Sunday, June 29, 2008
so there you have it. asher's coffee tale o' the week. i'm telling you, this kid spends way too much time with doctors, and they're rubbing off on him! lol
oh, yeah, and before i forget... for those of you on facebook, you may have noticed yesterday that i mentioned about his feeding pump dying. yes, you read that right. his pump died. ack! and this is the second Kangaroo ePump we've had, and it's been less than 10 months! and of course, kangaroo doesn't seem to have tech support on the weekends. or they just don't want you to call with a problem on the weekends, because the website doesn't have the number anywhere, and neither does the local pharmacy through which we get our feeding supplies. so... i am actually quite happy with the loaner pump we got from Yurek's for the weekend, but i am most definitely not happy with our old pump. and in fact, we're not the only family in town having problems with it. so... i will not be ordering another one. i'm going to look to another pump, possibly even another company altogether. like i said, this one we have right now is a delight! well, that's our adventures for this weekend. i'll try and post again later in the week, but time is scarce right now, since i'm on my own now. anyway... talk to you later! :)
ps - i had posted a while back about a couple other heart kids. here's the update: last i heard, owen was not, in fact, septic, which is a good thing. i haven't heard much else, but at least his blood's clean. as for dominic, he's home, and other than getting his coumadin levels checked and adjusted as needed, he's doing well. thanks for all the prayers for these little guys. and one other kid (and mom!) who needs prayer right now: hunter, another single ventricle from london cardio, has been having apparent hearing issues. well, after numerous tests, they have figured out what the problem really is: due to illness in infancy and surgeries and so on and so forth, there is something happening between his ear and his brain, so that, while his hearing is technically ok, his brain cannot process what he's hearing into anything intelligible. as you can imagine, this is stressful for mom. please pray for this family. thanks so much! :)
Tuesday, June 24, 2008
so that was today. and yesterday, he climbed all the way up the stairs by himself. first try. all the way up. mind you, he had to stop three or four times to rest along the way, but not once did he make a mistake up those stairs. i'm so proud. and yet, strangely, i'm so afraid. and, in case you were wondering, no, the IV pole does not make it up the stairs with him. yeah. but, it's a milestone, and a normal one, at that! so, i guess i'll take it. lol
so, that's that for tonight. talk to you later! :)
Sunday, June 22, 2008
what am i going to do with these boys of mine? they are absolute best friends. and contrary to what you might expect, bram will do whatever asher wants, and asher will end up getting bram into a lot of trouble in the years to come. not that bram will mind, of course. he's a total push-over when it comes to his little brother. which leads to the story of this video...
they were playing tank engines (they're both obsessed with thomas), and then somehow, for some reason, asher pushed bram over - literally, knocked him down onto the floor! - climbed on top of him, and began to tickle his big brother. and the more bram laughed, the more asher tickled. that's how they are, all the time. asher's the clown, and bram is the all-too-willing audience, which then, in turn, encourages asher to continue his antics until bram is well nigh peeing himself!
pray for us. lol
ps - forgive the quality of the film. mom and i were both having a hard time figuring out how to use the video feature on her camera, but at least you get the idea. truly, this is what they're like all the time, these boys of mine.
Saturday, June 21, 2008
Friday, June 20, 2008
tube came out. we're going to the hospital at 4:00 to get it replaced... again.
seriously, when is he going to get the idea that eating by mouth is infinitely better than tube feeds? is anyone else sick of all this, or is it just me?
i'll keep you posted.
ps - please pray for a couple of heart kids:
Dominic (HRHS): had his Fontan on Tuesday, and he's doing really well. he's already up on 4D! go dominic go! he's in a lot of pain, and his sats are still low, so as of yesterday he was getting lots of pain meds and has those pesky nasal prongs (which he hates - don't they all). so keep sending prayers and good vibes and whatever else you do.
Owen (transplant): in hospital right now with possible sepsis. at the moment, they're still waiting for the blood culture results. remember sepsis? yeah, it sucks, and can do a lot of nasty things. those buggies like to play on stents, shunts, grafts, you know, really whatever's in there, especially if it isn't there in a healthy heart. and, blood goes everywhere, which means it's carrying this infection everywhere. that's not so good. owen is likely immunocompromised due to the transplant, so his body isn't very good at fighting off infections. please pray for him, that the culture will be negative (asher's cultures have come back negative several times, and he looked really bad, so it can happen, my friends!). also, tomorrow is owen's 2nd birthday, and he'll be in hospital. he already spent his 1st b-day in hospital, so this is a rather discouraging, especially for the family. so please pray for them, too.
Tuesday, June 17, 2008
- BP: 112/76
- sats: 74%
- HR: 125 beats/min.
- RR: 30-ish breaths/min
- increased cyanosis ("he's blue!")
- puffy in eyes, hands, feet
- cold hands
- increased work of breathing (indrawing; nostrils flaring slightly)
there you have it: his symptoms. so, she called liz, and sent us to emerg.
when we got there, they already knew about him, and they knew it was a "direct to cardiology" visit (means, no emerg consult; they triage and register us, but we don't see emerg doc first, just cardio). but, before i continue, let me describe asher upon arrival in triage:
- BP: 105/60
- sats: 85%
- not so puffy
- breathing comfortably
the bug! anyway, the echo was fine (read: unchanged). chest x-ray was no different than post-op. the bloodwork and urine sample were "pristine" (to quote the nurse). the only thing we're waiting on now is the blood culture, but that takes a couple days to grow, so we'll know by thursday night if his blood is infected (yeah, because what we really need right now is sepsis!)
we saw dr p this afternoon, and he was joking that of course asher looked better at the hospital, because he's asher peters! haha, very funny. i said to him that we both should have known it wouldn't be so simple as "thanks for everything, goodbye!" of course asher would need another crack at him before he's gone (dr buffo already left last week). but you know, this is life with asher. unpredictable and exhausting and yeah, what else can i say? (well, actually i do have more to say about my side of all of this. i'll be posting on my blooming blog in a bit, so you can check that out to find out how my own appointment went this morning.) ttys! :) h
Monday, June 16, 2008
liz said to keep an eye on him, but i don't need to rush him to emerg just yet. "he's so hard to predict," she said. she said, i could bring him in now, but he'd likely be fine, or i could leave him, but then i'd be bringing him in at 4am! what to do, what to do? well, after she yelled at the driver behind her, she told me to keep an eye on him, and see what he does. if he starts getting puffy (did i forget to mention that he's slightly puffier, too?) and/or more short of breath, i'm to bring him in to emerg.
hmm... asher's not feeling well today... i wonder which doctor is on call this week? lol i'll keep you posted (about asher, that is. well, if we go in and see a cardiologist, i'll let you know who it was. but mostly, i'll just post about whether or not i take him in tonight).
Monday, June 9, 2008
[after some technical difficulties, we're back to sideways asher. sorry, folks, i don't know what went wrong, but i'll try again in the morning. in the meantime, get yourself some advil and enjoy my boy!]
i know i promised to upload this video a couple days ago, but you know, between the sedatives and power outages, i didn't have a chance. until now, my friends!
a friend generously gave us a pool for the kiddies to play in, and asher was pretty ticked off when blithe and bram were allowed in and not him. so, we stopped filling it for a few minutes and threw him in. ok, well, we didn't really throw him in, but he went in in his onesie and cloth diaper. and let me tell you, he was none too impressed when we took him out!
so, enjoy the video. asher sure enjoyed making it! :)
Sunday, June 8, 2008
apparently, there is a very unstable weather mass that is passing over this region, and causing scattered thunderstorms and such. right now, in fact, there is a severe thunderstorm warning and even a tornado watch!
we already had quite a storm this evening; it got really dark really fast, and then the wind and rain came in. and the thunder and lightning was almost constant! but you know, almost as quickly as it came, it stopped.
it was quite a storm, though, while it lasted. the power was out for about an hour. i was so happy the generator was charged! even though we didn't need it, it was comforting knowing i would still be able to feed my child! the older kids, especially blithe, were frightened, but we prayed and then we had some fun eating watermelon and reading some stories. asher thought the whole thing was fun, and was especially taken with the candle we had (it got really dark in here!), but he was not impressed that we refused to give it to him. he does not like not getting his way, i tell you what! lol
ah, well. anyway, the storm has passed, the power is back on, and the kiddies are off to bed. thanks for popping in! :)
Saturday, June 7, 2008
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! :)
anyway, i'm going to shower, then we're off to go garage saling. have a great day! :)
Friday, June 6, 2008
anyway... the final errand was in cardiology. and apparently, yale and tanna were there this morning and we missed them. :( sorry i missed you, tanna, it would have been nice to see you again. ah, well, i have a theory that, given how "punky" these boys of ours like to be, we'll see each other soon enough. in the meantime, we should try to get together something. facebook me, and we can try to arrange something. :) now, back to my tale o' the day...
i had said goodbye to the docs on monday already, but it felt incomplete, because i hadn't had the chance to give them anything, and i had really wanted to give them each something, a little token of my thanks for all their work, care and yes, in a way, friendship, over the last 18 months. i talked to dr p first this morning; he came out and hugged me and we must have talked for, oh, about 10 or 15 minutes. mom lost count of the number of hugs. i'm really going to miss him; he's such a sweetheart. did you know, he still has the letter i wrote him back in december? (check asher's old blog if you'd like to read it for yourself.) he has kept it, and in fact, he says that it helped him grow as a person and a doctor. how touching is that?! he told me that he and buffo were talking about me just this morning. it seems there was a child in clinic whose condition is not severe ("not nearly like asher's"), but who still needs to be followed for a couple years (i'm assuming a hole that is closing nicely on its own, but they still need to watch it right now). anyway, dad must have been a busy guy, because he did not appreciate having to wait 20 minutes to see the docs, they should see him right now, and he was demanding to see them right away. and you know what they docs said to each other? they remembered all those times that asher was brought up from emerge for an echo, and there he was, with difficulty breathing, sats in the 60s, and colour was bluer than blue, and there we sat, waiting patiently, not complaining, but just waiting our turn. now, i'd like you all to pay attention to that, to how they remember me: for my patience. and yes, they were talking about me, so you can pick your jaw up off the floor now. lol so that was my chat with pepy.
then, dr buffo came back from the unit, and pepy must have told him that i had something for him. he came out and the first thing he said to me was, "i don't deserve this, you shouldn't have done this." i said, "are you kidding me?! how many times have you saved asher's life?! you deserve this!" now, let me explain a little bit about this man: very, very humble, and just under the surface, he's a teddy bear. and i mean, he truly does not believe that he deserves a gift, he really doesn't see himself that way. so, he was completely thrown that i would want to give him something, and honestly, you could tell he was trying hard not to cry. he's such a sweetie. and another thing you need to understand about him: he is really not into big emotional displays. i mean, when he bought me a coffee on monday, that was his way of saying good-bye. nothing big, no words, just coffee. but that's the way he is.
me, on the other hand, i needed to let both of them know how much i truly love and appreciate them. so, here's what i made for them. (for those non-paper-crafty types out there, these are "skinnys," a 3"x5" piece of art. the verse is one i have clung to for a long time with asher, and i have always wanted to share it with the docs, and have never had the chance.) so here we go:
Monday, June 2, 2008
liz wants us to come back in august for another check-up. i guess the days of 3 months between appointments are behind us. i'm sure we'll have that again at some point, but for now, with asher's cardiac health as fragile as it is (in case you weren't aware, that narrow aortic arch thing, yeah, it could cause him to go into congestive heart failure at a moment's notice. it's kind of a problem, you know, mui poco). but liz reminded me to call her if i need to, and that there will always be a doctor there. (don't get too excited... they're not staying... toronto docs are going to be filling in until the new docs start in the fall.)
did you like the spanish back there (or the attempt at it, anyway)? that's my little tribute to dr buffo (he's mexican). we saw him today, and i didn't really get to talk to him too much, except for a couple little exchanges that are horrifyingly comforting, horrifyingly sad, and horrifyingly horrifying at the same time. here's the tale.
bram wanted to come along today, because he's in love with liz. honestly, she's his favourite grown-up, other than me (no, seriously, that's what he says! how sweet is that, eh?). so, i was in the waiting room with the boys, asher was playing with a truck on the floor and bram was playing with a train on the thomas table (i think that might be another big reason he likes to come to car-ology, as he calls it). liz walked past, said hi to asher and me (by name, no less - liz is awesome), and then stopped and actually chatted with bram for a minute (also greeted him by name - i'm telling ya, she's awesome!). another mother in the waiting room was watching us and kind of gave me a weird look after liz left, and i just said to her, "we're here a lot."
then later, after the ecg and echo, we were again in the waiting room, waiting to see liz. dr buffo came out, and was taking coffee orders from everyone who works there. then he came up to me and asked if i wanted a coffee. (ok, i know what you're thinking right now. but heather, you gave up coffee! i hope you declined graciously. well, to you i say: if you think i'm going to turn down a free coffee from a doc, you've never met me!). i said, "oh, yes, please, decaf with 2 cream." (see? it was decaf... i was good...ish). that's right, i was included in the staff coffee run. another mother looked at me funny, and i said, "really, we're here a lot." and you know, there was a nice "friend-ness" (for lack of a better term) when doc handed me that coffee. it was touching. but that was it. there was no good-bye. just coffee. probably just as well, i would have just bawled, and he already thinks i'm a lunatic. lol
dr p wanted to talk to us, too, since it's the last time we'll see him. he told me everything on the tests looked good. well, maybe not good, per se, but unchanged, which is as good as it gets right now. then we said our goodbyes. oh, i almost cried, i had a tear, folks! i just love that man so much, you know, and he's leaving. i know the new docs are excellent and i'm sure, given asher, that we'll get to know them really well, too, but still... even he was moved. he reminded me that asher's a fighter and he's strong. and i told him that we have family and friends in manitoba, so we just might see him again at some point. he was adamant that asher and i should pop in for a visit when we're out there. who knows... maybe we will...
i want to make a couple gifts for the docs, and i'll have to take them in one day. i can't even tell you how much i'm going to miss them. they're great people, and we've been through so much together, not all good, but not all bad, either. we've laughed, we've cried (that's right, i've seen dr b on the verge of tears more than once), and everything in between. they've seen me at my worst (but thankfully, also at my best). and most importantly, if it weren't for those two men (and dr caldarone, and of course, God, but this is about the london docs right now), i wouldn't have a baby. they've pulled asher back from the brink so many times. i'm so grateful to and for them. i'm really going to miss them. as are so many other mothers i know...
well, that's that for today. and now i'm tired. i need to go to bed right now. it's been a long day, in so many ways. well, i'll talk to you later! :) h