i just posted a link on the sidebar to the Children's Hospital of Philadephia, and their information on DiGeorge Syndrome. feel free to check it out; it gives some pretty good information.
in fact, i would highly recommend the Children's Hospital of Philadelphia website if you're looking for all kinds of information on children's health. it's a really good hospital, great reputation (and, coincidentally, the hybrid is their standard approach for the first stage surgery for HLHS, and they now routinely perform Dr Caldarone's arch reconstruction technique during the second stage, as well), and their website is a fantastic resource for information. so feel free to peruse at your leisure, and learn all about kids' health. enjoy!
and i'll put the link here, too, but i've included it in the "helpful links" section on the right sidebar, bottom link.
http://www.chop.edu/consumer/your_child/condition_section_index.jsp?id=-9065
Thursday, July 31, 2008
Wednesday, July 30, 2008
oh, why can't he just pee already?!
so, we're at the tail end of our little vacation. mom and i took the kids to the ROM yesterday, which was awesome. and because asher has a disability (or several), i could get in for free because i'm his "attendant." delightful! i love doing expensive things for cheap! :)
anyway, the real reason we're in toronto today is because asher had immunology clinic this afternoon. it was a follow-up appointment from his appointment in january. i figured they'd tell us that there's nothing wrong with his immune system, he just spends too much time in hospitals, we don't need to see him again so take him home now before he gets sick again. haha, if only!
turns out, some of his t-cells are low. for those who like the technical information, his CD4 count is 718, and should be at least 1000 (the "control" they used had over 2000). and his CD8 count is at 234, and it should be at 400. this can pose some problems, but the fact is that while his t-cells are pretty low, the ones he has work well. so it's a concern, but he doesn't need to be isolated. just some hand sanitizer and such, but otherwise, treat him like a normal, healthy kid.
they are also still considering DiGeorge Syndrome as a possibility. of course, not the classic "chromosome 22q11 deletion" kind of digeorge, but some other variety. apparently, there are several different strains of the syndrome, and since asher lacks some of the more classic signs (eg, facial deformities), they're looking into a sneakier strain. because of course asher can't have the more common, classic variation of the syndrome! that just wouldn't be asher-ish, now, would it? sheesh!
i know most of you don't know anything about DiGeorge Syndrome, so i will try to find a good link about it and post it on the side bar so you can learn more. but that will have to wait till at least tonight, but probably sometime tomorrow at the earliest. in the meantime, here's a list of the usual issues that comprise DiGeorge:
anyway, the real reason we're in toronto today is because asher had immunology clinic this afternoon. it was a follow-up appointment from his appointment in january. i figured they'd tell us that there's nothing wrong with his immune system, he just spends too much time in hospitals, we don't need to see him again so take him home now before he gets sick again. haha, if only!
turns out, some of his t-cells are low. for those who like the technical information, his CD4 count is 718, and should be at least 1000 (the "control" they used had over 2000). and his CD8 count is at 234, and it should be at 400. this can pose some problems, but the fact is that while his t-cells are pretty low, the ones he has work well. so it's a concern, but he doesn't need to be isolated. just some hand sanitizer and such, but otherwise, treat him like a normal, healthy kid.
they are also still considering DiGeorge Syndrome as a possibility. of course, not the classic "chromosome 22q11 deletion" kind of digeorge, but some other variety. apparently, there are several different strains of the syndrome, and since asher lacks some of the more classic signs (eg, facial deformities), they're looking into a sneakier strain. because of course asher can't have the more common, classic variation of the syndrome! that just wouldn't be asher-ish, now, would it? sheesh!
i know most of you don't know anything about DiGeorge Syndrome, so i will try to find a good link about it and post it on the side bar so you can learn more. but that will have to wait till at least tonight, but probably sometime tomorrow at the earliest. in the meantime, here's a list of the usual issues that comprise DiGeorge:
- severe heart defects, particularly involving underdevelopment
- kidney issues, especially misshapen or underdeveloped kidneys
- immunocompromise, especially t-cell deficiencies
- low calcium levels
- feeding issues
- facial deformities
any of those sound familiar? yeah, that's why they're stuck on this digeorge query. the problem is, though, that the test immunology does for the syndrome, namely looking for a chromosome deletion (chromosome 22q11, for those who like to know) came back negative (translation: asher has that particular chromosome). there are other tests that could be done, but not by immunology. for further digeorge testing, he would require a genetics consult. so that is coming. beyond that, we have another immunology appointment in october, when they will do more bloodwork to assess his t-cell situation.
ok, i just remembered that some of you may not know what t-cells are, either. basically, they're white blood cells that fight off disease, particularly bacterial disease. which might explain why asher is so prone to weird bugs in weird places. remember that the t-cells he has work well, but still, they're low.
ok, i know i'm forgetting stuff. what else is there? man, i wish i had my notes in front of me. this blog post was kind of an impulse thing, something to do to pass the time. arg. ok, um, i'm supposed to talk to our nephrologist next month about a referal to urology regarding his frequent UTIs. we're also supposed to have nephro arrange for another VCUG, which delightful. ugh. yet another test where i have to pin asher down while he screams and fights because they're putting tubes in unholy places. oh gosh, how soon can we get in for that? i can't wait. let's see, anything else? i don't think so. i think that's it. oh, the title of this post. i should probably explain. immunology does a lot of bloodwork. and apparently, they also wanted a urine sample today. so, we're sitting here in the hospital, waiting for him to pee. you wouldn't think that would be a problem for a kid on diuretics, but you'd be wrong my friend! almost 2 hours we've been waiting! but now he has peed, so we're off to phlebotomy so they can deal with that. ok, talk to you later! :)
Saturday, July 26, 2008
Asher's new pump
i'm sure we all remember the fiasco with asher's pump earlier this month. if you've been following the blog, you'll remember my rant about the evils of the Kangaroo ePump. you may also remember that i ordered a new pump for Asher, a different one than we'd had previously.
i've had several people ask when i was going to post about the new pump (which arrived on wednesday). so, here you go. remember, this pump is designed for kids like asher: wee ones with serious feeding issues. and, it's designed not only to feed them, but to blend in with their lives and be almost unnoticeable. so, here you go. i give you, the EnteraLite Infinity!
no, that's not a giant hand holding an average-sized pump. that's my hand, which is nicely average-sized (at least something on me is! lol), and the pump is just that small! and to say it's light is an understatement. honestly, there's almost no weight to it at all! and some further benefits include: if it gets dirty, as a toddler's pump is bound to do, you can run it under water to clean it!!! that was a mother who thought of that, i tell you what. and it's so easy to use. that was a technology-impaired-yet-dependent mother who thought of that, i tell you what. anyway, there it is. the long awaited quality pump. so far, everyone i've encountered whose child uses this pump loves it, and i have to say, i agree wholeheartedly! yup, i heart asher's new pump.
now, i know you're wondering, but heather, that's all well and good that it's small and easy to use and water-resistant and all, but really, how does asher feel about it? well, i'm glad you asked.
i took the kids for a walk the other night. here's some pics from the parkette/flowerbeds we visited:
i've had several people ask when i was going to post about the new pump (which arrived on wednesday). so, here you go. remember, this pump is designed for kids like asher: wee ones with serious feeding issues. and, it's designed not only to feed them, but to blend in with their lives and be almost unnoticeable. so, here you go. i give you, the EnteraLite Infinity!
no, that's not a giant hand holding an average-sized pump. that's my hand, which is nicely average-sized (at least something on me is! lol), and the pump is just that small! and to say it's light is an understatement. honestly, there's almost no weight to it at all! and some further benefits include: if it gets dirty, as a toddler's pump is bound to do, you can run it under water to clean it!!! that was a mother who thought of that, i tell you what. and it's so easy to use. that was a technology-impaired-yet-dependent mother who thought of that, i tell you what. anyway, there it is. the long awaited quality pump. so far, everyone i've encountered whose child uses this pump loves it, and i have to say, i agree wholeheartedly! yup, i heart asher's new pump.now, i know you're wondering, but heather, that's all well and good that it's small and easy to use and water-resistant and all, but really, how does asher feel about it? well, i'm glad you asked.
i took the kids for a walk the other night. here's some pics from the parkette/flowerbeds we visited:
"gosh, i wish i could get out of this stroller and play with blithe and bram. sigh. the hard, hard life of a technology-dependent toddler. i would so enjoy a daily constitutional without being strapped down in this beast of a stroller. i want to be free! oh, why can't i just be free?!"
so, seeing the pitiful look on my toddler's face, i decided to let him loose in the park. unfortunately, i can't tell you what he thought of that....
because i couldn't catch him! look at him go! but heather, you ask, where's the pump? well, let me tell you. see that black backpack he's wearing? it doesn't hold his favourite magazines or the toys he can't live without. i don't think it would even hold his timmies. unless that timmies was cooled off significantly and it's going through his pump, that is! that's right, folks, that little backpack holds the pump. asher loves wearing it. i think he feels like a big boy with it on, because he sees blithe and bram wearing theirs all the time. and now, because he's not tethered to an IV pole 20 hours a day, he can keep up with them and play with them just like any normal/healthy toddler would! i'm telling you, since getting this pump, he's happy as a pig in a beautiful flower garden with its two older siblings running around equally happy.
and you should see him around the house now. he's so free, and he's in such better spirits now. he gets so excited in the mornings when he puts on the backpack, and he is overjoyed by the freedom he now has. the first time i watched him roaming with it on, i had tears in my eyes. honestly, he's so quick (ok, the tears were partly a what-am-i-going-to-do-now thing, but i was mostly just happy for him) and so happy, and we don't have to worry about the pole getting caught on anything, which means there's less frustration for him, less fear for me, less chance of the pole falling on him (you can imagine we've had a few close calls with that, when it toppled and missed him by less than an inch!), and way less chance of his tube getting caught on something and ripping out. oh, i can't tell you how happy we all are with this pump.
so, to dr bertoldi and steve peters and the people at yureks and keri for offering to fundraise for us and everyone who is even nominally involved in getting him this pump, thank-you thank-you thank-you thank-you thank-you!!!
now i just have to go catch him because he's raced off... again.
Friday, July 25, 2008
the tapestry of Life
there are some events in life that stay with you forever. events like your first kiss. the birth of your children. saving someone's life.
these events become carved into your soul and leave you changed, whether you know it or not. suddenly, you're a whole new person. a lover. a mother. a saviour.
and inevitably, these events touch the spirits of those around you.
over 19 months ago, on 10 december 2006, i took my 8-day-old baby to emerg because he was having trouble breathing. they sent asher on to london, where he could be helped, or at least diagnosed.
my first comfort was from the doctor there. i didn't catch her name, but i liked her. i remember thinking that baby blue cashmere seemed an odd choice for working in emerg, but it was a pretty sweater, and i was in shock, so i didn't think anymore about it. and you know, despite the stress of, well, asher, she had a smile on her face and spoke very kindly to me.
and then, once the cardiologist (dr p) showed up, she was gone. well, maybe not. in fact, thinking back now as i type this, i think she was still there, telling the nurses what to do while dr p echoed. but i didn't really see her anymore. to me, she was there, and then she wasn't.
and i have looked for her, off and on in the intervening months. you would think, and understandably so, that we would have met her again by now. but no. i still had no idea who she was.
i have kept a few things from that day. i still have a lock of asher's hair from when they had to shave his head for IV access. and i have all his hospital bracelets from those first weeks in hospital. i know who all the doctors were. except one. i have the bracelet, it's in front of me now. the doctor's name is L Purcell. i have looked at this bracelet over the last year and a half and wondered who this doctor is. which one were they? we met so many. it's hard to say.
last night in emerg, i asked which doc was on, as is my wont anymore. there were two on duty. i knew one, having seen her many times before, but i didn't recognize the other name. we were taken in, and put in the little baby room off in the corner.
through the doorway, i saw a woman walk down the hall and into the staff area. she had a stethoscope, but was dressed very nicely. so she wasn't a nurse or RT, since they're usually in scrubs. and i thought that a silky black-and-white sleeveless blouse seemed an odd choice for a doctor to wear to work in emerg, and then i gasped! dr gloor was sitting behind the desk, filling out paperwork or something. i asked her if that woman i saw was dr purcell, and she smiled and said yes.
"she's the one we saw when asher came in that first morning!" i said. dr gloor smiled again and replied, "yup, that was her. and the rest of us were in the back going, 'thank God it's not me!'" and we laughed.
after a while, dr purcell came in to see us. she was not our attending physician but she came in anyway. she was truly delighted to see asher. she couldn't get over how big he is now, because she hadn't seen him since that first day, those first minutes before we were sent upstairs to the Unit. he was so small then.
she reflected on how "tense" that morning was. she remembered dr p echo-ing asher and being very pessimistic. she remembered him talking to me and telling me that asher was going to die. but she hadn't heard anything about asher since then, so she had no idea if he made it or not, or what his journey has been like.
but she remembered.
her life was touched by that morning.
i learned something last night. that morning, now so long ago, wasn't asher's trauma. nor was it my trauma. it was all of ours. in that moment, all our lives came crashing together, suddenly, horrifically, unexpectedly. and in that brief time, all our lives became inextricably woven together. we're part of a story, part of a journey, and we're in it together. we will never again walk separate or even parallel paths. our spirits are bound together, and we will forever be part of one another's lives. dr p has become one of the people i cherish and admire most in the world (it's true, pepy, i love you!). sarah, one of the nurses, has become as close to a friend as a mother can have in emerg. and i hadn't seen dr purcell since that first morning, but i knew her the second i saw her last night.
asher's wonky heart, and his courageous battle, is a chord that binds us all together in a most breathtaking way. not just me and asher and the nurses and doctors. you, too, are bound together with us. we've now become threads in the beautiful tapestry of life. not just of asher's life. nor of mine, really. ours is the tapestry of Life itself, and we're all woven together in it.
and it's beautiful.
these events become carved into your soul and leave you changed, whether you know it or not. suddenly, you're a whole new person. a lover. a mother. a saviour.
and inevitably, these events touch the spirits of those around you.
over 19 months ago, on 10 december 2006, i took my 8-day-old baby to emerg because he was having trouble breathing. they sent asher on to london, where he could be helped, or at least diagnosed.
my first comfort was from the doctor there. i didn't catch her name, but i liked her. i remember thinking that baby blue cashmere seemed an odd choice for working in emerg, but it was a pretty sweater, and i was in shock, so i didn't think anymore about it. and you know, despite the stress of, well, asher, she had a smile on her face and spoke very kindly to me.
and then, once the cardiologist (dr p) showed up, she was gone. well, maybe not. in fact, thinking back now as i type this, i think she was still there, telling the nurses what to do while dr p echoed. but i didn't really see her anymore. to me, she was there, and then she wasn't.
and i have looked for her, off and on in the intervening months. you would think, and understandably so, that we would have met her again by now. but no. i still had no idea who she was.
i have kept a few things from that day. i still have a lock of asher's hair from when they had to shave his head for IV access. and i have all his hospital bracelets from those first weeks in hospital. i know who all the doctors were. except one. i have the bracelet, it's in front of me now. the doctor's name is L Purcell. i have looked at this bracelet over the last year and a half and wondered who this doctor is. which one were they? we met so many. it's hard to say.
last night in emerg, i asked which doc was on, as is my wont anymore. there were two on duty. i knew one, having seen her many times before, but i didn't recognize the other name. we were taken in, and put in the little baby room off in the corner.
through the doorway, i saw a woman walk down the hall and into the staff area. she had a stethoscope, but was dressed very nicely. so she wasn't a nurse or RT, since they're usually in scrubs. and i thought that a silky black-and-white sleeveless blouse seemed an odd choice for a doctor to wear to work in emerg, and then i gasped! dr gloor was sitting behind the desk, filling out paperwork or something. i asked her if that woman i saw was dr purcell, and she smiled and said yes.
"she's the one we saw when asher came in that first morning!" i said. dr gloor smiled again and replied, "yup, that was her. and the rest of us were in the back going, 'thank God it's not me!'" and we laughed.
after a while, dr purcell came in to see us. she was not our attending physician but she came in anyway. she was truly delighted to see asher. she couldn't get over how big he is now, because she hadn't seen him since that first day, those first minutes before we were sent upstairs to the Unit. he was so small then.
she reflected on how "tense" that morning was. she remembered dr p echo-ing asher and being very pessimistic. she remembered him talking to me and telling me that asher was going to die. but she hadn't heard anything about asher since then, so she had no idea if he made it or not, or what his journey has been like.
but she remembered.
her life was touched by that morning.
i learned something last night. that morning, now so long ago, wasn't asher's trauma. nor was it my trauma. it was all of ours. in that moment, all our lives came crashing together, suddenly, horrifically, unexpectedly. and in that brief time, all our lives became inextricably woven together. we're part of a story, part of a journey, and we're in it together. we will never again walk separate or even parallel paths. our spirits are bound together, and we will forever be part of one another's lives. dr p has become one of the people i cherish and admire most in the world (it's true, pepy, i love you!). sarah, one of the nurses, has become as close to a friend as a mother can have in emerg. and i hadn't seen dr purcell since that first morning, but i knew her the second i saw her last night.
asher's wonky heart, and his courageous battle, is a chord that binds us all together in a most breathtaking way. not just me and asher and the nurses and doctors. you, too, are bound together with us. we've now become threads in the beautiful tapestry of life. not just of asher's life. nor of mine, really. ours is the tapestry of Life itself, and we're all woven together in it.
and it's beautiful.
well, thank-you very much, but i'd prefer *not* to repeat last night. and... MORE AWESOME CARDIO NEWS!!!!!!!!!!!!!!!!!!!!!
ok, long story short (yeah, right, lol): i took asher in to emerg last night because he was grey. not pale. not blue. grey. yeah. well... when they looked at his colour, combined with a few other items from his recent history (sweating around the head, puffy eyes/hands/feet, reflux, sleep apnea, some coughing, i think that's about it), they suspected (mild) congestive heart failure. so... they kept us overnight in a freezing room, in which asher did not go to sleep until about 1am and i only dozed off and on in a very hard rocking chair for a couple hours. so now i'm exhausted and sore. the delights of emerg. anyway, cardiology ordered an echo this morning, and it's not his heart. so that was a relief. i still don't quite know what it is that's making him this colour, but it's not his heart, so frankly, i don't care. all that being said, i'm keeping an eye on him, since grey tends to indicate one of two things:
- heart issues (which it isn't this time)
- infection. somewhere. usually a weird bug in a weird place.
if it's an infection, well, i'll discuss it with the immunologist on wednesday at SickKids and see what he says. ...
also, in the title of this post, i promised some exciting cardio news. well, here it is:
THEY'VE SIGNED ANOTHER CARDIOLOGIST!!!! THAT GIVES US 4!!!!!!!!
why am i so excited about this? to be honest, i actually take great comfort in knowing that there are as many doctors as possible who know asher. i know that sounds odd, and somewhat horrifying, but here's my reasoning: it comforts me to know that, when we come in to emerg, for example, it doesn't matter which cardio is on call, they all know asher. haha, funny thing about that: every once in a while i wonder who asher's new doc will be, but then i think to myself, really, does it matter? we're going to get to know them all very well very quickly.
ok, i really need to stop typing this post. i still have more to say, but it's a whole different tone, so i'll stop for a moment, pick up the remnants of bram's supper off the floor, and switch gears a little. talk to you later! :)
Thursday, July 24, 2008
in case you're interested...
yes, i know that by now this is very old news, but i just found this article right now. in case you're interested, it has some background information about the new cardiologists coming to london.
http://www.lhsc.on.ca/About_Us/LHSC/Media_Room/Media_Releases/2008/apr16.htm
http://www.lhsc.on.ca/About_Us/LHSC/Media_Room/Media_Releases/2008/apr16.htm
Wednesday, July 23, 2008
asher's new pump
oh, the tale i could tell if i cared to... some of you know it, the rest of you, well, be happy you don't. suffice it to say, KendallTyco Healthcare, the makers of the notorious/crappy ePump, is a terrible company to deal with. bad customer service, worse "tech support" (i ask, how can they call themselves "tech" when they don't even know how to answer a freakin' phone, and how can they call themselves "support" when they're never available to help you? i mean, seriously, people!). oh, yeah, and crappy pumps.
long story short... i have a Joey pump from them, which, once i (finally) receive the backpack that was promised to me almost 3 weeks ago (which is coming in all the way from London, ON, by the way), i will (finally) have all the pieces required for this pump to be usable. not that i'm going to use it much. it's going to be the backup.
but.... we also now have the EnteraLite Infinity, which thrills my little heart. every parent i've "talked" to (on a discussion board in our CHD group on Facebook) loves this pump, and i've gotta say, even though we've only been running it for the last 3 hours or so, I LOVE THIS PUMP!!!!!! and here's the miraculous tale of how it came into our possession:
remember the other week, way back when, when i said that i was going to order this pump, believing in a miracle to be able to afford it? remember that? and then keri offered to do some fundraising, to help pay for the pump? well... i called the local pharmacy and told them to go ahead and order the pump, but to set up an account for me, and i'd pay it off as i had the money to do so. but, at the same time that i was on the phone with them....
dr b, asher's paediatrician, was at a meeting at the office of our local MPP. for some reason, dr b thought of asher and all the trouble we're having with the pump, and that we need to order a new one, but we can't pay for it, but asher needs it in order to stay alive. MPP's response? "oh, yeah, we can cover that for them. up to $1500. no problem. just order it and send the invoice here. i'll forward it on." just like that. covered. paid for. completely. i have no looming debt hanging over my head, no one has to do any extra work for us, nothing, just a pump completely paid for by some foundation MPP-boy knows about.
HOW AWESOME IS THAT, EH? TOTALLY A MIRACLE, I'D SAY!!!! GOD ROCKS!!!!!!!
so, there you have it. in the morning, i'll take some pictures, hopefully with asher sporting his new backpack (which is too cute - so small!!!), but i want you all to see how great this pump is! it's absolutely tiny, and immersable in running water, and light as a feather!!! i love it!!!
ok, there's the tale of the pump. now, i'm tired, asher's meds are about an hour late, and i still have my whole bedtime routine of journaling and reading ahead of me. well, have a good night, and i'll likely talk to you tomorrow. (i'm so happy to have my computer back, can you tell? lol)
long story short... i have a Joey pump from them, which, once i (finally) receive the backpack that was promised to me almost 3 weeks ago (which is coming in all the way from London, ON, by the way), i will (finally) have all the pieces required for this pump to be usable. not that i'm going to use it much. it's going to be the backup.
but.... we also now have the EnteraLite Infinity, which thrills my little heart. every parent i've "talked" to (on a discussion board in our CHD group on Facebook) loves this pump, and i've gotta say, even though we've only been running it for the last 3 hours or so, I LOVE THIS PUMP!!!!!! and here's the miraculous tale of how it came into our possession:
remember the other week, way back when, when i said that i was going to order this pump, believing in a miracle to be able to afford it? remember that? and then keri offered to do some fundraising, to help pay for the pump? well... i called the local pharmacy and told them to go ahead and order the pump, but to set up an account for me, and i'd pay it off as i had the money to do so. but, at the same time that i was on the phone with them....
dr b, asher's paediatrician, was at a meeting at the office of our local MPP. for some reason, dr b thought of asher and all the trouble we're having with the pump, and that we need to order a new one, but we can't pay for it, but asher needs it in order to stay alive. MPP's response? "oh, yeah, we can cover that for them. up to $1500. no problem. just order it and send the invoice here. i'll forward it on." just like that. covered. paid for. completely. i have no looming debt hanging over my head, no one has to do any extra work for us, nothing, just a pump completely paid for by some foundation MPP-boy knows about.
HOW AWESOME IS THAT, EH? TOTALLY A MIRACLE, I'D SAY!!!! GOD ROCKS!!!!!!!
so, there you have it. in the morning, i'll take some pictures, hopefully with asher sporting his new backpack (which is too cute - so small!!!), but i want you all to see how great this pump is! it's absolutely tiny, and immersable in running water, and light as a feather!!! i love it!!!
ok, there's the tale of the pump. now, i'm tired, asher's meds are about an hour late, and i still have my whole bedtime routine of journaling and reading ahead of me. well, have a good night, and i'll likely talk to you tomorrow. (i'm so happy to have my computer back, can you tell? lol)
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