she's so nice and really seems to be on the ball. i appreciate that.
so, yeah. we had respirology this morning. i'll admit, this appointment snuck up on me, but i'm really glad we went today. it was one of the quickest and most productive appointments we've had in a while. and we've had some "great" appointments lately! (and yes, i'm including the epically discouraging gastro visit the other week. even though i didn't like anything doc had to say, it's nice to have a plan and some direction. anyhoo...)
the quick stats, for those who want to know:
asher checked in at 16.1 kg (35.5 lbs, give or take), and 103.1 cm (3' 4")
BP was 94/48, HR was 86-87 bpm, and sats were 96-97%
the nurse told him she had to give his arm a hug, and then he turned to me and said, "mommy, she needs to do the blood thingy, right? with the thing around my arm?" she looked at him like he had just sprouted a second head - how does this kid know that?! i said, "he's got half a heart. he's kind of a pro at blood pressures." then he told her she had to put the light on his finger (for his sats). i wonder if she'd be surprised to know he does his own ECGs? haha!
then doc comes in. she sits down and we got to talking. other than over the last week or so when it's been more damp, asher hasn't really been coughing much. as in, almost never. but he has also been having some blue spells (he was notably pale at clinic, and has actually had several blue spells over the last week). he has been a little short of breath lately, too. which led me to comment,
"we've recently started back with gastro." i filled her in on asher's complicated (read: lengthy) GI history, with dysphagia, aspiration, severe chronic GERD (he's refluxing almost constantly now, even with prevacid twice a day), vagus nerve issues, and a possible malrotation in his bowel.
"is it possible," i asked, "that what you saw in his lungs on the CT scan was actually aspirated stomach contents?"
"it's possible," quoth she. and upon further discussion, she offered, "that would actually explain everything."
and so, gentle readers, i present to you her plan:
she's going to investigate. she is ordering a modified barium swallow study, to see where things go and how things work when asher swallows. for those of you who don't know what's involved in this study, asher will have to eat or drink something with barium in it (yum! you're jealous, admit it) as a special xray watches how his throat functions. he's had this test twice already, and both studies found the same thing: his throat muscles were very uncoordinated, resulting in an almost total lack of a swallow reflex. formula trickled down the back of his throat, pooled on top of his epiglottis (which was up, leaving his airway wide open), and then spilled down his esophagus. i think asher's swallow reflex is a bit more co-ordinated now, but hey, you never know.
the second test doc is ordering is some sort of nuclear swallow study. for this one, he will eat/drink something with a small amount of radiation in it. he will then undergo imaging at the time, at the half-hour mark, and the one hour mark. the idea is to see if asher is refluxing, how much, and where it's going (going back down to the stomach, spilling into his lungs, that sort of thing... which, now that i'm re-reading that sentence... ok, those are actually the only options, since he doesn't vomit. haha you know what i mean, though, and that's what really matters, and now i'm babbling, so anyhoo.............)
a bronchioscopy was mentioned, but she says that they would only go that route is there was the possibility of permanent damage to his lungs, and she didn't see any evidence of that on his CT from august, so i think we're going to be ok with "just" the swallow studies.
we are to return to resp clinic in six months, or after the swallow studies. whichever comes last. "unless he gets worse, in which case, keep the appointment," she advised.
so that was our day. :)
and now, since i have you here, i'd like to ask for a favour: please hold a couple of asher's buddies in the Light. B is in the hospital right now, and has been for some time. please pray for her, and pray for the team caring for her, and for her family. also, as i type this, sweet little H is in emerg. please pray/send vibes/cross crossables for these sweet little girls. thank-you.
you are Loved.
Showing posts with label friends discovered along the way. Show all posts
Showing posts with label friends discovered along the way. Show all posts
Tuesday, November 8, 2011
Monday, March 14, 2011
sigh...
a little bit about asher first, then moving on to bigger, more important things...
asher's amazing paeds dr b talked to dr caldarone the other day. she asked him whether or not asher's chest pains could, in fact, be growing pains. dr b figures, he put all that stuff in there, so he should know, right?
he said, "have they looked into the possibility of ischemia (lack of blood/oxygen to the heart muscle)?"
"they checked his CAs in an echo, but that only shows the beginning of the vessels, so it's not conclusive. and since these pains only happen when he's active, it's got me wondering... but doc said they can't do a stess test on a 4-year old..."
"but they can do a stress echo. that's easy to do." (a stress echo is where they give the patient a dose of dobutamine to increase the heart rate, replicating the cardiac effects of exercise, and they do the echo/US to see how the heart functions under stress.)
so dr b is going to be speaking with london and yes, dropping names (she asked dr c, "can i tell them i talked to you?" and he was cool with that) and asking about a stress echo. from what i have seen of london, i don't think they like to do DSEs (dobutamine stress echo), but i could be wrong, but we may be facing a trip to toronto's clinic.
dr caldarone pointed about that it is not uncommon for fontans to develop ischemia, which is why it came to his mind right away and he is concerned. ischemia can be asymptomatic (no symptoms), or it can lead to things like chest pains and heart attacks and all kinds of things.
one more quick thing about asher: i will be taking him in for another session of play therapy this week. since he was taken to emerg from school the other week, he has regressed in a few ways and has decided that he just wants to be a little boy forever because he's scared of growing up. just a month ago he was all about being a big boy, but now... not so much. i'm just waiting for an appointment time.
but in happy asher news, he is now working on potty training. he's actually out of diapers now. (ok, it all started because i ran out of diapers and only noticed right at bedtime one night, and since i refuse to take the kids to the store at 8:30 at night, we had to make do.) but he's been in underwear for a little over a week now, and he's doing great!!! he's dry overnight, and he's usually dry all day, with only a few accidents all week. he's actually becoming quite proud of himself!!!
so now that you're caught up on asher, we're switching gears a bit to something far more urgent and important.
Asher's favourite "best," his friend B, is back in hospital. asher and i met B and her mom in hospital last spring, and we have become very close. B is not a heart kid, but is extremely complex and fragile. and this admission... yeah. it's bad. terrifying. i cry whenever i think about what's going on, actually. here is the latest, from her mom's FB status:
i'll try to keep you posted on B. suffice it to say, this illness is not getting better yet. she needs a miracle. thank-you.
asher's amazing paeds dr b talked to dr caldarone the other day. she asked him whether or not asher's chest pains could, in fact, be growing pains. dr b figures, he put all that stuff in there, so he should know, right?
he said, "have they looked into the possibility of ischemia (lack of blood/oxygen to the heart muscle)?"
"they checked his CAs in an echo, but that only shows the beginning of the vessels, so it's not conclusive. and since these pains only happen when he's active, it's got me wondering... but doc said they can't do a stess test on a 4-year old..."
"but they can do a stress echo. that's easy to do." (a stress echo is where they give the patient a dose of dobutamine to increase the heart rate, replicating the cardiac effects of exercise, and they do the echo/US to see how the heart functions under stress.)
so dr b is going to be speaking with london and yes, dropping names (she asked dr c, "can i tell them i talked to you?" and he was cool with that) and asking about a stress echo. from what i have seen of london, i don't think they like to do DSEs (dobutamine stress echo), but i could be wrong, but we may be facing a trip to toronto's clinic.
dr caldarone pointed about that it is not uncommon for fontans to develop ischemia, which is why it came to his mind right away and he is concerned. ischemia can be asymptomatic (no symptoms), or it can lead to things like chest pains and heart attacks and all kinds of things.
one more quick thing about asher: i will be taking him in for another session of play therapy this week. since he was taken to emerg from school the other week, he has regressed in a few ways and has decided that he just wants to be a little boy forever because he's scared of growing up. just a month ago he was all about being a big boy, but now... not so much. i'm just waiting for an appointment time.
but in happy asher news, he is now working on potty training. he's actually out of diapers now. (ok, it all started because i ran out of diapers and only noticed right at bedtime one night, and since i refuse to take the kids to the store at 8:30 at night, we had to make do.) but he's been in underwear for a little over a week now, and he's doing great!!! he's dry overnight, and he's usually dry all day, with only a few accidents all week. he's actually becoming quite proud of himself!!!
so now that you're caught up on asher, we're switching gears a bit to something far more urgent and important.
Asher's favourite "best," his friend B, is back in hospital. asher and i met B and her mom in hospital last spring, and we have become very close. B is not a heart kid, but is extremely complex and fragile. and this admission... yeah. it's bad. terrifying. i cry whenever i think about what's going on, actually. here is the latest, from her mom's FB status:
if you're interested in reading more, to better understand what is going on, please check out her blog. this is a terrifying admission. right now, Brigid needs all the prayers she can get, as do Allison and the rest of the family, not to mention the docs who are trying to figure out what's going on so they can treat her, and the nurses who are caring for her. please please please pray, send vibes, cross crossables... whatever it is you do, please do it. and please spread the word. this is a wonderful family, a dear friend of mine, a beautiful little girl who is asher's "best," and this is absolutely heartbreaking and terrifying. please pray, spread the word, add them to your prayer lists, your church's prayer chain. thank-you.
i'll try to keep you posted on B. suffice it to say, this illness is not getting better yet. she needs a miracle. thank-you.
Sunday, November 21, 2010
dude, you are such a dude!!!
so, this morning, i picked up asher from his sunday school class, and he and i meandered down the hall to get blithe and bram from their class. as we're walking, he saw an older kid he knows. (rowan is 13 and helps out in asher's class sometimes. asher loves him. so cute!) anyway...
rowan is walking down the hall with a bunch of his friends. asher sees him, does the little nod-thing, and says, "hey rowan." rowan looks over, does the nod-thing, and says, "hey asher."
and they both just kept walking.
because they're just. that. cool.
rowan is walking down the hall with a bunch of his friends. asher sees him, does the little nod-thing, and says, "hey rowan." rowan looks over, does the nod-thing, and says, "hey asher."
and they both just kept walking.
because they're just. that. cool.
Friday, November 12, 2010
the times, they are a-changing
well, asher is stable now. it has been over 5 months since his last admission, and even last month when he had that little "hiccup" he came out of it quickly and on one less med (leaving only aspirin!). so, yeah, he's stable now. kinda weird, no?
not that i'm complaining.
anyway, since asher is doing better now, i knew that it was time for some things to change around here. namely,
i can get a job.
so last week, i began sending out my resume. and on wednesday this week, i went out around town, handing out resumes and applying for jobs. i wasn't picky. so out i went.
the first place i went to, i asked if they were hiring, and lo and behold, they were! in fact, the woman asked me right then and there if i could come in for an interview the next morning.
that's right, folks, the first place i went to invited me back for an interview.
so i went for the interview the next morning. my first interview in about 9 years. and guess what!
i got the job!!!
so i went for my first day today. i'll admit, it was a bit weird. and i'm exhausted. but it was good. and i enjoyed it. yes, at the end of my shift i was very ready to go home. i haven't had an actual job since my contract with the Canada Games ended in august 2001, so this whole working thing will take some getting used to. but i'll manage with all that.
as for the kids... yeah, it's going to be an adjustment. for all of us. the hours at my new job aren't great, so there will be a lot of child care involved, but we'll get used to it, we'll adjust, and we'll get through. and we'll be ok. blithe prayed last night,
anyway, i thought i would update you on the goings-on over here, even though they have nothing to do with asher's health. but it's all part of our journey as a family. if you wouldn't mind, please pray for us in this new part of our journey. it's unfamiliar territory we're treading here, so any prayers, good vibes, crossed crossables would be much appreciated.
and since you're praying/vibing/crossing...
don't forget to keep praying for shawna and her family. they need it.
also, little ella in australia, who had a stroke the other night. she is still in the hospital. and not only is it a hard time for her, it is really hard on her mom, shannon. she is heartbroken. please continue to pray for ella, shannon, and dad neil.
not that i'm complaining.
anyway, since asher is doing better now, i knew that it was time for some things to change around here. namely,
i can get a job.
so last week, i began sending out my resume. and on wednesday this week, i went out around town, handing out resumes and applying for jobs. i wasn't picky. so out i went.
the first place i went to, i asked if they were hiring, and lo and behold, they were! in fact, the woman asked me right then and there if i could come in for an interview the next morning.
that's right, folks, the first place i went to invited me back for an interview.
so i went for the interview the next morning. my first interview in about 9 years. and guess what!
i got the job!!!
so i went for my first day today. i'll admit, it was a bit weird. and i'm exhausted. but it was good. and i enjoyed it. yes, at the end of my shift i was very ready to go home. i haven't had an actual job since my contract with the Canada Games ended in august 2001, so this whole working thing will take some getting used to. but i'll manage with all that.
as for the kids... yeah, it's going to be an adjustment. for all of us. the hours at my new job aren't great, so there will be a lot of child care involved, but we'll get used to it, we'll adjust, and we'll get through. and we'll be ok. blithe prayed last night,
God, please bless mommy in her new job. please be with her and help her, and don't let them make her work too hard, because i don't want her to work too hard. please be with her on this journey. and please be with me and bram and asher on this journey, too.yes, those are her words. we're all excited about this new turn in our journey, even though it's scary. but blithe knows... God is going through this with us, and we're not dealing with it on our own. so we'll be ok. i told the kids last night, "we'll get through. we'll adjust, and we'll do what we have to do." and bram agreed just as loudly, shrill-ly and enthusiastically as you would expect. asher just kept playing with chicky and elmo-y (who is not, in fact, the Elmo, but rather a yellow bunny). blithe said from her room, "yup! because that's what the heywood family does, right, mommy?"
anyway, i thought i would update you on the goings-on over here, even though they have nothing to do with asher's health. but it's all part of our journey as a family. if you wouldn't mind, please pray for us in this new part of our journey. it's unfamiliar territory we're treading here, so any prayers, good vibes, crossed crossables would be much appreciated.
and since you're praying/vibing/crossing...
don't forget to keep praying for shawna and her family. they need it.
also, little ella in australia, who had a stroke the other night. she is still in the hospital. and not only is it a hard time for her, it is really hard on her mom, shannon. she is heartbroken. please continue to pray for ella, shannon, and dad neil.
Monday, October 18, 2010
the plan for tomorrow
the cardiology clinic at SickKids called this morning, and i now have the times for our appointment.
we have to be at bloodwork for 8am (it's usually very busy there, with a long wait, so we need to get there bright and early). after that, we're scheduled for an echo at 9. once that's done, we'll likely have an ECG and then we'll see dr russell.
all this means... asher and i will be hitting the road around 4am. (in case you're wondering why we wouldn't just stay in hamilton overnight... i'm weird. i love driving the 401 in the wee hours.)
i will update tomorrow with all the details. and yes, i'm packing a bag. just in case. last time we had one of these "emergency" appointments, we were admitted, and i believe it's because i hadn't packed anything. haha so we're warding off the "admission spirits" by coming prepared. haha (ok, i'm not actually a superstitious person. but our pattern has been that, when i don't pack anything, we get admitted. when i come prepared for a few days' stay, they send us home. every time. haha) so please pray for us, that we will travel safely, that the appointment will go smoothly, and that asher will show these symptoms. or, if you're more inclined, you can feel free to pray that asher be healed. but since i don't believe that that is the miracle God will do/is doing with asher, i will be praying that he has these symptoms tomorrow.
he actually seems to be getting worse as time goes on. he doesn't have the usual amount of energy, and hokey doodle is he ever irritable!!! (he's usually very laid back and happy, so this is a huge change and pretty difficult, stressful and heartbreaking to deal with.) he's also still puffy and pale. so please pray for us tomorrow.
and some other prayer requests:
please pray for my friend shawna. right now she is on her way to mt sinai hospital for the second day in a row with some very concerning symptoms. she has a lot of health problems at the moment, and what she's facing is terrifying. my heart is just breaking for her. so please pray for her, and for the doctors, and for her family (she has 7 children at home). things are not looking good on a number of fronts for her right now. frankly, i'm really scared for her. i'll keep you updated on her, as well.
a lovely little baby hannah, whose parents i met at SickKids in the spring. hannah has TGA and a couple other heart defects, and well, she's not doing very well at the moment. she has also been in and out of emerg over the last week or so, with some very concerning symptoms. they expect that she will need another surgery in the near future, but they're waiting for it to be absolutely urgent. it's a stressful, frustrating, freaxiating thing to have to watch your baby's health deteriorate before they operate, so please pray for rachel and nick (hannah's dad). please also pray pray pray for hannah.
i think that's about it for now.
we have to be at bloodwork for 8am (it's usually very busy there, with a long wait, so we need to get there bright and early). after that, we're scheduled for an echo at 9. once that's done, we'll likely have an ECG and then we'll see dr russell.
all this means... asher and i will be hitting the road around 4am. (in case you're wondering why we wouldn't just stay in hamilton overnight... i'm weird. i love driving the 401 in the wee hours.)
i will update tomorrow with all the details. and yes, i'm packing a bag. just in case. last time we had one of these "emergency" appointments, we were admitted, and i believe it's because i hadn't packed anything. haha so we're warding off the "admission spirits" by coming prepared. haha (ok, i'm not actually a superstitious person. but our pattern has been that, when i don't pack anything, we get admitted. when i come prepared for a few days' stay, they send us home. every time. haha) so please pray for us, that we will travel safely, that the appointment will go smoothly, and that asher will show these symptoms. or, if you're more inclined, you can feel free to pray that asher be healed. but since i don't believe that that is the miracle God will do/is doing with asher, i will be praying that he has these symptoms tomorrow.
he actually seems to be getting worse as time goes on. he doesn't have the usual amount of energy, and hokey doodle is he ever irritable!!! (he's usually very laid back and happy, so this is a huge change and pretty difficult, stressful and heartbreaking to deal with.) he's also still puffy and pale. so please pray for us tomorrow.
and some other prayer requests:
please pray for my friend shawna. right now she is on her way to mt sinai hospital for the second day in a row with some very concerning symptoms. she has a lot of health problems at the moment, and what she's facing is terrifying. my heart is just breaking for her. so please pray for her, and for the doctors, and for her family (she has 7 children at home). things are not looking good on a number of fronts for her right now. frankly, i'm really scared for her. i'll keep you updated on her, as well.
a lovely little baby hannah, whose parents i met at SickKids in the spring. hannah has TGA and a couple other heart defects, and well, she's not doing very well at the moment. she has also been in and out of emerg over the last week or so, with some very concerning symptoms. they expect that she will need another surgery in the near future, but they're waiting for it to be absolutely urgent. it's a stressful, frustrating, freaxiating thing to have to watch your baby's health deteriorate before they operate, so please pray for rachel and nick (hannah's dad). please also pray pray pray for hannah.
i think that's about it for now.
Monday, August 9, 2010
please pray
i went to visit a "friend" today... it's in quotes because i'd never actually met her, but she's on my facebook and she's a heart mom, so it counts in a strange, 21st century kind of way...
shay's son Ali is in PCCU in london right now. ali has HRHS (like asher, but the other side of the heart). he is 5 years old, and he has plastic bronchitis (a complication which only happens in kids who have had the Fontan, which Ali had 2.5 years ago, and it has been a constant problem ever since).
he is not doing well.
he is in surgery right now. he has a chunk of something gross (a "cast") blocking his right lung and there is a nasty infection in there. he has been intubated for a few days.
his mom is really scared right now. i won't go into detail out of respect for her, but this is not good. please please please pray/send good vibes/cross crossables for Ali and Shay right now. whatever is afflicting asher is nothing compared to this, so please hold them in the Light. i will try to keep you posted. thank-you.
shay's son Ali is in PCCU in london right now. ali has HRHS (like asher, but the other side of the heart). he is 5 years old, and he has plastic bronchitis (a complication which only happens in kids who have had the Fontan, which Ali had 2.5 years ago, and it has been a constant problem ever since).
he is not doing well.
he is in surgery right now. he has a chunk of something gross (a "cast") blocking his right lung and there is a nasty infection in there. he has been intubated for a few days.
his mom is really scared right now. i won't go into detail out of respect for her, but this is not good. please please please pray/send good vibes/cross crossables for Ali and Shay right now. whatever is afflicting asher is nothing compared to this, so please hold them in the Light. i will try to keep you posted. thank-you.
Monday, June 14, 2010
"false" alarm
asher came home from emerg, so that's a good thing. :)
all the tests came back negative, other than some sugar in his urine. but they checked his blood sugar and that was fine, so we'll have to follow up with paeds in a few days for another urine sample, but other than that, everything was fine.
doc and i suspect we may have just picked up on something while it's still brewing, so we'll all be watching asher very closely over the next few days. this has happened before, that i picked up on something and we were sent home only to be admitted a couple days later with something weird. right now i suspect it might be another UTI or a migraine, but we'll have to wait and see. because really, it could also be nothing. which i would prefer, to be quite honest. it would be so nice if the little man could get a break for a while.
so please hold asher in the Light over the next few days.
and one more note: remember shawna and ethan, my friends from SickKids (in the list of kidlets at the end of the post, this is the second little guy named ethan; his momma shawna is a CHD warrior)? they have a big meeting at SickKids tomorrow. please hold them all in the Light. this will be a difficult meeting, potentially with a lot of tension and disagreement. what they all need is patience, grace, discernment, wisdom, humility, and to remember that they all want what is best for ethan, but that what he needs most is co-ordinated, compassionate and co-operative care. so please pray/cross your crossables/send good vibes/whatever you do for this meeting tomorrow. also, please remember shawna, as she has a lot on her plate right now. she's a strong woman, but some prayers never hurt anyone.
all the tests came back negative, other than some sugar in his urine. but they checked his blood sugar and that was fine, so we'll have to follow up with paeds in a few days for another urine sample, but other than that, everything was fine.
doc and i suspect we may have just picked up on something while it's still brewing, so we'll all be watching asher very closely over the next few days. this has happened before, that i picked up on something and we were sent home only to be admitted a couple days later with something weird. right now i suspect it might be another UTI or a migraine, but we'll have to wait and see. because really, it could also be nothing. which i would prefer, to be quite honest. it would be so nice if the little man could get a break for a while.
so please hold asher in the Light over the next few days.
and one more note: remember shawna and ethan, my friends from SickKids (in the list of kidlets at the end of the post, this is the second little guy named ethan; his momma shawna is a CHD warrior)? they have a big meeting at SickKids tomorrow. please hold them all in the Light. this will be a difficult meeting, potentially with a lot of tension and disagreement. what they all need is patience, grace, discernment, wisdom, humility, and to remember that they all want what is best for ethan, but that what he needs most is co-ordinated, compassionate and co-operative care. so please pray/cross your crossables/send good vibes/whatever you do for this meeting tomorrow. also, please remember shawna, as she has a lot on her plate right now. she's a strong woman, but some prayers never hurt anyone.
Sunday, May 16, 2010
please pray
hey folks! just a quick post tonight... and it's not about asher, because he's fine. he's got a cold, but he'll get over it. no worries. anyway....
i need to ask you, once again, to pray for asher's little friend brigid. she's not doing well. she's back in hospital with sepsis again, but a different bug than last time. this one is also from her gut that has been picked up by her blood. they've got a plan in place, but...
allison has had some pretty heartbreaking conversations with the docs, and things don't look good for brigid in the big picture. she's got some pretty heav-duty, complex issues going on, and well...
just pray. or whatever you do, please do it, and do it lots. this is a wonderful family, and brigid is such a sweetheart, and allison is a lovely woman and a great mom and honestly, one of the strongest, smartest people i know. i don't even know what to ask that you pray for... maybe give this a whirl... prayer when you don't have words. whatever you do, please do it now and over the next while. this is a very serious condition Brigid has, Allison is losing hope, even though she's doing amazingly well, but still... it's not looking good for her little girl right now, so please please pray. thanks. <3
i need to ask you, once again, to pray for asher's little friend brigid. she's not doing well. she's back in hospital with sepsis again, but a different bug than last time. this one is also from her gut that has been picked up by her blood. they've got a plan in place, but...
allison has had some pretty heartbreaking conversations with the docs, and things don't look good for brigid in the big picture. she's got some pretty heav-duty, complex issues going on, and well...
just pray. or whatever you do, please do it, and do it lots. this is a wonderful family, and brigid is such a sweetheart, and allison is a lovely woman and a great mom and honestly, one of the strongest, smartest people i know. i don't even know what to ask that you pray for... maybe give this a whirl... prayer when you don't have words. whatever you do, please do it now and over the next while. this is a very serious condition Brigid has, Allison is losing hope, even though she's doing amazingly well, but still... it's not looking good for her little girl right now, so please please pray. thanks. <3
Friday, April 9, 2010
please pass the barf bucket... and some new bedding... and the menu... and a candle...
and that about sums up this post today.
first up: the barf bucket. asher will be going early next week for his pacemaker. his HR was almost normal yesterday while he played, staying in the high 60s to high 80s all day. (and let me clarify "normal": the high 60s to high 80s is almost up to his pre-fontan resting HR... but this is our current normal, so i'll take it.) although, at one glorious moment, the "tachy" alarm went off. ah, sweet tachy, how i've missed thee. (oh, for those who don't live and breathe by ECG monitors: "tachy" is short for "tachycardia" which is fast heart rate. a beautiful alarm to hear after spending 3 days with atropine at the bedside because of serious brady. LOL) then this morning on rounds, balki was giving report, and he said that asher had a good night with no episodes, and his HR stayed in the low 40s all night. yes, folks, you read that right. at this point, low 40s is good.then balki continued: "and i saw the holter report from london, and it was impressive . it showed his heart rate going as low as 28, with some long pauses." i think i'm going to have to explain what "impressive" means to this fellow; perhaps "remarkable" would have been a better word. or "terrifying." or even "nauseating." all good words, and much more applicable than "impressive." but that's just me, and i'm obsessed with words (in case you hadn't noticed already).
second: some new bedding. this is asher being asher. sigh/LOL. this morning, he wanted to pour some water into his skim milk (apparently it's not watery enough. blech!) so he grabbed my water bottle, turned it upside down... and missed the milk. but fortunately, he managed to hit the table, the bed, and my pants! well, isn't that special. but i suppose it's wonderful to know that even in the hospital (which, btw, he doesn't want to leave. he informed me of this this morning over breakfast. too bad, kid, this time next week we are outta here!) he is still his usual, mischievous, 3-year-old self. but now i need to remake his bed. and so it goes...
third: the menu. yesterday, i'll admit, i was exhausted and overwhelmed, and ok, i'll admit, i probably (read: definitely) haven't been taking good care of myself. so, my dear friend DW came over in the evening. we hung around until asher was asleep... and then we went out. we "meandered" (toronto-style, meaning "not quite running") over to college street, and found a delightful little establishment, and had a good time. she introduced me to a friend of hers (teehee) and we hung out and talked and had a deep bib-interp-type conversation, and then we "meandered" back to the hospital. then we talked some more, and tried to help someone out, but he disappeared before we could get to him. so it goes in TO, i suppose, but at least we wanted to help. next time we'll react right away... i hope. we've each been so blessed in the past (and present)... it's such a joy to get the chance to pay it forward.
so there's the daily report from asherland. i'll try to update over the weekend, but it will be difficult to get to a computer. i'm looking forward to a "boring weekend" (dr c's words)... but at least i'll have some company. the kidley-winks are coming up tomorrow, and i hope to have some other company at some point this weekend... dr c's wife. yes, this is my life, folks: i'm going to be chatting with my son's heart surgeon's wife. it's a long story about how this came about, and why i'll be talking to her... maybe one of these days, i'll fill you in, but for now i'm holding it close to my heart (at least in the blogosphere. i've told some people already, but it's too amazing to put into written words right now, so you, my dear readers, will just have to be patient) and i'm looking forward to an amazing opportunity.
but while i have your attention, thank-you for your prayers/thoughts/vibes for little ethan. his surgery went well the other day, and the plan is to bring him back up to the ward today! i've been talking to his mother a good deal, and it's funny, the people who come into our lives in the hospital. ethan & co. were in the room next to us post-fontan, then we all went home on the same day. when we were transfered back here the other week, ethan & co. were in the room next to us again, and we all went home on the same day. and when we arrived here on tuesday, ethan & co. were in the room across the hall from us! funny how... but please continue to hold him and his family in the Light. he's doing well now as he recovers from his VSD closure, but now we're praying that he stabilizes in the big picture, and that he and his family can finally have some peace. CHD is stressful and scary, regardless of the severity, but at least we can be graced with other families who have "been there, done that."
and since you're on your knees, please continue to remember brigid and allison, who will be in London hospital for another couple weeks. brigid is a complex (and delightful!) girl, and allison is an amazing mom, but this admission is terrifying and stressful and worrisome. they need some rest, some peace, some stability, and something as close to normal as possible. i've mentioned them before, so i won't go into too many details, other than that right now, B is battling sepsis with weird and rare bugs, and it's throwing off a lot of systems for her, and her mom is pretty scared. send them Love and hold them in the Light over the next couple of weeks, and i'll try my best to keep you updated on her.
also, please pray/cross your crossables/send good vibes out there for mason and his mother stephanie, as well. this is another family we met in london during our first admit there in march. mason is another complex child with multiple issues, and had a fundoplication last week. and stephanie needs prayers as well, as she doesn't seem to be coping very well right now, based on her FB status today. please hold them in the Light, too.
that's it for now. i'll try to get online at some point over the weekend. if i don't manage to update, please don't freak out. computer availability is limited without the resource centre, so a lack of updates is neither good nor bad... it just means i don't have a computer nearby. so... ttyl! :)
first up: the barf bucket. asher will be going early next week for his pacemaker. his HR was almost normal yesterday while he played, staying in the high 60s to high 80s all day. (and let me clarify "normal": the high 60s to high 80s is almost up to his pre-fontan resting HR... but this is our current normal, so i'll take it.) although, at one glorious moment, the "tachy" alarm went off. ah, sweet tachy, how i've missed thee. (oh, for those who don't live and breathe by ECG monitors: "tachy" is short for "tachycardia" which is fast heart rate. a beautiful alarm to hear after spending 3 days with atropine at the bedside because of serious brady. LOL) then this morning on rounds, balki was giving report, and he said that asher had a good night with no episodes, and his HR stayed in the low 40s all night. yes, folks, you read that right. at this point, low 40s is good.
second: some new bedding. this is asher being asher. sigh/LOL. this morning, he wanted to pour some water into his skim milk (apparently it's not watery enough. blech!) so he grabbed my water bottle, turned it upside down... and missed the milk. but fortunately, he managed to hit the table, the bed, and my pants! well, isn't that special. but i suppose it's wonderful to know that even in the hospital (which, btw, he doesn't want to leave. he informed me of this this morning over breakfast. too bad, kid, this time next week we are outta here!) he is still his usual, mischievous, 3-year-old self. but now i need to remake his bed. and so it goes...
third: the menu. yesterday, i'll admit, i was exhausted and overwhelmed, and ok, i'll admit, i probably (read: definitely) haven't been taking good care of myself. so, my dear friend DW came over in the evening. we hung around until asher was asleep... and then we went out. we "meandered" (toronto-style, meaning "not quite running") over to college street, and found a delightful little establishment, and had a good time. she introduced me to a friend of hers (teehee) and we hung out and talked and had a deep bib-interp-type conversation, and then we "meandered" back to the hospital. then we talked some more, and tried to help someone out, but he disappeared before we could get to him. so it goes in TO, i suppose, but at least we wanted to help. next time we'll react right away... i hope. we've each been so blessed in the past (and present)... it's such a joy to get the chance to pay it forward.
so there's the daily report from asherland. i'll try to update over the weekend, but it will be difficult to get to a computer. i'm looking forward to a "boring weekend" (dr c's words)... but at least i'll have some company. the kidley-winks are coming up tomorrow, and i hope to have some other company at some point this weekend... dr c's wife. yes, this is my life, folks: i'm going to be chatting with my son's heart surgeon's wife. it's a long story about how this came about, and why i'll be talking to her... maybe one of these days, i'll fill you in, but for now i'm holding it close to my heart (at least in the blogosphere. i've told some people already, but it's too amazing to put into written words right now, so you, my dear readers, will just have to be patient) and i'm looking forward to an amazing opportunity.
but while i have your attention, thank-you for your prayers/thoughts/vibes for little ethan. his surgery went well the other day, and the plan is to bring him back up to the ward today! i've been talking to his mother a good deal, and it's funny, the people who come into our lives in the hospital. ethan & co. were in the room next to us post-fontan, then we all went home on the same day. when we were transfered back here the other week, ethan & co. were in the room next to us again, and we all went home on the same day. and when we arrived here on tuesday, ethan & co. were in the room across the hall from us! funny how... but please continue to hold him and his family in the Light. he's doing well now as he recovers from his VSD closure, but now we're praying that he stabilizes in the big picture, and that he and his family can finally have some peace. CHD is stressful and scary, regardless of the severity, but at least we can be graced with other families who have "been there, done that."
and since you're on your knees, please continue to remember brigid and allison, who will be in London hospital for another couple weeks. brigid is a complex (and delightful!) girl, and allison is an amazing mom, but this admission is terrifying and stressful and worrisome. they need some rest, some peace, some stability, and something as close to normal as possible. i've mentioned them before, so i won't go into too many details, other than that right now, B is battling sepsis with weird and rare bugs, and it's throwing off a lot of systems for her, and her mom is pretty scared. send them Love and hold them in the Light over the next couple of weeks, and i'll try my best to keep you updated on her.
also, please pray/cross your crossables/send good vibes out there for mason and his mother stephanie, as well. this is another family we met in london during our first admit there in march. mason is another complex child with multiple issues, and had a fundoplication last week. and stephanie needs prayers as well, as she doesn't seem to be coping very well right now, based on her FB status today. please hold them in the Light, too.
that's it for now. i'll try to get online at some point over the weekend. if i don't manage to update, please don't freak out. computer availability is limited without the resource centre, so a lack of updates is neither good nor bad... it just means i don't have a computer nearby. so... ttyl! :)
Saturday, April 3, 2010
the most heartbreaking afternoon... and the most heartwarming afternoon... keep praying
my FB status right now says:
and remember, allison, you and brigid are loved. lots of hugs to you, and i'm here when you need me.
Heather has spent the afternoon watching asher crash. he fell asleep around 3:30, and ever since, his HR has been dipping. and each time, it gets lower. he now gets down to 30 and stays there for several seconds. it's VERY hard to watch, even though i know this is EXACTLY what we need him to do. pray that he keeps doing this, but please make sure you also add that he doesn't code. this is terrifying.meantime, brigid isn't doing so well, either. allison and i both allowed ourselves to cry this afternoon, because we're both in crap positions. funny thing is, we've only known each other for 2 weeks, but we know we'll both be there for each other... because we've both been there, we understand... it's nice to have someone to cry with (and to laugh with... at the same time! LOL)... but seriously, you can't imagine how painful these admissions are for either of us. it's hard to cling to 86% (for her) and 70% (for me) as you see your child in these conditions. but it's what we do. too often. just pray we get to keep clinging to these numbers for a very, very, very long time.
and remember, allison, you and brigid are loved. lots of hugs to you, and i'm here when you need me.
prayer for a friend
hi, everyone!
believe it or not, asher is not the only sick kid in the world. lol so this morning, i'm asking for prayer for another little girl we (asher and i) know.
her name is brigid. i'm not going to go into all her "quirks" (you can check out her blog if you're interested), but suffice it to say, she is a very sick little girl right now. i met and befriended her mother while we shared a room during our london admission last month, and wow! what a family! i swear allison is one of the strongest mothers i have ever met. truly remarkable.
right now brigid is back in hospital with pneumonia and sepsis. in fact, she has several bugs growing right now. this isn't good. asher's had sepsis, so i know exactly how terrifying and brutal and heartbreaking (figuratively and literally) it can be. brigid is going into the OR at 9:00 this morning, but of course, as these kids are wont to do, she has thrown everyone a curveball... her INR won't come down (INR is what they call blood clotting time)... and she's not on bloodthinners. kind of a problem, and this is after several doses of vitamin K (a med that is supposed to promote clotting). they're planning to give her a dose of another med before they go in, so please pray that it works.
but please just pray for brigid and her mother (and the rest of the family, as well, since you're already on your knees). this is a scary time for them, brigid is very sick right now. so please pray that they can get her INR under control, that she'll make it through the procedure uneventfully (they deserve something uneventful), that they'll get rid of the bugs, that allison will have the strength to keep going (these roller coasters are exhausting), that the rest of the family will have peace... and since we know God can and does work miracles, pray for healing. i mean, complete healing. brigid has a very rare, very complex condition... please please pray for them all. and don't forget the docs. they go into paeds because they love kids, and seeing their patients suffer like this is stressful for them, too. so pray for guidance, wisdom, strength, compassion, all that good stuff. thanks so much.
and remember, allison, you are Loved.
believe it or not, asher is not the only sick kid in the world. lol so this morning, i'm asking for prayer for another little girl we (asher and i) know.
her name is brigid. i'm not going to go into all her "quirks" (you can check out her blog if you're interested), but suffice it to say, she is a very sick little girl right now. i met and befriended her mother while we shared a room during our london admission last month, and wow! what a family! i swear allison is one of the strongest mothers i have ever met. truly remarkable.
right now brigid is back in hospital with pneumonia and sepsis. in fact, she has several bugs growing right now. this isn't good. asher's had sepsis, so i know exactly how terrifying and brutal and heartbreaking (figuratively and literally) it can be. brigid is going into the OR at 9:00 this morning, but of course, as these kids are wont to do, she has thrown everyone a curveball... her INR won't come down (INR is what they call blood clotting time)... and she's not on bloodthinners. kind of a problem, and this is after several doses of vitamin K (a med that is supposed to promote clotting). they're planning to give her a dose of another med before they go in, so please pray that it works.
but please just pray for brigid and her mother (and the rest of the family, as well, since you're already on your knees). this is a scary time for them, brigid is very sick right now. so please pray that they can get her INR under control, that she'll make it through the procedure uneventfully (they deserve something uneventful), that they'll get rid of the bugs, that allison will have the strength to keep going (these roller coasters are exhausting), that the rest of the family will have peace... and since we know God can and does work miracles, pray for healing. i mean, complete healing. brigid has a very rare, very complex condition... please please pray for them all. and don't forget the docs. they go into paeds because they love kids, and seeing their patients suffer like this is stressful for them, too. so pray for guidance, wisdom, strength, compassion, all that good stuff. thanks so much.
and remember, allison, you are Loved.
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