just so you know...

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

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:

1. severe heart defects, particularly involving underdevelopment
2. kidney issues, especially misshapen or underdeveloped kidneys
3. immunocompromise, especially t-cell deficiencies
4. low calcium levels
5. feeding issues
6. 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! :)

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:

"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.

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.

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:

1. heart issues (which it isn't this time)
2. 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! :)

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

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)

thought i forgot about you?

well, i didn't, don't worry. no, my computer died a couple weeks ago, and i just got it back this afternoon. and hooked it all back up myself! impressed? i am! lol

anyway, i'll post in detail this evening. suffice it to say, asher's doing well, no big news there. and we got his new EnteraLite Infinity pump... haven't tried it yet, as ed has the kids on wednesdays, so we haven't had the chance to get it going yet. but i'll post tonight once it's been going for a couple hours, and i'll let you know then.

but, in the meantime....

please pray for Yale. he's in CCCU at SickKids. he had his norwood/glenn last week, and he's not doing so well right now. needs LOTS of prayers. and for his mom, tanna, as well. understandably, she's having a hard time with all this. check out yale's blog for more details; there's too much for me to write about here. the link is on the sidebar. i remember what it was like for asher after this surgery, and these kids are fighters, but they're also full of surprises. so please pray hard. thanks.

an answer to prayer - thank-you so much, keri! :)

ok, so, i thought i would share something positive with you today after my rather, um, not-so-positive post yesterday. sorry about the angry outburst. :( but you know, this is how life goes sometimes with SN kids. sometimes it's frustrate. ;) so, yeah, enjoy this delightful email, and see how God answers prayers. (and for those who might recognize the name, she used to be the secretary at the london cardiology clinic, so i know some of you will remember her.) anyway, happy reading! :)



Hi Heather,

I just got caught up on the blog.

Can we do a fundraiser and get the money for his pump??

I have done a few for Liam in the last couple of months with great success.

Let me know, when you have a minute...lol...okay when you can squeeze in a minute.

I would LOVE to get you 2000!!! Then you can get the pump and a spa day!!

Think about your family all the time, you are in my prayers!

check out the site...we have a lot of stuff on sale right now too!!

Basically, what ever sells, you will get the comission. We can even auction some of the higher priced items.

Keri-Lynn H
www.keri.stelladot.com
www.luxecanada.citymax.com

Strong Women... May we know them...May we raise them...May we be them.

ps - keri's nephew could use some prayers right now. he has some health issues of his own (not heart, but very serious), and is in hospital right now. it was rather a surprise admission (i know what that's like), and it's a stressful time for the whole family. please pray hard for him and all of them. so many we've seen with asher what prayer can do, so any prayers, good vibes, positive thoughts or whatever else you do, would be greatly appreciated right now. thanks so much.

update on asher's pump. and i'm apologizing ahead of time, but seriously, Kangaroo sucks.

have you ever made a decision you later regretted? i know, stupid question; we all have. well, here's mine: choosing a Kangaroo pump for asher! seriously, what a terrible company to deal with! for sooooo many reasons. here's a summary:

1. the technical support number is nowhere to be found, other than perhaps in the pump's manual.
2. you have to order the manual separately.
3. they don't tell you this, until you get the pump, figure it out on your own, but then run into difficulty with it. i'm not joking.
4. the tech support number is not on the Kangaroo website.
5. they do not give out their tech support number to pharmacies which distribute their pumps.
6. if you experience difficulties with your pump, say, on the weekends, you're S-O-L. tech support doesn't do weekends. or evenings. again, not joking.
7. they do not provide pumps to distributors (like the one we deal with). this means that, if you run into difficulty with your Kangaroo pump and say, it dies, you cannot get another one until your is repaired or replaced. the pharmacy/distributor must lend you another kind of pump. not another model. another company altogether. still not joking.
8. if your your pump dies (eg, the motor burns out because you run it 20 hours/day to feed your child, which, you'll note, is the very thing it's designed to do), they will only replace it with another pump that is the same model as your first one.
9. if your replacement pump dies (eg, the motor burns out because you run it 20 hours/day to feed your child, which, you'll note, is the very thing it's designed to do), they will only replace it with another pump that is the same model as your second one, which was, you'll remember, the same model as the first one, which burned out only 5 months previous.
10. if you cause a stink and tell people in customer service that their pump is "crap" and you refuse to take another one of the same model (Kangaroo ePump, for those who are wondering), they will offer you the smaller version of the same pump.
11. if you mention that you much prefer the models similar to those in hospitals, they say, "too bad, it's this or nothing. you can always get a pump from another company, you know."
12. in case you're wondering, enteral feeding pumps can cost around $1000. the ePump costs $1500. still not joking.
13. they must be aware that the average family does not have an extra $1500 for another pump, so really, you're screwed and have to go with Kangaroo and take their stupid crappy pumps.

but heather, i'm sure you're wondering, don't you have some government funding which pays for most of asher's enteral feeding supplies? why, yes, as a matter of fact, we do. it's through ADP (Assistive Devices Plan, or something like that). well then, heather, the answer is just so simple! they will cover the cost of a new pump, so just find one you like and order it, duh! ah, but the answer is never so simple, gentle reader. you see, ADP will only cover the cost of a pump every 5 years. that's right, 5 years. asher's only had this funding less than one year, which means, you'll note, that we still have over 4 years until they will cover a new pump for us.

so you can see my dilemma. i don't want another kangaroo pump, because they are crap. and more info you may need about his pump dying:

1. asher has not been gaining weight the last month or so. (he's being closely monitored by a dietitian, so i know this for a fact.)
2. asher is supposed to get 920 mL/day of formula to meet his minimum calorie requirements and gain weight as necessary.
3. by the end, the pump was only delivering approx 840 mL/day.
4. that's a difference of 80 mL, which is equivalent to 80 calories (which is a lot when you're only getting around 900 kCal/day).
5. again, asher has not been gaining weight during the last month or so.
6. until we got the loaner from Yurek's. he has definitely gained weight in the last week - you can tell when you pick him up.
7. the loaner we got from Yurek's is not a Kangaroo.
8. i love the loaner pump we got from Yurek's, and would love to get a pump like that for asher.

again, here's my dilemma. i could, in theory, call the lady back from Kangaroo and say "thank-you ever so much for your 'help', but let me tell you what you can do with your ePump. ... and once the doctors have pulled it out again, do let me know how the surgery went; i'd be ever so curious." but that's only in theory. in reality, i would never say that. i wouldn't care how the surgery went.

but seriously... i don't want another kangaroo pump. i'm quite enjoying the Patrol pump we have at the moment. truly, a delightful pump. so easy to work, even asher has figured it out (i'm not joking here, either. just ask my mom). here's the link, if you're curious: http://www.southwestmedical.com/Nutrition_Feeding/Feeding_Pumps/Patrol_Enteral_Pump/1045p0

truly, a delight to work with. but note the price. and that's an american site; i couldn't find a canadian one, but since we have one of these pumps at the moment, i know i could get one. i'd just have to go through the pharmacy home health department. too easy, really. except for the obvious detail here:

i don't have the money for one of these pumps. the only pump i can afford is the one Kangaroo will send me for free. that asher needs. because he's entirely tube-fed. so he needs a good, quality pump that won't burn out and die in a few months. and given our record with the ePump, i'm almost certain it will happen again. and the one they're sending us is the smaller version, which may very well die even sooner.

now, i could try on monday to track down a contact at whichever ministry runs ADP (i think it's community services, but i'm not sure) and plead my case. and hopefully, someone will be sympathetic and approve funding for a new pump. but given that's it's the government, i doubt that will happen.

but please don't take this the wrong way. i'm not asking for money here. i know it sort of sounds like it, and i'm sorry, because that's not what i'm trying to do here. rather, i'm trusing God for a miracle. i'm trusting God for this miracle: money for a different pump. i need to feed my baby. i need to ensure he has quality equipment to do that. but i need money in order to purchase said quality equipment. so, please God, provide us with a way to get a new pump.

ok, venting is done. you can now resume your life. and i'll keep panicking and worrying, and everything will be just like it was before. have a great weekend! :) h

UPDATE: while perusing the internet, i found a different pump i would love for asher. the link is on the sidebar. the EnteraLiteInfinity. check it out! too perfect (as long as it works!).