Home!!

Wendy here -  Thought you'd all want to know:   Heather and Asher are coming home today!!   As for the details?   I'll let Heather fill you on those a wee bit later!

I WASN'T EVEN TOLD TO LOOK FOR THESE SYMPTOMS TILL I GOT HERE!!!!

so, last night i asked asher's nurse for some information about arrhythmia. i knew they had pamphlets and booklets about it, but i was "stuck" in his room, so i couldn't go hunting them down. but they love it here when parents ask questions and want information. so... she got me a pamphlet and printed off several pages about it.

and i started reading. and learning. and i think i know what the issue is, but i may be wrong, so i'm not going to say here. it's just a thought at this point... BUT! i learned about symptoms and signs to watch for.

so when asher woke up at 2am and cried, "mommy, i getting dizzy again!" i jumped out of "bed," called the nurse  and ran over to asher. "you're dizzy right now?" "yes." "does this happen a lot?" "yes."

excuse me while i vomit. i had assumed he didn't have any symptoms, because he wasn't telling me anything. and i didn't know what symptoms to watch for or ask about, because i hadn't been told in london. just that "if he crashes at home, there's nothing you can do about it there."

this morning, i asked asher again if he gets dizzy a lot, and he said yes. then i asked if his ears ever feel like they're stuffed with cotton balls. "yes." "honey, does everything go black sometimes when you're awake?" "yes." "a lot?" "yes."

he's been having these symptoms all along, and he never told me, and i didn't know to ask!!! because i wasn't given any information about this.

so please pray/cross your crossables/send good vibes for asher. so far today, he hasn't had any symptoms, his HR is closer to normal, and i haven't seen the weird rhythm. but it's only 3:00 in the afternoon now, so who knows what he'll do later...

i'm scared out of my mind now. his nurse last night came in often to check on him, because she could see at the front desk that his HR was getting low (they turn off the monitors in the rooms so everyone can sleep, and send the signal to the nurses' station). asher's heart rate kept dropping - and sitting! - in the low 40s all night. and kept doing the weird rhythm. her words? "yeah, this is pretty scary." and when a cardiac nurse, who has seen it all, says this is scary...

i just want to cry.

and i can breathe again :)

well, here we are in toronto. we got here shortly after lunch today, and let me tell you, within minutes of arriving, i was feeling better.

once we got settled in a bit, dr russell (whom i adore!) came in to see us. and you should know that, while she and i spoke, she was turned to face his monitor the whole time... the monitor which was showing his heart rate in the high 50s. and doing the beat beat pause thing. yeah.

dr r filled me in on their view of things: at this time, they don't think asher needs to be paced, but they're going to monitor him for a few days, see how he does and figure out exactly what's going on, run some tests, that sort of thing. but we're definitely here for more than a couple days. she used the phrases "over the weekend" and "hopefully you'll be home by the first of april." honestly, i'm not looking forward to another loooong admission (we're already at the end of day 8), but they're going to take this time to come up with a good plan which will address all of asher's new little quirks.

and this is all absolutely wonderful, if you ask me!

and i already have a pile of information about arrhythmia and such in asher's room as i type this, and i'm going to read through it tonight. surprised?

oh! and you might like to know (at least those of you who will understand this tidbit), that asher's sats this afternoon/evening were - sit down before you read this - 96 to 98%!!!!!!!!!!!!!!!!!!!!!!!!!! for those of you who don't understand that... THAT'S NORMAL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! mind you, his HR is still in the 50s, but at least his sats are spectacular!!! dr caldarone, i think i love you!!!

TRANSFER!!

Wendy here:   Heather just told me that they will be transferred tomorrow at 10am via Voyageur Transport.   A huge sense of relief - only a few more hours until Asher is in the care of Sick Kids and the cardiologists and surgeons who know him best.   Thoughts and prayers that it's a smooth transfer and they get settled in quickly tomorrow.

Update

Hi all - Wendy here updating for Heather:   After yesterday's upsetting news in regards to Asher's care, there are some positive changes on the horizon.    Heather, being the amazing advocate that she is for Asher, sent out a text message that she is asking for a transfer to Sick Kids.   I don't have specifics, she indicated it was a very long "gothic type horror story." I do know that Liz (the NP) has been on the phone to Sick Kids arranging the transfer.   I also know that Sick Kids has ordered a fat free diet for Asher because he's showing all the signs of chylo and a fat free diet is the treatment.   Heather's response "this feels better already".

As of now I do not know when Asher will be transferred or how.   When I hear, I'll update again.   Keep them in your thoughts and prayers please that this happens very soon and that Sick Kids gets to the bottom of Asher's rhythm issues and grey colour.

Wendy

Speechless

Wendy here :   This is the update I got from Heather this afternoon -  Sick Kids had their conference and discussed Asher.   They decided "no pacemaker", they decided to stop his Carvedilol under the assumption that it could now be causing his rhythm issues, low heart rate.   And that Asher can go home once he drains less than 60mls/hr.   As you can only imagine Heather is very unhappy with this news.    Nobody can explain why Asher is grey - Liz offered the explaination of "poor lighting" and "low hemoglobin...but not low enough that we'd treat it".   And they are still not treating the Chylo....it's running out like milk, over 1100ccs so far since admission.   Tests are negative but given the treatment is a fat free diet, one would think it would be worth trying.   They offered some thoughts about "residual stuff draining out that looks like chylo but isn't".

Dr. R and Dr. C were called/emailed today (cardiologist and surgeon) and there's hope that they were busy today and didn't receive the messages or participate in the conference and perhaps they will feel differently about Asher's course of treatment.

I'll stop now because I don't want to rant all over Heather's blog, but know that Heather is not happy with this plan, and I am sure Heather will fight to get Asher what he needs.

To finish with a bit of good news - Asher won the toy draw and got a great Leap Frog toy that he's happily playing with.   He's such a trooper, still happily playing with so much going on.   Love that sweet boy!

Prayers urgently needed!!!

Wendy here - Heather asked me to update:   Things with Asher are pretty scary right now, his sats are, ironically, "fine", his BP is "ok" but his heart rate is very low - it's gone as low as the 40's, sitting in the 60's but it has a very wonky, dangerous rhythm going on.   And sweet Asher's overall colouring is not good.   He's a dark grey which is really scary (heart moms know exactly what we're talking about here). He's still showing signs of chylo (looks like straight milk coming out of his tube).   Tomorrow the team at Sick Kids meets to discuss what to do for Asher - Heather is praying that they decide to go forward with the pacemaker.   This is a very scary time for them and the waiting and wondering is very difficult.   Please pray/positive thoughts/vibes for Heather and Asher tonight to stay strong and also for the doctors to decide to get Asher over to Sick Kids without delay and to determine what is needed to help Asher get back to his sweet, playful self as soon as possible.

why haven't i learned anything about electrophysiology yet???? this is beyond me...

beat beat pause beat pause beat beat pause beat pause

and read that at about 52 BPM. that's what he's doing this morning.

and i've discovered that i don't know nearly enough about this stuff. so if anyone reading this has any books about heart rhythms and electrophysiology and ECG and stuff, could i please borrow them? i'm a quick learner, so you'll get them back soon. thanks so much!

oh, please tell me this is all just some horrible dream...

so, we were supposed to go home today. either tubeless or with a JP drain. instead...

we're staying put.

so far, since tuesday night, asher has drained over 500 ml from his chest. the chest x-ray this morning showed some improvement, but it's not gone, and liz wouldn't even call it "good." just "better." and it's still draining, albeit slowly. so the tube is staying in. we also have to get asher walking around and doing some deep breathing and coughing. that should help, especially because he has been splinting his right side (where the tube is). so that sucks.

then liz kept talking.

asher has been showing some weird rhythms while we've been here, and his heart rate is sitting in the 40s and 50s. not good. they've already talked to toronto, who said that asher should be on a holter for 24 hours, then they will discuss him in cardio conference on monday afternoon. at that time, we will either go home...

or to toronto...

for a pacemaker.

because this new rhythm he has is dangerous.

i'm completely heartbroken and terrified and confused. asher was asleep when they put the holter on, but he won't be happy when he wakes up. and he's really going to unimpressed when we make him walk around later today.

please pray/send good vibes/cross your crossables... whatever it is you do, please please do it now. thanks.

Progress!

Wendy here - Just spoke with Heather and they are now on the ward! They usually get a quiet room to themselves, but apparently they've got a roommate which is never ideal.

Nephro wanted a urine sample before giving Asher the Lasix (diuretic). Cardio (who Heather thinks is just humouring Nephro) snuck Asher a half dose of Lasix and voila! They got their sample!   Hopefully this speeds things along and they get Lasix on board at full dose to pull the fluid off Asher. He's puffy and this will make a difference.

i'm just gonna cut & paste my FB status, b/c i liked how i worded it, and it sums it all up so very nicely...

Heather is relieved to know that nephro will (likely) approve a switch to lasix from HCT, but first they need a urine sample. um, hello? why do they think we need a stronger diurretic? LOL meantime, asher is finally, for the first time EVER, getting switched to a low-sodium diet. but "hopefully we can get him off that before you leave the hospital." phew! b/c it's not like he has CHF or hypertension... oh, wait... sheesh!!!

hospital admission #24

hi, folks, heather here. thanks, wendy, for keeping everyone up-to-speed on the goings-on in asherland. :)

shortly after i got here (i went home to sleep... got about 3 hours, but i feel, um... not sore. tired, absolutely, but i'm not hurting, so i'm functional), i talked to liz (london cardiology NP). here's the deal:

the chest drain was placed last night around 10:00, and by the time i was called back in around 11, about 250 ml had drained already. that's a quarter of a liter. (for you non-metric/non-hospital-dwelling types, that's over 8 oz). by 9am today, the total that has drained is over 350 ml; approx 50 ml (almost 2 oz) since 7am. yeah. the drainage was very dark (bloody) last night, but it is slowly becoming lighter (straw-coloured). but because of the high amount of drainage, we are going to be here at least one more night, especially since the air entry in his right lung is still decreased to the base (doesn't go all the way down; basically, he's not taking in as much oxygen as he should be). but if there is a bed open on the ward today, we will be heading up there. otherwise, we're stuck in the unit for another day, but not because we need to be here. as the PCCU doc said to me this morning, "he certainly doesn't look like an ICU patient today." so we (by which i mean, i) are hoping to go upstairs today.

the tube will be staying in one more day at least. the drainage is simply too much to think that we can safely remove it yet. the problem, however, is that the tube they used is not a JP; the one they gave him is very stiff, making it very painful to move, since it gets stuck on things and tends to pull and rip (liz's words, not mine. i was busy trying not to vomit when she said that). so the tube we have now is not conducive to going home, which means that, as long as he has this tube in, we're here. but... liz is going to look into changing the tube to a JP, which is more flexible. if we can change the tube, we can go home with that. she said she could show me how to empty it; i laughed and told her i already know how to do that.

meanwhile, they're going to send some of the drained fluid to the lab today to test for a few things. i know there were three things they wanted to look for, but i only remember two:

1. culture. they want to see if anything will grow. liz thinks it's unlikely to grow anything, but hey, it's asher, and you never know with this kid, so we're trying to cover our bases.
2. re-test for chylo. the NP in toronto tested him on the very cusp of chylo-testability, so just to be sure, we're testing again.

another issue that has come up is that, this morning, asher's belly is round and hard. liz is going to consult nephro. because asher has a history of calcium in his kidneys (nephrocalcinosis, for those of us who like technical terms... which is probably just me... yes, i'm a nerd), we are limited with the diurretics we can use. lasix is the usual go-to for diuresis, but that med tends to cause calcium to build up in the kidneys. the very problem, you'll note, that asher has. yeah. so for a couple years now, asher has been on HCT, which has (generally) been doing well enough, but it's just not strong enough right now. so liz will be asking nephro if we can switch to lasix for short-term use. i'm anticipating that they will ok the switch. dr filler (asher's nephro) has told me a couple times that, if they max out the HCT and it still isn't enough, then they can switch him to lasix temporarily. here's hoping he still thinks that way.) we really need to get this fluid off; it can lead to very big problems for asher: heart issues and blood pressure, kidney issues, respiratory issues... yeah, it's not pretty. this fluid, both in his chest and in his cardiovascular system (which is where pee comes from, for those who wonder why i'd be talking about kidneys and pee but only refering to the CV system), absolutely has to go. we cannot keep it on board.

i will try to update here as often as possible, since i have found a delightful little computer in the unit's waiting room. however, if i can't do a full update, i will post on my facebook and/or text wendy, and she will update the blog for me. (yes, wen, you're forgiven for hijacking the blog last night. lol)

Chest Tube is in and.....wow

Wendy again - Asher was heavily sedated last night and a chest tube was placed.   Heather is heartbroken because that drain on the right side drained 250ml within 5 minutes and it's still draining.   For those that don't know about the world of chest tubes, that is A LOT of fluid to drain out over a few hours, let alone within 5 minutes.   This likely explains why Asher was having chest pains and difficulty breathing.  Heather said that the PCCU doc doesn't think the drain should come out in the morning, he'd rather leave it in at least all day, then take it from there to avoid another admission/tube insertion in a week.

Please keep praying for Asher and Heather.   Hospital admissions are very tough & mentally exhausting even when you know it's necessary.   Let's hope that all the fluid comes out today and they are on their home very soon.

p.s   I'm sure Heather would never turn down coffee or poutine for those that know where they are and have her cell to reach her :)   Comfort food does wonders for ones' spirit.

UPDATE FROM HEATHER: wendy forgot two things. i take my coffee black. and i also accept chai lattes. LOL

Update on Asher

Wendy here - Heather asked me to update (so clearly she has forgiven my high jacking of her blog :)

Asher's pocket of fluid on the right side (the one that was noticed at clinic last week and was still present yesterday at clinic) has gotten bigger.   His chest hurts and it hurts to breathe.  Cardiology has spoken to radiology.   They've been admitted to the PCCU at Children's hospital and shortly they will be placing a chest tube to drain the fluid.   They'll be there overnight and if the drainage has slowed by morning, they will hopefully get to go home.   Asher's O2 sats are great at 97%.   Dr. C will be consulted in the morning, which is good because he's amazing, knows Asher VERY well and Heather trusts him.

Prayers and positive thoughts that the fluid drains out tonight and this is a short stay and that they both get a much deserved break very soon.

Thank you

Prayers Please

Wendy here....hope Heather forgives me for high jacking her blog, but I felt that this was important.

Heather and Asher are on their way to the Children's hospital ER as Asher is having chest pains and it hurts him to breathe.   This is scary for them both and I know how much Heather would appreciate your prayers, vibes, thoughts for Asher right now.

Thank you

Holy oxygenation, batman! Look at those sats!! (aka, “holy Speedy Gonzalez, batman! We’re already home!”)

Sorry for the two titles, folks. I (and others) preferred the oxygenation title, but Asher preferred the speedy Gonzalez one. His words: "i love that one, mommy." Sigh. I suppose i should humour him... it is his blog, after all. Anyhoo...

So, we're home!! J
Here's the low-down:

We were discharged from sick kids on Tuesday. The only reason we were in as long as we were (discharge papers word it this way: "Discharge was delayed due to persistent, non-chylous chest tube drainage.") was that pesky tube, but the drainage had slowed enough that they pulled the last drain and sent us home on Tuesday.

Meanwhile, however... wow! Was he ever cranky!! Mind you, i'd be a little ticked, too, if all my ribs were broken and someone had carved me up like a Christmas turkey, so i can't really blame him. But still! I'm not used to this! He's the happiest kid i know! So this was hard to see, but we managed. We stayed overnight in Hamilton with my family. We both wanted to see the other kidley-winks before heading home. So the plan was to come home on Wednesday. But... and yes, there's always a "but" in asherland... he threw a fit and demanded we stay one more night with "blivey and bramby." So i humoured him, and we stayed one more night. But we had post-op clininc at London cardio on Thursday morning, so we absolutely had to leave then. Which we did.

And here's how post-op clinic went:

Registered at 11 and went right in for our echo. I warned the tech (Jamie. Love her. And for those London heart moms out there... check out her ink next time you're there. It's really cool. But i digress...) about the quirk with Asher's fontan. And now, writing that sentence, i realize that i may not have posted about that here. So here you go: Asher had a "fenestrated fontan" which means that they put holes in the new wall which directs bloodflow straight to the lungs. These holes are intended to ease the transition to this new circulation and new pressures. Well! They know they put holes in there... but they can't find them now. Asher has had 3 echos since then, including and trans-esophogeal echo done in the OR, and they cannot find any flow into the right atrium from the IVC. They've looked, and there just isn't any. So i like to refer to this as an "unfenestrated fenestrated fontan"... the one complication from Asher's surgery. Haha so anyway, Jamie looked and looked but couldn't find the fontan. But otherwise, an uneventful echo.

Next up, bloodwork. Which was closed for lunch by the time we hiked all the way up there. Sigh. So, down to the first floor for a chest x-ray. With which our hero was not impressed. But he did well and got some fun stickers out of the deal, so no major complaints.

After that, hike back to clinic, because it's not nearly time for the lab to be open again. But, of course, no one was around in cardio, so we headed back to the PMDU for bloodwork.

Which was awful. They couldn't get in the vein in his one arm, so they switched to the other. Two pokes, plus lots of fiddling around in there to get it into his very scarred vein, and Asher left with a bit less blood, two band-aids, and a great new hot wheels car with a hood and trunk that open. So he was (relatively) happy... and hasn't let go of that car since, by the way.

Back to cardio. ECG went well. Uneventful, in fact. (wow, i love that word!!). his blood pressure is still high (114/65... mine is 110/70. Anyone see a problem there? That's right. My 3-year-old has higher blood pressure than me. Nice). BUT!!!! And make sure you pay attention to this... Asher's sats were... get this...

96%!!!!!!!!!!

Ok, i just realized that not everyone knows what that means or why we care. "sats" show the amount of oxygen that is in the blood. Most of us reading this post have sats in the 98 to 100% range. That's normal. Before surgery, Asher's sats were 78 to 84%. And now they're almost normal!!! Can you believe this?!?! Never thought i'd see the day, but here we are!!!!!

There is another issue remaining, however. Apparently, Asher wasn't done draining. So there is now a pocket of fluid on his right lung. They saw it on the echo and the x-ray. So they're keeping his diurrectic (HCT) at twice daily for now (it was once daily pre-op) and we're going back to clinic for another chest x-ray on Monday. Oh, joy.

So Asher is now on quite the old man cocktail of meds. Three meds for blood pressure (carvedilol, which also helps with rhythm; ramipril, which also helps with function; and HCT, which also helps his kidneys), and one blood thinner (warfarin, which my grandfather was on for years). And he doesn't like any of them. He used to be so good with his meds. Now he not only complains, he turns away with a "hmph!" and says all-too-emphatically, "i don't like you, mommy. I don't want medicine. I don't like you, mommy." Gosh, isn't it swell that he can talk now? (why, oh why can't you hear the sarcasm?!)

But being home has definitely helped his mood. He is now usually happy and chipper and playful, although he still gets cranky and has a wicked short temper, but it's getting better... slowly. But again, i completely understand. In his mind, i didn't protect him from the doctors, i didn't stop them from hurting him, so he's angry. I understand. It doesn't make it any easier to hear/see, but i understand. And the fact that i can't pick him up properly the way he wants me to doesn't help, either. But he likes to cuddle with me and wants me to carry him a lot and chats my ear off, which is nice and makes those cranky moments a little easier to handle.

But there you go. Probably not my best writing, nor my wittiest post, but i'm tired. Maybe when i'm not quite this tired i'll edit/repost. Maybe. But don't count on it. ;)

oh, wow, isn't this fantastic? (the problem with blogs is that you can't hear the sarcasm in my voice)

so, this should be interesting. they're opening a new $100million research centre in hamilton, ontario. they will be researching heart and stroke prevention, diagnosis and treatment. isn't that fantastic??

except for one minor problem.

they aren't researching congenital heart disease. only acquired heart disease.

you'll understand if i'm not thrilled about this. don't get me wrong, i appreciate the need to research acquired heart disease. it affects millions of people around the world every year. but, um... what about the people who have heart disease who did nothing other than be born?? do they not count? or is researching the #1 birth defect not important. in canada, 1 in 70 babies is born with heart disease of one type or another (and there are over 100 kinds, of varying degrees of severity). i guess they don't count.

you can read the article about the reseach centre here. and fyi... i'm planning on writing a few letters about this. to the research centre, the spec and other local news media, the local MPP, the minister of health... because this just isn't right. these kids are overlooked too often. and that's gotta change. grrrr.

i'll post more details later, but for now, all you need to know is...

WE'RE GOING HOME TODAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

so, um, yeah, about the last post...

disregard it.

because within an hour of publishing that post, asher was back to his usual self. chatty, smiling, "i just love you, mommy," "i want play with train table, mommy"... yeah. his colour is better (though still on the pale side, but much better), his appetite is coming back, he's drinking more... yeah. sorry for the scare. i was terrified last night, but as of this afternoon, we're just waiting for the draining to stop. it's getting slower, so i'm thinking we'll only be here a few more days. (frankly, i'm holding out for thursday and joanna's yummy-sounding peanut butter and banana muffins. LOL)

i'm baaaa-aaack... with mixed news

thank-you so much to wendy and mom for keeping the blogosphere up-to-speed on the goings-on in asherland over the weekend. i was much too busy visiting with blithe and bram. and don't worry, wen, you did just fine. lol so thank-you. <3

so i'll get the good news out there first, so no one has a heart attack when they see this on facebook (wendy and tanna, i'm looking at you!)...

asher is now in a much better mood, having visited with his brother and sister two days in a row. he really misses them, and i know they miss him, too, so it was lovely to see them all together. asher and bram had tons of fun playing with the train table in the playroom. the kids were even enough to inspire asher to walk down the hall... under much protest, i should add, but he did it, nonetheless, since it meant play-time with his brother and sister. so that's lovely.

and before i forget, his drainage tested negative for chylothorax. wendy did a great job describing it the other day, but for those who don't remember, a brief re-cap: during heart surgery, it is possible for a lymph node to get nicked. the lymph nodes take fat out of the blood, and when it is nicked, the fat (chyle, pronounced "kyle") leaks out into the cavity around the lungs and heart. left untreated (treatment is a fat-free diet for 6 weeks), it will slowly suffocate the patient. asher had it after his glenn and it sucked, to be honest, so when they were concerned about it on the weekend, i was worried. but it's negative, so i'm happy.

he is also eating more. last night at midnight he asked for eggs, so i got him scrambled eggs and hashbrowns for breakfast, and he ate more this morning than he has all week, which is encouraging. since he is usually a bottomless pit, it has been difficult seeing how little he wanted to eat, but he seems to be returning to normal-ish eating again, so HOORAY!!!

now for the not-so-good news.

my mother posted last night about asher's poor fluid intake. their goal is for him to get 910 ml of fluid a day. by yesterday evening, he'd had 334. hence the threat of an NG-tube. understandably, asher did not like that idea. in fact, he clamped his hands over his nose and started crying, "no! i not want tube in my nose! i not want tube!" i told him that he would have to have a tube if he didn't start drinking. over the next 2 hours, he drank 250 ml. still not enough, but much better than before. and this morning, we have had the same conversation every half hour or so. "asher, do you want something to drink?" "no." "do you want a tube?" "no, i want apple juice, please." works like a charm; he's had almost 200mls so far.

now the bad news. sigh.

asher's blood pressure has been (thanks to his special "old man cocktail" of a diurretic, ACE-inhibitor and beta blocker) perfect for several months now. 80s over 50s. beautiful. but over the last couple of days, it's been going up. and up. and up. yesterday at one point, it was 114/65. to put that into perspective, mine is 110/70. yeah. he isn't as puffy anymore, thanks to  a combination of 2 diurretics (HCT - his usual one - and metalozone. no lasix for asher because of his kidneys), but there still is some residual puffiness around his eyes, but he can open them fully, so no big deal. that being said, the only reason his fluids are even balanced at this decreased level... is because of the chest drainage. even with 2 diurretics, he isn't peeing as much as they'd like. however, last night he was refluxing pretty badly (i could hear it, and for the first time in his life - and remember he has a history of "severe GERD" - he was complaining that it hurt) and he was sweating. and by "sweating," i mean that he soaked through his sheets and jammies in 10 minutes. soaked them! you could have wrung them out! disgusting!! and in 10 minutes. yeah. the nurses kept asking if he's like this at home, because some kids sweat in their sleep. i told them that asher usually sleeps under 3 or 4 blankets and he never sweats. the nurse... the heart nurse... who deals with this sort of thing all the time... was really worried.

now, i know there are some of you out there who read this paragraph and have small coronaries of your own. yeah. that's about where i was at last night. and i'll admit, i'm still a bit concerned, since asher is still very pale. but, i'm aware that there are some of you reading this who are scratching your head and going, "why is heartburn and sweating so concerning?" so here you go... a crash course in severe CHD, ie, the list all severe heart moms memorize shortly after diagnosis:

• paleness and increased cyanosis (blue spells)
• puffiness
• increased blood pressure
• decreased urinary output
• irritability
• reflux/heartburn and vomiting
• decreased appetite
• sweating

read this list over again, then re-read my description of him above. yeah. quite similar, wouldn't you say? and for the uninitiated... that's the list of symptoms of CHF. congestive heart failure. yeah.

so please continue to pray/send good vibes/cross your crossables... whatever it is you do, please keep doing it. asher has a looooooooonnnnnnnnggggggg history of CHF (hence his old man cocktail, which he has been on for quite some time... like, forever) and believe me, it's just as scary now as it was when i first brought him home after the hybrid. what's even worse is when you're used to it... which i am. and when you expect it... which i do.

so there you go, the latest update. i'm off to grab a coffee and some lunch and head up to order asher's lunch. how awesome is that, eh?? i actually get to order him lunch, instead of going to the kitchen to grab a bottle of formula!!! i could get used to this! although, i have to say this... i've waited so long to see asher eating and drinking, swallowing with ease... but now i'm disgusted by it at the same time because honestly, he's the loudest swallower i've ever met!!!! and frankly, i don't think there's a more disgusting sound in the world than the sound of swallowing. blech!! and i'd feel guilty about saying any of this, except that wendy, another heart/tube mom has also heard asher drinking, and she agrees. yuck. LOL

Update on Asher re fluid intake

Hi, Gayle here, (Heather's Mom).

We were at Sick Kids this afternoon to visit Heather and Asher.  By "we", I mean Edwin, Dave (Heather's Dad), Blithe, Bram, my Mom and me.  I think we (the adults) were all a bit unsettled to see that Asher has lost his "spark".  Hopefully this will return soon.

When we got home, I got a call from Heather with an update on Asher.

The staff is quite concerned about the amount of fluid that Asher is taking in.  Apparently he's supposed to take in 910 ml of fluid per day.  As of 6:30 this evening, he had taken in 334 ml.  Because he's taking 2 diuretics and still has substantial drainage from his chest, there is a real danger of dehydration. 
They are going to reassess him at 9 o'clock.  If Asher has not taken in a signifcant amount of fluid by that time, there are 2 options -- IV or NG tube. 

Heather talked to Asher about this.  He definitely does not want either an IV or a tube in his nose.  So he has felt motivated to drink 114 ml of apple juice and some chocolate milk in the past little while.  Hopefully he will drink some more before 9 o'clock so drastic measures don't need to be taken.

Needless to say, this was discouraging for Heather to hear and will be very uncomfortable for Asher to endure either another IV or an NG tube.  Please continue to pray for Asher, in particular, that he will drink more fluids so he doesn't need to undergo this added discomfort.  And also pray for strength for Heather.  She is very tired.  And I know that it's very difficult for her to see Asher looking so unlike himself. 

Saturday Update

Hi Everyone

Wendy here, one of Heather's friend's....Heather asked me to do a little blog update for her today.   Don't worry, Asher is just fine.   I'm updating because Blithe and Bram are up at Sick Kids visiting with her and Asher and they've got a full day of catching up to do.

I lack the eloquence that Heather has when she writes, so bear with me. 

Asher did not have to go for an x-ray last night.   He drained out A LOT of fluid once they put his remaining drain back on suction.   His resp rate has gone down to pretty much normal and I'm sure he's feeling better.   (and it was agreed that they were just a little too aggressive with the chest tube removal/turning off of the suction).  However....the fluid that is draining is starting to show some indicators for Chylothorax.   For those of you who aren't heart moms and aren't familiar with the term, here's a brief description:

Chylothorax:   is a medical condition in which a fluid known as chyle accumulates in the cavity which surrounds the lungs, making it difficult for the lungs to inflate.  Chyle is a byproduct of digestion which normally drains away through lymph ducts in the chest. When these ducts become blocked, the fluid can spill over into the pleural cavity, leading to chylothorax.  In some cases, chylothorax can resolve itself, but it may be necessary to insert a tube to allow the fluid to drain, and maintain a fat free diet until symptoms improve.



Well, Heather would have done a much better job describing that, but it gives you the idea.   Asher has had this before, so they are familiar with it.   He's right on the cusp of when they would test for it post-op (4-5 days).  I'm sure Heather will post the results of any testing.

Beyond that, Asher is still satting around 89 - 91, which is pretty darn good for someone who has a lot of fluid draining from his chest (and WAY higher than pre-Fontan).  He's also got a lot of other fluid on board and the hope is that the diuretics start doing their job soon.   Asher has started to eat and drink a little and I heard he even sat up in his bed briefly all on his own!   Isn't he so amazing? 

He's still pretty sad, but hopefully a good visit with Bram and Blithe today will bring out some smiles and giggles and lift his spirits.   He has had an amazing recovery from a very major surgery.   Please keep him in your prayers or send out some positive thoughts for him and for Heather that he continues his recovery with no surprises and no major bumps.   Also pray/positive thought for his broken heart (sadness) to improve, I know it would mean so much to Heather to have her mischievious, wonderful, little Asher acting like himself and telling it to her like it is.

Wendy

because it's asher, and nothing is ever straightforward with asher

so, once again, asher is doing what asher does.

making something simple(-ish) into something far more complicated.

hence the nickname "asher crasher."

asher has had a bit of a fever all day, and has been tachypnic (breathing fast) off and on all day. he isn't working to breathe, there is no distress, but his resps tonight are 64 to 67 breaths per minute, when his baseline is mid- to high-30s. when the doc came in to check him tonight (after the nurse went to get her), she found that air entry is decreased to the bases, which means, in real english, that when he breathes, the air isn't getting down to the bottom of his lungs. his breathing is very shallow. and that's a problem, since it means that he is not taking in as much oxygen with each breath as he should/could be, which means, predictably, that his sats are lower than they should be. mid- to high-80s, when they have usually been in the low- to mid-90s.

the cause, in my own humble opinion, is that they were a bit too aggressive with asher's chest drains today. just this morning they took the drains off suction and removed one of them. this left the only remaining drain to remove all the fluid, which is fine, but it wasn't set up to suck it out anymore, which makes it more difficult for the fluid to get out. this, you can imagine, causes fluid to build up in the chest, which takes up more room, creates pressure around the lungs, and prevents them from filling properly with air which is needed to oxygenate the blood, thereby lowering sats. when they removed the left JP today, the entire length of tubing inside was clotted. basically, a foot-long blood clot. in my opinion, this made it well nigh impossible for fluid to drain through that tube, which led them to believe that the drainage was slowing enough to remove the tube.

this evening, they have put the remaining tube back on suction, and lo and behold, more drainage! more in one hour than all day, in fact! they are currently monitoring asher's breathing, and if it does not improve (slower rate + increased air entry to bases), we will be going for a chest x-ray.

asher had been doing so well up until now. it's just a bump, but a stressful one, nonetheless. and when you figure in the fact that he does not like to move, going downstairs for a chest x-ray will be unpleasant to say the least. so please pray/think positive/send good vibes... whatever it is you do, please do it now. the doc will be reassessing at midnight, and we would all like to find better air entry and continued/increased drainage. thanks so much!

this is going on the sidebar, too, but i don't want you to miss this quotation, because it's great.

But the days pass in their swirl and whirl and swing and song, and every day he doesn't die again, and that knocks me out.       - Brian Doyle, in The Wet Engine

it's so wonderful because it's true. in just this one sentence, he captured the essence of heart parenting: the chaos, the stress, the joy, the beauty... all of it. (and for those unfamiliar with this book, it is all about the heart. the physical heart, but also emotional, spiritual, poetic and musical. it is truly is a stunning piece of writing.)

and by the way... the author has a son (about whom he wrote that sentence) with HRHS (hypoplastic right heart syndrome). amazing.

the daily news

well, this morning has been nice. asher's drainage is slowing significantly, and one of the tubes will actually be coming out today!! last night they took out one of the IVs in his hand, and the other will likely come out today. they had left it in so that they would have it for an extra diurretic... but his puffiness is now almost gone, so no extra diurretic!! the HCT is doing a wonderful job on its own, so they're leaving it.

we're hoping to see immunology today (ok, they are. i know i'll be more lost after the consult than i am now!) so they can get some answers about his t-cells.

as for his intake, well, yesterday i ordered all three meals for him, and all he ate was half a fry. this morning, though, he helped me pick out his breakfast, and he actually ate most of a hashbrown and drank some chocolate milk (he's getting whatever he wants right now to inspire some eating... we'll see how well it works for lunch).

he still doesn't want to move or talk. he pretty much just lies in his bed holding on to his monkey and watching treehouse. we tried going for a walk last night, but he didn't want to. he only walked about 10 feet and was protesting the whole way. this is the hardest part, seeing him like this. it's just not what he's like. mind you, i completely understand. if i'd been through what he's been through this week, i'd be more than a little sad, so i'm just trying to keep him as happy as possible, spoiling him rotten, cuddling with him as much as possible, and telling him how brave and strong he is. he'll get past this. i think he just wants to go home.

on that note, we're not going home today, but i'm hoping for monday, since they don't like weekend discharges. we'll see. anyway, it's time for lunch, so i'll talk to you later! :)

this is wonderful!!!

my wonderful friend wendy sent me the link to this blog about a girl with HLHS... and there is a story about a fontan/HLHS survivor living a completely normal life... at 30 years old!!!! amazing!!! thanks, wen, for sharing.

poor little thing...

asher's not doing so well emotionally right now. he's become very sad; i'd almost be tempted to call it depressed. he doesn't want to play, he doesn't want to eat, he barely drinks, he doesn't want to move at all... he just wants to sleep.

that being said, i've ordered meals for him today, and breakfast and lunch weren't even touched. but when i told him i was ordering supper, he helped me to pick out some things (fyi, grilled cheese, fries, chocolate milk and chocolate pudding. poor choices nutritionally, perhaps, but remember, he may not even eat any of it, so it's moot, anyway). so we'll see how that goes.

his central line (in his jugular, right side of his neck) and pacing wires came out this afternoon, and he did really, really well. complained a bit at first, but he didn't even move while the nurses worked. he was so brave. i'm really proud of him. :) he still has two lines in his right hand, and his nurse was hoping to take them out this afternoon, too, but they have to decide what they're going to do about his diurretic, since the HCT alone isn't enough right now. he is still very puffy all over, and that is part of his problem with his sats. his lungs sound clear, however; there just seems to be a pocket of fluid floating around in there around his lungs, but moving around will take care of that... once he starts moving around, that is.

anyway, i'm gonna run for now. he's sleeping, but i don't know when he'll wake up, so i should get back to him. i'll keep you posted. :)

the plan for today

rounds just came around. CVL (line in the neck) and pacing wires are coming out, so WOOHOO!!!! but... asher still has a LOT of fluid on board. they're adding another diurretic to work with the HCT (can't do lasix b/c of his kidneys), so that should help. but asher still has no appetite and doesn't want to even drink ...very much. they're doing an echo right now, and they've ordered an ECG.

at some point today, i'll be talking to social work, and even more excitingly, asher will get to go to the playroom. he's been waiting for hungry hungry hippos since the unit... oh, wait, that was yesterday. LOL wow, time is weird in the hospital. LOL

because it's never straightforward in asherland...

yesterday it looked like asher's drainage was slowing down, but it turns out... not so much. it's just that there were clots high up in the tubes. the nurse last night milked them out, and suddenly there was tons of drainage. and i mean, she got 60mls (2 oz) out, and 20 mins later, got out another 20mls. it's still clear red, which means (for those who know) no chylothorax. so that's a relief. but asher's right lung is crackly and his breathing is very shallow, due to the fluid and pain.

he's back to getting morphine, tylenol and katorelac (i still spelled that wrong, but i'm getting closer, right? lol). pain management and drainage are really the only issues now. so that's awesome! :)

he was also nauseous and vomiting last night, and that was yucky, not to mention painful for him. but i'm going to order him something to eat now, so we'll see how he does with that. nothing big. just something little and easy on his stomach, since he still hasn't eaten. he's been taking some ginger ale and i think that's helping.

oh, and before i go, just one more thing...

WE'RE IN OUR OWN ROOM!!!!!!!!!!

holy recovery, batman!!!

so, yeah, remember what i wrote this morning about going to the ward tomorrow? yeah. forget that.

BECAUSE WE'RE ALREADY THERE!!!!!!!!!!!!!!!!!!!!!!!!

they moved us up to step-down this morning, and tonight we're going to be IN OUR OWN ROOM!!!!!!!

pain is stil an issue, so he's getting morphine, tylenol and catorolec (sp? if you know, please tell me. lol), so that will help. he's still getting clear fluids, and doing reasonably well with them, so they've ordered "diet as tolerated" for supper tonight. can you believe that?!?! as for sats... oxygen is turned off, and asher is sitting comfortably and pinkly in the low 90s. absolutely incredible!!!

art line is out, CVL (in jugular) and a couple lines in his hand are still there. but they're thinking of taking out the CVL tomorrow. drainage is almost stopped entirely, and asher really wants his pacing wires out.

also, i got a chance to see dr caldarone again today. a few months ago, around the time i wrote his letter, i created a little art-y piece inspired by the OR. he was really appreciative... and i did notice that the colour scheme matched a couple other things in his office, so that cool. a tad serendipitous, i'd say. he really enjoyed the quotation, and noticed that the heart, which was notably wonky on the left side (which also amused him), was stitched up. it's quite a lovely piece, if i do say so, myself (and yes, my crafty friends... i used BG paper on it).

i explained that, to cope, i have to either laugh or create something pretty out of it, so as i was thinking about the OR, i made this for him. and the quote says,

inside this room, all of my dreams become realities and some of my realities become dreams.                 - Gene Wilder

have a great day, everyone! :)

sit down before you read this, because seriously, you are NOT going to believe this!!!!!

i just saw asher this morning, and the only word i can say is.... WOW!!!!!!!!!!

he's pink. his sats are in the mid-90s. yes, you read that right. mid-90s. this time yesterday they were 80. now 94 - 96% with the oxygen on. it's not on him, mind you. just sort of blowing near his head. because it looks good, quoth the nurse. (this was just before rounds. LOL) they're going to pull his art line and his catheter today. drainage is getting clearer all the time, and lessening all the time. they even stopped his milrinone this morning around 6. that's right, folks, NO MORE MILRINONE!!!!!! (iv function med... can't go to your own room with that one. but asher doesn't have that going anymore. he doesn't need it. because his function is just. that. good.) dr caldarone popped in to see him just before i got in, and he thinks asher is looking fantastic.

he's still in some pain, and seems to be afraid to move or actually do anything. but he's not grumpy or irritable. just tired and in pain.  but he's getting morphine every few hours now, as well as tylenol and something else... i just don't know how to spell it. lol he's looking around now, and he's got his monkey on his chest for when he coughs. we're going to try to get him a TV today so he can watch treehouse or Cars or something. :)

now, in case you thought i was done updating, there's one more thing... and this is the really exciting thing...

there was some discussion during rounds about sending him upstairs. in fact, the only reason we're not going upstairs today is because they're full. so we're hanging out down here for one more day, but not because he's in rough shape.

seriously, who is this kid?!?!?!?!?!?!

our first night post-fontan

so, it has now been about 9 hours since they finished asher's surgery. 9 incredible hours. 9 emotional hours.

first, confusion mixed with elation. did dr caldarone actually use the word "uneventful"?! if i hadn't been there to hear it for myself, i would never have believed it.

now, i don't really know what to call this. when i left him a few minutes ago, he was getting blow-by oxygen and his sats were sitting in the low 90s. he's working to breathe quite a bit, though that seemed to have lessened somewhat when we rolled him onto his right side. (and i don't know how he plans to rest all night like that, with broken ribs and everything, but hey, when you only got about 4 hours of sleep and then had open heart surgery, i'm sure you sleep however you want. lol) his stridor is still there, and sometimes it's worse than others. but a few good coughs clear that up a bit, or at least help it to improve.

and get this.

he's been drinking some water. with no problem!!! we're not giving him very much due to the anaesthetic today, but he's getting about 10 to 15 mls every hour or so... or at least when he wakes up. so far he's keeping it down.

the plan for tonight is just to keep him comfortable with his oxygen levels as high as possible, which means they won't be taking away the blow-by any time soon. but he's doing very well, and tonight should be just as uneventful as this morning. the plan for tomorrow is to begin removing some lines (he has quite a few right now) and give him something to eat... yes, you read that right... something to eat!!!

it's wonderful to see him so pink. he really does look fantastic! i've never known his tongue to be anything other than blue, and now it's pink! same with his fingernails!!! PINK!!! can you believe that?!?!

on the other hand, he is in a lot of pain, and that's just so hard to see. i wish there was some way i could make him feel better. they turned off his morphine a few hours ago because he was so stridorous (loud breathing), and they suspected that he was over-sedated and that if they allowed him to wake up a bit he could protect his airway better. it seems to be working a little bit. we gave him a bit of tylenol an hour or so ago, and there's some discussion of bolus morphine (a dose every few hours instead of continuously), but we'll see how tonight goes.

as for me, i'm exhausted, so i'm heading to bed. i'll be in and out of the unit tomorrow, so feel free to call. if i don't answer, just leave a message, or keep trying. i'll try to get back to you quickly... but you know... hospital timelines... ;)

UN. FREAKING. BELIEVABLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

well, the surgery's done. i talked to the surgeon and guess what!! he actually described the surgery as, and i quote, "uneventful." i don't fully understand that yet; i'm not quite sure how "asher" and "uneventful" go together... but i'm not complaining! this has never happened before, and i can't believe it, but yeah! UNEVENTFUL!!!

we should be able to get in to see him in a little bit. they wanted to extubate him before sending him to the unit, so we have to wait a little bit. the tube that connects the inferior vena cava (IVC) to the right pulmonary vein (RPA) had to curve a little bit due to the Coles that he had in 2008, but the echo showed great flow, no kinks or folds in the tube.

so, this is very exciting. (understatement of the year. i've already celebrated with a cold can of coke and fries with gravy.) it remains to be seen how he recovers, but rest assured i will keep you posted. :)

so thank-you, everyone, for the prayers/good vibes/positive energy/whatever it is you do. it really helped. :)

and an extra-special uber thank-you to wendy and diane who came to spend the day with us here. you're amazing women; thanks so much for your friendship... and lattes. ;)

the day before surgery...

well, asher and i hit the road tomorrow morning at 5. because your baby having open heart surgery isn't rough enough, you have to be sleep-deprived, as well. lol ah, well. that's why there's a starbucks AND tim horton's in the hospital. and that's why there's foot prints on the floor to lead you to timmy's... because you're so exhausted you can't follow directions. just bright orange footprints. clearly designed by a parent who knows... lol

anyway, i thought i would tell you about another exciting research opportunity we were given today. a cardio fellow called this afternoon, and apparently they're studying bloodflow in collateral vessels before and after the fontan. asher will go in for an MRI before the surgery, and from there he will be taken to the OR for his fontan. what an exciting opportunity this is, for asher to be involved in furthering our knowledge of these complex little hearts and helping to develop new strategies and treatments which could keep kids like asher alive.

in the meantime, in 12 hours, asher will be in the OR. and i will be sitting in the waiting room, staring at the door and praying that dr c doesn't walk in for several more hours. so please remember us tomorrow in your prayers/good vibes/positive thoughts/whatever you do. thanks so much! :)