Friday, April 30, 2010

what do you do... when the answer is "no"?

that is the theme at church this coming sunday, and it has gotten me thinking this week... and remembering a time when i asked for something, and the answer was "no," and what it has done for me in this journey. so, after pondering this all week, i want to share it with you.

waaaaaaay back in the day, when asher was 2 months old, i was tired. and stressed. and very, very scared. asher had already had his hybrid and ASD stent, and we had appointments every day. and i mean, every. single. day. no exceptions. every day. whether it was cardio in toronto, or cardio in london, or paeds, or nursing, or OT, or whatever, we saw someone every day. it was exhausting. and then when you figure in all the trips to emerg (which were, even then, too many to count), it was a lot.

all because of asher's wonky heart.

sigh.

when he was 2 months old, he had a few symptoms. he was grey, his nose was runny, he was irritable, he was refluxing more than usual (which meant that he vomitted at least twice during each feed, instead of his usual average of once). it looked like a cold, really, but these were dangerous (and still can be, frankly) in a child as fragile as asher, so he was admitted in london. his sats were low, so he was on oxygen. but the scary part of it all was that

they couldn't figure out what was wrong.

they looked everywhere, swabbed everything that there is to swab, and i'm sure the lab had a whole section that week devoted solely to asher peters. it made toronto uneasy, knowing asher was sick but undiagnosed, so we were sent there. and literally, as we were waiting for the transport team, pepy (my fave cardio of all time) ordered a urine culture, on the off-chance there was something there. it was the only thing that hadn't been checked, because baby boys don't normally get UTIs, but it was the only thing left to check, so they cultured it.

and then we left for toronto.

we got there, and the resident came in and assessed him. then the cardio came in and assessed him. and used asher as a little teaching tool. they discussed his symptoms (keep in mind, i was standing right there at this point), and then the cardio asked the resident,

"do you know the virus that's never diagnosed, but shows up on a lot of autopsy reports?"

yeah, that stroke you're having right now reading those words, yeah. that's how i felt when he said it. oh, and i'm a little nauseated at the memory right now, too. gosh, thanks, doc. anyway....

they ordered an echo, which would happen that night at some point. (as i recall, around 9-ish).

as i sat in asher's room waiting, and asher lay there sleeping, i was overwhelmed by all of it: the stress, the exhaustion, being ripped away from my other babies, the relentlessness of this life, the severity of asher's condition... all of it. i remember sitting there, on the couch/bed-thing they have in the rooms, and i just couldn't take it anymore. it was too much. i mean, how much suffering can one little baby take? can his family take? why does it have to be this way? why can't it stop? why can't asher just be healthy?????

and between my tears, i heard my heart tell me to pray.

so i did.

and i asked God to heal asher. i have that faith that can move mountains. i'm the "jump out of the boat" kind of person. it's what i do. i am, therefore i believe. so i prayed, "God, please, i know You can do this, so please heal asher." and i swear to you, i heard it as clearly as though there was someone sitting right next to me in that room,

no.

"but, God," i pleaded, "You are the Great Physician. You can do this. just think of what a great testament to Your awesome power and mercy if they came in to do the echo and they found a functioning left ventricle attached to a healthy heart! what a miraculous sign and wonder if there is suddenly a whole heart where there wasn't one before, if there is suddenly life where it wasn't there before. and You would get all the glory for this miracle and we could finally have rest, which You continually promise to those who love You."

and again, as clearly as though someone was in the room speaking to me, i heard that same voice say,

no. that's not the miracle I'm going to do here.

"alright," i replied. "but since You made him this way, You have to sustain him this way. because i can't do it. i'm too tired. it's too much. i'm exhausted, and i can't do this anymore."

and that's it. that is, honestly, the last - and only - time i have ever asked God to heal my boy.

now, i know what some of you are thinking. first, perhaps that i'm a little crazy, thinking i hear God like that. well, i don't know what to say to that other than, yes, i heard God that night. and He said no. second, you might marvel at the irony of it all, that i was that tired and "couldn't do this anymore" over three years ago now. and it's not lost on me, either, i assure you. such is this life.

but probably the most remarkable - i'll admit - is that, when God said "no" i accepted it. sure, i put that little demand at the end, but i accepted that God has other plans for asher. and i have clung to that promise every day since then... that God is planning some kind of miracle with this boy. i have no idea what He has in mind specifically, but that's ok

because

now i get to look for it.

and see it ("if you look for Me wholeheartedly, you will find Me" Jeremiah 29:13)

everywhere

everyday

every minute

and literally, every heartbeat.

you don't have to look long through this blog to see the truth about asher: this boy should be dead at least 15 times by now (i've counted).

and yet, here he is, hanging out with paddington bear in matching raincoats. grocery shopping. playing with his beloved percy. working on potty training himself. hugging his family as often and as passionately as he can. throwing tantrums the likes of which mothers throughout the ages have never encountered. chasing the cat all over the house. reading his favourite books (thomas stories, of course). colouring. running. chatting. laughing. singing. joking. hiding behind the curtains. rummaging through blithe's purse. eating melba toast and fat-free cream cheese non-stop. making sure his food doesn't have fat. taking his meds without complaining. showing off his G-tube scar. getting ticked off because it's bedtime. falling asleep immediately at bedtime. and sneaking into my bed in the middle of the night, cuddling up to me and saying, "mommy, i love you."

every moment i just described there is a miracle. these are the miracles God has done here. and there are (i hope) so many more to come. right now, i'm enjoying each miraculous heartbeat, because as we all know, it wasn't so long ago that there weren't many of those heartbeats. and yet now there are at least 80 of them every minute.

eighty

tiny

and astonishingly huge

miracles

every

single

minute.

so, the next time you ask for something and the answer is "no," just breathe. and watch. because the miracle you really want is right there, in the very next second. and the next. and the next.

a morning out

asher's with ed today and tomorrow, and this morning, they went to the mall. asher decided to hang out with his good friend, paddington. hey, ash, where's your hat? ;)

Thursday, April 29, 2010

in answer to my question from the other day... this might be as close to "normal" as we get around here... but i'll still take it.

ah, normal... and not even "asher normal" anymore...

or as it turns out, a new "asher normal," but one that is probably as close to the real thing as we're gonna get. here's the low-down:

asher has a pacemaker. i know, i know, i'm master of the obvious. but what i had forgotten about was

asher is obsessed with thomas.

you know, the trains

with magnets

that are strong

that he holds in his hands

all the time

often less than 6 inches from his new gadget. ("go go, gadget heart!" haha, sorry, couldn't resist.)

see where i'm going with this? yeah, it's freaking me out a bit. ok, not "freaking me out," per se. more like... concerning me somewhat. see, magnets are not exactly the best thing for the pacemaker. you should see the booklet i got about what he can and cannot go near. (alas, he cannot play with chain saws or jumper cables, but it is safe for him to have a mammogram, so that's a relief. teehee) but it seems that thomas trains were left off the list entirely. and believe you me, i looked. several times. and they aren't mentioned. not even "magnetic toys." sooo... given that asher loves them so much (especially Percy. dear me, he's obsessed!! just ask dr c.), that he always has at least one in his hand (usually the left, since he's a rightie), that he usually even sleeps with at least one but often more...

is this a problem?

magnets and the like are bad for pacemakers because they can cause the generator to malfunction. that is to say, it will either fire when it doesn't need to, or it won't fire when it needs to. once the magnet or whatever is away from the pacer, it resets itself and goes back to business as usual, but i'm just a little concerned because i know too much and not enough. let me explain.

heart rate changes. it goes down when you rest, and up when you're active. that's the way the heart is designed to work. unless you have a block, as asher does (intermittent AV block, to be specific). when there's a block, the HR doesn't always increase with activity. that's a problem. hence the pacemaker, which keeps asher's heart rate at an acceptable rate. it still doesn't always go up, it is often still at 80, but that's ok (i'm assuming).

now, if the pacemaker malfunctions, it may not tell his heart to beat when it needs to. or it may tell his heart to beat too much. either of these is a wee bit of a problem. oh, sure, it won't likely kill him. we're talking about miniscule amounts of electricity for short periods of time, or a lack thereof. but still! suppose he's sleeping with his beloved percy train/magnet/potential anti-pacing device, and his HR is in the 30s, and the pacer isn't working because of his favourite toy ever?! what then, i ask? what then??

on the other hand, the train magnets might not even be an issue, and this whole rant might be in vain, and i'll feel dumb for even bringing it up and worrying some of my readers (because i know some of you, and you will worry now that you've read this. i wish you wouldn't, but i know you do... mom), so i'm going to be calling london cardio in the morning to find out for sure whether i need to be concerned about this or not. and then, of course, i'll fill you in. because you're dying to know, admit it. ;)

and since asher has to be asher, and he's just not asher with only one thing to mention in a post,

asher had a blue spell this week. (margaret, stop reading for a second.) ok, actually, he's had a few. (ok, you can start reading again.) nothing major, just navy blue mouth and nose. but he wasn't distressed at the time, and he pinked back up after a couple minutes, for the most part. but the first time he did it, he was sitting at the table eating some yogurt (fat-free, of course) and he just... turned blue. and then... turned pink again. but nothing else changed, just his colour. no shortness of breath, no dizziness, no sweating, just happy little asher enjoying his snack. so i called our paeds and mentioned it to her (emphasizing, of course, that the blue was his only symptom and please please please don't send us to london over something like this but really i thought the blue spells were supposed to stop after the fontan and yet here he is turning blue for no apparent reason what's up with that???). and of course, being the good doc she is, she called cardio. in toronto. london would probably just blame it on the lighting and how i don't know asher's colour. (oops, did i type that out loud? sorry about that.) so apparently, dr r, my fave cardio, responded with, "no, i don't think it's something to worry about. we never really figured out why he was having blue spells before, actually, so i don't think this is anything to worry about."

i love her.

even though i know some of you are now wondering why it wouldn't worry them that he's still turning blue and they never figured out why this was happening even before the fontan. it just means that it (likely) isn't related to function, so they're not worried.

and therefore, neither am i. which makes me happy. and a little nauseous, but amusedly so, since a blue spell they can't explain isn't worrisome. see what i mean when i refer to "asher normal"?

and one more little asher tidbit. he's skinny. oh, sure, i know he was never the biggest kid out there to start with. he's only in the 25 percentile for height and weight. but this fat-free diet bothers me. (don't read the rest of this paragraph, rachel.) he's so skinny now. i mean, really skinny. i was dressing him today and i took a good look at him, and i wanted to cry. he is pretty much just skin and bones anymore. i can literally count his ribs. i can trace the outline of his pacemaker. he has legs like bram, for crying out loud!! (bram's a stick, for readers who have never met him.) his arms look awful, his knees are knobby and weird-looking... you get the idea. he looks awful! he used to be my little tank. short, yes, but brawny and barrel-chested and strong. now i'm reminded of when he was labelled FTT after he got his GJ-tube. it just makes me so sad to see him like this. i want so badly to just start giving him fatty food again, to help him gain weight again and get back to being my chubby little heart kid. but i can't, because of the chylo. which sucks. and we still have a week of this diet! it's awful!

but for now, i'll just breathe and remember that this, too, shall pass, and that he's made it through so much worse. but every mom knows how disheartening it is to see her precious baby lose weight to this degree. or maybe you don't. and that's a good thing. enjoy. :) so i'm breathing, and this, too, shall pass.

(ok, rachel, you can start reading again.)

in other news...
  • ethan is still at sick kids. i talked to his momma today, and they still don't know fully what's going on with him. they're still not treating the bacteria in his lungs because he isn't symptomatic enough, apparently, and they want to send him home soon. needless to say, mom is not on board with this idea. especially since they want him to go home on daily antibiotic prophylaxis through his PICC line, which she would have to do, and she will have to suction him before every meal (they suspect he aspirates). and keep in mind, she'd have to pay for the suction machine. and keep in mind, she has six other kids. and keep in mind, she's exhausted and stressed out and very concerned about her baby. so please hold them in the Light right now. she is beside herself lately, not knowing what to do and having some trouble coping a bit, and her sweet little baby (who is absolutely adorable, by the way) doesn't seem to be getting better, only sicker. so they really need prayer.
  • mia is now home. you'll recall that mia is the 7-year-old who was in an accident and had to have some hefty reconstructive surgery done earlier this month. well! they sent her home. she's not 100% yet and faces a long road to recovery, but going home is definitely a step in the right direction, so please continue to pray/etc for mia and her momma mary and their family.
  • taylor is either home or going home in the next couple days. he is the little boy who weighed 13 lbs at 16 months of age. yeah. home. i'm sure sure what's going on with him, but i know they're out of sick kids.
  • little hannah was transfered to london this week for the rest of her post-op treatment. this is bittersweet: on the one hand, london can handle everything from here on out, and this brings them much closer to home (i'm thinking of going up to visit them tomorrow, actually), but mom rachel was very opposed to the transfer, understandably feeling much more comfortable in toronto. the other issue with hannah now is that she also has chylothorax (hence the "don't read this, rachel" comments), and doesn't seem to be tolerating her new formula. she now has an NG-tube, which mom is becoming a pro at inserting (i've done it, it's not fun, but we gotta do what we gotta do, sadly), so that may help somewhat with the formula intake. i'll post more about hannah when i know. but in the meantime, please pray for them, as well.
  • please pray for my friend sue's baby, levi. he has a rare condition which requires meticulous care, lots of appointments, and even more bloodwork. it's very stressful, especially given the nature of the condition, which is scary. he is only a couple months old, but has already spent too much time in hospitals, especially in critial care units. please hold them in the Light. i'll update you periodically on levi's progress, too.
  • hunter, one of asher's single ventricle cohorts, is going in tomorrow for his fenestration closure. this is done in the cath lab, and they close the hole in the fontan. they will also be checking out function and his narrow jugular, but no one expects there to be issues with those. but still, it's nerve-wracking, so please pray for hunter (and mom, drea) tomorrow.
anyway, that's the update as of tonight. thanks for enduring the marathon post. i'll try to keep them more brief in the future. which likely won't work, but i'll try. ttyl!

Saturday, April 24, 2010

so... is THIS what they call "normal"?

well! the last few days have been... interesting...which probably sounds negative, now that i'm reading it there. but i don't think it is... per se. it's just that, i mean, well, i don't get it.

we're all familiar with the ups and downs of life in our home. between asher's heart (etc), blithe's ADHD, bram's bram-ness (check his blog, if you're unacquainted. then you'll know what i mean), and my, um, "me-ness" it's pretty unique in these parts of the universe. and i'm ok with that. in fact, i love it. we're a quirky bunch, that's for sure, and (most of the time) i wouldn't have it any other way. but now...

i just don't get it.

and i don't quite know how to describe it, so i'll just fill you in, and you be the judge.

asher is healthy. and energetic. and happy. and pink. ok, granted, he's still a bit on the pale side, but his heart is only beating right now because there's a machine forcing it to; left to its own devices, it would be happy chugging away at a whopping 30 to 50 bpm. so i'll take the 80 now, thank-you very much. but with this "increased" heart rate comes... you guessed it... energy! i mean real, honest to goodness energy! today he ran around the house laughing and playing and - get this!! - keeping up with blithe and bram!! honestly, i couldn't believe it! he's happy, he's playful, he's eating, he isn't sweating or blue/grey or short of breath or fainting or dizzy or anything! in fact, the kid can outrun me now! (yes, i know, not much of an accomplishment given that i don't run. but still!!) he definitely has more stamina than i do! i'm still recovering from march and (most of) april, and he's running around as though there's nothing wrong with him! in fact, no less than twice today did i look at him and completely forget that there's anything wrong with him! this is incredible! someone, quick! pinch me! no, wait. don't. just in case this is all some wonderful dream. i don't want to wreck it. haha but wow! a 3-year-old with energy! who'da thunk! (i'm almost wishing dr c had taken me up on the whole "before we go ahead with this surgery that's going to give asher more energy, how about he moves in with you for a week. then we'll discuss whether or not the fontan is really in everyone's best interest." he (asher, that is. not dr c) is not "tazmanian devil" crazy yet... but i'm sure in a few weeks he will be.

save me. please. no, wait. don't. because apparently, this is exactly what we've been praying for all along. for a healthy, happy, playful asher. so i think i'm going to enjoy it.

and the other kids have returned to their own school now, having spent most of march and april at school in hamilton while they were staying with my family. (fyi, blithe won the Principal's Award for Outstanding Achievement in Class while in hamilton. and there was a bonus sticker on the certificate which said, "most improved." HOW PROUD AM I!!!!!) but they've settled nicely back into the routine of school at home. they rode the bus, they played with their old friends. bram was especially delighted to see nicholas, his best friend. all i hear about is "nicholas and me play transformers" day and night. i mean, really, if he didn't come home with completed work in his backpack, i'd swear he just plays transformers all day!

and then there's me. i've decided that, now that asher is stable (and believe you me, he and i have had a chat or two about not going back into hospital for a looooooooooong time. i have declared him stable, and stable he shall be!) i need to find me a job. so! i went a-looking this week. or rather... i posted on FB that i was going to look for a job. someone (not mentioning any names... tanna...) immediately suggested cardiologist. i'll admit, it made me smile. but i need to pay bills now. i'm pretty sure rogers and the hydro people aren't going to go for me waiting another 20 years to pay them. just a thought. but! because of a comment someone else made, i have a lead on something real, so i'll be sending in my resume there. and then the next day i was approached about another really exciting venture that i love, and it looks like that one is a go! we just need funding for it, so that will take time, i'm sure, so i'm still looking. but i also went in for some help because it's been so long since i've had a "real" job (not since my contract with the canada games ended in august 2001! yikes!). i just needed a couple pointers, tips on resume-writing, that sort of thing, and the woman directed me to a job bank that is used by canadian non-profits, which is exactly the sort of work i would LOVE to have, so that's exciting! so the job hunt is under way and looking promising and i'm hopeful that fairly soon i will be employed, bringing in some money, and so forth.

and of course, because there has to be something going on in my world, the battery on my truck had died from not being used for so long. so that was stressful, because we tried to boost it and it wouldn't start and i thought i'd have to get a new battery for which, of course, i don't have the money and how am i going to get to church in the morning if i can't start my car? ok, i wasn't freaking out nearly so much as that last sentence might imply. but it's a post on asher's blog, so you must be expecting some sort of potential catastrophe, right? haha but some dear friends came over and gave me a boost and now slimer (the truck's name, because it's the same green as slimer from Ghostbusters... only cooler, of course) runs beautifully, so once again, all is calm in our little corner of the cosmos...

and i'm still left scratching my head, wondering

what is going on here?!

i'm not complaining, mind you. i quite like it this way. but seriously! is this really what "normal" feels like?!

because i could take more of this!

this was on FB this morning

hey folks! time to pray again for another heart survivor... but not a kid this time. this is a young woman, the sister-in-law of one of my FB friends. she was given an artificial heart 6 months ago, and this morning she got a call for her new heart!! you can read her story here. pray for her during the surgery and during her recovery, pray for the surgeons, and please remember to pray for the donor family, because in order for this woman to get her heart today, one family lost someone they love. so please pray today. i'll post as i know anything more. thanks.

Wednesday, April 21, 2010

"it's dirt, it's sun, it's mom and nana and me... and don't forget squirmy!!"

so, it was absolutely beautiful outside today, so we went... well, outside! i walked downtown to run some errands (and got most of my bills paid off entirely!!! hooray!!!!), and started on my job search. while i was out, my mom took the boys for a walk to the flower garden a few blocks away. after i picked blithe up from the bus stop, we walked home and decided to stay outdoors for a little while.

well! i decided to get to work in the garden. and much to my surprise, there's actually stuff growing in there!! i had forgotten that i planted garlic last year, so that's already coming up nicely. and the lavendar wintered very well, so it's coming back already, too.

but this is asher's blog, not my simple life, so i'm going to talk about asher (novel idea, don't you think?)

asher, for those who are somehow unaware, is a boy. a normal boy. a very normal boy. which means...

where there's dirt, there's asher.

lucky for him, i was digging around in the soil, and found a nice long worm for him. he loved it!!! he named it Squirmy. it's in his hands in that picture. he didn't want to put little squirmy down. he wanted to bring him inside and have him as a pet. my mom heard that and said, "um.... no. squirmy stays outside " (my mom is not a fan of worms.)

and this all happened, you'll note...

on post-op day 8.

at home.

:)

UPDATE: i feel compelled, looking at this picture, to mention that asher is actually not blue anymore. it's just bad lighting. LOL

Sunday, April 18, 2010

yes, i know, it's been a few days...

... but other than wendy's post the other day, there hasn't been much to report.

asher's infection seems to be responding to the vanco (they stopped the gent a couple days ago, thinking it was overkill). the redness is almost gone now, so that's good news. but they've already had to save his IV a couple times, and the dose this morning was likely the last for this line. he'll likely be getting a new line this afternoon. i just hope they don't take him to the treatment room for that. he's terrified of that room, and personally, i think he's suffered enough already.

by tomorrow morning, they'll have the results from his blood culture, so they'll make a decision then about the vanco. please pray etc that they can switch him to a different med for the duration of the course.

asher's drainage has slowed significantly, as well. on friday afternoon, dr c popped in to check on asher. the drain had been off suction since the night before, and was still draining quite a bit (25 ml in overnight). so he ordered it back on suction, then clamp it for a few hours. this would basically trick the body into thinking the tube was gone, so we could see what would happen if they did, indeed, pull it. after a few hours clamped, open it back up and see what happens (they were looking for respiratory distress, fyi). if worse comes to worse, they'd do a chest x-ray overnight to see what's up. so we did that, and when the clamp came off... he drained almost 30 ml (an ounce, for my non-metric readers) in 20 mins. yeah. so the tube stayed in, with suction.

but...

the resident came in last night to talk to me, because she is super keen to pull the drain. i said, "are you freaking kidding me???" (not my exact words, but i thought it! LOL). i said that since our previous admission was because of pleural effusion, i'd rather the drain stay in one more day. "well," she said in a tone that showed clearly that she has no idea who she's talking to, "any time you have something from outside going into the body" (note the terms she uses. yeah, clueless.) "there's a chance that --" "yes, i know there's a risk of infection. but right now he's covered by vanco, which is pretty heavy-duty, so if we leave it for one more day, it won't be a huge problem. besides, if you pull the tube, send us home, and he's re-admitted for effusion again he won't be covered by the vanco and he'll be susceptible to another bug, and given that he's immunocompromised, i'd prefer to leave the tube where it is for now and re-assess in the morning." she relented.

but they're pulling it today. and (i think) i'm ok with that.

as for me... well, this week, i wasn't doing so well, myself. i am exhausted in so many ways, completely drained. in fact, one person described me as looking "deflated." i told her i felt like i'd had the crap kicked out of me for the last 6 weeks, and she said - get this! - "well, you have." nice. so... last night i came to hamilton for the night. i got to spend some time with the kidley-winks (we played snakes & ladders - wow, i'd forgotten how fun that game can be!) and had burgers, and i got some much needed sleep, some restful sleep... and it was lovely. today i feel much better, and ready to face whatever crap gets thrown my way.

thanks for all the prayers/vibes/crossed crossables. we really appreciate them. please continue to do whatever it is you do, because we're not done yet. and please remember all the other kidlets out there, including Hannah (with TGA) who had her switch done on friday and is in the unit, and taylor who has a rare syndrome which includes cranial issues, feeding issues, and heart issues, and Mia who is 7 years old and was in a horrific car accident last weekend, and will require extensive plastic surgery to reconstruct her face and limbs (her mother was asked to bring in a picture so they would know what to do). ethan is still here, but out and about a bit, and there's a code blue plan in place for his mom Shawna (who has CHD and a history of strokes). so there's quite a few people to pray for, but we all need it. thanks so much. :)

Thursday, April 15, 2010

Prayers Urgently Needed for Asher

Urgent update:

Wendy here, Heather asked that I do a quick update.   Asher has developed an infection in the surgical site/pacemaker area.    The surgical fellow has been up to see Asher and is very concerned.  They have started Asher on Vancomycin and Gentomicin and have done a blood culture.    These are heavy duty antibiotics given via I.V.   The Vancomycin covers gram positive bacteria and the Gentomicin covers gram negative bacteria.    These meds aren't given lightly and both come with a long list of side effects.   Vanco is very hard on the kidneys and Gentomicin can cause hearing impairment/deafness.    The fact that Asher is getting BOTH of these says that things are very serious and they aren't messing around with any bacteria in his chest or heart as it can very quickly become life threatening.   Please keep them both in your prayers and thoughts tonight.   This is very scary and I know all your prayers will be appreciated as they summon the strength to tackle yet another unexpected detour in their efforts to get recovered and go home.   
Thank you
Wendy

****update from Heather's facebook last night:  

"Heather'is afraid, but we caught the infection in time. it spread so quickly: this morning, it was just a bit of pink around the incision site. now it's over most of his stomach, around his side and across half his back. and it's got a highway straight to his heart, so this isn't good... and neither are the antibiotics he needs... please pray for us."




Wednesday, April 14, 2010

hey, margaret! his sats and HR match!!!! (in the good way!!!!)

what a difference an afternoon makes!

asher went in for his surgery yesterday at 3:00. at about 6:30, dr c came out and gave me the good news, that asher did well, and the pacemaker is in and working. how do you spell relief? P-A-C-E-M-A-K-E-R-!

the pacer is set to kick in when asher's HR dips below 80, and yeah, it's working right now. but it makes the ECG line on the monitor look interesting. there is now a white spike where the P-wave should be, at the right distance from the QRS line... oh, dear, i know too much about this stuff now. sigh...

asher looks great now, all things considered. he is pale, but it's pale pink now, not grey. and his eyes are puffy, but a couple doses of lasix should clear that up pretty quickly. he isn't draining much, either, and the plan is to remove the drain tomorrow. asher is also in quite a bit of pain. his voice is quiet and he doesn't move much, but we're giving him morphine as needed, so that should help. but he's asking for lunch, and this morning he asked, "mommy, i want go playroom. but not right now. later. after lunch." so this is progress. he knows he's not up for it right now, but he knows he will be once he eats. so that's delightful to see.

he'll be getting a holter today, which is standard procedure after a pacemaker, just to make sure everything is firing the way it should. here's hoping it will be our last holter for a very long time (this will be our 4th in about 3 weeks).

and in case you're wondering about me....

last night i wasn't doing so well. i started down a slippery slope of anxiety again, and i don't want to go back to that, thank-you very much. so i drank some water and went to bed... and didn't wake up till about 9:00 this morning. i'm still tired, but my brain is working the way it's supposed to and i'm feeling better. the exhaustion is only physical right now, and i can deal with that.

in other news...
i've been asking for prayers for several kids lately. today i need to add a couple more.
  1. a little girl (i don't know her name, but she's 7) was in a head-on collision on friday. please pray for her and her mom.
  2. a little boy, Jack, who had a heart transplant and is now battling cancer.
  3. another wee babe, who is 16-months but weighs only 13 lbs. a bunch of us moms were talking with her this morning, and giving her all kinds of questions to ask the docs. has he had a sweat chloride test? screening for chromosomal anomolies? have they checked his heart? what about a GJ-tube (since he's vomitting formula after being without food for 18 hours)? she made a list, and she'll be asking, so i'll try to keep you posted.
  4. please remember allison and brigid, shawna and ethan, allyson and ethan (VSD closure), stephanie and mason.
  5. a mom i know from SickKids, who has been part of asher's team over the years, just had her first baby 11 days ago. he's here, too. i don't know any details, but Someone does, so please hold them in the Light, too. she looks tired and stressed and scared. she described it as "a rough 11 days."
i think that's about it for today's post. i'm off to get lunch for myself and order something for asher (probably fat-free hotdogs and green jello and chocolate milk). i'll keep you posted.

Tuesday, April 13, 2010

in a few short hours, asher will be a robot, "but not a big robot. i be a little robot."

asher is scheduled to go in for his pacemaker at 2:00 today.

yesterday, when i was talking to deirdre (thank-you for the wonderful lunch, by the way... it really was lovely and energizing and delightful, for so many reasons), she asked how i was feeling going into this surgery. i told her honestly that i have never, in asher's life, been so excited going into a surgery.

and then last night, they took asher into the treatment room (where he has never been) and put in the IV. he screamed and screamed and screamed and fought and screamed... and all i could do was give him kisses... and pin him down on the table. it was awful. completely heartbreaking, to know that he is so scared, and that he has to suffer this much, and that it never ends...

and now today, i am exhausted. i can't wait for this surgery to be finished. i can't wait to see him afterward. and i can't wait to go home. this is our third admission in less than 6 weeks, this is already the longest admission, and we're not done yet. this is his second heart surgery in a little over a month.

so i'm done. i have nothing left, i just want to cry, and sleep, and hold my pink baby (not a grey one, thank-you very much, just a pink one), and cry some more, and sleep a bit longer, and cry some more, and not be in a hospital, and cry a little bit more (once i've rehydrated), and sleep in a comfy bed, and cry all night, and then just sit and stare at my beautiful orange walls, and cook in my own kitchen, and laugh at bram's quirkiness, and play with blithe and her barbies, and cry some more, and cuddle all three of them to sleep, and wake up surrounded by my kids, and cry a bit more, and make breakfast for all of us, and do some laundry and dishes and tidying and yardwork and pet smokey, and cry a bit more. i miss all of that (ok, maybe not the dishes, but everything else i genuinely miss). i want it back. i'm just so tired of all of this. i know we only have a few days left for this admission, but then what? this life never stops. it's always appointments, trips to emerg, paeds appointments, watching for colour and symptoms, and holding my breath and waiting... for... something. i don't even know what i'm waiting for, but i feel like i'm just waiting for something to go wrong now. and i'm too tired to do it anymore.

and yet i have to. i have to keep going. i have to comfort asher, play with him, help him to be brave, help him laugh and smile and giggle and play and live. and i don't mind any of that. i love it, i really do. and i honestly wouldn't trade a second of this life if i had the chance... but it hurts to know that this kind of life exists, where predictability and stability and simplicity are just dreams that a mother dreams and nothing more...

right now, this is just too hard. i'm too tired, too drained, too weak, too heartbroken, too spent.

and all that being said...

please continue to remember brigid and allison in london. a long, scary admission, and allison is tired.

little ethan (VSD closure) is going home today! his mom is nervous, but this is exciting for them. the last drain is coming out and they're outta here! so enjoy, my friends, you've earned it.

and another little guy to hold in the Light. his name is also ethan. not a heart kid, but his mom is a CHD survivor, which is fantastic to see. ethan is 6 months old, and currently has pneumonia, and after the chest x-ray revealed lesions in his lungs, they did a CT scan, and discovered a tumour in his right lung. it's inoperable, due to its location (right behind his heart) but is potentially blocking his airway. ethan is going in for a PICC line today, because his IV keeps blowing and they have run out of places to try. he's so adorable, all pink and chubby and happy, and honestly, his mom is one strong woman. heart survivor, and ethan is the youngest of her seven (yes, you read that right, seven!) kids. please pray/cross your crossables/send good vibes their way. ethan will be going in for more tests in the next little while, and mom is scared out of her mind right now.

thanks so much for the prayers and so forth; we all really need them right now. my parents are coming up this afternoon, and bringing the kidley-winks with them, so that will be lovely. after the surgery, asher will be back up on the ward, not the unit, which makes it nice, because we don't have to pack our stuff, and oh, there's a lot of it.

Friday, April 9, 2010

please pass the barf bucket... and some new bedding... and the menu... and a candle...

and that about sums up this post today.
first up: the barf bucket. asher will be going early next week for his pacemaker. his HR was almost normal yesterday while he played, staying in the high 60s to high 80s all day. (and let me clarify "normal": the high 60s to high 80s is almost up to his pre-fontan resting HR... but this is our current normal, so i'll take it.) although, at one glorious moment, the "tachy" alarm went off. ah, sweet tachy, how i've missed thee. (oh, for those who don't live and breathe by ECG monitors: "tachy" is short for "tachycardia" which is fast heart rate. a beautiful alarm to hear after spending 3 days with atropine at the bedside because of serious brady. LOL) then this morning on rounds, balki was giving report, and he said that asher had a good night with no episodes, and his HR stayed in the low 40s all night. yes, folks, you read that right. at this point, low 40s is good. then balki continued: "and i saw the holter report from london, and it was impressive . it showed his heart rate going as low as 28, with some long pauses." i think i'm going to have to explain what "impressive" means to this fellow; perhaps "remarkable" would have been a better word. or "terrifying." or even "nauseating." all good words, and much more applicable than "impressive." but that's just me, and i'm obsessed with words (in case you hadn't noticed already).

second: some new bedding. this is asher being asher. sigh/LOL. this morning, he wanted to pour some water into his skim milk (apparently it's not watery enough. blech!) so he grabbed my water bottle, turned it upside down... and missed the milk. but fortunately, he managed to hit the table, the bed, and my pants! well, isn't that special. but i suppose it's wonderful to know that even in the hospital (which, btw, he doesn't want to leave. he informed me of this this morning over breakfast. too bad, kid, this time next week we are outta here!) he is still his usual, mischievous, 3-year-old self. but now i need to remake his bed. and so it goes...

third: the menu. yesterday, i'll admit, i was exhausted and overwhelmed, and ok, i'll admit, i probably (read: definitely) haven't been taking good care of myself. so, my dear friend DW came over in the evening. we hung around until asher was asleep... and then we went out. we "meandered" (toronto-style, meaning "not quite running") over to college street, and found a delightful little establishment, and had a good time. she introduced me to a friend of hers (teehee) and we hung out and talked and had a deep bib-interp-type conversation, and then we "meandered" back to the hospital. then we talked some more, and tried to help someone out, but he disappeared before we could get to him. so it goes in TO, i suppose, but at least we wanted to help. next time we'll react right away... i hope. we've each been so blessed in the past (and present)... it's such a joy to get the chance to pay it forward.

so there's the daily report from asherland. i'll try to update over the weekend, but it will be difficult to get to a computer. i'm looking forward to a "boring weekend" (dr c's words)... but at least i'll have some company. the kidley-winks are coming up tomorrow, and i hope to have some other company at some point this weekend... dr c's wife. yes, this is my life, folks: i'm going to be chatting with my son's heart surgeon's wife. it's a long story about how this came about, and why i'll be talking to her... maybe one of these days,  i'll fill you in, but for now i'm holding it close to my heart (at least in the blogosphere. i've told some people already, but it's too amazing to put into written words right now, so you, my dear readers, will just have to be patient) and i'm  looking forward to an amazing opportunity.

but while i have your attention, thank-you for your prayers/thoughts/vibes for little ethan. his surgery went well the other day, and the plan is to bring him back up to the ward today! i've been talking to his mother a good deal, and it's funny, the people who come into our lives in the hospital. ethan & co. were in the room next to us post-fontan, then we all went home on the same day. when we were transfered back here the other week, ethan & co. were in the room next to us again, and we all went home on the same day. and when we arrived here on tuesday, ethan & co. were in the room across the hall from us! funny how... but please continue to hold him and his family in the Light. he's doing well now as he recovers from his VSD closure, but now we're praying that he stabilizes in the big picture, and that he and his family can finally have some peace. CHD is stressful and scary, regardless of the severity, but at least we can be graced with other families who have "been there, done that."

and since you're on your knees, please continue to remember brigid and allison, who will be in London hospital for another couple weeks. brigid is a complex (and delightful!) girl, and allison is an amazing mom, but this admission is terrifying and stressful and worrisome. they need some rest, some peace, some stability, and something as close to normal as possible. i've mentioned them before, so i won't go into too many details, other than that right now, B is battling sepsis with weird and rare bugs, and it's throwing off a lot of systems for her, and her mom is pretty scared. send them Love and hold them in the Light over the next couple of weeks, and i'll try my best to keep you updated on her.

also, please pray/cross your crossables/send good vibes out there for mason and his mother stephanie, as well. this is another family we met in london during our first admit there in march. mason is another complex child with multiple issues, and had a fundoplication last week. and stephanie needs prayers as well, as she doesn't seem to be coping very well right now, based on her FB status today. please hold them in the Light, too.

that's it for now. i'll try to get online at some point over the weekend. if i don't manage to update, please don't freak out. computer availability is limited without the resource centre, so a lack of updates is neither good nor bad... it just means i don't have a computer nearby. so... ttyl! :)

Thursday, April 8, 2010

because on the roller coaster of asher's life, ups and downs aren't enough, so he threw in a delightful corkscrew...

so, EP finally and officially ok'd the pacemaker, and we were going to be going in today.

then they did bloodwork.

and checked his INR (clotting time, since he's on blood thinners).

and it was too high (he doesn't clot easily enough).

so...

surgery has been post-poned. which means... more waiting. so far, we're on Day 7 of this admission, and at this rate, we're going to be here for at least another week.

i was chatting with maricor (the surgical co-ordinator) in the hall this morning. that's right, she saw me walking along, and she stopped to talk to me... because she knows who i am. you know you're here too much when... ugh. anyway, right now it looks like tuesday will be the day.

till then, they're withholding the warfarin and just making sure asher doesn't hit his head on anything... although i don't think it would be a problem even if he did, since he smashed his head on the table last week when he fainted, and there wasn't even a mark. so we're probably good for that. but it would still be waaaaaaay too risky to do surgery in a kid who doesn't clot, so we're waiting. "obviously," quoth dr russell on rounds this morning, "if we need to do something sooner, we will, but the plan is to wait and make sure the INR comes down on its own." sigh...

so that's the plan right now. hold off on the warfarin, probably more bloodwork in a couple days, and surgery on tuesday. the date's not carved in stone yet, but that's the word on the street... or ward, as the case may be.

please hold us both in the Light over the next few days. asher's HR is still low, and i'm exhausted in every sense of the word. it's just getting to be a bit much for me. i really need a break right now. :( so yeah... that's what we need right now. patience, rest, peace, a change of scenery (for heather) and a heart that beats (for asher). thanks so much.

all that being said, we had a delightful opportunity to give back a bit this morning, which, of course i jumped at, given my beliefs about stewardship and all that. (i believe we have a responsibility to use what we've been given to help others, and we've been given a boy with a very unusual heart, and because of that, we're often given opportunities to further research and such.) this morning, dr golding approached me about allowing him to use asher to educate some medical students on examining young children. of course i said yes, and i think those poor kids didn't know what to make of us! lol when they came in, asher wasn't afraid or nervous of anything, just played with his toys while they "looked for his breakfast" in his tummy (honestly, at this point, they could have said, "i'm just listening to your stomach and looking for your liver" and asher wouldn't have minded, but he's not exactly the norm...) and took his deep breaths. apparently, asher was a great one for them to learn on, since they could actually feel his liver. apparently, that's not normal... but everyone has always found asher's liver pretty easily. not where it's supposed to be, mind you... just the other week it was 6 to 8 cm lower than it should be, but that's good. now these kids will know what they're feeling for. i had to explain asher's condition, his other issues, what we're in for this time, his development and growth, that sort of thing. probably a little overwhelming for a bunch of students, but hey, if you want to be a doctor, you're going to meet kids with wonky physiology, so might as well start with the wonkiest heart possible, right? anyhoo, just thought i'd share that little story. ttyl! :)

Wednesday, April 7, 2010

in a couple days, asher won't be able to go on roller coasters anymore. lucky for him, he's a roller coaster unto himself

lucky for him, perhaps... but does he have to take me along for the ride?!?!

so, it's been interesting since getting here. we got here yesterday afternoon, safe and sound. and since then, yeah, it's been up and down so many times i've lost count.

we got here, and first up: a holter monitor. are you kidding me?!?! honestly, i almost cried. HSC wanted one while we were in london the first time, a couple weeks ago. then they wanted one while we were in london over the weekend. now they want another one?!?! but they really only wanted the overnight data, so it's already off. i talked to the fellow, filled him in on all the details about the last few weeks (why does it feel like months?)... he wasn't surprised. and, by the way, neither was i when he refered to asher's "intermittent AV block" and "sick sinus syndrome." (remember a couple weeks ago, when i started learning about arrhythmia, and i said i had an idea of what the problem was? yeah, that was it. HAHA! i was right again!) anyway... if you look up Sick Sinus Syndrome, you'll find that it involves periods of tachycardia [fast heart rate] (which asher had a year ago) and bradycardia [slow heart rate] (which asher has now). you'll also learn that it is very rare, but mostly happens in kids who've had heart surgery, and that the only treatment is a pacemaker. so......

they sent in an EP fellow (EP = electrophysiology. the ones who are especially obsessed with lub-dubs). he asked a bunch of questions, i told him about the dizziness and the fainting spells and the brady episodes in london, and how hard it is to wake him when his HR is so low. honestly, at that, the poor guy looked like a deer caught in the headlights. then i continued with the wide range of grey asher turns. this poor guy... the fellow, i mean. he looked actually scared.

cut to rounds. the fellow hadn't had a chance to see asher yet, but he gave his little spiel anyway, including the delightful part where he said, "he didn't have any episodes last night." dr russell quickly flipped through asher's chart and said, "he was in the low 40s all night." "well, yes, but no real episodes." "but he was in the low 40s all night." a nice, gentle reminder to the cardio fellow (who looks like Balki from Perfect Strangers, btw, so from now on, that's what i'll call him, for clarity's sake) that low 40s is still considered bradycardic for a 3-year-old. so the plan is to discuss asher again with EP (which shouldn't be a problem, given the fellow's reaction last night) and get a plan in place by the end of the day, "one that we can all live with," as dr r put it.

but there have been some interesting revelations along the way:
  1. our fave surgeon, dr c, reads this blog. he told me yesterday that he read the blog and that it was an easier resource for him than going through all the charts and records. so... hi, dr c! :)
  2. maricor, the surgical co-ordinator, didn't want asher to have breakfast this morning "just in case." but then she changed her mind, so he's allowed to eat now. but! this little tidbit shows what everyone is thinking, and just how quickly this will happen.
  3. balki said to me today that everyone knows that asher will be getting a pacer, but we still have to go through the usual channels.
  4. dr c popped in to chat this morning. he said that asher looked great, though sweaty. then he looked at the monitor. and saw asher's active HR. 62. yeah. and asher's sweaty. quite sweaty, in fact. then he (dr c) said, "well, i'll talk to you later today." and i wanted to vomit.
  5. maricor was walking past our door as dr c was walking out. he asked her what the plan is for asher, and she replied, "well, we're just waiting for the official word, and dr r is running a clinic today, so later on today we'll know for sure."
so guess what this all means! asher's very likely getting a pacemaker, and within the next couple days. we just need EP to say officially that this is what we're gonna do. when i hear "officially" i'll let you know.

in the meantime, please hold asher in the Light. and me, too, for that matter. this is exhausting, scary, stressful, exhausting, tiring, exhausting... too many times over the last couple of days i have nearly burst into tears just from exhaustion. i'm trying to keep my spirits up right now, and think positively, and distract myself with cheesy romance novels and stuff like that, but still... we're sitting in a  room at sick kids, and everyone knows what the next few days will bring. so please remember us.

also, please continue to remember brigid. she hasn't been having a good couple days, either, and they'll be transfusing tomorrow.

and since you're praying/whatever you do... a little boy named ethan (VSD with CHF, 6 months old) is having his OH VSD closure right now. he's got dr c, so you know he's in good hands, but the mom is very worried and scared and tired. please remember them, as well. thanks so much.

Tuesday, April 6, 2010

just heard from cardio......

AND WE'RE GOING TO TORONTO!!!!!!!!!!!!!!!!!!!!!!!!!

we're leaving as soon as transport is arranged, and surgery will be soon. i'll post more when i know the details (like when the surgery will happen) but they're rushing this now.

Monday, April 5, 2010

getting you all caught up...

sorry for the lack of post yesterday... i was simply too exhausted to write. this weekend has been one of the longest few "daze" i have ever experienced in asher's life. sigh...

as i posted on saturday, asher's heart rate while sleeping dips. and dips very low. but only for a minute or so at a time... while he naps. apparently, when he sleeps overnight, however...

it gets down to 30...

and stays there...

for 5 minutes or more... until he's roused.

which is exceedingly difficult to do. after one episode on saturday night, his nurse turned on all the lights, turned on the TV - loud - changed his diaper, washed his face, and sat him up... and then he woke up. for about 5 seconds.

and then he crashed again.

and when his HR is down, he is grey. and i don't mean slightly dusky. no. i mean, grey. think charcoal. yeah.

i'll admit, i was terrified after the first episode. so i called a friend (and really, i just bawled when he answered the phone; i could barely speak at that point), so he raced over and stayed here with me for a couple hours. it helped get me through the fear... only for a few hours, but it's better than nothing.

during one of the episodes on saturday, asher was very dark grey. so much so, in fact, that the nurse got scared. she called in the resident, who also got scared, and ordered that atropine be kept on asher's bedside table, just in case. not only does everyone here now know that asher needs a pacemaker, the PCCU docs (and cardio) don't even want him here anymore. i heard the resident say, "get him out of here. just send him to toronto now." excuse me while i vomit.

k, back.

yesterday morning, i went to church. i figured the break and change of scenery would help. oh, yeah, great idea. i stayed for the first song, and then i ran out to the atrium, sat down at a table, and cried. and then it was like a cloud of compassion settled over the church. a nice man (whom i'd never met before) came over, and said, "i'm not trying to be nosey here, but... you wanna talk?" so i told him what was going on, and he went and got the pastor's wife, who came right out, sat down with me, hugged me, listened to the story (she knows about asher), and got me a fresh cup of coffee and piece of banana bread (that's right, my church has a coffee/snack bar... i love my church. lol) and prayed with me. we talked at length about everything going on right now. and i cried. and cried. and cried.

then a friend and i went out for lunch, where we bumped into a couple of friends, so we sat with them and talked and laughed and had a great time. a refreshing time. a fun time.

when i got back to the hospital, the kids were there, so i cuddled with them for a little bit... until i dozed off. yeah, i was exhausted! asher was overjoyed to see them, and he played so nicely with them. it was wonderful to see them all so happy together. (blithe and bram have now gone back to hamilton to stay with my parents. hopefully they can go back to school there while asher's in the hospital.)

my friend and i were invited out for a barbeque last night, so i went and again had a wonderful time, and by the time we left, i was very tired, but only physically. i was restored last night, and it was amazing. this is the good thing about PCCU: with a nurse at the bedside constantly, i can leave when i need to, and know that asher is still being very well taken care of.

overnight, i slept. i fell asleep at midnight, and didn't wake up till after 8:30 this morning. gee, think i was tired? lol but this morning, i feel better. much more functional, and able to continue and support asher the way he needs me to.

rounds this morning was interesting. apparently, asher didn't have a super-spell last night, just a couple times when he went down to the low 40s, so that's reassuring. (how funny, to think of a 3-year old with a HR in the low 40s as "good.") but all night, and still this morning, he is very sweaty (and he usually isn't a sweaty kid, so this is alarming) and slightly dusky. i can see it, and his paed would see it, but most wouldn't, so it's tolerable. but PCCU doc had this to say:

"so, we're just waiting till tomorrow, when the doc we want is on in toronto. then asher will be able to go and get his pacemaker. until then, if his HR drops to 30, even in his sleep, and he doesn't have any symptoms, we're just going to leave him. rouse him if he drops to the 20s, but leave him if he's in the 30s with no symptoms. but if he turns grey, we're going to poke him [give him the atropine]." i told her that once he's in the 30s he is very dark grey, darker than i've ever seen him (and oh, the shades of grey i have seen him!), so she nodded and said, "yeah, if he's like that tonight, we're gonna poke him."

so that's the plan. i won't go on my rant about the dietetic assistant i've been dealing with about asher's menu, but can you believe they don't have a low-fat/fat-free diet for kids at this place?!?! and she seems to think that he can still have red meat and mashed potatoes and low-fat cheese and cottage cheese (regular) and stuff like that. this morning, i'd had it, but told her politely to just call the dietitians at sick kids and talk to them. here, they seem to think that we've been given a total fat per day maximum. i told her, "no. it's fat-free. that's what i was told, that's what is written on the list i gave you. so i don't need to know how many grams of fat are in the mashed potatoes or lasagna. i was told fat-free. that's it. fat-free. i can't help you beyond that, but i really don't want asher having chicken breast for lunch and supper every day. what do you do about adults when they have chylothorax? this can kill my son. please, just call the dietitians at sick kids. they can help you better than i can." (and i realize that sounds snippy, but i was actually more gracious than that. i'm just tired of trying to explain to her every day that chylo can kill asher, his diet needs to be fat-free, i don't know how many grams of fat he can have in a day, because the therapy is fat-free. that's it. this isn't rocket science, i don't think, and i don't think i'm asking too much here. just a machine to keep my baby's heart beating, and a diet that won't kill him.)

ok, maybe i didn't spare you the rant. sorry. lol

so that's where we're at right now. asher is playful but pale and grey and sweaty, i'm rested and frustrated with dietary but hopeful for tomorrow, and we're just twiddling our thumbs and hoping asher doesn't smash his head on the bed rails if/when he faints.

please continue to hold us in the Light right now. it's stressful and exhausting here. we're managing today, but who knows what tonight (or tomorrow) will bring. thanks. :)

Saturday, April 3, 2010

A Gorilla in the House

i "stole" this from a friend because it just sums up this life sooooo perfectly. enjoy.

Acquiring (or having a child with) a disability is a bit like getting home to find there's a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the provincial medical services) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere, mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home to the gorilla's waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren't doing it right due to sloppy thinking or lack of committment. The 99 other gorilla-wrestlers won't have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of dollars trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get their pre-gorilla lives back. They'll be older, jaded, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accomodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

People get really upset about this and throw around accusations of "giving up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too could have a gorilla in their house.

Food for thought - but it pretty well describes life when we bring our gorilla home from the zoo.

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.

prayer for a friend

hi, everyone!

believe it or not, asher is not the only sick kid in the world. lol so this morning, i'm asking for prayer for another little girl we (asher and i) know.

her name is brigid. i'm not going to go into all her "quirks" (you can check out her blog if you're interested), but suffice it to say, she is a very sick little girl right now. i met and befriended her mother while we shared a room during our london admission last month, and wow! what a family! i swear allison is one of the strongest mothers i have ever met. truly remarkable.

right now brigid is back in hospital with pneumonia and sepsis. in fact, she has several bugs growing right now. this isn't good. asher's had sepsis, so i know exactly how terrifying and brutal and heartbreaking (figuratively and literally) it can be. brigid is going into the OR at 9:00 this morning, but of course, as these kids are wont to do, she has thrown everyone a curveball... her INR won't come down (INR is what they call blood clotting time)... and she's not on bloodthinners. kind of a problem, and this is after several doses of vitamin K (a med that is supposed to promote clotting). they're planning to give her a dose of another med before they go in, so please pray that it works.

but please just pray for brigid and her mother (and the rest of the family, as well, since you're already on your knees). this is a scary time for them, brigid is very sick right now. so please pray that they can get her INR under control, that she'll make it through the procedure uneventfully (they deserve something uneventful), that they'll get rid of the bugs, that allison will have the strength to keep going (these roller coasters are exhausting), that the rest of the family will have peace... and since we know God can and does work miracles, pray for healing. i mean, complete healing. brigid has a very rare, very complex condition... please please pray for them all. and don't forget the docs. they go into paeds because they love kids, and seeing their patients suffer like this is stressful for them, too. so pray for guidance, wisdom, strength, compassion, all that good stuff. thanks so much.

and remember, allison, you are Loved.

Friday, April 2, 2010

because apparently, we haven't been in the hospital enough yet...

we're back in london. in fact, we're in the PCCU. yes, Paediatric Critical Care Unit.

i won't repeat what wendy wrote earlier, so i'll just explain why we're here. the cardio in london was actually "frightened" (his word) by asher's symptoms. bradycardia without symptoms is acceptable. symptomatic bradycardia is a completely different animal. it is actually dangerous. everyone here is now convinced that asher needs a pacemaker. toronto, not so much. they just want evidence that the symptoms happen during periods of low heart rate.

and to clarify what i mean why i say "low heart rate"... asher's average heart rate now is 59. that's right. 59 beats per minute. his resting heart rate before the fontan was low to mid 90s. 59 - 70 is now his active heart rate. this is bad bad bad. especially now that he has these symptoms. he nearly fainted on tuesday night, he actually fainted last night, and he's almost constantly dizzy and grey. ugh.

so here is my prayer request tonight: please pray that he has one of these "episodes" during a period of low heart rate. that's right. please pray pray pray that he faints with a heart rate in the 40s. or wakes up in the night, when his HR is in the 30s or low 40s and starts crying because he's getting dizzy. yes, you're understanding me right. we want and need asher to crash right now. so please pray or do whatever it is you do really hard that we have a very rocky admission. this is what will get the evidence toronto needs. so that asher can get what he needs.

i'll try to keep you updated while we're here.

Back to Hospital

Wendy here....bet you thought you were done with me eh?    Heather asked me to update for her so here goes:  

Asher fainted last night at the dinner table - as in one minute he was talking and the next he bonked his head off the table in a faint. Heather learned the next day (today) after asking him some more questions (cause we all know that 3 year olds aren't necessarily forthcoming with info)  that his ears felt like there was cotton in them and everything went black before it happened - not good signs at all.  

So Heather called Asher's ped today and spoke with London Cardio who then spoke with Sick Kids.   London cardio feels that Asher for sure meets the criteria for a pacemaker.   Sick Kids however wants some more data before being 100% sure (hey they are THE BEST place for cardiac kids for a reason...they want to be 100% sure this is the only way to go and do what's best for Asher).   So Heather and Asher went to the ER in London today to be admitted that way (only way to get a bed right now is admission via ER).   Over the next few days Asher will have some testing done (ECGs, Holter possibly...not sure exactly what else for the moment) and this should give Sick Kids the info that they need. 

Heather is actually feeling good about this admission.   Asher is so unstable right now that the best place for him is at the hospital with monitors, doctors, meds etc.   It looks like everyone is moving closer and closer to giving Asher the pacemaker, Heather said "it's baby steps, but in the right direction".    Please keep them in your thoughts and prayers, it's a scary time and Heather is very very worried about Asher and the wait for the pacemaker decision/surgery is wearing on her and stressful.    As for Asher - with the exception of the fainting, he's happy and playful and his usual chatty self.    I am sure he won't be impressed to be back in hospital so please pray for him too.

And as always - for those of you in the London area - Heather loves coffee (black) and poutine (lots of gravy).

Thursday, April 1, 2010

and one more thing i forgot before...

we've added another specialist to our list. we got rid of gastro, OT/PT/SLP, dietitian, and nursing...

and now we've added

neuro!

asher gets (what i suspect are) migraines, which are so bad he ends up admitted for ?sepsis/meningitis with febrile seizures. and with the stent material in his AV node, we're just wondering if we should be concerned about the migraines and seizures.

now, normally febrile seizures aren't a huge concern. they occur with high fevers and don't hurt, don't cause any brain damage, etc. BUT combined with the migraines, stent material, and asher's fondness for complicating the simplest things, i asked for a consult. if they laugh us out of the room because clearly there's no need for neuro, then so be it, but at least we looked into it.

our appointment is in august.

just thought i'd let you know.

(yet another) post-op clinic

we went for post-op clinic yesterday, since we're still in the post-op period, and we needed follow-up after our admission. and wow, clinic was interesting. a mixed bag, if you will.

when we got there, i mentioned that asher had just had a chest x-ray the night before in st thomas (oh, yeah. forgot to post that. i took asher to STEGH emerg on tuesday night because of a grey spell and puffiness. turns out his rhythm was acting up, but we came home), but liz came out and said that she wanted asher to have another x-ray done because the report from stegh said there was no pleural effusion, but she could clearly see one. not surprising, since i'd seen his x-ray and I could see it! then she asked if asher was still on the fat-free diet, and i calmly said "yes" and she nodded and sent us downstairs. to x-ray. she didn't banish us or anything. lol

we got back from x-ray and waited for a few minutes to be called in. asher walked around, happily playing with the train table and his own train that he loves. he was wandering around that table for a good 10 minutes, laughing, reaching all over the place... pretty active, actually. (remember this paragraph when you read the next part.)

so, we got called in for vitals and ECG. asher's sats were 91-93% (you'll note, his sats the other day were 97%, so this is markedly decreased now). and his heart rate... ugh. that's all i can say. just... ugh. after all that activity, his heart rate was... low 50s. that's right, an active heart rate about half what his resting HR was pre-fontan. then the ECG, which showed the same issues from the night before at STEGH. i won't go into the details, since i'm sure most of you won't know what i'm talking about, but i'll just say that it didn't look the way they would like it to. sigh.

next, weight and height (and before i continue, my apologies to my non-metric readers. i'm a hospital mom, what can i say? lol). he's 93 cm tall (a little over 3 ft), and weight... 13 kg. somehow, this kid of mine has managed to GAIN weight on a no-fat diet!! wha-?! although i suspect i know why...

then we went in to the room and liz came in. liz sat down and said that she can see a pocket of fluid, which is quite concerning, and his right diaphragm is lower than his left one, which could be from all the fluid before, so we need to make sure asher does a lot of deep breathing, coughing, bubble-blowing to train his lungs to take air down to the bases (air entry to bases is still decreased, btw... for those who understand that sentence). and let me tell you, she was so full of information, spelled out exactly what the problem was and what we need to do and what might happen and what might be causing all this... she was very informative and helpful. then she got up and said that she would go get dr welisch.

who sat down and spoke about the "concerning" pleural effusion (pocket of fluid). we have to keep an eye on this again, since clearly it isn't improving, and this will hinder lung function and all that, so it's a problem.

then she continued.

"the other problem, and it's a much bigger problem, is the bradycardia and juctional escape rhythm that asher has now." and she talked at length about all of this, and she seems to be thinking now that asher will still likely need a pacemaker in the near future. (and fyi... pacemakers are dr welisch's specialty. handy, wouldn't you say?) i said that i assume he will need one, since the hope was that, by stopping the carvedilol (which slows the heart rate) his heart rate would pick up, and it's been a week and a half since we stopped it and there hasn't been a change. she agreed, saying that it definitely would have done something if the beta-blocker was a factor. she is very concerned about these arrhythmia issues, and will be keeping a very close eye on asher now. we're going to have a few holter monitors (24-hour ECGs, basically) over the next little while, beginning next week, to see if there is any improvement.

then she asked...

"does he turn grey?"

i waited till the wave of nausea passed before i answered, "yes. quite often, actually. that was why we were in emerg last night."

"does he get dizzy? has he fainted?"

again, wait for the nausea to pass, then, "he gets dizzy quite a bit, but he hasn't fainted. last night at supper, he was chatting and playing and goofing around, and then suddenly he turned pale, his eyes lost their focus, and he gripped the table with both hands because he was swaying a bit. he didn't seem able to hear when we spoke to him unless we were quite loud, and i suspect everything was black, because i don't think he could actually see anything."

"ok, well, we will keep an eye on this, because this is very concerning, and we will do the holter next week. sometimes these things improve, but they don't always, and often a pacemaker is a good idea in kids once they've had the fontan. so we will see what the holter shows us next week, and we will watch this very carefully."

and then i asked her to call our paeds because she would like some direction for when asher comes to emerg having crashed with a heart rate in the 20s or 30s. (and before you think that can't happen, asher's HR when asleep has dipped into the low 30s, so it's a distinct possibility.) and i asked dr w for some information about arrhythmia so i can learn about it, and she said that she will get me some information for our appointment next week, and she will also give me information about pacemakers, as well, because i should know about that, too.

so there you go. some good stuff, but mostly bad. for those who don't understand all the technical jargon, the gist is this: asher is frighteningly unstable right now, and has two major issues going on that can each cause huge problems on their own, and we're dealing with both at the same time. chylothorax can be fatal when it's not controlled (and asher's seems to be ignoring the diet right now), and then there's the arrhythmia, which is the "much bigger problem." yeah.

so please pray/cross crossables/send healthy vibes for asher. he's not in great shape right now... though would someone please tell him that!!! he hasn't stopped playing or chatting since we came home from toronto!!! LOL