Wednesday, April 30, 2008

the surgery details. don't read if you don't want to know. it's not pretty.

some of you may be wondering exactly what they're going to do during asher's surgery, what repairs are going to happen. it's a short list, but that doesn't mean much:
  • pulmonary vein repair. they have to remove the stent (a large piece of metal mesh) that is embedded in his heart and blocking the right pulmonary veins. (stop reading right now if you don't want to know how they will do this.) they will be cutting a chunk out of the inside wall of asher's atrium (upper chamber of his heart). pulmonary veins bring blood from the lungs to the heart. right now, blood is having a hard time getting out of his right lung.
  • pulmonary artery repair. they're going to see if they can do something about the middle of his pulmonary arteries. this is the spot that is even narrower (which is just what he needs, a narrower spot in already tiny PAs). so they want to see if there's anything they can do about that. PAs are important, they take the blood to the lungs to be oxygenated (or, so it can be red again), so PA hypoplasia is a BIG problem. the narrower spot? that happened when they removed the main pulmonary artery (MPA, the vessel that - normally - takes the blood from the right ventricle to the PA branches. i think there's pictures in some of the links, check the SickKids links if you're interested.)
  • they may have to cut open part of the stent in his aortic arch. the top of the stent, the "distal stent," on the far side of the arch, is open, which is good, it means it's growing with asher. but the bottom end or "proximal stent" is closed, meaning it's not expanding with him. the cardio's aren't sure if the surgeon cut it all the way down in june, so they're going to ask him. if he hasn't cut it, he'll have to do that either now or later, like when they do the third stage (Fontan). it's not a huge problem right now, which is why it could wait, but if they're in there now, why not deal with it before it's a problem? (novel idea!) anyway, if they need to do that, if they have to fiddle around in his arch, they will have to put him through "circulatory arrest" for a bit. that's when they stop his blood circulation. yup, you read that right. they lower his body temperature so that he is, essentially, frozen (or as i prefer to call it, "they put him on pause for a few minutes"; basically, it's medically-induced hypothermia), then when they're done doing what they have to do, they warm him back up, start up ECMO (heart-lung bypass) again, and get him circulating again. yes, it's just as risky as it sounds. feel free to vomit now. i want to, and i already know all this stuff. but he made it through this in june, when he was weaker. (oh, yeah, they've done this to asher before. he's getting to be a pro at all this open heart stuff. nice, in a horrifying, nauseating way. blech.)

so there you go. the nitty-gritty on asher's surgery next week. one week today. i think i'm gonna barf. it's just so close! i don't have much time to plan! yikes! i think i'm about to go a whole other kind of crazy! anyway, gotta go vomit, make blithe's lunch for school, vomit, breathe a bit, vomit, chant "serenity now, serenity now," vomit, then get on with my day. have a good one, and remember, at least it won't be as frenetically, panically (is that a word? ah, well, you know what i mean) busy as mine. talk to you later! :)

ps - a little heart friend of asher's, callum, just came home yesterday from toronto. he had surgery last week and did great! also, little ryley had a biopsy last week, and there is less rejection now than last time, which means she's recovering. she doesn't need anti-rejection meds right now, which is great news. she'll have another biopsy at the end of june. and dominic, a boy with hypoplastic right heart, is going in for his fontan next month. please pray for these little ones, and don't forget their parents! there's a big heart community out there, and we're blessed to be a part of it. please remember to pray for all these little ones, who are so much stronger than any of us, and go through more than you could ever imagine. thanks.

Tuesday, April 29, 2008

we have a date!

just got off the phone with the surgical coordinator at SickKids, and we officially have a date for asher's surgery.

Wednesday, 7 May.

yup, that's next week. we have pre-op clinic on tuesday, then into the OR on wednesday.

that's all i need to post for today. not a long post, but a biggie. sorry if it wrecked your day, but at least we can all start planning now. well, talk to you later! :) h

ps - sorry, annie, i was going to email you about the swallowing stuff, but then got sidetracked. my bad. :(

Monday, April 28, 2008

there is hope! :)

so, i'm sitting down for lunch after getting home from my massage. i'm eating some delicious Autumn Garden Vegetable (by Knorr. i highly recommend it! dreamy, really!). anyway, the little bug is in his playpen when he sees me eating. so, of course, he flips out; he only wants me to hold him, no one else will do. so, i hold him, thinking, i can hold him and eat at the same time. we tried to give him a mum-mum, but that was a no-go. well, apparently, what he wanted was my soup. so, i figure, a little bit can't hurt, right?

well, i put some on the spoon, and he licked it off and said "mmm." then he reached for my spoon again! anyway, the first couple licks, i don't think he really understood what he was doing, just kind of licking a yummy spoon. but after a minute or so, he had a little lightbulb moment, and he wanted to really eat soup!

so, i kept giving him little bits, just a couple drops that he could lick off. and every few licks, there was a clear swallow sound. and know what? no coughing! no gagging! no turning blue! no wet, crackly breathing! that's right, folks, HE DIDN'T ASPIRATE OR ANYTHING!!! HE JUST SWALLOWED THE SOUP OVER AND OVER AND OVER AGAIN!!!!!

there is hope. my little boy will learn to eat. it'll be slow, but he can do it. he won't have this tube forever! i think he really liked eating, too. he was so proud of himself. once again, it seems that asher has just decided that he's going to do something, so now he's going to do it.

i'll keep you posted as he tries other foods. tonight i might give him some refried beans and sour cream or something. well, have a wonderful, hope-filled day! h :)

Sunday, April 27, 2008

it's a wonderful (normal) life

where do i start? asher has been an absolute joy these last few weeks. so much playing and learning and maturing and growing.... really, i don't think i've ever seen him doing so well. he's really turning into the most delightful little toddler!

the easy stuff first (as he's swinging his IV pole beside his crib, directly above me, as i type this. does this child ever sleep?! he used to, then he had to go and get better. sheesh! lol). he's always been somewhat immature for his age. not so much developmentally delayed (well, a little bit, but nothing major, not like what you'd expect for a kid with his life), just emotionally delayed. immature really is the best word. well, the last couple weeks, since he's been feeling better, he has made huge strides in his personal being... he has blossomed into the most delightful toddler i've ever known (except when he doesn't get what he wants. then he screams. not so fun. but when he's happy, he's lovely!). he loves playing with his toys, especially his tank engines, much to bram's chagrin. but, i explained to bram that asher just wants to be like his big brother because he loves him so much and looks up to him. and now that asher can pull up to standing, they can play trains together on the coffee table, and asher won't steal them as often. that usually works. not always; bram really doesn't like sharing his beloved tank engines, but it's a work in progress, i suppose.

now, let's see... what else? since his cath, he's been stronger, i think. which surprises me, given that last time he had a cath, he went downhill fast. but he's actually been doing better. he has more energy, so he can play longer. he still gets very tired, mind you, but he can push himself a little longer.

i read the other day on an HLHS group on facebook, there was a post by a girl who's about 21 or so, has HLHS and is doing really well (and still has her own heart, no transplant!). she said that the first few years were tough, but that "our hearts are like fine wines - they get better with age." meaning stronger. they don't miraculously sprout left ventricles or anything. and i've been thinking about asher and his condition and those collaterals and everything. it's like his body is continuously adapting and learning how to function with his conditions. it's that basic human drive to survive. right lung's a problem? well, sprout some vessels to detour the blood away from that lung, and we're good to go. honestly, i think he has even more energy now, with his sats sitting in the low 70s, than he did 6 months ago when his sats were mid to high 80s. astounding!

anyway... there's also some wonderful toddler stuff that he's doing now, too. his speech is just exploding! he has started to really mimic people around him when they speak, and you can tell what he's trying to say! when we go for a walk, and we call to the other kids to stop, he yells, "DOP!" and if you ask, "where's your nose?" he'll grab his nose (or yours, but often his own) and say "OZE." he knows ear, which comes out "EE." earlier this afternoon, he was playing phone with my mom. he held his toy phone to his ear and said, "ALLO." that's right, there's an "L" sound in there (now if we could just get bram to say that on a regular basis, we'd be laughing! lol) let's see, anything else? ah, yes, he spied a remote on the desk this afternoon, and reached for it and said "OTE. OTE." now, don't get me wrong here, i don't want to sound like i'm complaining or anything, but WHAT'S A MOM GOTTA DO TO GET A QUIET KID AROUND HERE?! i mean, really! apparently, all my children are talkers. seriously! blithe even talks in her sleep! and some nights, i'd swear, if asher had the vocabulary, he'd be talking, too!

this is all so wonderful to see and hear! he's getting to be such a big boy. he can now easily look over the top of his playpen, which he couldn't do even a couple weeks ago. that's right, folks, my boy had a growth spurt! and, somewhere along the way, he has also cut 2 more teeth on the bottom (which would explain a lot of the crankiness and poopiness over the last week or so), and he's still working on a couple more up top. he's turning into a boy, instead of still being a baby. it's such a blessing, such an encouragement. this is God's miracle in my boy, that he can have all this "wonkiness," and still be the happy, bright, smart, strong child that he is! praise God, eh? and those of you who saw him at church this morning, doesn't he look wonderful? not even a hint of blue today! just pale/pink, which i will gladly take over the blue/grey/pale i'd gotten so used to.

well, that's about it for tonight (on this blog, anyway. i just might post on my own blog later. i'm doing a bit better, but i'll put the details there, if i have time/feel like it). i'm going to drink some tea, make a list of my favourite bible verses (where to start?!) and start planning my next big paper project: an altered bible! can't wait! :) anyway, have a great week, hopefully i won't have anything to report, so i'll talk to you later! :) h

Friday, April 25, 2008

wow! it's been a while!

and so far this week, nothing's happened. asher has actually had a great week. still very short of breath, low sats, blah blah blah, but that's his "normal" anymore. the only exciting things in asher's world this week were not medical, but social.

first, on monday, i took the boys to Winter Wheat in Sparta with a friend and her daughter. we had a lovely morning looking at all their outdoor art. so laid back and relaxed, asher had so much fun watching bram and shaylin run and play.

let's see... what else happened.... oh! i took asher to the Kids' Country Club for the day yesterday. it's a wonderful home, offering respite care for special needs kids, and it's run by Parents of Technology Dependent Children. it's a beautiful house in Byron, staffed by nurses. asher had so much fun while he was there. he explored, played with toys, participated in a sing-along. he had a wonderful time. and the smiles i got when i arrived to pick him up... wow! what a sweetie! we haven't really been apart for that long (barring medical procedures) in a long time. it was the best hug ever when i picked him up yesterday! :)

anything else? ah, yes, i have to remember this! we have started giving him peanut butter at mealtimes now. yup, PB and mum-mums. he loves it! he especially loves the mess he makes with it. but best of all, he can eat it without difficulty because it's thick and sticky and almost impossible to aspirate! so, he can now participate in mealtimes fully, not feel (too) left out while we're all eating, and he feels like a person and a valued member of the family. it's actually pleasant now at mealtimes. much better than the screaming and shrieking and crying that we'd almost gotten used to!

so that's been our week. no bad news, just fun stuff. always the best kind of update, wouldn't you agree? :)

Saturday, April 19, 2008

back so soon?

why, yes, yes we are! :)

asher did amazingly well with his cath yesterday! so much so, in fact, that he didn't need the room they had already booked for him "just in case." i'll admit, even i figured he'd be there at least one night. in fact, i was packed for several days! but, he did great, and we came home last night.

but i'll start at the beginning.

we arrived at SickKids for 8am. and for those who say SickKids in impersonal, a little story. and remember, we haven't been to clinic there since July. well, i handed the secretary asher's cards, and she says, "wow! i haven't seen you guys in a while! how are you doing?" that's right, the secretary remembered us. later, when we were waiting to meet with the fellow, one of the dietitians (sarah) spotted us and came right over and she and i must have chatted for about 10 minutes! we also saw paula in the cath lab on her way to a meeting, but she came right over and we talked for a few minutes, too. it was nice to see these people again, and to know that they remembered us and care about how asher's doing. but back to the days.

pre-cath clinic. first up: the ECG. ed went in with him, and i stood out in the hall chatting with the research nurse, sveta. at one point, one of the cardio's (dr froj) walked past us in the hall, and saw me, stopped, and came to chat. that didn't last long, though, since he basically plowed right past me asking "where's asher?" needless to say, he was pleasantly surprised by his size! this doc is not asher's doc, but he was the first one we talked to way back when asher first got sick, that first night. he did the first echo at SickKids in CCCU, explained asher's condition to us, went through our options with us a bit. he still remembers that night. and since then, he's kind of been following asher, keeping track of his progress. and as a coincidence, he's like our toronto version of dr buffo: not asher's doc, but seems to be the one on whenever asher's admitted there. funny how that works out, eh? (he's the one who asked, in the middle of an echo, "so, where'd you get the name Asher?" and was surprised when i knew all about my son's name. but really, would anyone give their child the name Ben-Oni without knowing what it meant and where it came from? i mean, really! lol) anyway... so that's the ECG.

then off to bloodwork. so much bloodwork. but that nurse needs to follow asher wherever he goes, but she got 15 mLs from one poke! fantastic! usually it takes at least 2 or 3 (asher's a very hard poke, his veins are all tiny, scarred and hiding now). but when she was done, asher only wanted daddy (mommy had been the one holding him down).

then, off the x-ray. now, for those who've never needed to take their baby in for a chest x-ray, let me describe it as best i can: there's a square, wooden table, with a hole in the middle. in that hole is a plastic bicycle seat. the baby sits on the seat, and then mom holds babe's arms up over his head, while the tech brings 2 tall, clear sheets of molded plastic and squeezes them around him. this forms a very tight tube around the baby, so he's upright and can't move. it's fastened tightly. at this point, the tech moves the table (which is on wheels) in front of the lead screen thing, for one picture. once it's done, they turn babe 90 degrees (the tube can spin) and get the side shot. and yes, the whole time, babe is crying. in fact, they need babe to cry, because that opens up the lungs and they get really good pictures. i made ed take him in for his x-ray. i always do it at 3 hospitals. ed has never taken him in for that. it's his turn. asher cuddled with me when they came back out.

then came the meetings with the nurse and the cath lab fellow. nurse went over the schedule for feeds, when to arrive, what time we were scheduled for, that sort of thing. the details. then we talked to the fellow. he went through the rest of the plan. they were going to coil off those collaterals that are causing problems, balloon his pulmonary arteries and stent them, if needed. they'd know once they got in there. they were also going to take a look around, take some pictures, check pressures, that sort of thing. then we signed the consent form.

so that was clinic. after that, we had lunch, and wandered downtown toronto for a while before checking into the hotel (btw: if you're a CAA member, there's a discount rate at the Delta. i think we paid $162 for thursday night. much nicer than the regular rate for our room: $500 or so per night!) we went to the World's Biggest Book Store and bought stuff to read. ed bought a book! i was so excited! (well, i bought books, too, duh, but i always buy books. i don't remember the last time ed bought a book! very exciting!)

ok, night at the hotel, back to the hospital for 7:30am. there, they checked asher's vitals, marked the pulses in his feet (so they know where to look afterward, and they'll know right away if the pulses are gone - a potential risk with cath procedures). i bathed him and got him into his gown and he played and played and played. then before he went in, we met with the anaesthesiologist (who remembered asher from june) and dr benson. dr benson said, and i quote: "we're not going to do anything today. we're just going to look around, check pressures, take some pictures, but we're not going to do anything. we should be done around, 11 or 11:30."

and they were. he talked to us afterward, and, as asher's docs and i all knew, they saw that one of the pulmonary veins is "severely" blocked and needs to be dealt with relatively soon. they know how to do that sort of thing, but he'll be talking with asher's cardiologist and surgeon and they'll figure out the plan now. we should hear fairly soon with a date. (you'll know when i know.) but it has to be done, and yes, it's open heart surgery. we also talked to the anaesthesiologist afterward, and he said that he had suctioned a lot of stuff out of asher's lungs, lots of mucous and puss, he thinks asher may have had a lung infection at one point and no one caught it. i'm not surprised, he's been aspirating so much reflux and food (in english: so much food and stomach acid has been going down into his lungs) lately, of course there would be stuff in there! but asher's breathing is now much better, not as laboured, still quite fast, but much better!

one bit of encouraging news: when we were talking with dr benson after the cath, he said that asher has already been through so much and made it through so many big hurdles, he should do pretty well with the upcoming surgery. it's not as big as the last one, in june. he's reasonably confident in asher. he commented on how strong asher is. (but it's still open heart surgery, and this is asher, and he has a reputation at 3 hospitals for complicating the simplest things. but it gives us some hope, at least.)

once asher woke up, and they gave him a bit of morphine, he was back to his usual self in a few hours. we were discharged at 3:30, and we got home around 7:30 last night. (friday night rush hour on the 401. ugh!). so that's that.

all in all, an eventful, stressful, llllloooooonnnnnnnggggg couple of days, with some mixed news at the end. but we're happy to be home (with asher! woohoo!). and now we wait for our surgery date. this part sucks.

anyway, that's that for now. ttys! h

Wednesday, April 16, 2008

for those in the london area

i talked to a reporter from the free press this afternoon. she's doing a story about the new docs. she wanted to hear from someone who will benefit from the new docs, and she found my contact info from the previous article in december. anyway, we talked for quite a while.

there was no time for a photographer to come over, so i emailed her some favourite pics of asher.

well, long story short, we're going to be in the paper. likely tomorrow, so go pick up a free press. (i've already arranged for someone to pick me up a copy).

look at my baby, gettin' all famous! lol


apparently, it was just announced that CHWO has now signed 3 new paediatric cardiologists! one who was there previously, and 2 from Germany.


that's more than we have now!


gotta finish lunch, then off to get my nails done. oh, i'm so productive today! lol

ps - if you want to get a hold of us over the next few "daze," we'll be in toronto. so try our cells.
heather: 519-933-1876
ed: 226-268-0896 (that's the new london area code)
and a change in plans: ed, asher and i will be staying in a hotel tomorrow night. too much driving to come back to hamilton overnight, then go back in the morning. our cells will be the best way to get a hold of us.

and don't forget to vote on the poll. scroll down to find it on the sidebar. and please check out the links along the way. lots of good information there, about asher's condition, surgeries he needs, research results, that sort of thing (my blog's listed there, too).

Tuesday, April 15, 2008

i'm putting a "survey" on the sidebar. check it out (you may need to scroll down a bit)

as i wrote in the last post, asher has figured out how to pull himself up to standing in his playpen. now, he has figured this out in his crib, as well, where he is working on JUMPING, too. lovely. saturday night, he didn't get sleep till about 10:45, he was so excited over this newly acquired skill. needless to say, he now takes forever to fall asleep. why? you ask. he has discovered that, now that he's upright, he can change the songs on his music box in the crib, and he happily spends a good 10 minutes (at least!) playing with that, before finally laying down and going to sleep. this wouldn't be so bad, except that a) he's so tired from his heart stuff so he needs his rest, and b) we're so tired from his heart stuff (and everything else!) that we need our sleep! ah, well, at least he's playing and not crying. so i can't complain too much (i say in the morning after sleeping in, and not at 11:00 pm when i'm exhausted and all i want to do is sleep and that music is keeping me awake AGAIN!)

well, apparently, he has realized that he can pull himself up on other things, too. this morning it was the bathtub. and he was trying to step sideways around the inside of the playpen, as well. yikes! pretty soon he'll be cruising around with the little nemo car, and then it's just be him and his IV pole racing around my house non-stop. (good thing about the whole half a heart thing, he can only go in short bursts, so at least i'll be able to catch him! lol)

i'm starting a poll on the sidebar, asking when you think he'll start walking. i figure, we'll make this a little interactive, have some fun together, instead of me writing and you reading and we're so isolated. let's have some blog fun together, shall we? :) so, when will i start pulling out my hair and crying in a corner? lol

Saturday, April 12, 2008

"normal" stuff! gotta love it!

asher's making some progress. it's been so nice the last few days. i think he's starting to feel better. he's certainly less puffy now, and his mood is much improved. still tired and short of breath, but his colour is better, he's not refluxing as much, but he really is much better than he had been. (before you ask, he'll still need OH surgery in the next little while, this improvement isn't going to stop that, since his pulmonary veins are still blocked. but some of the symptoms are improving). he's still irritable like a bear, but it's a normal kind of irritable.

he's frustrated that he's not like blithe and bram. he can't stand up at the coffee table and play trains with bram, so he yells at us. and he's surprisingly computer-savvy for a 16-month-old. he loves watching Thomas songs on YouTube, and he knows that to do that, i need to have my hand on the mouse. so he looks at me and points to the mouse and yells "DA! TA! DA! DA!" yup, there's a "T" in there, for Thomas. he's getting there! wait a minute... that means that i'll have 3 children yippin and yappin at me all the time. why is this a good thing? lol ;) oh, and the "TA" is not a fluke. he saw bram's thomas place mat, and yelled "TA! TA! TA!" and pointed at it. i really don't know which of my boys is more obsessed. did you know asher has his own tank engines? seriously! he loves the magnets, and puts them together in a line and pushes them around his high chair tray and says "voovoo!" ain't he great?! :)

and one more thing. yesterday morning, he was in his playpen for a bit (he spends a lot of time in one of those 2 places right now, due to his extreme shortness of breath. we limit his free time, but he's cool with it). anyway, he wanted the VeggieTales CD on. so he grabbed onto the top rail of the playpen and PULLED HIMSELF UP!!!!!! ONTO HIS FEET!!!!!!! AND STAYED THERE FOR A GOOD 5 SECONDS!!!!!!! he lost his balance when he pointed at the stereo and yelled at me. but he even knows where the music comes from! what a smarty.

i have changed my position on his future career. i told him the other day, that if he keeps the heart he has, he has to do something boring and/or with as little stress at possible. then i added, that if he gets a new heart (you know, one with a left ventricle), he can do whatever he wants, including doctor. cardiologist would be nice, but only if he has a new heart. the one he has would conk out his first day on the job! so new heart, stressful job ok. wonky heart, stressful job bad.

well, there you have it. oh, one little tidbit about the trains that i forgot. if you put 2 tank engines and a coal car in front of him, he'll put the odd tank engine aside and stick the tank engine and it's car together and make them drive around the tray. that's right.... HE CAN MATCH!!!! what a smartie! woohoo!!! :)

talk to you later! h

ps - if you're going to the women's rally today, don't read my blog yet. i'm going to be reading what i posted last night. not really cheating, just thinking with keys under my fingers. :) i just don't want you to feel cheated. if you're not coming this afternoon, then feel free to read my blog. link's on the side bar. :)

Friday, April 11, 2008

oh, yeah, i forgot about all this "toddler" stuff

...such as, messes at mealtimes.

remember last week when i posted about asher and perogies? how much he loved them? well, i think i've discovered something: it's not the perogies he loves, per se, it's the smooth but thick, cheesy insides served in something carb-y and smothered in sauce. asher's new favourite:

3-cheese canneloni!

and yes, it was just as messy as it sounds.

i mean, you should see blithe's plate. it's a mess, and she's a 5-year-old girl! and bram, well, he didn't even finish his, and his plate is cleaner than asher's spot. he got it all over the table, his high chair, in his pants and hair. there was even some sauce on the back of the high chair! the back! i'm not kidding! he is such a toddler, and such a boy!

i love it. :)

stop reading right now if you want to savour the fun, without all my crap. i give you permission.

on a somewhat different, less fun note... i'm feeling very anxious about the surgeries coming up. it helped hearing the surgeon say that this won't be a huge surgery, certainly nothing like what he went through in june. maybe it's just normal heart mom stuff, when babe goes in for open heart surgery, or any heart surgery, for that matter. rationally, he's been through worse, he's a tough kid, much stronger than me. on the other hand... i just can't shake this feeling, in the pit of my stomach, that i'm going to lose my baby this month. this feeling is all too familiar to me. how many times have i felt this way before? let's count:
  1. the first week in toronto
  2. the hybrid
  3. the ASD stent
  4. the drug-resistant UTI last spring
  5. the pre-Glenn cath
  6. the Glenn
  7. anytime reflux is an issue
  8. sepsis
  9. RSV
  10. the last couple weeks

perhaps it's a left-over feeling from last week when i confronted all his issues at once. but then, i remember when asher was getting the stent, i didn't want anyone to talk to me, because i was sure he wasn't going to make it. and during the cath, i was sure he'd have a heart attack or something and pass away in the cath lab. and the Glenn! when the surgeon says things like, "this is a really big operation," yeah, it doesn't do much to put your heart at ease. when he came back from the OR i could have kissed him when he took us out into the hall and told us how it went, and the words "i'm so sorry" were not even uttered! i was sure asher wasn't going to make it through that surgery.

see? i've been here before, and so has asher. but still... they're going to slice off a piece of the inside wall of my baby's heart. i don't know. i'll talk about it with asher's nurse when she comes today.

after our trip to ikea!!!!! woohoo!!! hub has loosened the purse strings once again, and we're re-doing our bedroom! basically, it's as bad as the kitchen was. dresser's too wide, we don't have much wall space. the wardrobe is ugly, bulky, and not really functional. the shelf in the corner sticks out so far, you can't really use it for everyday stuff, because it's too deep, too narrow, too short (or too tall, i haven't figured out which - either way, an awkward height). we have no hamper, so you can imagine the piles of clothes... for 3 people! this isn't really a nice room for people to live in, and there's 3 of us in there, plus blithe and bram are always in our room, too! so things have to change. need some organization, and some pretty. some mellow and relaxing. right now, i dread going in there. that's no way to feel about a bedroom! so, some new furniture (not a new bed, though. i like the bed, so it's staying) and some paint, until we can afford to rip out the walls and re-do those, 'cause they're not in the greatest shape. well, you've seen it. oh, no, wait, you haven't! i don't let anyone in there, because it's so bad! that's right! well, when it's done, i'll put pictures up somewhere. maybe some here, since it's asher's room, too.

we've been here over 5 years, and we've never really done anything to the house. just some paint here and there, really. it's an old house, and we have a sick boy who needs things clean and organized (remember the IV trailing behind him). and, thank-you left-leaning government, we got a nice big tax return, so we're going to pay off some credit cards, and get some stuff for the bedroom.

well, gotta go. it's getting later, everyone's getting up soon, and really, i'm just writing here to avoid the giant pile of dishes. i've been up over an hour now. i should probably do something productive now. wow! this is rambling, isn't it? ok, i'm done. for now. i'll post more later. unless i'm at the truckload scrapbooking clearance sale in st thomas. ok, really got to stop now. ttys! h

Wednesday, April 9, 2008

the little terd! :)

don't worry, i have nothing to say about his bowels right now. here's the tale o' the day:

on liz's advice, i took asher in to emerg this morning. asher is paler than usual, getting puffier by the day. he is short of breath within minutes of waking up, and irritable, dear me! also last night he was grey and breathing quickly. he has also taken to leaning on things a lot of the time. like, instead of sitting back in his high chair with his foot on the tray (such a guy! lol), he now leans forward quite often. so i paged liz, and she said to take him in to emerg.

of course, by the time we got there, he had some colour, his sats were up in the mid-70s, his breathing was not quite as fast (still close to 40, but that's normal anymore), and to say his mood improved would be an understatement. what a terd! lol totally playful and charming and flirty. except when they did the chest x-ray, but if i had to sit half-naked on a bicycle seat squeezed into a plastic tube, i'd be unhappy, too! (just like you are now, after that mental picture! lol)

anyway, so as it stands right now, asher is doing... hm, i don't want to say "well" because he's not, but let's call it, the usual. pale, puffy, short of breath, irritable, tired, but never when we set foot in the hospital. i've said it before, and i'll say it again: terd! lol

let's see. is there anything i have forgotten to mention on here yet? i don't think so. if i remember something, i'll fill you in, but i think that's about it for now. talk to you later! :) h

Tuesday, April 8, 2008

so much happened this afternoon already, and it's only 3:00

so, i popped into the paediatrician's office this afternoon to pick up a form from her. turns out, the government will re-imburse us for the 20% of asher's formula that we've had to pay ourselves, and they'll cover it all from here on out. that's a relief, because regular price is about $30 for 12 cans for formula, and he gets more than 3 cans every day. so that's over $60 a week, just for asher. to put that into context, our grocery bill is about $90 a week for the rest of us. yikes!

thank God, right now ed's benefits cover 80% of the cost of the formula. but it's very unusual for benefits to cover formula for tube feeds. so the government has created this program within ODSP (Ontario Disability Support Program) to cover those costs. hey, you know what i like? social medicine. thank-you, Tommy Douglas! lol anyway, hopefully soon we'll get a cheque to re-imburse us, and all his formula will be covered from now on. this would be much welcomed, as you can imagine. yup, left-leaning governments are good sometimes! lol

on a different note... the cath lab at SickKids called this afternoon with a date. asher's booked into the cath lab on friday april 18th. yikes! that's a week and a half away! i asked to be put on the cancellation list, and told her how he's doing (blue, sats around 70%, tired and short of breath, puffier every day). but that's the soonest we can get in. one good thing, though: it will be dr benson doing the cath. we like him. he's the one who has done all of asher's stents so he knows asher's heart well. also, in his spare time (lol) he builds ships in bottles. that's the guy i want poking around in my son's heart, thank-you very much! both require precise work from far away (for the cath, they go in through the veins in the groin - femoral veins, for those medical types - and travel up and into the heart; not much room for error) and extreme focus. so that's good news. the pre-cath clinic will be the 17th, at 8am, and we'll just spend the night in hamilton so we don't have to drive so much. (oh, yeah, um, mom & dad, can we crash at your place that night? thanks! lol)

on the other hand, it's not till the 18th, and then they'll book the surgery. this is not so good. asher's deteriorating every day, he's not getting any better, just worse.

when i was at the paed's office this afternoon, i chatted with her for a couple minutes. told her how asher's doing, and that (at that point) we didn't have even a cath date yet, let alone surgery! she was concerned about this. she's seen asher recently, and believes me when i tell her about his condition today. she wants to call the surgeon and talk to him, see if we can speed things up a bit. don't know if she'll succeed, but it's worth a try. not that i am looking forward to open heart surgery, but it has to be done soon, and i don't know how long asher can continue like this. we'll see what happens there.

in related news... she didn't get a chance last week to talk to dietary or GI, so that's somewhat of a relief. i did tell her, though, that i have stopped diluting asher's formula now, so he's getting the full 30 cals. hopefully that will help his weight issues. and i said that, not that i'm itching for the gastro surgery, but i am really concerned about the aspiration thing. i mean, i know that the heart is affecting the reflux, and once we "fix" the heart stuff, it'll help the reflux, so the heart should be the priority. on the other hand, if there's a big reflux and he aspirates it, it could drown him without warning, so i'd like to prevent that from happening, so maybe that should be the priority. rationally, i know heart comes first, but my fear says "REFLUX IS FASTER!!! FIX IT FIRST!!!!" realistically, heart will come first, then gastro, but still....

as for other kids... we just heard about a family in toronto right now. the father works at sterling or something around here, and he's laid off right now. they can't make their mortgage payment, but they're in toronto waiting for a new heart. their son will be getting a Berlin Heart soon ("Ventricular Assist Device" - does what it says - it's a device that assists the ventricles lol - it pumps for the heart) until a heart is available. unfortunately, i don't know their names or anything, so i can't pass that on to you. but God knows who they are. so if you could pray for them in the next while that would be great. also, little dominic will be getting a date for his fontan in the next week or so. please pray for the parents (my FB friend Jenaia and hubby) because this wait is excrutiatingly stressful. and pray that dominic will do well with the surgery when the time comes. he's hypoplastic right heart and otherwise doing well enough, but still, he'll be going in for open heart surgery in the next few months. hey! maybe we'll be there at the same time, and i'll actually get to meet jenaia! how cool would that be! i'd prefer to meet under other circumstances, not in CCCU after OH surgery, but hey, whatever! this is the life God has given both our families, so best to roll with it, eh? :) also, little atticus (out in edmonton) is doing wonderfully. he's HLHS, post-Fontan, post-transplant. his feeding tube is gone, he's eating and taking all 30 (!) meds orally, he turns 3 later this week, and he's re-learning how to walk. the very fact that he's alive is a miracle, but now he's home and doing so well.... thank God, miracles happen! :)

anyway, that's our world at the moment. keep praying for asher and the other heart kids right now. pray for 24-hour timmie's, sanity (those 2 go together, let me tell you! lol), the docs, the kids, the families and siblings, and yourselves, as you read this, that God will grant you patience and peace and trust during times of stress, whatever your stress may be. thanks for reading. talk to you later! :) h

Saturday, April 5, 2008

asher pics

getting into my stuff. nice.

apparently, he LOVES perogies. first real food.... ever. and he did ok with it! :)

apparently, he also loves granny smith apples. i don't think he actually ate any, but he sure loved the juice!

lunchtime was wonderful today. nice and normal. asher making a mess and enjoying the food, and then he fed me some perogies. slimy potato & cheese filling, already pre-tasted (Quality Assurance, i suppose).

thought i'd give you some nice asher stuff today, after all the crap from this week. sorry about all that. bad week. :( here's hoping next week will be better. :) h

Friday, April 4, 2008

Warning: i'm venting here. you don't have to read this post if you don't want to.

very rough evening last night.

ed and i sat down with a couple people who still don't understand asher's stuff, and i explained his "issues" to them. i mean, i explained all of asher's issues. all of them. it took over an hour. we covered:
  • the basics of HLHS
  • congestive heart failure
  • the upcoming open heart surgery
  • the problems with the pulmonary veins, the Glenn and the PAs
  • kidneys
  • his immune system (or lack thereof)
  • his stomach, throat and GI tract
  • his reflux

basically, it was Everything You Wanted to Know About Asher But Were Too Afraid to Ask. my mom took the kids out, and we sat down and talked. i drew pictures (such as they were). these people have always looked away, distracted themselves (esp one of them) and never really listened when we talked about it all. last night, there was nothing to distract them. they had nothing else to look at or listen to other than me and Asher's wonky physiology. and it wasn't nice, either. i had to use phrases like "without warning" and "slow and painful" and "this is the last resort" and "he might not make it."

they cried.

and i think it was the most draining evening i've had in a llllllooooonnnnnnnggggggggg time.

it was the first time recently that i've had to face alol of asher's issues at once, too. the beauty of specialists is that they really only know their thing. i can spend all day with cardiology, listening to them talking quietly, trying to figure stuff out, and then giving bad news. but they only know their thing, so i'm only dealing with heart stuff. when we see nephrology, we're only dealing with the kidneys. with GI, it's only stomach. OT/SLP, only swallowing and development. my life, and asher's issues, become very compartmentalized, only thinking about one at a time, and not looking at how they fit together, and certainly never thinking about how very many ways asher could die in the next few weeks.

it was exhausting. i'm so tired this morning. on the other hand, this morning, asher is playful and happy. he has spent the last hour playing with blithe and bram and reading and getting into trouble and just being the sweetest toddler you've ever seen.

balance. that's what i need. yeah, it sucks, but he's cute, so i can deal. sorry for venting. i needed an outlet, i guess. talk to you later!

Thursday, April 3, 2008

back from another appointment in toronto

but not cardio today. it was the final appointment in the drug study that he's been in. they did a full assessment of his development. he had a lot of fun, basically they just played for 45 minutes. he did great, played constantly without having to rest. on the other hand, he usually just keeps on going beyond his limits. so by the end of it this morning, he was a terrible shade of grey-ish/navy and he was really huffing and puffing. but a nap on the way to hamilton fixed that up (relatively), and he was ready to play again when he saw bram! lol those 2 boys really love each other - it's so sweet! they're like peas in a pod - i think i'd better keep my eye on them when they're older (who am i kidding - they get into mischief right now! lol)

so, he's napping right now, exhausted from an early morning (we left around 6 am) and a long day. he was getting pretty grumpy by the time we got home. well, gotta go get supper ready. ed's parents are coming over for dinner tonight. have a good evening! h

Wednesday, April 2, 2008

paeds report, and a biology lesson

ok, so, we went to see the paediatrician yesterday for asher's 15-month check-up and needles. and, of course, when one thing isn't going so well with him, there also has to be at least 2 other things wrong, because otherwise it's just too easy!

so, he hasn't gained any weight in the last couple months. in fact, he's actually gone down in the last few weeks! (hmmm, wonder why?) anyway... this is a problem for him. (remember, weigh loss is yet another effect of CHF and other cardiac issues) well, dr b the paeds is going to be calling the dietitian to discuss this, and put asher back up to 30 cal formula. in the end, this will be easier, since Pediasure comes in 30 cal, it's just that we have to dilute it for asher. but yeah, weight loss bad. so that was a bit upsetting. but relatively, that was nothing. stop reading now if that was too much for you, because it gets worse from here on out.

well, we were discussing his feeds, which aren't going so well. i told her that every once in a while i try giving him some solid food by mouth, just to see how it goes. turns out, he loves those mum-mums, those rice cookies that dissolve in the mouth. he loves them, can't get enough of them, and doesn't seem to have too much trouble with them. so that's a good thing. but... i also told her about the sweet potatoes the other week, when he took a couple little tastes and aspirated. not so good, esp given the tiny amount he took. then....

i told her that he's been refluxing lately. she said, "how can that be, when he has the j-tube? there's nothing in his stomach." she asked how i know. i said, i can hear it coming up from across the room, and then he gags, coughs and then his breathing is wet, crackly and laboured. see, this is a BIG problem. worse than the weight loss. ugh. so, she's going to call dr howard (gastroenterologist - the "poop doctor" as he calls himself!) and discuss a fundoplication. asher simply should not be refluxing. at all. so it has to stop. and given that he's already on some heavy-duty meds for his reflux, this is the only thing left to do to fix it.

now, i'm sure most of you don't know what a fundoplication is. so, welcome to Paediatric Gastroenterology 101. ready? (i'm posting a very crude drawing of the upper GI tract for you, in case you're visual, so you can refer to it.)

the stomach is on the left side of the body, just below the ribs. there are sphincters (they're like valves, but slightly different) at the top and bottom. the one at the bottom allows stomach contents (like food) down through the rest of the intestinal tract. that sphincter prevents anything from coming back up into the stomach. the sphincter at the top allows food etc to come down the esophagus and into the stomach, and it prevents anything from going back up the esophagus. so basically, the GI tract is like a one-way street (ah, hamilton....), and those valve-types stop anything from going the wrong way.

now, asher's sphincters don't work well, at either end. the bottom one doesn't let anything go down the tract. so not only was he constipated, but anything in his stomach just sits there for quite some time.

well, the sphincter at the top doesn't work, either. this sphincter is looser, and doesn't prevent food from going back up the esophagus. this causes reflux, or heartburn.

further up the tract, there are the muscles that force food down the throat (this is called "swallowing" - lol). there is also a flap, called the epiglottis, which is open most of the time, but closes during the swallow reflex (this stops you from drowning on your supper, and allows you to breathe the rest of the time. it's why you can't breathe and swallow at the same time). asher's epiglottis doesn't close. it's open. all the time.

now, let's put all this together: he has, essentially, no swallow reflex, so food has trouble getting down his throat. his airway is always open, so anything going down has a very real potential (and tendency) to go down into his airway. food, normally, would go into his stomach, through the sphincter and then out through the other end into the lower GI tract and out. but the lower sphincter doesn't open, so anything in his stomach stays there. and it goes back up, too, through the upper end which is open/loose. stomach contents go up the esophagus (this is the wrong way) and into his airway, which is still open.

did you follow all that? good. basically, asher's food goes back and forth, up and down up and down up and down.

this is why he got the GJ-tube. this tube goes in through his stomach and down through the tract into his small bowel. this limits the contents of his stomach to only what he produces himself. no food is in his stomach anymore, ever. this tube, combined with the meds, is supposed to prevent reflux. the problem is... it's not preventing reflux right now.

ok, so now, back to the fundoplication. this is an operation which rotates the upper sphincter, closing off the stomach at the top. so nothing will be able to get down into the stomach or back up the esophagus, and reflux will be history.

but did you catch that? it's an operation. another surgery. the upside, if you choose to see it, is that this surgery can and would be done in london. closer to home. i like "closer to home." but still, it's another surgery. makes me wonder... how many surgeries can one little boy need?

i'm hoping dr b holds off on all this till after the heart surgery. i think this reflux is due to the cardiac issues (these often go together, for some reason), and it's not really a gastro issue. if that's the case, it will stop again once his heart is "better." but, if it doesn't clear up post-op, then i'm happy to meet with dr h and discuss the surgery.

this is why i was so upset last night. too many surgeries. my boy is too little for all this. none of this should be happening till he's about 80 and has had a good, long, happy, healthy life. and yet, here we are.

so, please pray for asher. pray that his heart will hold out for just a few more weeks, and his reflux will stop, and he will be back to happy baby asher. thanks. h

Tuesday, April 1, 2008

what can i say?

that's my boy! rapt and enthralled, in a mess of books (that he didn't clean up afterwards). lol

i'll post tomorrow with details of our paeds appt. i'm not in the mood for more tonight. so check back in the afternoon tomorrow. but i'll say this: at least he'll be able to have surgery in london for once (not heart, though - that's just in toronto). talk to you then! :)