you fell down?" "yeah, like dare cotton balls in my ears." and i got a lot nauseous.
"asher, did everything go black right before you fell?" he answered quietly and avoiding my gaze, "yeah."
"asher, when you fell down this morning, did everything go black?" "yeah."
does anyone else want to vomit right about now????
so our paeds, the fabulous dr b, sent us to emerg in london, and let them know we were on our way. we were there for three hours, while they monitored him, did a chest xray and an ECG. they wanted to see if he would do it again. of course, he didn't, because when he fainted during the day, he'd been running around and playing, and he wasn't doing that in emerg, just sitting on his bed.
needless to say, they didn't find anything, so they sent us home.
cut to this week. dr b has called our toronto cardiologist, dr russell and told her about the fainting spells and dizziness. "oh, dear, he shouldn't be doing that," was her response.
so that's where we're heading this afternoon. you'll note, half-way through what was supposed to be a little mini-vacation for the kidley-winks and me.
in the meantime, i've been doing some reading and thinking (you're not actually surprised by that, are you?) and i have three ideas about what could be causing these symptoms:
- pacemaker malfunction. this would be the "simplest." i put that in quotes because if it's malfunctioning, it would not be firing when he needs it to, and i'm sure we all remember that now, asher's heart doesn't like to beat on its own very often (4 out of every 5 heartbeats is prompted by the pacer). so if it's not firing, this is a major problem, and would possibly (read: probably) require a replacement generator. which means, you'll note... surgery.
- scar tissue in his pulmonary veins. you might recall that in may 2008, asher had patches put in the veins which bring blood from the right lung to the heart, because they were too small. you may also be aware of asher's love of scar tissue. yup, this kid of mine loves to put scar tissue - and lots of it! - on anything put in there by someone other than God. which is a lot. so, my thought is that asher has a lot of scar tissue built up around those patches, and that's blocking the blood from returning from his right lung. this would cause the pressure in his right lung to increase to an alarming degree, and since blood cannot get to his heart, it cannot get out to his body, which then causes dizziness, light-headedness and fainting, especially during periods of activity when the body requires more blood, not less. if this is the case, it will require some sort of surgical intervention to treat it.
- the arch. we have known about the abundance of scar tissue in asher's aortic arch for over two years now. but because of the nature of the surgery, they didn't want to intervene unless/until it was causing symptoms. (if there's no symptoms, it means it isn't having an effect on the body. once symptoms appear, the narrow arch is now affecting function and blood flow and all that.) interestingly, when i mentioned asher's BPs to our nephrologist the other day, the first thing out of his mouth was, "is his arch narrowing?" {wave of nausea}if the arch is narrowing further, it will mess up his blood pressure and decrease blood flow out of the heart, which will cause dizziness, light-headedness and fainting. if the problem is the arch, they will have to operate and soon, and that surgery is horrific.
so today, we're cutting short our mini-vacation to return to london cardiology for a pacemaker check and a holter (a 24-hour ECG). not exactly my idea of a great way to spend a friday afternoon, but we gotta do what we gotta do.
so, yeah. asher has some pretty major symptoms right now, and they're not good. but we're working on it, and we'll get it figured out quickly, and then they will be dealt with quickly. because a fontan with a pacemaker simply should not be fainting. it just. shouldn't. happen. so this is very scary, and i don't mind admitting that i'm feeling pretty freaxious lately. so please hold us in the Light. and please pray that the docs figure out what the problem is.
funny little God-moment this morning, though. as i was reading my Bible, i came across a verse and, well, let's just say that i've claimed it as my own for now, and it's helping (or at least, inspiring me to not skip cardio this afternoon).
Wait patiently for the Lord.
Be brave and courageous.
Yes, wait patiently for the Lord.
Psalm 27:14
Sunday, July 11, 2010
downer alert: it's late, i'm tired, and asher is just so very skinny. :(
on tuesday, asher goes in to paeds for his monthly weight check, and this time, i'm not expecting a gain.
in fact, i'm anticipating a loss.
asher doesn't often eat anymore. a couple bites of a meal is his usual. unless he's racing with someone (who knows enough to let him win). but that's only a trick to get him to eat at all.
today was the first day in about a week that he's had an appetite. he ate a bowl of cereal for breakfast, an apple, a chocolate bar (gotta love a church with a snack bar!), a cookie, a smoothie (with polycose in it, but shhh! don't tell him that!), another apple, a bowl of lentil and sausage casserole, and some of a second bowl of casserole (both of which contained polycose. again, that's a state secret, and i'll trade you to the russians for someone not nice if you breathe a word of that to asher).
but today, when he was having his bath... i could count his ribs. and he's got an outtie again.
fyi, asher doesn't usually have an outtie. except when he's skinny skinny.
i had just donated his IV pole to the drama ministry at church to use as a prop. i told them that this was my act of faith, that i'm stepping out here believing that asher won't need it again. the director said, "if you need it back, let me know, and you can have it." "oh, if i have anything to say about it, we won't need it back. i'm not feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again!"
but apparently, i'm feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again.
it's just so discouraging. i've buttered mcdonalds hashbrowns and pasta, i've used more oil to cook than i ever imagined possible, i've given him chef boyardee and fed him chocolate bars and ice cream and cookies and more fast food than should legally be allowed, and added Polycose to everything, including milkshakes, scrambled eggs and pasta sauce. for nothing.
with his heart the way it is, it is pretty much impossible to put weight on him. he knows he needs to eat, he knows he needs to gain weight, he knows he might get a tube... and yet, he doesn't eat.
and i don't want to keep reminding him of the (possibly/likely) impending tube, because he's already struggling with his PTSD, getting sad and scared off and on throughout the day for no apparent reason. so i don't want to threaten him with another tube, in case it harms him psychologically. especially since he's making some progress with that (he actually tells me - if i ask him - how he's feeling, which he never did before, so this is actually good news on that front).
i also don't want to have to force him to eat, because i've wrestled with food issues, and i don't want him to have to go through something similar. i don't want him to see food as the enemy, or as something he "has" to do. i want him to have a healthy relationship with food, and i don't think that threatening him to eat all the time is the way to nurture that. i'm trying to think long-term here, even while dealing with short-term issues.
and i don't want to turn mealtime into a battle of wills. i want mealtime to be happy, fun, a loving communal experience with the family.
so far, racing works. but other than that... nothing. even bribery doesn't work.
this is really hard right now. i want him to have a normal life with normal kid problems, like bruised knees and "brammy just took diney away from me" and "dare no cheese!!!!" (yes, he'll eat cheese. assuming we have some in the house.) but balancing normalcy with health issues, trying to integrate his medical requirements into everyday life without overwhelming it or traumatizing him all over again can be downright impossible sometimes.
i'll figure this out. i will. but tonight i'm exhausted (i haven't had a decent night's sleep in about 2 weeks now) and i'm discouraged by the lack of progress on the weight front.
in case you're wondering...
heart life is hard sometimes.
really hard.
in fact, i'm anticipating a loss.
asher doesn't often eat anymore. a couple bites of a meal is his usual. unless he's racing with someone (who knows enough to let him win). but that's only a trick to get him to eat at all.
today was the first day in about a week that he's had an appetite. he ate a bowl of cereal for breakfast, an apple, a chocolate bar (gotta love a church with a snack bar!), a cookie, a smoothie (with polycose in it, but shhh! don't tell him that!), another apple, a bowl of lentil and sausage casserole, and some of a second bowl of casserole (both of which contained polycose. again, that's a state secret, and i'll trade you to the russians for someone not nice if you breathe a word of that to asher).
but today, when he was having his bath... i could count his ribs. and he's got an outtie again.
fyi, asher doesn't usually have an outtie. except when he's skinny skinny.
i had just donated his IV pole to the drama ministry at church to use as a prop. i told them that this was my act of faith, that i'm stepping out here believing that asher won't need it again. the director said, "if you need it back, let me know, and you can have it." "oh, if i have anything to say about it, we won't need it back. i'm not feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again!"
but apparently, i'm feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again.
it's just so discouraging. i've buttered mcdonalds hashbrowns and pasta, i've used more oil to cook than i ever imagined possible, i've given him chef boyardee and fed him chocolate bars and ice cream and cookies and more fast food than should legally be allowed, and added Polycose to everything, including milkshakes, scrambled eggs and pasta sauce. for nothing.
with his heart the way it is, it is pretty much impossible to put weight on him. he knows he needs to eat, he knows he needs to gain weight, he knows he might get a tube... and yet, he doesn't eat.
and i don't want to keep reminding him of the (possibly/likely) impending tube, because he's already struggling with his PTSD, getting sad and scared off and on throughout the day for no apparent reason. so i don't want to threaten him with another tube, in case it harms him psychologically. especially since he's making some progress with that (he actually tells me - if i ask him - how he's feeling, which he never did before, so this is actually good news on that front).
i also don't want to have to force him to eat, because i've wrestled with food issues, and i don't want him to have to go through something similar. i don't want him to see food as the enemy, or as something he "has" to do. i want him to have a healthy relationship with food, and i don't think that threatening him to eat all the time is the way to nurture that. i'm trying to think long-term here, even while dealing with short-term issues.
and i don't want to turn mealtime into a battle of wills. i want mealtime to be happy, fun, a loving communal experience with the family.
so far, racing works. but other than that... nothing. even bribery doesn't work.
this is really hard right now. i want him to have a normal life with normal kid problems, like bruised knees and "brammy just took diney away from me" and "dare no cheese!!!!" (yes, he'll eat cheese. assuming we have some in the house.) but balancing normalcy with health issues, trying to integrate his medical requirements into everyday life without overwhelming it or traumatizing him all over again can be downright impossible sometimes.
i'll figure this out. i will. but tonight i'm exhausted (i haven't had a decent night's sleep in about 2 weeks now) and i'm discouraged by the lack of progress on the weight front.
in case you're wondering...
heart life is hard sometimes.
really hard.
Thursday, June 3, 2010
ugh
wow, the last few months have been rough. really rough. brutally rough. asher has been through the ringer so many times, and frankly, i feel like i've had the crap kicked out of me more times than i can count.
as it happens, i am now exhausted. and overwhelmed.
the bug that asher has in his bladder is a nasty one. in fact, the docs don't even know how it got there, and he's got a 14-day course of antibiotics to get rid of it. i am sure that this infection was caused by the huge amounts of lasix asher was given in the spring, which has injured his kidneys. we'll wait and see for sure on the renal ultrasound in july, but i would put money on this (if i had any, that is, but you know what i mean).
asher needs to gain about 5 lbs just to get up to the 50th percentile on the growth chart. ever tried to pack 5 lbs onto a healthy 3 year old? it's pretty much impossible. so you can imagine how optimistic i'm feeling about putting any weight on asher. :( he's only got a few months to turn this weight pattern around, to start gaining regularly... and if he doesn't... he'll get a g-tube.
again.
and right now, i can't help but feel guilty for that. when he started eating, i was so excited. and he was eating so much; i'm not joking when i say that he used to sneak into the fridge and take out things like cheese and yogurt and apples and stuff like that. so i thought he was doing well. i pushed to get rid of the tube; i'm the one who actually took it out. and now he might need it again. i feel like it's my fault that he might need to go through all that again, after working so hard to get rid of the tube before. and in the meantime, i need to feed him food that is so disgustingly unhealthy, just so he'll gain weight. for crying out loud, the other morning i buttered a hashbrown from mcdonald's!!!! because it's not greasy and gross enough (although delicious), now i have to butter it!!! he gets to eat all the fast food and cookies and ice cream he wants... and more. that's right, i have to force my heart kid to eat a happy meal. and where any other mother would say, "yes, hunny, you can have some ice cream or cookies, but first you need to eat an apple," i now have to say, "yes, sweetie, you can have an apple, but not before you finish all your ice cream and cookies." do you see how messed up that is?!?! and this is actually healthy for him!! but then i start to worry about how fattening and unhealthy these foods actually are, and even though they're good for him on the weight front, this kind of diet can't be good for his heart... but we'll have to deal with that later, i guess. that's right, we'll deal with hypertension and cholesterol later. for now, let's make him fat. blech!!!
add to all of this the fact that blithe and bram see asher eating like this, and i have to say to them, "yes, i know you'd like a milkshake with your fries and burger, but that's not healthy. you need juice or milk, and you're only getting fries as a treat. it's salads with dinner at home for the rest of the week. only asher gets junk food." try explaining this to them. they don't get it. they want the same stuff he gets. and he doesn't even eat or drink it all, because he has almost no appetite anymore.
and now i have discovered something disconcerting about myself: i have no idea how to live normally anymore. it's like i've forgotten how to live outside a hospital. when we're in crisis mode and asher's really, really sick and we're dealing with docs and mystery illnesses and surgeries and nasty meds and emerg trips and ambulance rides and all of that, i'm fine. not even fine. i'm really good at that. i cope, i take care of myself, and i'm ok. i can carry on a conversation, i can laugh and joke about anything and everything, i know what to do and where to go and who to talk to and i keep everything organized and i'm on the ball.
and then we come home.
and i'm lost.
i'm not even joking here. i have no idea how to function anymore on a day-to-day basis. this isn't a lack of trust or faith or surrender. this is conditioning. the last few months have been one crisis after another. so what do i do when there's no crisis? how do i live? what am i supposed to do? how can i sleep in a big, comfy bed? i can rest on a cot in a tiny, cramped hospital room. but in my own room, i get sleep, sure. but it's not restful sleep.
i'm trying to take care of myself, i'm trying to pull myself back together, but it's hard. i could do this if asher were in the hospital. i journal and breathe and go for walks and read and wear my perfume and rest and laugh and play and what not. but somehow at home, where there is so much else that requires my attention, i just don't know what to do.
i will get through all this, i'm sure i will. i've been through worse, and i got better. so i can do it again.
but wow! this is hard. and overwhelming. and exhausting.
sigh.
so please hold me in the Light now. i'm in a rough place, and i need to get out of it. thank-you.
as it happens, i am now exhausted. and overwhelmed.
the bug that asher has in his bladder is a nasty one. in fact, the docs don't even know how it got there, and he's got a 14-day course of antibiotics to get rid of it. i am sure that this infection was caused by the huge amounts of lasix asher was given in the spring, which has injured his kidneys. we'll wait and see for sure on the renal ultrasound in july, but i would put money on this (if i had any, that is, but you know what i mean).
asher needs to gain about 5 lbs just to get up to the 50th percentile on the growth chart. ever tried to pack 5 lbs onto a healthy 3 year old? it's pretty much impossible. so you can imagine how optimistic i'm feeling about putting any weight on asher. :( he's only got a few months to turn this weight pattern around, to start gaining regularly... and if he doesn't... he'll get a g-tube.
again.
and right now, i can't help but feel guilty for that. when he started eating, i was so excited. and he was eating so much; i'm not joking when i say that he used to sneak into the fridge and take out things like cheese and yogurt and apples and stuff like that. so i thought he was doing well. i pushed to get rid of the tube; i'm the one who actually took it out. and now he might need it again. i feel like it's my fault that he might need to go through all that again, after working so hard to get rid of the tube before. and in the meantime, i need to feed him food that is so disgustingly unhealthy, just so he'll gain weight. for crying out loud, the other morning i buttered a hashbrown from mcdonald's!!!! because it's not greasy and gross enough (although delicious), now i have to butter it!!! he gets to eat all the fast food and cookies and ice cream he wants... and more. that's right, i have to force my heart kid to eat a happy meal. and where any other mother would say, "yes, hunny, you can have some ice cream or cookies, but first you need to eat an apple," i now have to say, "yes, sweetie, you can have an apple, but not before you finish all your ice cream and cookies." do you see how messed up that is?!?! and this is actually healthy for him!! but then i start to worry about how fattening and unhealthy these foods actually are, and even though they're good for him on the weight front, this kind of diet can't be good for his heart... but we'll have to deal with that later, i guess. that's right, we'll deal with hypertension and cholesterol later. for now, let's make him fat. blech!!!
add to all of this the fact that blithe and bram see asher eating like this, and i have to say to them, "yes, i know you'd like a milkshake with your fries and burger, but that's not healthy. you need juice or milk, and you're only getting fries as a treat. it's salads with dinner at home for the rest of the week. only asher gets junk food." try explaining this to them. they don't get it. they want the same stuff he gets. and he doesn't even eat or drink it all, because he has almost no appetite anymore.
and now i have discovered something disconcerting about myself: i have no idea how to live normally anymore. it's like i've forgotten how to live outside a hospital. when we're in crisis mode and asher's really, really sick and we're dealing with docs and mystery illnesses and surgeries and nasty meds and emerg trips and ambulance rides and all of that, i'm fine. not even fine. i'm really good at that. i cope, i take care of myself, and i'm ok. i can carry on a conversation, i can laugh and joke about anything and everything, i know what to do and where to go and who to talk to and i keep everything organized and i'm on the ball.
and then we come home.
and i'm lost.
i'm not even joking here. i have no idea how to function anymore on a day-to-day basis. this isn't a lack of trust or faith or surrender. this is conditioning. the last few months have been one crisis after another. so what do i do when there's no crisis? how do i live? what am i supposed to do? how can i sleep in a big, comfy bed? i can rest on a cot in a tiny, cramped hospital room. but in my own room, i get sleep, sure. but it's not restful sleep.
i'm trying to take care of myself, i'm trying to pull myself back together, but it's hard. i could do this if asher were in the hospital. i journal and breathe and go for walks and read and wear my perfume and rest and laugh and play and what not. but somehow at home, where there is so much else that requires my attention, i just don't know what to do.
i will get through all this, i'm sure i will. i've been through worse, and i got better. so i can do it again.
but wow! this is hard. and overwhelming. and exhausting.
sigh.
so please hold me in the Light now. i'm in a rough place, and i need to get out of it. thank-you.
Tuesday, May 4, 2010
for deirdre, in hopes that you'll read this before wednesday...
what timing. i mean, really, what ridiculous, back-stabbing timing asher has...
i was looking forward to seeing you on wednesday. now that the fontan and the bradycardia are behind us, i was going to regale you with tales of normalcy. not our "creeping normalcy," but actual, honest-to-goodness normalcy. i've lost the extra pounds i put on in the hospital, and i've started working out again, and physically, i feel great. sure, i'm still exhausted, but that's ok. i can nap with asher in the afternoons, and i can go to bed with the kids now, because asher doesn't get meds at midnight anymore, just at bedtime. the kids are happy to be home, and they're playing so well together (usually), and asher is quickly re-learning how to share and play with others again. (he'd been on his own - other than me - for 7 weeks, so he'd gotten used to playing on his own, and all his toys were only for him, and he didn't need to ask bram for that train or car and blithe didn't take his toys for her barbies... but he's adjusting.) we've only got a few days left of the fat-free diet, but i've discovered that fat-free cream cheese makes a great cream sauce for pasta, especially when you throw in some spinach and sundried tomatoes. i've done dishes and laundry and tidied up. i've gone grocery shopping. i have spent time with my friends, and i've read a couple cheesy romance novels and on friday night i went to see my friend's band play in london. i have a job lined up, just waiting for funding right now. i was planning on returning to my spirituality group and getting started back with the music team at church. money's tight, but it always is, and we get by. last week i started prepping the garden for planting, and there's garlic coming up from last year, and i think i want to grow tomatoes and zucchini and herbs and spinach this year, maybe some hot peppers, too. i had those a couple years ago and they were great. and today, asher and i were working on potty training, because he's "a big boy now" and "big boys go to da baffroom" so asher "not need pull-ups anymore, just underwears." and he was doing so well. only one accident all day; my dream was that he'd be fully trained by the end of the week, since he's so determined.
i imagined sitting down with you and filling you in on our normal life, our stable life, and you'd be so happy to hear it all, and you'd be amazed at how asher could go from a heart barely beating anymore to completely stable in such a short period of time.
and then came naptime. and he was short of breath from climbing up the stairs. (he hasn't had that problem in months.) and once he fell asleep, he started sweating again. a lot. i could have wrung out his thomas pillowcase. and he was pale. very pale.
i called our paediatrician's office and told them what was going on, and please tell me she'll wait to see him tomorrow, because "other than the shortness of breath and paleness and sweating, he's fine and not distressed." (you might not get that, but please tell dr c that i was laughing while i said that, totally joking, because he'll see the humour, i'm sure.) she sent us to emerg instead. oh, why, God, can't a doc just brush off some symptoms once in a while? is that too much to ask?
so off we went. ash, me and the kids. (and yes, it's like i have two families. there's asher, and there's the kids. rarely are they grouped together. it's what this kind of life does to you.) we were greeted at triage by name and the nurses were amazed by his sats, which are now gloriously normal. he sounded clear, and even though he's pale today, they could all see how pink he now is. i joked that it's amazing what some oxygen and heart that beats can do for a kid. they didn't realize that he'd gotten a pacemaker, but of course, they know him, so they weren't surprised. we went to register, and the nurse there knew asher and called him by name. another mother looked at us funny, and i just said, "we're here a lot, can you tell?" and we laughed. we got into emerge, and another nurse came over because he'd seen asher's sats on the monitor and he saw asher's colour from the nurses' station and needed to see him for himself, figuring asher had had the fontan but he didn't know for sure, and he was really happy to see asher looking so well, and recommended that the kids try hot dogs with peanut butter, which personally i think sounds disgusting, but bram is all excited to try it now. delightful.
the resident came over and asked if asher had a fever, runny nose, cough, any cold symptoms, and i told her that if he did we wouldn't be there, because that's just a cold and he'll get over it. she looked at me weird. but i was honestly hoping to hear that i was paranoid, that it was humid today, and that asher is otherwise fine. so she ordered a chest x-ray and ECG, and i expected they'd find nothing.
the x-ray was ok. asher didn't want to go, but he hurried through his popsicle and was excited to show blithe and bram the fish in the radiology waiting room. he was so funny during the x-ray. they had to do each shot twice, because he moved during the side view, and during the straight-on shot, just as they were taking the pic, he put his hands up and asked if we were done. haha, no. but then we were, and he got some stickers for himself (thomas, percy and james) and got some for bram (thomas and james) and some for blithe (snow white). and i got to see his x-rays. i hadn't had the chance to see his pacemaker yet, so i wanted to see it. it's so cool! there's the generator, which you can fully see in the side-view pic, and i saw the leads attached to his heart. wow, i love hearts! and i noticed that there was no fluid accumulating, which is why they wanted the x-ray, just to make sure, even though he sounded clear. when the resident came to discuss it with me, she said it looked ok, and i replied, "yeah, i didn't see any fluid on the x-ray," and again she looked at me weird. but whatever. she's never met us before; she doesn't know that i look at all his x-rays in london, and i know what they should look like, and i can pick out the problems before they do.
then she pulled out the ECG. the one asher had helped with, putting some of the stickers on himself and pulling the leads off when it was done. i looked at the report, but it was upside down so i just ignored it, figuring it would look ok (a mom can dream) and we could go home because i'm just not used to how a fontan should behave.
and she said that there was a problem with his T-wave on a couple lines, that they were pointing down instead of up, and they're letting us go home because we're going to be following up with cardiology this week. (i was unaware of an appointment this week with cardio. we were supposed to be free until the end of the month when we went in for pacemaker clinic. so i'll be calling about this in the morning.)
so now there's another problem with asher's heart. and of course, it's electrophysiological. because i don't understand electrophysiology. so obviously that's what he'll go for. something i don't get. and now i'm tired again. wait, tired isn't the word. weary, i think, is better. and so completely sick of all of this. the fontan was supposed to be the end of all of this. and then when it wasn't, that's ok, because the pacemaker would take care of this, and we're done now, and we're going to have normal lives now, for the first time in asher's life, it was all going to be normal. and it was, for a few days there. a few wonderful, miraculous, unprecedented days. what a joke. it was just a tease. like a carrot dangled in front of us for a couple weeks, and just when i started to let myself believe that it was in our grasp, it was yanked away, out of reach.
and i could just cry.
and i just want to sleep.
i cried tonight when i was getting asher ready for bed. bram gave me a hug. blithe gave me her favourite stuffed animal to sleep with because i "need mufu more than i do, mommy," and she wants to sleep with me tonight, so that, if i start to cry, she can just hug me and it will be ok. asher just played and was oblivious to anything being wrong in the world.
and i resent him for that. i hate to admit it, especially publicly, but it's true. it's his heart that's breaking mine right now, and he just carries on as though everything is hunky-dory. that's his little gift, i guess. but tonight, in the mess of this, having been blindsided again, i'm having trouble with that. i'll probably feel better in the morning, and when i see you on wednesday, i'll probably be back to myself again, but for some reason, i wanted to write this tonight, while i'm feeling it, because it's fresh and you want to know what this life is like.
and this is it. honestly.
see you wednesday.
i was looking forward to seeing you on wednesday. now that the fontan and the bradycardia are behind us, i was going to regale you with tales of normalcy. not our "creeping normalcy," but actual, honest-to-goodness normalcy. i've lost the extra pounds i put on in the hospital, and i've started working out again, and physically, i feel great. sure, i'm still exhausted, but that's ok. i can nap with asher in the afternoons, and i can go to bed with the kids now, because asher doesn't get meds at midnight anymore, just at bedtime. the kids are happy to be home, and they're playing so well together (usually), and asher is quickly re-learning how to share and play with others again. (he'd been on his own - other than me - for 7 weeks, so he'd gotten used to playing on his own, and all his toys were only for him, and he didn't need to ask bram for that train or car and blithe didn't take his toys for her barbies... but he's adjusting.) we've only got a few days left of the fat-free diet, but i've discovered that fat-free cream cheese makes a great cream sauce for pasta, especially when you throw in some spinach and sundried tomatoes. i've done dishes and laundry and tidied up. i've gone grocery shopping. i have spent time with my friends, and i've read a couple cheesy romance novels and on friday night i went to see my friend's band play in london. i have a job lined up, just waiting for funding right now. i was planning on returning to my spirituality group and getting started back with the music team at church. money's tight, but it always is, and we get by. last week i started prepping the garden for planting, and there's garlic coming up from last year, and i think i want to grow tomatoes and zucchini and herbs and spinach this year, maybe some hot peppers, too. i had those a couple years ago and they were great. and today, asher and i were working on potty training, because he's "a big boy now" and "big boys go to da baffroom" so asher "not need pull-ups anymore, just underwears." and he was doing so well. only one accident all day; my dream was that he'd be fully trained by the end of the week, since he's so determined.
i imagined sitting down with you and filling you in on our normal life, our stable life, and you'd be so happy to hear it all, and you'd be amazed at how asher could go from a heart barely beating anymore to completely stable in such a short period of time.
and then came naptime. and he was short of breath from climbing up the stairs. (he hasn't had that problem in months.) and once he fell asleep, he started sweating again. a lot. i could have wrung out his thomas pillowcase. and he was pale. very pale.
i called our paediatrician's office and told them what was going on, and please tell me she'll wait to see him tomorrow, because "other than the shortness of breath and paleness and sweating, he's fine and not distressed." (you might not get that, but please tell dr c that i was laughing while i said that, totally joking, because he'll see the humour, i'm sure.) she sent us to emerg instead. oh, why, God, can't a doc just brush off some symptoms once in a while? is that too much to ask?
so off we went. ash, me and the kids. (and yes, it's like i have two families. there's asher, and there's the kids. rarely are they grouped together. it's what this kind of life does to you.) we were greeted at triage by name and the nurses were amazed by his sats, which are now gloriously normal. he sounded clear, and even though he's pale today, they could all see how pink he now is. i joked that it's amazing what some oxygen and heart that beats can do for a kid. they didn't realize that he'd gotten a pacemaker, but of course, they know him, so they weren't surprised. we went to register, and the nurse there knew asher and called him by name. another mother looked at us funny, and i just said, "we're here a lot, can you tell?" and we laughed. we got into emerge, and another nurse came over because he'd seen asher's sats on the monitor and he saw asher's colour from the nurses' station and needed to see him for himself, figuring asher had had the fontan but he didn't know for sure, and he was really happy to see asher looking so well, and recommended that the kids try hot dogs with peanut butter, which personally i think sounds disgusting, but bram is all excited to try it now. delightful.
the resident came over and asked if asher had a fever, runny nose, cough, any cold symptoms, and i told her that if he did we wouldn't be there, because that's just a cold and he'll get over it. she looked at me weird. but i was honestly hoping to hear that i was paranoid, that it was humid today, and that asher is otherwise fine. so she ordered a chest x-ray and ECG, and i expected they'd find nothing.
the x-ray was ok. asher didn't want to go, but he hurried through his popsicle and was excited to show blithe and bram the fish in the radiology waiting room. he was so funny during the x-ray. they had to do each shot twice, because he moved during the side view, and during the straight-on shot, just as they were taking the pic, he put his hands up and asked if we were done. haha, no. but then we were, and he got some stickers for himself (thomas, percy and james) and got some for bram (thomas and james) and some for blithe (snow white). and i got to see his x-rays. i hadn't had the chance to see his pacemaker yet, so i wanted to see it. it's so cool! there's the generator, which you can fully see in the side-view pic, and i saw the leads attached to his heart. wow, i love hearts! and i noticed that there was no fluid accumulating, which is why they wanted the x-ray, just to make sure, even though he sounded clear. when the resident came to discuss it with me, she said it looked ok, and i replied, "yeah, i didn't see any fluid on the x-ray," and again she looked at me weird. but whatever. she's never met us before; she doesn't know that i look at all his x-rays in london, and i know what they should look like, and i can pick out the problems before they do.
then she pulled out the ECG. the one asher had helped with, putting some of the stickers on himself and pulling the leads off when it was done. i looked at the report, but it was upside down so i just ignored it, figuring it would look ok (a mom can dream) and we could go home because i'm just not used to how a fontan should behave.
and she said that there was a problem with his T-wave on a couple lines, that they were pointing down instead of up, and they're letting us go home because we're going to be following up with cardiology this week. (i was unaware of an appointment this week with cardio. we were supposed to be free until the end of the month when we went in for pacemaker clinic. so i'll be calling about this in the morning.)
so now there's another problem with asher's heart. and of course, it's electrophysiological. because i don't understand electrophysiology. so obviously that's what he'll go for. something i don't get. and now i'm tired again. wait, tired isn't the word. weary, i think, is better. and so completely sick of all of this. the fontan was supposed to be the end of all of this. and then when it wasn't, that's ok, because the pacemaker would take care of this, and we're done now, and we're going to have normal lives now, for the first time in asher's life, it was all going to be normal. and it was, for a few days there. a few wonderful, miraculous, unprecedented days. what a joke. it was just a tease. like a carrot dangled in front of us for a couple weeks, and just when i started to let myself believe that it was in our grasp, it was yanked away, out of reach.
and i could just cry.
and i just want to sleep.
i cried tonight when i was getting asher ready for bed. bram gave me a hug. blithe gave me her favourite stuffed animal to sleep with because i "need mufu more than i do, mommy," and she wants to sleep with me tonight, so that, if i start to cry, she can just hug me and it will be ok. asher just played and was oblivious to anything being wrong in the world.
and i resent him for that. i hate to admit it, especially publicly, but it's true. it's his heart that's breaking mine right now, and he just carries on as though everything is hunky-dory. that's his little gift, i guess. but tonight, in the mess of this, having been blindsided again, i'm having trouble with that. i'll probably feel better in the morning, and when i see you on wednesday, i'll probably be back to myself again, but for some reason, i wanted to write this tonight, while i'm feeling it, because it's fresh and you want to know what this life is like.
and this is it. honestly.
see you wednesday.
Thursday, April 1, 2010
(yet another) post-op clinic
we went for post-op clinic yesterday, since we're still in the post-op period, and we needed follow-up after our admission. and wow, clinic was interesting. a mixed bag, if you will.
when we got there, i mentioned that asher had just had a chest x-ray the night before in st thomas (oh, yeah. forgot to post that. i took asher to STEGH emerg on tuesday night because of a grey spell and puffiness. turns out his rhythm was acting up, but we came home), but liz came out and said that she wanted asher to have another x-ray done because the report from stegh said there was no pleural effusion, but she could clearly see one. not surprising, since i'd seen his x-ray and I could see it! then she asked if asher was still on the fat-free diet, and i calmly said "yes" and she nodded and sent us downstairs. to x-ray. she didn't banish us or anything. lol
we got back from x-ray and waited for a few minutes to be called in. asher walked around, happily playing with the train table and his own train that he loves. he was wandering around that table for a good 10 minutes, laughing, reaching all over the place... pretty active, actually. (remember this paragraph when you read the next part.)
so, we got called in for vitals and ECG. asher's sats were 91-93% (you'll note, his sats the other day were 97%, so this is markedly decreased now). and his heart rate... ugh. that's all i can say. just... ugh. after all that activity, his heart rate was... low 50s. that's right, an active heart rate about half what his resting HR was pre-fontan. then the ECG, which showed the same issues from the night before at STEGH. i won't go into the details, since i'm sure most of you won't know what i'm talking about, but i'll just say that it didn't look the way they would like it to. sigh.
next, weight and height (and before i continue, my apologies to my non-metric readers. i'm a hospital mom, what can i say? lol). he's 93 cm tall (a little over 3 ft), and weight... 13 kg. somehow, this kid of mine has managed to GAIN weight on a no-fat diet!! wha-?! although i suspect i know why...
then we went in to the room and liz came in. liz sat down and said that she can see a pocket of fluid, which is quite concerning, and his right diaphragm is lower than his left one, which could be from all the fluid before, so we need to make sure asher does a lot of deep breathing, coughing, bubble-blowing to train his lungs to take air down to the bases (air entry to bases is still decreased, btw... for those who understand that sentence). and let me tell you, she was so full of information, spelled out exactly what the problem was and what we need to do and what might happen and what might be causing all this... she was very informative and helpful. then she got up and said that she would go get dr welisch.
who sat down and spoke about the "concerning" pleural effusion (pocket of fluid). we have to keep an eye on this again, since clearly it isn't improving, and this will hinder lung function and all that, so it's a problem.
then she continued.
"the other problem, and it's a much bigger problem, is the bradycardia and juctional escape rhythm that asher has now." and she talked at length about all of this, and she seems to be thinking now that asher will still likely need a pacemaker in the near future. (and fyi... pacemakers are dr welisch's specialty. handy, wouldn't you say?) i said that i assume he will need one, since the hope was that, by stopping the carvedilol (which slows the heart rate) his heart rate would pick up, and it's been a week and a half since we stopped it and there hasn't been a change. she agreed, saying that it definitely would have done something if the beta-blocker was a factor. she is very concerned about these arrhythmia issues, and will be keeping a very close eye on asher now. we're going to have a few holter monitors (24-hour ECGs, basically) over the next little while, beginning next week, to see if there is any improvement.
then she asked...
"does he turn grey?"
i waited till the wave of nausea passed before i answered, "yes. quite often, actually. that was why we were in emerg last night."
"does he get dizzy? has he fainted?"
again, wait for the nausea to pass, then, "he gets dizzy quite a bit, but he hasn't fainted. last night at supper, he was chatting and playing and goofing around, and then suddenly he turned pale, his eyes lost their focus, and he gripped the table with both hands because he was swaying a bit. he didn't seem able to hear when we spoke to him unless we were quite loud, and i suspect everything was black, because i don't think he could actually see anything."
"ok, well, we will keep an eye on this, because this is very concerning, and we will do the holter next week. sometimes these things improve, but they don't always, and often a pacemaker is a good idea in kids once they've had the fontan. so we will see what the holter shows us next week, and we will watch this very carefully."
and then i asked her to call our paeds because she would like some direction for when asher comes to emerg having crashed with a heart rate in the 20s or 30s. (and before you think that can't happen, asher's HR when asleep has dipped into the low 30s, so it's a distinct possibility.) and i asked dr w for some information about arrhythmia so i can learn about it, and she said that she will get me some information for our appointment next week, and she will also give me information about pacemakers, as well, because i should know about that, too.
so there you go. some good stuff, but mostly bad. for those who don't understand all the technical jargon, the gist is this: asher is frighteningly unstable right now, and has two major issues going on that can each cause huge problems on their own, and we're dealing with both at the same time. chylothorax can be fatal when it's not controlled (and asher's seems to be ignoring the diet right now), and then there's the arrhythmia, which is the "much bigger problem." yeah.
so please pray/cross crossables/send healthy vibes for asher. he's not in great shape right now... though would someone please tell him that!!! he hasn't stopped playing or chatting since we came home from toronto!!! LOL
when we got there, i mentioned that asher had just had a chest x-ray the night before in st thomas (oh, yeah. forgot to post that. i took asher to STEGH emerg on tuesday night because of a grey spell and puffiness. turns out his rhythm was acting up, but we came home), but liz came out and said that she wanted asher to have another x-ray done because the report from stegh said there was no pleural effusion, but she could clearly see one. not surprising, since i'd seen his x-ray and I could see it! then she asked if asher was still on the fat-free diet, and i calmly said "yes" and she nodded and sent us downstairs. to x-ray. she didn't banish us or anything. lol
we got back from x-ray and waited for a few minutes to be called in. asher walked around, happily playing with the train table and his own train that he loves. he was wandering around that table for a good 10 minutes, laughing, reaching all over the place... pretty active, actually. (remember this paragraph when you read the next part.)
so, we got called in for vitals and ECG. asher's sats were 91-93% (you'll note, his sats the other day were 97%, so this is markedly decreased now). and his heart rate... ugh. that's all i can say. just... ugh. after all that activity, his heart rate was... low 50s. that's right, an active heart rate about half what his resting HR was pre-fontan. then the ECG, which showed the same issues from the night before at STEGH. i won't go into the details, since i'm sure most of you won't know what i'm talking about, but i'll just say that it didn't look the way they would like it to. sigh.
next, weight and height (and before i continue, my apologies to my non-metric readers. i'm a hospital mom, what can i say? lol). he's 93 cm tall (a little over 3 ft), and weight... 13 kg. somehow, this kid of mine has managed to GAIN weight on a no-fat diet!! wha-?! although i suspect i know why...
then we went in to the room and liz came in. liz sat down and said that she can see a pocket of fluid, which is quite concerning, and his right diaphragm is lower than his left one, which could be from all the fluid before, so we need to make sure asher does a lot of deep breathing, coughing, bubble-blowing to train his lungs to take air down to the bases (air entry to bases is still decreased, btw... for those who understand that sentence). and let me tell you, she was so full of information, spelled out exactly what the problem was and what we need to do and what might happen and what might be causing all this... she was very informative and helpful. then she got up and said that she would go get dr welisch.
who sat down and spoke about the "concerning" pleural effusion (pocket of fluid). we have to keep an eye on this again, since clearly it isn't improving, and this will hinder lung function and all that, so it's a problem.
then she continued.
"the other problem, and it's a much bigger problem, is the bradycardia and juctional escape rhythm that asher has now." and she talked at length about all of this, and she seems to be thinking now that asher will still likely need a pacemaker in the near future. (and fyi... pacemakers are dr welisch's specialty. handy, wouldn't you say?) i said that i assume he will need one, since the hope was that, by stopping the carvedilol (which slows the heart rate) his heart rate would pick up, and it's been a week and a half since we stopped it and there hasn't been a change. she agreed, saying that it definitely would have done something if the beta-blocker was a factor. she is very concerned about these arrhythmia issues, and will be keeping a very close eye on asher now. we're going to have a few holter monitors (24-hour ECGs, basically) over the next little while, beginning next week, to see if there is any improvement.
then she asked...
"does he turn grey?"
i waited till the wave of nausea passed before i answered, "yes. quite often, actually. that was why we were in emerg last night."
"does he get dizzy? has he fainted?"
again, wait for the nausea to pass, then, "he gets dizzy quite a bit, but he hasn't fainted. last night at supper, he was chatting and playing and goofing around, and then suddenly he turned pale, his eyes lost their focus, and he gripped the table with both hands because he was swaying a bit. he didn't seem able to hear when we spoke to him unless we were quite loud, and i suspect everything was black, because i don't think he could actually see anything."
"ok, well, we will keep an eye on this, because this is very concerning, and we will do the holter next week. sometimes these things improve, but they don't always, and often a pacemaker is a good idea in kids once they've had the fontan. so we will see what the holter shows us next week, and we will watch this very carefully."
and then i asked her to call our paeds because she would like some direction for when asher comes to emerg having crashed with a heart rate in the 20s or 30s. (and before you think that can't happen, asher's HR when asleep has dipped into the low 30s, so it's a distinct possibility.) and i asked dr w for some information about arrhythmia so i can learn about it, and she said that she will get me some information for our appointment next week, and she will also give me information about pacemakers, as well, because i should know about that, too.
so there you go. some good stuff, but mostly bad. for those who don't understand all the technical jargon, the gist is this: asher is frighteningly unstable right now, and has two major issues going on that can each cause huge problems on their own, and we're dealing with both at the same time. chylothorax can be fatal when it's not controlled (and asher's seems to be ignoring the diet right now), and then there's the arrhythmia, which is the "much bigger problem." yeah.
so please pray/cross crossables/send healthy vibes for asher. he's not in great shape right now... though would someone please tell him that!!! he hasn't stopped playing or chatting since we came home from toronto!!! LOL
Thursday, March 25, 2010
I WASN'T EVEN TOLD TO LOOK FOR THESE SYMPTOMS TILL I GOT HERE!!!!
so, last night i asked asher's nurse for some information about arrhythmia. i knew they had pamphlets and booklets about it, but i was "stuck" in his room, so i couldn't go hunting them down. but they love it here when parents ask questions and want information. so... she got me a pamphlet and printed off several pages about it.
and i started reading. and learning. and i think i know what the issue is, but i may be wrong, so i'm not going to say here. it's just a thought at this point... BUT! i learned about symptoms and signs to watch for.
so when asher woke up at 2am and cried, "mommy, i getting dizzy again!" i jumped out of "bed," called the nurse and ran over to asher. "you're dizzy right now?" "yes." "does this happen a lot?" "yes."
excuse me while i vomit. i had assumed he didn't have any symptoms, because he wasn't telling me anything. and i didn't know what symptoms to watch for or ask about, because i hadn't been told in london. just that "if he crashes at home, there's nothing you can do about it there."
this morning, i asked asher again if he gets dizzy a lot, and he said yes. then i asked if his ears ever feel like they're stuffed with cotton balls. "yes.""honey, does everything go black sometimes when you're awake?" "yes." "a lot?" "yes."
he's been having these symptoms all along, and he never told me, and i didn't know to ask!!! because i wasn't given any information about this.
so please pray/cross your crossables/send good vibes for asher. so far today, he hasn't had any symptoms, his HR is closer to normal, and i haven't seen the weird rhythm. but it's only 3:00 in the afternoon now, so who knows what he'll do later...
i'm scared out of my mind now. his nurse last night came in often to check on him, because she could see at the front desk that his HR was getting low (they turn off the monitors in the rooms so everyone can sleep, and send the signal to the nurses' station). asher's heart rate kept dropping - and sitting! - in the low 40s all night. and kept doing the weird rhythm. her words? "yeah, this is pretty scary." and when a cardiac nurse, who has seen it all, says this is scary...
i just want to cry.
and i started reading. and learning. and i think i know what the issue is, but i may be wrong, so i'm not going to say here. it's just a thought at this point... BUT! i learned about symptoms and signs to watch for.
so when asher woke up at 2am and cried, "mommy, i getting dizzy again!" i jumped out of "bed," called the nurse and ran over to asher. "you're dizzy right now?" "yes." "does this happen a lot?" "yes."
excuse me while i vomit. i had assumed he didn't have any symptoms, because he wasn't telling me anything. and i didn't know what symptoms to watch for or ask about, because i hadn't been told in london. just that "if he crashes at home, there's nothing you can do about it there."
this morning, i asked asher again if he gets dizzy a lot, and he said yes. then i asked if his ears ever feel like they're stuffed with cotton balls. "yes."
he's been having these symptoms all along, and he never told me, and i didn't know to ask!!! because i wasn't given any information about this.
so please pray/cross your crossables/send good vibes for asher. so far today, he hasn't had any symptoms, his HR is closer to normal, and i haven't seen the weird rhythm. but it's only 3:00 in the afternoon now, so who knows what he'll do later...
i'm scared out of my mind now. his nurse last night came in often to check on him, because she could see at the front desk that his HR was getting low (they turn off the monitors in the rooms so everyone can sleep, and send the signal to the nurses' station). asher's heart rate kept dropping - and sitting! - in the low 40s all night. and kept doing the weird rhythm. her words? "yeah, this is pretty scary." and when a cardiac nurse, who has seen it all, says this is scary...
i just want to cry.
Thursday, March 18, 2010
oh, please tell me this is all just some horrible dream...
so, we were supposed to go home today. either tubeless or with a JP drain. instead...
we're staying put.
so far, since tuesday night, asher has drained over 500 ml from his chest. the chest x-ray this morning showed some improvement, but it's not gone, and liz wouldn't even call it "good." just "better." and it's still draining, albeit slowly. so the tube is staying in. we also have to get asher walking around and doing some deep breathing and coughing. that should help, especially because he has been splinting his right side (where the tube is). so that sucks.
then liz kept talking.
asher has been showing some weird rhythms while we've been here, and his heart rate is sitting in the 40s and 50s. not good. they've already talked to toronto, who said that asher should be on a holter for 24 hours, then they will discuss him in cardio conference on monday afternoon. at that time, we will either go home...
or to toronto...
for a pacemaker.
because this new rhythm he has is dangerous.
i'm completely heartbroken and terrified and confused. asher was asleep when they put the holter on, but he won't be happy when he wakes up. and he's really going to unimpressed when we make him walk around later today.
please pray/send good vibes/cross your crossables... whatever it is you do, please please do it now. thanks.
we're staying put.
so far, since tuesday night, asher has drained over 500 ml from his chest. the chest x-ray this morning showed some improvement, but it's not gone, and liz wouldn't even call it "good." just "better." and it's still draining, albeit slowly. so the tube is staying in. we also have to get asher walking around and doing some deep breathing and coughing. that should help, especially because he has been splinting his right side (where the tube is). so that sucks.
then liz kept talking.
asher has been showing some weird rhythms while we've been here, and his heart rate is sitting in the 40s and 50s. not good. they've already talked to toronto, who said that asher should be on a holter for 24 hours, then they will discuss him in cardio conference on monday afternoon. at that time, we will either go home...
or to toronto...
for a pacemaker.
because this new rhythm he has is dangerous.
i'm completely heartbroken and terrified and confused. asher was asleep when they put the holter on, but he won't be happy when he wakes up. and he's really going to unimpressed when we make him walk around later today.
please pray/send good vibes/cross your crossables... whatever it is you do, please please do it now. thanks.
Wednesday, March 17, 2010
i'm just gonna cut & paste my FB status, b/c i liked how i worded it, and it sums it all up so very nicely...
Heather is relieved to know that nephro will (likely) approve a switch to lasix from HCT, but first they need a urine sample. um, hello? why do they think we need a stronger diurretic? LOL meantime, asher is finally, for the first time EVER, getting switched to a low-sodium diet. but "hopefully we can get him off that before you leave the hospital." phew! b/c it's not like he has CHF or hypertension... oh, wait... sheesh!!!
hospital admission #24
hi, folks, heather here. thanks, wendy, for keeping everyone up-to-speed on the goings-on in asherland. :)
shortly after i got here (i went home to sleep... got about 3 hours, but i feel, um... not sore. tired, absolutely, but i'm not hurting, so i'm functional), i talked to liz (london cardiology NP). here's the deal:
the chest drain was placed last night around 10:00, and by the time i was called back in around 11, about 250 ml had drained already. that's a quarter of a liter. (for you non-metric/non-hospital-dwelling types, that's over 8 oz). by 9am today, the total that has drained is over 350 ml; approx 50 ml (almost 2 oz) since 7am. yeah.the drainage was very dark (bloody) last night, but it is slowly becoming lighter (straw-coloured). but because of the high amount of drainage, we are going to be here at least one more night, especially since the air entry in his right lung is still decreased to the base (doesn't go all the way down; basically, he's not taking in as much oxygen as he should be). but if there is a bed open on the ward today, we will be heading up there. otherwise, we're stuck in the unit for another day, but not because we need to be here. as the PCCU doc said to me this morning, "he certainly doesn't look like an ICU patient today." so we (by which i mean, i) are hoping to go upstairs today.
the tube will be staying in one more day at least. the drainage is simply too much to think that we can safely remove it yet. the problem, however, is that the tube they used is not a JP; the one they gave him is very stiff, making it very painful to move, since it gets stuck on things and tends to pull and rip (liz's words, not mine. i was busy trying not to vomit when she said that). so the tube we have now is not conducive to going home, which means that, as long as he has this tube in, we're here. but... liz is going to look into changing the tube to a JP, which is more flexible. if we can change the tube, we can go home with that. she said she could show me how to empty it; i laughed and told her i already know how to do that.
meanwhile, they're going to send some of the drained fluid to the lab today to test for a few things. i know there were three things they wanted to look for, but i only remember two:
i will try to update here as often as possible, since i have found a delightful little computer in the unit's waiting room. however, if i can't do a full update, i will post on my facebook and/or text wendy, and she will update the blog for me. (yes, wen, you're forgiven for hijacking the blog last night. lol)
shortly after i got here (i went home to sleep... got about 3 hours, but i feel, um... not sore. tired, absolutely, but i'm not hurting, so i'm functional), i talked to liz (london cardiology NP). here's the deal:
the chest drain was placed last night around 10:00, and by the time i was called back in around 11, about 250 ml had drained already. that's a quarter of a liter. (for you non-metric/non-hospital-dwelling types, that's over 8 oz). by 9am today, the total that has drained is over 350 ml; approx 50 ml (almost 2 oz) since 7am. yeah.
the tube will be staying in one more day at least. the drainage is simply too much to think that we can safely remove it yet. the problem, however, is that the tube they used is not a JP; the one they gave him is very stiff, making it very painful to move, since it gets stuck on things and tends to pull and rip (liz's words, not mine. i was busy trying not to vomit when she said that). so the tube we have now is not conducive to going home, which means that, as long as he has this tube in, we're here. but... liz is going to look into changing the tube to a JP, which is more flexible. if we can change the tube, we can go home with that. she said she could show me how to empty it; i laughed and told her i already know how to do that.
meanwhile, they're going to send some of the drained fluid to the lab today to test for a few things. i know there were three things they wanted to look for, but i only remember two:
- culture. they want to see if anything will grow. liz thinks it's unlikely to grow anything, but hey, it's asher, and you never know with this kid, so we're trying to cover our bases.
- re-test for chylo. the NP in toronto tested him on the very cusp of chylo-testability, so just to be sure, we're testing again.
i will try to update here as often as possible, since i have found a delightful little computer in the unit's waiting room. however, if i can't do a full update, i will post on my facebook and/or text wendy, and she will update the blog for me. (yes, wen, you're forgiven for hijacking the blog last night. lol)
Chest Tube is in and.....wow
Wendy again - Asher was heavily sedated last night and a chest tube was placed. Heather is heartbroken because that drain on the right side drained 250ml within 5 minutes and it's still draining. For those that don't know about the world of chest tubes, that is A LOT of fluid to drain out over a few hours, let alone within 5 minutes. This likely explains why Asher was having chest pains and difficulty breathing. Heather said that the PCCU doc doesn't think the drain should come out in the morning, he'd rather leave it in at least all day, then take it from there to avoid another admission/tube insertion in a week.
Please keep praying for Asher and Heather. Hospital admissions are very tough & mentally exhausting even when you know it's necessary. Let's hope that all the fluid comes out today and they are on their home very soon.
p.s I'm sure Heather would never turn down coffee or poutine for those that know where they are and have her cell to reach her :) Comfort food does wonders for ones' spirit.
UPDATE FROM HEATHER: wendy forgot two things. i take my coffee black. and i also accept chai lattes. LOL
Please keep praying for Asher and Heather. Hospital admissions are very tough & mentally exhausting even when you know it's necessary. Let's hope that all the fluid comes out today and they are on their home very soon.
p.s I'm sure Heather would never turn down coffee or poutine for those that know where they are and have her cell to reach her :) Comfort food does wonders for ones' spirit.
UPDATE FROM HEATHER: wendy forgot two things. i take my coffee black. and i also accept chai lattes. LOL
Monday, March 8, 2010
i'm baaaa-aaack... with mixed news
thank-you so much to wendy and mom for keeping the blogosphere up-to-speed on the goings-on in asherland over the weekend. i was much too busy visiting with blithe and bram. and don't worry, wen, you did just fine. lol so thank-you. <3
so i'll get the good news out there first, so no one has a heart attack when they see this on facebook (wendy and tanna, i'm looking at you!)...
asher is now in a much better mood, having visited with his brother and sister two days in a row. he really misses them, and i know they miss him, too, so it was lovely to see them all together. asher and bram had tons of fun playing with the train table in the playroom. the kids were even enough to inspire asher to walk down the hall... under much protest, i should add, but he did it, nonetheless, since it meant play-time with his brother and sister. so that's lovely.
and before i forget, his drainage tested negative for chylothorax. wendy did a great job describing it the other day, but for those who don't remember, a brief re-cap: during heart surgery, it is possible for a lymph node to get nicked. the lymph nodes take fat out of the blood, and when it is nicked, the fat (chyle, pronounced "kyle") leaks out into the cavity around the lungs and heart. left untreated (treatment is a fat-free diet for 6 weeks), it will slowly suffocate the patient. asher had it after his glenn and it sucked, to be honest, so when they were concerned about it on the weekend, i was worried. but it's negative, so i'm happy.
he is also eating more. last night at midnight he asked for eggs, so i got him scrambled eggs and hashbrowns for breakfast, and he ate more this morning than he has all week, which is encouraging. since he is usually a bottomless pit, it has been difficult seeing how little he wanted to eat, but he seems to be returning to normal-ish eating again, so HOORAY!!!
now for the not-so-good news.
my mother posted last night about asher's poor fluid intake. their goal is for him to get 910 ml of fluid a day. by yesterday evening, he'd had 334. hence the threat of an NG-tube. understandably, asher did not like that idea. in fact, he clamped his hands over his nose and started crying, "no! i not want tube in my nose! i not want tube!" i told him that he would have to have a tube if he didn't start drinking. over the next 2 hours, he drank 250 ml. still not enough, but much better than before. and this morning, we have had the same conversation every half hour or so. "asher, do you want something to drink?" "no." "do you want a tube?" "no, i want apple juice, please." works like a charm; he's had almost 200mls so far.
now the bad news. sigh.
asher's blood pressure has been (thanks to his special "old man cocktail" of a diurretic, ACE-inhibitor and beta blocker) perfect for several months now. 80s over 50s. beautiful. but over the last couple of days, it's been going up. and up. and up. yesterday at one point, it was 114/65. to put that into perspective, mine is 110/70. yeah. he isn't as puffy anymore, thanks to a combination of 2 diurretics (HCT - his usual one - and metalozone. no lasix for asher because of his kidneys), but there still is some residual puffiness around his eyes, but he can open them fully, so no big deal. that being said, the only reason his fluids are even balanced at this decreased level... is because of the chest drainage. even with 2 diurretics, he isn't peeing as much as they'd like. however, last night he was refluxing pretty badly (i could hear it, and for the first time in his life - and remember he has a history of "severe GERD" - he was complaining that it hurt) and he was sweating. and by "sweating," i mean that he soaked through his sheets and jammies in 10 minutes. soaked them! you could have wrung them out! disgusting!! and in 10 minutes. yeah. the nurses kept asking if he's like this at home, because some kids sweat in their sleep. i told them that asher usually sleeps under 3 or 4 blankets and he never sweats. the nurse... the heart nurse... who deals with this sort of thing all the time... was really worried.
now, i know there are some of you out there who read this paragraph and have small coronaries of your own. yeah. that's about where i was at last night. and i'll admit, i'm still a bit concerned, since asher is still very pale. but, i'm aware that there are some of you reading this who are scratching your head and going, "why is heartburn and sweating so concerning?" so here you go... a crash course in severe CHD, ie, the list all severe heart moms memorize shortly after diagnosis:
so please continue to pray/send good vibes/cross your crossables... whatever it is you do, please keep doing it. asher has a looooooooonnnnnnnnggggggg history of CHF (hence his old man cocktail, which he has been on for quite some time... like, forever) and believe me, it's just as scary now as it was when i first brought him home after the hybrid. what's even worse is when you're used to it... which i am. and when you expect it... which i do.
so there you go, the latest update. i'm off to grab a coffee and some lunch and head up to order asher's lunch. how awesome is that, eh?? i actually get to order him lunch, instead of going to the kitchen to grab a bottle of formula!!! i could get used to this! although, i have to say this... i've waited so long to see asher eating and drinking, swallowing with ease... but now i'm disgusted by it at the same time because honestly, he's the loudest swallower i've ever met!!!! and frankly, i don't think there's a more disgusting sound in the world than the sound of swallowing. blech!! and i'd feel guilty about saying any of this, except that wendy, another heart/tube mom has also heard asher drinking, and she agrees. yuck. LOL
so i'll get the good news out there first, so no one has a heart attack when they see this on facebook (wendy and tanna, i'm looking at you!)...
asher is now in a much better mood, having visited with his brother and sister two days in a row. he really misses them, and i know they miss him, too, so it was lovely to see them all together. asher and bram had tons of fun playing with the train table in the playroom. the kids were even enough to inspire asher to walk down the hall... under much protest, i should add, but he did it, nonetheless, since it meant play-time with his brother and sister. so that's lovely.
and before i forget, his drainage tested negative for chylothorax. wendy did a great job describing it the other day, but for those who don't remember, a brief re-cap: during heart surgery, it is possible for a lymph node to get nicked. the lymph nodes take fat out of the blood, and when it is nicked, the fat (chyle, pronounced "kyle") leaks out into the cavity around the lungs and heart. left untreated (treatment is a fat-free diet for 6 weeks), it will slowly suffocate the patient. asher had it after his glenn and it sucked, to be honest, so when they were concerned about it on the weekend, i was worried. but it's negative, so i'm happy.
he is also eating more. last night at midnight he asked for eggs, so i got him scrambled eggs and hashbrowns for breakfast, and he ate more this morning than he has all week, which is encouraging. since he is usually a bottomless pit, it has been difficult seeing how little he wanted to eat, but he seems to be returning to normal-ish eating again, so HOORAY!!!
now for the not-so-good news.
my mother posted last night about asher's poor fluid intake. their goal is for him to get 910 ml of fluid a day. by yesterday evening, he'd had 334. hence the threat of an NG-tube. understandably, asher did not like that idea. in fact, he clamped his hands over his nose and started crying, "no! i not want tube in my nose! i not want tube!" i told him that he would have to have a tube if he didn't start drinking. over the next 2 hours, he drank 250 ml. still not enough, but much better than before. and this morning, we have had the same conversation every half hour or so. "asher, do you want something to drink?" "no." "do you want a tube?" "no, i want apple juice, please." works like a charm; he's had almost 200mls so far.
now the bad news. sigh.
asher's blood pressure has been (thanks to his special "old man cocktail" of a diurretic, ACE-inhibitor and beta blocker) perfect for several months now. 80s over 50s. beautiful. but over the last couple of days, it's been going up. and up. and up. yesterday at one point, it was 114/65. to put that into perspective, mine is 110/70. yeah. he isn't as puffy anymore, thanks to a combination of 2 diurretics (HCT - his usual one - and metalozone. no lasix for asher because of his kidneys), but there still is some residual puffiness around his eyes, but he can open them fully, so no big deal. that being said, the only reason his fluids are even balanced at this decreased level... is because of the chest drainage. even with 2 diurretics, he isn't peeing as much as they'd like. however, last night he was refluxing pretty badly (i could hear it, and for the first time in his life - and remember he has a history of "severe GERD" - he was complaining that it hurt) and he was sweating. and by "sweating," i mean that he soaked through his sheets and jammies in 10 minutes. soaked them! you could have wrung them out! disgusting!! and in 10 minutes. yeah. the nurses kept asking if he's like this at home, because some kids sweat in their sleep. i told them that asher usually sleeps under 3 or 4 blankets and he never sweats. the nurse... the heart nurse... who deals with this sort of thing all the time... was really worried.
now, i know there are some of you out there who read this paragraph and have small coronaries of your own. yeah. that's about where i was at last night. and i'll admit, i'm still a bit concerned, since asher is still very pale. but, i'm aware that there are some of you reading this who are scratching your head and going, "why is heartburn and sweating so concerning?" so here you go... a crash course in severe CHD, ie, the list all severe heart moms memorize shortly after diagnosis:
- paleness and increased cyanosis (blue spells)
- puffiness
- increased blood pressure
- decreased urinary output
- irritability
- reflux/heartburn and vomiting
- decreased appetite
- sweating
so please continue to pray/send good vibes/cross your crossables... whatever it is you do, please keep doing it. asher has a looooooooonnnnnnnnggggggg history of CHF (hence his old man cocktail, which he has been on for quite some time... like, forever) and believe me, it's just as scary now as it was when i first brought him home after the hybrid. what's even worse is when you're used to it... which i am. and when you expect it... which i do.
so there you go, the latest update. i'm off to grab a coffee and some lunch and head up to order asher's lunch. how awesome is that, eh?? i actually get to order him lunch, instead of going to the kitchen to grab a bottle of formula!!! i could get used to this! although, i have to say this... i've waited so long to see asher eating and drinking, swallowing with ease... but now i'm disgusted by it at the same time because honestly, he's the loudest swallower i've ever met!!!! and frankly, i don't think there's a more disgusting sound in the world than the sound of swallowing. blech!! and i'd feel guilty about saying any of this, except that wendy, another heart/tube mom has also heard asher drinking, and she agrees. yuck. LOL
Sunday, February 28, 2010
sigh...
wow, i don't really know what to write here today. i don't really know exactly how i'm feeling right now. tired? hungry? scared? lonely? freaxious? i don't know...
it's two days till asher's surgery. and i want to cry, but i don't think i'm scared or anything. and i don't feel particularly stressed. although i am fully aware that on tuesday, i will hand asher over to the OR staff, and i will be sitting down the hall while they do disgusting things to my baby's heart. and i will be hoping and praying that at the end of it, the surgeon will take me out into the hall and tell me that my baby is still alive. maybe right now i feel an awareness that this time wednesday i may not have a baby anymore. that might be it. and living in that awareness, i want to just hold asher close and not let him go and just hold him. hold him close to my heart and hope he knows how much i love him. because he will be going into the OR without me. i can't protect him while he's in there. i just have to walk away while he works to stay alive even when they stop his heart... while they turn on the bypass machine and inject his heart with poison and stop it so they can do what they need to do.
maybe it's harder for me this time because he's so healthy and strong right now. every other time that he has had surgery, he's been so weak, so sick. he needed surgery. it's hard for me to look at him today and know in my heart that he needs this.
and yet i do know in my heart that he needs this. sure, he is strong right now, but how long could that last without the surgery? i don't know. i have no idea. so if we do this now, he has a better chance of pulling through quicker and more easily. i've told him that he can and should take all the time he needs to recover from this. but it's hard, you know... i know a few kids who were home in a matter of days. but i know of one little boy who came home five months later with a new heart. that's hard to plan for, that whole, "how long are we going to be gone" question...
what is even harder is knowing that i can't plan. and i probably shouldn't plan. i should trust. just trust. trust God, trust Asher, trust Dr Caldarone, trust the docs and nurses and therapists... but he's my baby!! shouldn't i have a say in this? shouldn't i be able to control something, anything?? and yet i can't. i have no say. i have to let go of my baby an entrust him to other people. and let go of my baby and trust him and his strength and will to live. because he does want to live. you can tell just by looking at him. this boy of mine lives. and frankly, it would be really nice if that continues...
i've been struggling a lot this week with trust and control. i keep wanting to trust, and i do manage to let go of my need to control. but then i find myself trying to control it all again. i just... i don't know. i know i can't control any of this anyway, so shouldn't i just stop trying and trust that in the end, everything will be ok? it sounds so easy, doesn't it? trust. that's it, just trust. a cardiologist told me once, "don't try to control what isn't in your hands to control. one way or another, he has always found his way." and i remember what i shared at the EMMCO women's conference, that patience in prayer is just God asking if we trust Him, and then He waits patiently for us to say "yes." it just all sounds so easy. so why isn't it?
i want to trust that Asher will be ok. actually, no. that would be hope, not trust, and i've got that. i want to let go and be able to deal with whatever happens. i want to have peace with whatever happens, however heartbreaking it may be. i don't have to like it. it really is out of my hands right now. actually, it has always been out of my hands.
i don't know... this is hard for me. it's easy at times. it's easy to let go of it. it's harder to not take it back. and that's what i'm struggling with this week. the continuous letting go. i let go of one thing four times yesterday alone. and that was nothing compared to what i'm facing with asher...
sigh...
and what's funny is that right now, as i'm sitting here typing and watching the kids play together, i just hear those wise words... breathe in Jesus, breathe out the crap.
easier said than done? maybe. but i'm working on it. one of these days i'll get the hang of it... i hope.
it's two days till asher's surgery. and i want to cry, but i don't think i'm scared or anything. and i don't feel particularly stressed. although i am fully aware that on tuesday, i will hand asher over to the OR staff, and i will be sitting down the hall while they do disgusting things to my baby's heart. and i will be hoping and praying that at the end of it, the surgeon will take me out into the hall and tell me that my baby is still alive. maybe right now i feel an awareness that this time wednesday i may not have a baby anymore. that might be it. and living in that awareness, i want to just hold asher close and not let him go and just hold him. hold him close to my heart and hope he knows how much i love him. because he will be going into the OR without me. i can't protect him while he's in there. i just have to walk away while he works to stay alive even when they stop his heart... while they turn on the bypass machine and inject his heart with poison and stop it so they can do what they need to do.
maybe it's harder for me this time because he's so healthy and strong right now. every other time that he has had surgery, he's been so weak, so sick. he needed surgery. it's hard for me to look at him today and know in my heart that he needs this.
and yet i do know in my heart that he needs this. sure, he is strong right now, but how long could that last without the surgery? i don't know. i have no idea. so if we do this now, he has a better chance of pulling through quicker and more easily. i've told him that he can and should take all the time he needs to recover from this. but it's hard, you know... i know a few kids who were home in a matter of days. but i know of one little boy who came home five months later with a new heart. that's hard to plan for, that whole, "how long are we going to be gone" question...
what is even harder is knowing that i can't plan. and i probably shouldn't plan. i should trust. just trust. trust God, trust Asher, trust Dr Caldarone, trust the docs and nurses and therapists... but he's my baby!! shouldn't i have a say in this? shouldn't i be able to control something, anything?? and yet i can't. i have no say. i have to let go of my baby an entrust him to other people. and let go of my baby and trust him and his strength and will to live. because he does want to live. you can tell just by looking at him. this boy of mine lives. and frankly, it would be really nice if that continues...
i've been struggling a lot this week with trust and control. i keep wanting to trust, and i do manage to let go of my need to control. but then i find myself trying to control it all again. i just... i don't know. i know i can't control any of this anyway, so shouldn't i just stop trying and trust that in the end, everything will be ok? it sounds so easy, doesn't it? trust. that's it, just trust. a cardiologist told me once, "don't try to control what isn't in your hands to control. one way or another, he has always found his way." and i remember what i shared at the EMMCO women's conference, that patience in prayer is just God asking if we trust Him, and then He waits patiently for us to say "yes." it just all sounds so easy. so why isn't it?
i want to trust that Asher will be ok. actually, no. that would be hope, not trust, and i've got that. i want to let go and be able to deal with whatever happens. i want to have peace with whatever happens, however heartbreaking it may be. i don't have to like it. it really is out of my hands right now. actually, it has always been out of my hands.
i don't know... this is hard for me. it's easy at times. it's easy to let go of it. it's harder to not take it back. and that's what i'm struggling with this week. the continuous letting go. i let go of one thing four times yesterday alone. and that was nothing compared to what i'm facing with asher...
sigh...
and what's funny is that right now, as i'm sitting here typing and watching the kids play together, i just hear those wise words... breathe in Jesus, breathe out the crap.
easier said than done? maybe. but i'm working on it. one of these days i'll get the hang of it... i hope.
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