it's a sad day today.

my post this morning was inspired by a post on Adventures of a Funky Heart, written by Steve Catoe. the entire blog is devoted to CHD, providing tons of information about research, treatment, goals for the future.

Steve was born with tricuspid atresia. it's similar to HLHS, only on the other side of the heart. he had the BT shunt when he was very young (i forget what age), he had an early version of the fontan, he had a pacemaker. he survived sepsis, endocarditis, gout, CHF. he was one of the oldest CHD survivors.

i shared many times, both on this blog and on facebook, from his blog. the writing is incredible, and the information is invaluable. so many times, i commented on his posts, and he would reply, not only on the blog, but often directly to me, as well, usually making jokes or vowing to find the information i was seeking.

today we learned that steve, at the age of 44, passed away sometime late last night or early this morning.

to say he will be missed is an understatement. he was a relentless crusader for CHD. he was a cheerleader for heart warriors and their families. he was a fount of information. he was funny, intelligent, and encouraging.

please. if you know a heart warrior, hug them today. Steve lived a long time by CHD standards. not all CHDers have his kind of longevity. but i will end with a link to his post from the other day. it sums up his mission and goal.

A Cure for Heart Defects!

RIP, Funky Heart. our broken hearts are breaking. you will be missed.

talked to the doc...

and there's good news and bad news.

good news first: so far, the blood culture is negative, which means that, at this time, sepsis has been ruled out. so that's AWESOME!!!!

bad news: urine culture was positive, which means we're looking at a UTI. we're staying in hospital for now, at least until we have sensitivities, and then we'll know which med will work. i had to delve waaaaay back into my memory and inform the doc that Septra has never worked for a UTI for asher, so she'll know that, even if it's sensitive to that, not to bother with that and to try something else. she also mentioned some imaging. he had a VCUG waaaaaay back in the way, and it was negative for reflux (basically, backflow in the urinary tract), but dr filler had said that if asher had another UTI he'd order another VCUG and possibly nuclear cystogram (sp?) because sometimes a VCUG can give a false negative. i'll keep you posted.

thanks so much for the prayers so far, and please continue to hold us in the Light for the next little while. i'll continue to keep you posted.

the most heartbreaking afternoon... and the most heartwarming afternoon... keep praying

my FB status right now says:

Heather has spent the afternoon watching asher crash. he fell asleep around 3:30, and ever since, his HR has been dipping. and each time, it gets lower. he now gets down to 30 and stays there for several seconds. it's VERY hard to watch, even though i know this is EXACTLY what we need him to do. pray that he keeps doing this, but please make sure you also add that he doesn't code. this is terrifying.

meantime, brigid isn't doing so well, either. allison and i both allowed ourselves to cry this afternoon, because we're both in crap positions. funny thing is, we've only known each other for 2 weeks, but we know we'll both be there for each other... because we've both been there, we understand... it's nice to have someone to cry with (and to laugh with... at the same time! LOL)... but seriously, you can't imagine how painful these admissions are for either of us. it's hard to cling to 86% (for her) and 70% (for me) as you see your child in these conditions. but it's what we do. too often. just pray we get to keep clinging to these numbers for a very, very, very long time.

and remember, allison, you and brigid are loved. lots of hugs to you, and i'm here when you need me.

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.

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!!!!!!!!!!

yup, it's time for the fontan...

so, yeah, asher hasn't been doing so well lately. all week, actually. he's not sick or anything... unless you count heart disease, in which case, he's one sick little boy.

i took him to see the paediatrician yesterday. all week, asher has been blue, lethargic (on wednesday, he fell asleep on the couch at 5pm and slept straight through till morning... in his bed, though), irritable, not eating as much, sweating in his sleep, puffier than usual, and his hands and feet are cold. actually, i think he's cold all over lately; he never wants to take his coat off anymore. so i took him in, and when she assessed him, she found that he's not tachypnic (breathing fast) or tachycardic (rapid heart rate), but his liver is low. and she knows, because she checked it last week when i took him in. so it has definitely lowered.

(who cares about his liver, you ask? when the liver descends, it is an indication of heart failure. the heart swells from working too hard and the influx of blood to help increase function, and this requires more room. so the liver gets pushed out of the way. it's not as low as it has been in the past, mind you, but it's working its way down, enough to be concerning.)

so, basically, the fontan is coming just in time. please pray/cross all crossables/send good vibes/whatever you do that asher remains otherwise healthy, since clearly this surgery is needed right now. if he gets sick, they will have to cancel, and that will be bad.

and it's 11 days till the fontan. click on the title of this post and scroll down till you see "The third stage of the Norwood: the Fontan operation." that tells you what you need to know, if you're curious about what is involved.

oh, what a wonderful morning!! oh, what a beautiful day!!

ASHER GETS HIS G-TUBE TODAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

mind you, the site is infected right now, which took us to emerg last night, but we got a script for the antibiotic that doesn't clog the tube, so i'm happy. now just cross your crossables that they will still change the tube, despite the infection.

now i'm off to do some meds (a touch late, but it's still good), and feed the kidley-winks, and get ready for the day ahead. (oh, and collect garbage and maybe do some dishes and tidy and change bedding.... aaaaarg! why can't housework ever just STAY DONE?!?!?!?!?!?!)

worst. choice. ever.

ok, this will be quick, because i'm nauseous thinking about it.

doc karin came in tonight to check on asher, and in the course of her assessment, she saw:

• he doesn't like turning his head
• he has a headache
• he looks terrible, even after 24 hours of two big antibiotics
• photophobia. which means that he's afraid of light. she went to look at his throat, and he freaked out, squeezing his eyes shut, covering them with his hands, and freaking out.

so here's the thought:

meningitis.

now, if it's viral, there's really nothing we can do, other than treat his symptoms and let the virus run its course. if it's bacterial, we'll need to attack it with meds.

so they're doing a lumbar puncture (spinal tap) tonight at 11. i'll post afterward with details.

Asher's cath. the long-awaited update.

asher did well, some bleeding at first but that seems to have slowed down now. but we're stuck here till 8pm b/c they used an artery, and you have to wait 6 hours post-cath for an artery. arg.

oh, so the problem is........ ready for this?..... sit down before you read it....... function. the problem is cardiac, not respiratory, like london says. hmm... funny how..... but i was wrong, too, turns out. arch, PAs and PVs were all "fine"; on the small side but nothing that required intervention right now. they did coil off some collaterals, though, but that needed to be done a year ago, so no big surprise there.

they'll be presenting asher for the fontan, and dr russell will likely let us know their decision at our next appt, which is next week. and since the issue is function, i'm guessing it won't be a long date. sigh. but hey, asher's "fine" and they're sending us home tonight, so i'm "happy."

i'll update the blog later, but i thought i'd let you know how everything went.

oh, and buffo gave me some great tips on dealing with london; i'm gonna ask for a new doc, at his suggestion. he even told me which one to ask for. oh, the things we talked about! lol

VICTORY IS MINE...ish...

for those of you who don't know, asher was admitted to sick kids on friday after his emergency sedate echo. dr russell had ordered it after i called her, and after dr b called her, after some, um, issues with london cardio. what's happened to them there?! asher's own doc doesn't know his diagnosis and doesn't recall meeting us. and then there's the incident with a certain NP all but hanging up on asher's paediatrician with a "it's not cardiac so you're going to have to figure this out without us."

so, asher was admitted on friday for observation. he spent saturday morning sitting calmly in a stroller while i was out (have you ever known asher to sit quietly for a couple hours? no, neither have i. this would be the "lethargy" i'd been talking about). once i got back, we went for a walk on the ward. after less than 10 minutes, asher sat down in the middle of the hall, dark blue, with sats at 59%. he was short of breath, and really didn't have the energy to get back to his room on his own. after a nap (2 hours), he played in the playroom. where his sats were in the 60s. and he kept having blue spells.

the next morning, he walked around his room, and after 5 minutes, he was huffing and puffing like a 50-year-old, 300-lb chain smoker with asthma after shoveling a driveway in february in hamilton. (pretty picture, no? lol) this was mentioned on rounds, and the cardio, after reviewing the episodes from saturday, and getting that report from the nurse, described the symptoms as "very concerning."

asher's issues on sunday weren't so much blue spells or sats (though he sat in the low 70s when awake). no, it was his heart rate and blood pressure. BPs were around 110/70, and his heart rate was all over the place. he sat up after a nap, and that sent his heart rate over 140. his walk to the playroom? yeah. 170. and when he took 10 steps to the shelf and back to the table where he'd been sitting, 155. and desat.

this morning on rounds, dr d thanked me for giving them a puzzle on a monday morning. haha, very funny. but she discussed the whole thing with dr r, and came back with this: asher's not going to have a heart attack in the next couple weeks so he's safe to go home. but his symptoms were serious and concerning and require further investingation. so.....

we came home today. they're doing a cath on the 4th, and they're going to look at pressures all over the place. apparently, the pressures in the PAs, around the glenn, were somewhat high in may, so they're starting there. and given asher's love of scar tissue, they're going to check out the pressures in the PVs. we also came home with a holter.

so, drs r and d discussed asher's case today, and they decided on the cath. but they also sent us home b/c these episodes don't seem to cause him to cause him much distress when they happen, and they don't think he'll have a heart attack in the next couple weeks, so he's safe at home. but you'll notice the short date. nice, eh? ugh.

Asher in his not so happy place

Some of you may recall that the other week, Asher had his first ear infection. Also at the time, he had his first tube infection of the season. Oh, yeah, delightful. You may also recall that he was prescribed a course of Keflex, an antibiotic used to treat ear and tube infections.



Ok, so, funny story: we're in immunology on Wednesday, talking with the fellow. I had already told her about the ear infection the week before. Well, later in our uber-confusing appointment, she was assessing him, including checking his ears. She said, "so, the infection was in the left ear." I said, "no, right." She said, "no, left." I said, "no, it was in the right." "well," said she, "his left ear is pink now." Ok, so the story's not so funny. Not at all, actually. Anyway...



I've been keeping an eye on Asher over the last few days, checking for signs that the infection was getting worse. I've also been keeping an eye on his tube site, because, despite a week of antibiotics, the infection had not, in fact, cleared up. And when we checked it out yesterday, it was, in fact, worse. I'm sure you can guess where i'm going with this.



Or rather, where i went this. And with Asher.



That's right, we went to emerg. But i decided to take him in to London today, instead of St Thomas. For one thing, they know Asher better in London, and since i have no ink for my printer at the moment, i don't have a sheet listing all of Asher's issues and quirks. And, i figure, this is exactly what happened with Asher's tube back in January, and they handled that in London. So, i figure, we'll go there today.



We were there all day. It turns out that both of Asher's ears are infected now, although the left is worse than the right. Also, the tube... yuck!!!! It is the yuckiest, ooziest, crustiest, reddest, smelliest, most disgusting tube site i have seen in a very long time. Disgusting. So they swabbed it and sent it off for a culture.



And that took hours.



So, literally, we had to sit around in emerg, waiting, for about, oh, 5 hours or so.



Ok, the waiting isn't so shocking. But i was not expecting the swab/culture route. I thought they'd look at it, smell it, write a prescription, and send us blithely on our way. But, of course, that would have been too easy. Especially considering i hadn't eaten breakfast before going, so i was starving. Ah, well, at least i got to read some 8-month-old fashion magazines while we were there. And Asher watched Thomas and Wiggles DVDs. Which meant that i got to watch them, too. That was a fate worse than death cruel and unusual thrilling, let me tell you.



Anyway, they got the culture back, and it's the same bug he had on his tube back in January. So, they prescribed the same antibiotic: Cipro through the tube, and Fucidin on the tube site. And then they sent us blithely (and hungrily) on our way.



Well, we got home, hooked up his feed once more, and all was working well. Then, it was med time. So we gave him his Cipro. Or rather, we gave him part of his Cipro. You see, the tube f***ing clogged half-way through the dose!!!! Are you kidding me?! I can hear you say. Oh, my friend, i wish i were, believe me. And it's not just clogged, it's PLUGGED!! Nothing is getting through there right now.



well, i did the usual de-clogging routine. Water in a small syringe. Nope. So, saline in a small syringe. Nope. 
Saline with a smaller syringe (increase the pressure). Nope. It's plugged. Fantastic.


So i just talked to the Interventional Radiology nurse-on-call, and, as it turns out, they can't get any staff in tonight. Which means that we have to wait. Until 8:00 tomorrow morning!!!! Which means, you'll note, that Asher will be without food until about 9:00 tomorrow morning. After getting about 1 hour of his feed since noon today. And Asher gets nothing by mouth.


now, i know there's doctors reading this, and i'm sorry if you're offended. I'm tired, i'm stressed, and i'm ticked off that we just spent all day in emerg and then we have to turn around and go right back... first thing in the morning. Arg. So please don't take my bitterness personally. But seriously!!!!


I think i need to stop this post now before i get really ticked off. I need some coffee. From my happy place. I'll be back. Toodles! J

the good, the bad and the ugly. well, i don't really know what the "ugly" would be here, but it's a catchy title, so i'm going with it.

i decided to post about asher's appointments all at once, saving us all some time. however, if you're like one of my friends, you've been going crazy (however imperceptably *wink*) waiting. well, the wait is over, my friends. here we go:

CARDIOLOGY (monday afternoon)
no echo, no ECG. they did these recently already, and they don't like to do too many tests. asher's weight is now 12.1 kg (a little over 26 lbs), though just how much of that is fluid and how much is him, i can't say. as for height, he is now at 79.5 cm (32"). that's quite a spurt: after his surgery in june, at post-op clinic, he was 75 cm. so he's gained almost 5 lbs in less than 2 weeks (can you say "fluid overload"?), but he's grown about 2 inches in the last 2 months! yikes! no wonder he can pull stuff off the bathroom counter now (yet another reason we keep the bathroom door closed. immunodeficient toddlers don't play in toilets. well, asher does, but he shouldn't. anyway...) ok, enough of the fluff, on to the meat:

liz was not impressed with asher yesterday. not that she should be. i can't imagine it's a good feeling to see a patient in congestive heart failure. and that's what this is. they can't understand why it's happening, though. yes, fluid overload, but... it came on so fast. we've been upping the volume of formula for a while now, and we've been going pretty slowly. but this came on somewhat out of the blue in the last week or so. sure, there were hints that it was coming (remember the trip to emerg when he was grey? yeah), but once it got going... well, let's just say that asher's reputation of crashing fast is well deserved. he was so short of breath during clinic. and while the colour on his forehead was better, liz said that his nose, mouth, hands and feet are blue/grey. she was also unimpressed by the puffiness around his eyes, and as she told him, "children your age shouldn't have folds around their ankles anymore." to which i replied, "what ankles?" she just kind of nodded reluctantly.

i asked if she had any ideas why this happened. she can't explain it, so we were sent for bloodwork. she wanted to check a bunch of things, but one of the main tests was to check his albumin levels. (your phlebotomy lesson o' the day: albumin is a protein in the blood. it's the largest molecule in there, and it's the part of the blood that holds water. if your albumin is low, there's not as much in your blood to hold in the water, so fluid just leaks into all the tissue of your body, causing puffiness, shortness of breath, etc.) well, it's now tuesday night, and i have yet to hear from liz, which means albumin is fine. if it were low, asher would have to be transfused, and then we'd get into that whole "CMV-negative and irradiated" issue, because of course asher can't have the regular blood products off the shelf. it has to be special. can he do nothing the easy way? i mean, seriously!!! anyway... albumin is fine, which means no transfusion. but, that also means... and, um, how can i put this? ah, this captures it nicely:

WTF???????????????

ok, so cardio was a roaring success. yeah, right. i checked out the orders for the bloodwork on our way over (you know me: hand me a piece of paper and i'm going to read it, regardless of whether it makes sense to me or not. this is how i learn too much, folks). and right at the top, it said this: REASON FOR TEST: HLHS w/ CHF & cyanosis. well, isn't that special. if you don't know what that means, thank the Good Lord. if you do, you might be vomiting with me right about now.

yeah, liz was right on friday. asher should be doing better than this.

and now moving on....

NEPHROLOGY (tuesday morning)
well, this is the "good" i refered to in the title. here's the deal:

asher's nephrocalcinosis, the calcium that has built up in his kidneys, is decreasing!!!! there's less in there! that's the miracle of HCT, my friends. this is what happens when nephro and cardio work together on a situation (back in march, asher needed a BP med, but he was still on the study drug, so they wanted to stay away from that same class of meds. so nephro decided on a diuretic, but since lasix would cause more calcium to build up, he consulted with cardio and they decided on HCT. the whole incident brought a tear to my eye and was, for so very many reasons, a dream come true. all you SN parents reading this know what i mean. sub-specialists never consult with other specialties. it's like there's no other organs but theirs. i'm not joking. so this was just beautiful.). so, yeah, less calcium means the filters are not as clogged, which means less chance of infection and better kidney function. that's right, folks, IT WAS ALL GOOD NEWS!!!!
but wait, there's more:

WE DON'T GO BACK TILL FEBRUARY!!!!!!!!!! THAT'S 6 MONTHS AWAY!!!!!!!!!!!!!!!!

honestly, what am i going to do with all that time (other than cardio and CV surgery stuff, i mean, duh!)?! do you realize that we have never been able to go 6 months between appointments with any of asher's doctors?! this has never happened before, and to be honest, i'm still a little shocked. i mean, this just doesn't happen in Asherland! not that i'm complaining, mind you. honestly, i could have hugged dr filler when he said that... if i hadn't been lying unconscious on the floor! lol so, yeah. good news from nephro. yay!!!

so there you have it. the good, the bad, and i mentioned the ugly yesterday (which would have been my "wardrobe malfunction" during my meeting with dr a). so, that's it for today. i thought i'd end with the good news. oh, crap, i forgot one more thing from cardio. so i guess we're ending on a downer (again). sorry. but here it is:

liz wants to see asher again in 4 weeks. last time it was 6 weeks. now it's 4. weeks. not months. weeks. notice, the appointments are getting closer together. they don't do that because they like to see your smiling face. nope. means they need to keep a close eye on you. and, if you've been keeping track, asher's next cardio appointment is next week in toronto, and liz knew that when she said 4 weeks. so, average that out, and we're looking at 2 weeks between appointments right now. why does this feel so familiar? oh, right. it was like this pre-Glenn. the first stage. yup, wanna vomit. anyone else? ugh.

well, i think that's it for today. for real, this time. promise. and hopefully, i'll have nothing to report for a while. talk to you later. much later. ttfn.

because it just can't be boring! (but why not? just once... that's all i ask!)

asher's been very cranky the last few days. i don't think it's the heat (necessarily). we keep him inside quite a bit during heat waves, especially in the middle of the day. mornings and evenings he's usually outside, but not during the day. no, then he's inside with the A/C. but he's very cranky lately... must be all the molars he's working on.

anyway, we've been having some issues with his feeding tube yesterday and today. it seems the pediasure doesn't like the heat. it's been clogging. in the tube. we have been going for long walks with his pump running in the stroller for a couple months now, and never a problem. but this weekend, you take the pump outside, and within minutes it's clogged. and that's not fun, let me tell you!

so, i will be spending my saturday evening, in Interventional Radiology in london. thrilling, wouldn't you say? and before you say, "it beats emerge!" let me say, i don't really think it does, necessarily. at least in emerge, sure, they poke him for blood work, and there's the urine sample they always try to get from him (you'd think it'd be easy to get urine from a kid on diurretics, but i guess not!). but then that's over with and he can go back to playing and flirting with the nurses and whatever. maybe a trip up to cardio (or they come down to see us), that's always fun, but in the end, we either go upstairs to a private room, or we come home, and asher's still playful and i'm feeling better. this... is not like that...

he gets so scared... and how can i comfort him if i'm the one holding him down? how can i be his shelter when i'm the one who brought him there? i can't protect him, but i can't explain any of this to him to help him to understand. this is the hardest part of life with asher. tube changes. i don't know which one of us hates them more....

well, gotta go. there's a new tube with his name on it.

ps - sorry for the downer. i'll try to post again later with pics/video of asher in the pool. he loved it! :)

paeds report, and a biology lesson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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