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!


Pam said...

When they wrote the pacemaker pamphlet I don't imagine they had little boys in mind, perhaps because little boys can't read. I'm glad he can have a mammogram though . . . ROTFLMAO!!!!!

Mom said...

I kept trying to explain to Asher that his trains can't be any closer than 6 inches to his pacemaker. Perhaps I should have used metric measurement?!? Please find out the answer so I don't worry about that any more. And as for the weight issue, before you know it, you'll be stuffing Asher with all sorts of wonderful fatty foods and he'll again be our little tank.