The Plan (at the moment....)

dr russell called this afternoon. here's the plan:

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

the surgeon called this afternoon

and answered my questions and told me about the plan, as it stands right now. here's what we discussed:

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

a little progress report

well, after 2 doses of peg (the powerful laxative) ed finally had a very yucky, but very welcome, clean-up job this afternoon. and given asher's, um, issues with this lately, we've decided to go back to daily doses of the stuff. poor little guy. but we can't have him gettin' backed up, because man! does he ever get cranky!

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!

SickKids in the News

SickKids was in the news today!

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:
http://www.sickkidsfoundation.com/news/newsbmochair.asp

as well, The Toronto Star featured the stories of many children who have been helped by SickKids. here's the link:
http://www.thestar.com/sickkids

happy reading! h

start praying now

i just talked to dr r (asher's toronto cardiologist). she has finally gotten the results of the MRI. and after reviewing them, and discussing it with dr c (asher's heart surgeon), they have figured out what the problem is. and it's not anything that had been discussed before.

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

don't quite know how to describe today

but i'll try. and i need to warn you now: the next paragraph talks about asher's constipation issues, so you might want to skip it and move on to the next paragraph. or read it. whatever. it's up to you. but you've been warned!

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

Asher loves balloons! (i hope this works!)

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