Monday, March 31, 2008
well, the conference didn't exactly go as planned. dr caldarone was away at a conference in the states, so dr russell had to present asher on her own. apparently, the others present were not convinced about the ASD stent, so there is no surgery date at the moment. however....
they're a little hesitant to go ahead with open heart surgery at the moment. so they're going to send him to the cath lab first. they want to get some really good pictures, to make sure it's the stent that's blocking the pulmonary veins (PVs, they take red blood to the heart), and not something else that's causing all these problems. while they're in there, they're going to coil off the collateral vessels that have developed, which take blood away from the pulmonary arteries (PAs, they take blue blood to the lungs). they're also going to see if there's anything they can do about his PAs, which are too small. so, dr russell is going to go ahead with this plan, telling them that this needs to be done urgently. she added, however, that dr caldarone will be returning on wednesday, and she will discuss this plan with him. and then, if need be, they can "reverse things" and get asher in for surgery.
it all seems a little frustrating, i know. oh, believe me, i know. we all know he needs surgery, and now they're delaying it and doing all kinds of other stuff first. but... before heart surgery, they always do a "pre-op cath" in which they get a close-up look at the inside of the heart, checking measurements and pressures, that sort of thing. this is also the time that they'd be dealing with the collaterals and checking the PAs, anyway. so this will all have to be done anyway. they're not replacing the surgery with this, nor are they adding any unnecessary steps. they're going ahead, but more cautiously than dr caldarone would prefer. but he'll be back in a couple days, and hopefully then he'll set everything right.
so that's that for today. perhaps i'll write a bit later about our cardio appt this morning, or i may just wait till tomorrow and fill you in on his paeds appt, too. (my boy's getting needles tomorrow. oh, joy). well, gotta go check on blithe, make sure she's getting to sleep ok. talk to you later! h
Friday, March 28, 2008
when he did the surgery last june, he trimmed the stent down so that it is flush with the wall of his heart. (now, i've seen asher's chest x-rays since then, and that stent looks almost identical to pre-glenn pictures, which means there's a huge piece in there still.) but he left it in, thinking it would be fairly benign, not causing many problems. but, apparently, he was wrong. a lot of scar tissue has developped around the stent material; also, the heart has grown and the stent has not, so it is now blocking the pulmonary veins. that's right, both of them. yikes!
well, this is an unusual problem (esp since not many kids have had the hybrid, and even fewer have gotten the stent, and even fewer still have it post-glenn, embedded in the wall), so they want to open it up for discussion at the cardiology conference on monday, but he and dr r are presenting asher for surgery very soon. the discussion would, like i said in a previous post, revolve more around "do we include the fontan at this point, to minimize the procedures? or do we just do this now, and leave the fontan for later, as planned?" either way, both he and dr r will be sticking to their guns on the timing issue: it must be done SOON. when i told him how asher has been doing lately (very pale/blue/grey, sweaty, irritable, puffy, vomitting, tired, short of breath, etc), he said that was good to know, since it confirms for him that this cannot wait.
the "good" news, though, was this (if you can call it that): he said that this would not be a big surgery.... compared to the one last june. he said that they would simply remove that part of the wall, not a big deal, they have ways of doing that ("i hope so!" i exclaimed, laughing. i don't think he quite understands how i can laugh in the midst of all this. i think i confuse him a wee bit). so, yeah, they're "just" going to remove the inside of the wall of asher's heart where the stent is now. i'm gonna be honest, a wave a nausea swept over me when he said "we'll just remove that part, we have ways of doing it." oh, here it comes again!
so, there you go. that's what he had to say. he added that if i have any more questions, to feel free to call, he's happy to help any way he can. i always forget how nice he is to parents. very approachable. you don't get that very often with surgeons. i like him.
let's see, what else can i say? well... today, asher's not doing so well. queezy and nauseous, almost vomited several times today, but it didn't come out. just went into his lungs. the usual. anything else? well, he's very pale/blue/grey today (i mean more so than usual), his breathing is fast, he's pretty tired and irritable, puffy, and sweaty! dear me! yuck. nurse v wasn't very impressed this afternoon with how he presented. on the other hand, no one seems to have told him how he's doing. he played most of the time that he was up this afternoon. he was even chipper and laughing at times. and that made her happy.
we're going to see (london) cardiology on monday morning, then dr b (paeds) on tuesday, we'll be talking to (toronto) cardiology on monday afternoon/evening. so he's well taken care of this coming week. and of course, the nurses are on call all weekend, and there's emerg, too, if we need to go in. but i think asher will be ok till monday, and then people will be checking him out.
so, that's asher today. i'll post monday, for sure, when we hear, and hopefully not before then. have a good weekend, and i'll talk to you soon. h
Wednesday, March 26, 2008
as for the congestive heart failure... well, we missed his HCT yesterday for some reason, and this morning asher was puuuuffffyyyy! well, guess we won't be doing that again! i had started thinking that perhaps the CHF was over for now. guess i was wrong. and now that i'm thinking about it, of course i was wrong! fluid is still backing up b/c the vein is still being squeezed! basically, we're just treating the symptoms now, as opposed to dealing with the actual problem. but the underlying issue is that pesky stent, and the only thing that will fix that is the surgery.
well, that's about it for today. not much happened, really. i went shopping with the boys this morning (it was blithe's first day back at school today after 2.5 weeks for march break - why didn't i get that when i was in school?) anyway... i picked up a bunch of fun stuff at michaels this morning (you had to know i'd have gone there! i mean, have you not met me?! lol). i posted some of the collage papers i bought over on my other blog (myscrappinspace.blogspot.com), so you can check it out there, if you're interested. i may also post an image from the stamp i bought for my birthday, too. lots of fun, it is! anyway, that's that for today. it was nice to change asher's diaper in the store washroom. which sounds odd, but i never get to take him shopping, so it was a lovely, welcomed, long-overdue dose of normalcy for us. i'll take 50cc of normal once daily, thank-you very much! lol (oh, med jokes. yup, i'm an SN mom, can you tell?) ok, this is now the third time i'll say this: well, that's it for today, folks. i'm going to go read and watch TV with ed. talk to you later!
ps - one quick note: please pray for baby yale, another HLHS baby who had the hybrid in january. he's about 2.5 months old, and he has stopped wanting to eat right now. he'll still take his soother and his meds, but no formula. they're back to tube feeds, but he doesn't seem to be teething, so they're not quite sure what's up at the moment. also, ryley, our friends' daughter who had a transplant and now has some mild rejection, is currently on steroids and is, therefore, eating them out of house and home! this is a good sign, it's a side effect of the meds, and they're hopeful that this will help get rid of the rejection. she had some bloodwork on monday and an echo yesterday (all in london). please pray that the rejection has not affected heart function, and that all these meds and increasing strength will get rid of the rejection. thanks!
first, it was the annual SickKids Radioathon today. if you can give, please give to this hospital. they have saved my baby's life, and the lives of so many others. your support lets them continue to provide excellent care for the sickest children. it also provides much-needed funds for research and the development of new techniques and programmes.
also, SickKids received a large donation today. check out the article here:
as well, The Toronto Star featured the stories of many children who have been helped by SickKids. here's the link:
happy reading! h
Tuesday, March 25, 2008
children with HLHS generally have a hole in their hearts, in the wall between the 2 upper, collecting chambers. this hole allows the blue and red blood to mix before being pumped out to the body. this hole is called an ASD (atrial septal defect). asher's ASD was really 2 very small holes, which were not sufficient for blood mixture, and caused myriad other problems, as well. when he was 6 weeks old, the ASD began to close. so they put a stent in it to keep it open and allow blood mixture. the plan was to remove the stent when he had his Glenn last June. however, when dr c was in there he saw for the first time that one end of the stent had grown into and embedded itself in asher's atrial wall (the wall of his heart, not the septum between the chambers; the stent has grown into the heart muscle). he realized at that time that it would be too "problematic" to remove the stent.
fast forward to the last few months. asher's oxygen saturations in his blood (sats) have been dropping steadily, and he is now sitting around 69-75%. this is not good. in fact, it's terrible. at this point post-Glenn, a single ventricle child's sats should be at least in the high 80s. prior to discharge from CHWO last month, cardiology discovered on an echo that one of the pulmonary veins shows some narrowing. toronto agreed, and they did the MRI.
ok, so you're up to speed. now here's what TO doc had to say:
asher's ASD stent appears to be putting pressure on the pulmonary vein, preventing red blood (the blood with oxygen) from coming from the lungs to the heart. so, the stent must come out. and dr c (who is really the boss when it comes to this stuff) feels that it must be done sooner rather than later. in fact, they will be presenting asher on monday to set a surgery date and to discuss the plan with the whole cardiac team. they will present the stent removal, but also discuss the possibility of doing the Fontan as well. (the fontan is not part of the plan right now, but they are putting it out there for discussion.) either way, with or without the fontan, this will be open heart surgery soon.
please start praying now. as it is, asher is very pale and tired. he is, despite appearances, in weak and deteriorating health. and now, the only solution is very risky open heart surgery. they need to dig a piece of metal mesh out of my baby's heart.
please pray for us. this is very discouraging, since we had been told "we're likely going to stent the PA's and coil off some collaterals." now it's "he needs open heart surgery now-ish." quite a roller coaster. pray for asher, that he will continue to fight. physically he is weak, but he has the strongest spirit i have ever seen. please pray that he can continue to fight through this. please pray for blithe and bram. this is especially scary for them, since they don't fully understand what's going on, just that asher's not doing well and he could die. please pray for dr c, as he plans this surgery, one that he didn't want to do in the first place, one that may not end well, one that is extremely difficult and stressful for him.
in the meantime, as scary and upsetting as this is, and as heartbreaking as it is to receive such bad news, pray for us. pray that we will cling to One who made asher the way he is, the One who has promised him strength to match his days. pray that we will continue to throw ourselves on Him for comfort and peace, and to trust only in Him.
you know, it's interesting, a little bit of GOD fell into my inbox this afternoon, in the form of an email from my friend joanna (another heart mom). i am convinced that God planned for me to get that email this afternoon, before writing this post, to encourage me and lift me up. so here is my prayer, for us, and for you as you read this:
It is better to trust in GOD than to put confidence in man. Psalm 118:8
what a wonderful, timely and encouraging reminder, especially at a time like this. thanks, joanna.
so, all your prayers and good vibes and whatever you call what you do are hugely appreciated right now. we don't know what the future holds, but GOD does, and He will make sure that everything happens according to HIS perfect plan. we're trusting Him, and i'll be praying that you do, too. h
Monday, March 24, 2008
nursing visit this morning, bright and early. vitals seem to be returning to normal, but there's a few residual/on-going issues. nurse elaine noted "trace edema," meaning he's puffy, but only if you know what you're looking for. not a huge issue, and definitely better than he has been, but still, it's there. now for the crappy (literally) part of the nursing visit: asher hasn't pooped since thursday. usually he goes every 2-3 days, so this 4 days is concerning, esp since it took 9 days for the last one. so, ed pumped him full of peg tonight (a powerful laxative) and that should get things moving in the morning. the problem is this: asher is weaker now, as he is still recovering from a nasty bout of congestive heart failure. you saw on the video how he kept pausing during his play. that's b/c he gets tired and can't catch his breath. anyway, he has some weakness, some fatigue, and given that his sats are so low, it means that his body can't function at it's best. it also means that he may not be quite strong enough to push when he needs to. this is likely causing the constipation, since the poop's not hard or anything. he just can't push it out.
ok, so now onto other, less smelly stuff. his colour sucked today. in fact, it pretty much sucks all the time now. pale and blue are not attractive colours for him. let's see, what else? ah, yes. we discussed oral feeds with elaine. she seems frustrated that asher is still not eating anything by mouth. but you know, every once in a while we try it, and he aspirates (food goes into his lungs) and he chokes. not good. and then with the CHF this past month or so, i didn't want to work his body too hard, so i didn't bother. but now that he's recovering (still in the process; he's not over it) i'm ready to give it another try. so, i bought a jar of sweet potatoes to try with him. and.... it didn't go so well. he had 2 small tastes - no measurable amounts, just tastes - and his breathing immediately afterward was loud and wet and laboured, he coughed and his colour went bad, and then he got irritable (not that i blame him. i'd be ticked off too if i had yams in my lungs!) i'm going to be discussing this with dr b (paeds) tomorrow at asher's 15-month check-up (already! can you believe it?!). but my plan at the moment is to try again tomorrow or wednesday, but thicken it a bit with rice cereal. we'll see how that goes.
other than that.... we went to see the tundra swans again today. he absolutely loved it! i don't think he actually saw any swans, but he watched blithe and bram who spent the whole time fighting over Dad's binoculars and exclaiming, "i can see them close by! i love birdwatching!" seriously, my children! love birdwatching! who knew?!
it felt so good to be outside today. especially to be outside with all my kids. i'm so happy the weather's getting nicer, i can take my kiddies for walks (not long ones, since asher can't handle the cold and wind, but around the block shouldn't be too much). well, that's that for today. i'll post more tomorrow, after our appt with the paeds. h
Sunday, March 23, 2008
i hope this works. i've never added a video to a blog before. (see all these advantages of blogger!)
asher had SO much fun playing with his balloon this morning. this is often how he plays, esp when he's really excited. or overtired. he doesn't like to stop, so you might notice little pauses here and there, but this is a little view of my "sick" baby. enjoy! (and when he suddenly turns electric blue half-way through, that's not him. he's pale/blue today, yes, but not like that. the lighting was bad at the time.)
please ignore the camera work. it's the first time i've used the video feature on my camera, so i didn't think it was filming when i sat down. hence the very shaky camera work at the beginning. and then he kept moving! what's up with that? you can tell i don't ordinarily use the video camera, i don't know what i'm doing. ah, something new for me to figure out.
anyway, gotta go set up his feed. mom and i took the kids out to see the tundra swans in aylmer today; we just got back about half an hour ago. it was awesome - over 1200 swans! beautiful! i took some pictures, i'll probably post and scrap some later, but that will be on my scrapbooking blog. well, talk to you later! h
Thursday, March 20, 2008
there are 2 people who's job it is to do up the MRI reports. one has been off sick all week. the other person is on holidays.
so she doesn't have a report yet.
she said that if we haven't heard from her by midday tuesday, we are to page her.
ah, hospital timelines...
on the bright side, though (since i believe there always is one)... at least we know asher won't be having surgery till after easter. but still! arg.
btw.... thank-you so much, joyce, for the groceries you sent over this afternoon. i can't tell you how much we appreciate your generosity. (and thanks, pam, for dropping them off.)
Wednesday, March 19, 2008
his alarm would beep. now, usually, ed gets up in the night and deals with it, and i sleep through it. not a problem (well, for ed it is, but i'm not complaining). well, last night, for some reason, and without it being discussed with me beforehand, it was my turn to deal with the pump/tube stuff. that's fine, i can do that, i'm not sleeping too well in the bed, anyway, what with all those random limbs flung haphazardly about, and usually in my direction. well... i get up, flush asher's line, spilling water all over him, because it's hard to pinch off the tube when it's buried under blankets. so there is a delightful mixture of water, formula and stomach contents dripping all over me, asher, his sleeper, the blankets and the sheets. nice.
but wait! it gets better! i go back to bed, stumbling over asher's laundry basket and blithe's jeans, which are in my room because hers is full to the ceiling with her and our stuff. nice. well, i go to climb back into bed, but find that now, blithe has angled herself in such a way that it would be impossible for me to fit into the 3 square inches i have left on the bed. well... i want to move her over. no problem, right? WRONG!!!! because, you see, ed is lying on his back, taking up a normal, adult amount of room, and on his other side, is bram. don't know when he joined us, but clearly it was long after i initially fell asleep. so, i graciously and gently and serenely asked ed to make some room (read: i swatted him and ordered him to shove over). he politely replied, "oh, of course, so sorry, dear" (read: i think he grunted something and flipped onto his side). then i moved blithe over, who weighs a ton when she's sleeping! and slid into bed beside her.
this happened one more time, an hour or so later. finally, the third time, the alarm was beeping and asher was sitting up and crying. the alarm was beeping because asher was ticked off and started pulling on his tube, and it came dislodged from the pump. and let me tell you, that beep is the worst beep there is. it's like a beepy equivalent of nails on a chalkboard, only shrill, constant, shrill, like it piercing into your brain and frying every nerve in your brain and IT JUST DOESN'T STOP!!!! IT'S THE WORST SOUND IN THE WORLD!!!!!! and at 5 in the morning, when i'm being woken up too early in too little space on the bed, with someone else's arm under my head and a 5-year-old knee in my spine, i simply am not emotionally equipped to handle this situation. so i pleasantly said to ed (read: something between yelling and snarling) that i'm too tired and he can deal with it for once! (notice the "for once" comment. yeah, i'm really not the nicest person at 5am!)
ok, so, asher is crying, i'm b*%^#$y, ed wakes up, tries to deal with the pump. but asher is still crying. i think ed bundled him back up (yeah, b/c when i'm throwing a fit i want someone to tie my arms down and lay me on my side so i can't move. you can imagine how that went over with ash.) asher did not stop crying. i say, "FINE! I'M TAKING HIM FOR A DRIVE! AT LEAST THEN I CAN GET SOME COFFEE!" of course, i had no cash, but that comes later.
i go downstairs to get dressed because if i stay upstairs someone will go flying out the window involuntarily. so i do what i'm teaching the kids... back away.... breathe..... of course, as i'm ready to go, ed comes downstairs - at 6am - with asher, asher's pole/pump, blithe and bram! he says, "you might as well stay home, since we're all up now."
an hour later, i was in the drive-thru at mcdonalds getting breakfast and the freaking biggest cup of coffee i have ever ordered. (i'm at mcdonald's b/c i don't have cash, so timmie's is out, and i can just use debit for a mcmuffin combo) i think you can fill in that hour gap. just remember these few words, and you can figure it out: hormones, cranky baby, hormones, cranky mommy, hormones, chattering children, beeping pump, no coffee. yeah.
well, i come home and get to work on cleaning off my desk. i find a new mastercard i didn't know i'd gotten, some stuff about blithe's immunizations from the health unit, newsletters from blithe's school, you name it, if it has entered my house in the last 2 months and i have not yet seen it, it was on my desk. (see pictures in my scrappin' blog, if you're curious. they'll explain everything.)
so, to recap: it's 9am, the kids are loud, mommy's cranky, asher's in a foul mood. poor ed. and then the day got frustrating.
i know what you're thinking: "at this point, i'd be ready to run away, change my name, and start over with another family living another life, and we're not at the bad part of the day?!" that's right. from now on, you can call me Louise.
so, asher's crawling around the house, because God forbid one of my children sit still for 2 minutes. especially the one with half a heart and congestive heart failure. why would he sit still? you can hear him huffing and puffing on the other side of the house, but does that slow him down? oh, no! that would make sense! do i sound bitter? anyway...
he scoots into the kitchen. the IV pole gets caught on the floor between the kitchen and the dining room and falls over, missing asher by literally less than an inch. now my heart is failing, but whatever. well, we pick up the pole, and as we do, what do we hear? a beep worse than the one described above. seriously. turns out, there's some sort of system error, call tech support. we turn the pump back on and try to run it. same beep, system error, call tech support. we tried 2 more times. then we called tech support. *shaking head* turns out, there's a problem with the motor so we have to send it in for repair. but, we need this pump, it's the only way asher can eat, since he gets nothing by mouth.
ugh. a thousand phone calls later, we've got a loaner from yurek's in town, they've talked to kangaroo and told them that we NEED this pump right away. so, likely tomorrow we'll get a brand new pump, since they're just going to take back the one we have.
and i had just used my Around the Block tape writer (that i can reach again - see my scrappin' blog for details) to put asher's name on the pump. on a lovely bright green label. sigh.
well, we get respite later today, which means B&B go to the in-laws and ed and i go out for mila nesa (yummy mexican dinner).
serenity now, serenity now, serenity now.....
Tuesday, March 18, 2008
i also have a couple other heart kids to mention tonight:
ryley, a little girl who had a heart transplant a couple years ago, was in for a biopsy last week (same day as asher's MRI, actually; it's nice to wait with friends). it was basically supposed to be a follow-up, make sure everything was still ok. turns out, ryley has some mild rejection.... again. this is very hard on them. ryley will need more meds (steroids, immuno-suppressants) and more bloodwork to check on her immune levels (it's the immune system that causes rejection; you need to suppress it to avoid rejection). she will also need another biopsy next month. please pray for ryley and her family during this stressful time.
also, another little heart baby, atticus, out in edmonton. hlhs, post-fontan, had some SERIOUS complications, had a transplant. he's been in hospital since november. i've been following his blog, and their winter makes ours look simple and easy and healthy and normal. seriously, they've had a rough time. well, HE'S GOING HOME!!!! his sats have been at 100% for a while now, and other than some feeding issues and muscle tightness (he's been lying in bed for 5 months), he's good. they live in the same city as the hospital, so if need be, he can be quickly re-admitted, but his issues can now be handled at home. they are very excited (duh!), and i'll admit, i cried when i read it. what a wonderful blessing, and right before easter. please remember this family in your prayers, too, especially during this season of new life!
ok, so, not much about us, but stuff about other kids. but, none of us can make it through life with these kids on our own, we need all the support we can get. thanks so much! h
Monday, March 17, 2008
oh, he is sooooooooooooo my boy. look at him, rrrrrrrolling up the rrrrrrrrrrim to lose, er, i mean, win (but that's more a comment about timmie's instead of asher. every year tim tests my love, and what does he give me in return? nothing. well, maybe a coffee every now and then. and copious, nay, obscene amounts of caffeine, but i mean, really! lol)
this was 10 minutes ago. apparently, no one has told him he has constant heartburn. on the other hand, that never kept me from the black liquid of life, that precious elixir, that sweet ambrosia of the gods.... mmmmmmm....... coffee.........
after dr f (nephro) put asher on hydrochlorothiazide (fine, pam, HCT, but i like that i can say and spell the whole thing), the puffiness seems to be going down a bit. his diapers lately must weigh a ton. but, as much as that is improving, the script is for 3 months, which means that this is an on-going med for my boy. probably a good thing, since CHF is an on-going concern for my boy.
now, the puffiness is getting better, but everything else is still there. i'd say that his colour is bad, but that implies that he has colour today. he's still incredibly tired and short of breath (you can hear him in the next room at times!) and irritable! let me put it this way.... i want my happy baby back. i have enough tantrums to deal with from blithe and bram. asher was always the "quiet" one. my easy, low-maintenance child. not so much lately. but, hopefully, once cardio's done doing what they need to with him, he'll be better. same thing happened when he got his ASD stent. he was cranky, they stented him, he was happy and pink. so, here's hoping......
anyway, we're waiting to hear from toronto. she said she'd call early this week. and maybe monday afternoon is too early for them to call, but it's not too early from my end. just let me know what's going on so i can plan something!!!!!! (you know, like my b-day. my 30th. on saturday. so, to recap, my 30th b-day is on saturday, 22 march. lol) but seriously, i have other things to plan, too, like childcare while we're in toronto, and menu planning in the meantime, tons of stuff! arg.
ah, well. such is life with asher. unpredictable doesn't even begin to cover it. but, that just makes life more interesting. if we could plan everything, it just wouldn't be our norm, would it? lol h
on caringbridge, you can get automatic updates when i post. unfortunately, blogger doesn't do that. so, i would suggest you bookmark this page, and check back often. there's a lot happening in asher's world right now, so really, i think i've been posting at least once a day lately. honestly, check back often.
thanks, and sorry for the confusion.