just gettin' you caught up a bit... not much to report (so why is this post so long? why can't i shut up? i mean, really, nothing has happened this we

wow, i've really been slacking off lately with these blogs. sorry about that. i'll try to get you all caught up, and yet still be brief. don't worry, not much has happened, so it shouldn't be a very long post.

asher's been doing pretty well lately. he was pretty grey and cranky over the weekend, which had me a bit concerned, but, wanting to avoid dr buffo in emerge (lol), i decided to wait and see what happened. well, he (asher, that is, not dr buffo) cut a molar on sunday night. good thing we didn't go in to london for that! lol i can just imagine, they call cardio down b/c asher's grey and irritable, and doc comes down and says, "what's that bump in his mouth? looks like a molar." can you just imagine?! lol anyway, since then asher has been much happier and pinker. so that's good.

he has also started cruising on furniture. he's been pulling himself up to standing for a while now, but this past weekend we noticed that he'd be playing at one end of the coffee table, and then a minute later, he'd be at the other end, still playing. he's been doing it all over the place lately. he's getting closer to walking every day! pray for us.

we've been taking him outside quite a bit lately, too. on saturday, on our walk to a nearby park, blithe and bram were running around, and asher wanted to get in on the action, too. he was actually quite vocal (read: shrill) about this. so, i got him out of the stroller and put him on the ground. it was his first time on the grass (compromised immune system = no dirty grass). he didn't quite know what to make of it for the first couple minutes, but we showed him that it was ok, and he was off and running - er, scooting - in no time. he was having so much fun, but after a couple minutes he was really out of breath and starting to turn blue, so i had to put him back in the stroller. he was not impressed. in fact, when, despite his protests (read: screams) i didn't put him back on the ground, he refused to look at me. i'm a bad mommy, i know. lol and when i tried to tell him, "but asher, you can't breathe, you need to rest," he kicked me and pushed me away, still not looking at me. (don't worry, i didn't let him get away with that. i made him say sorry, which he can now sign. that's right, folks, he can also sign a bit.)

ok, so, asher has a molar and a temper. anything else? we've been getting respite every day now, and it's wonderful. i can get stuff done (i have a ton of errands to run this afternoon) and i don't need to worry about dragging him and his pump around. these breaks, a couple hours a day, have also helped me quite a bit, and i am slowly but surely recovering from my anxiety. of course, now i'm heading down emotionally, so the respite is going to help me then, too, so i don't want it to stop anytime soon.

speaking of errands... perhaps some of you know this, but i'm not sure if all of you do. the other week, while we were in toronto, it was Emergency Preparedness Week. basically, make sure you're ready in case of a black-out or natural disaster or whatever. one thing we had not thought of was asher's pump. but there was a bill posted at HSC, saying that if your child (or anyone in your home) is dependent upon technology (eg., feeding pumps, IVs, etc), to make arrangements with your energy provider so that you will be a priority and get your power back on first. so, that's what i'm taking care of this afternoon. i have the note from paeds doc, and hydro is one of my stops this afternoon.

ok, that's it. i'm done. sorry i hadn't posted in a while. i hadn't really noticed, either, until a friend emailed me and said, "you haven't posted in a while, and i'm getting worried. hope asher's ok." so, yes, keri, he's good, we're all doing well (my BP is now back down to my usual low, and not high anymore... maybe i'm getting some of asher's enalapril by osmosis or something. lol) so, yeah, that's it for today. why is this post so long? i don't know. i tried twittering to see if i could get used to writing less, but i just can't do it. i talk. and i write. ah, well, maybe one day i'll master précis writing. a girl (and her readers) can dream, right? :)

oops, my bad! :( this is going to be a long post - sorry

ok, so i just realized that i forgot to post about post-op clinic on friday. my bad. i'm so exhausted lately; i think i looked at the blog several times that day thinking, "i know i need to write something, but what?" yeah, i'm tired. anyway, here's the low-down on the post-op marathon.

first off, we did clinic in LONDON! woohoo! before they discharged us last week, i was afraid that they'd make us go to toronto for clinic, but nope! how much do i like dr benson? he's quirky, and i like him. :) anyway...

so, we get to clinic in london... late... as usual. (you know, when we go to toronto, we're always either on time or early. never late. we're often late in london, and always late for the paediatrician here in st thomas. it's like the closer the appt, the later i am. hmmm...) anyway, we got there, and i actually had a fun time, in some ways. i got to chat for a bit with kelly the secretary, who is no longer the secretary (friday was her last day), but we chatted for a while. then dr buffo saw us in the waiting room, and he came out to chat. after he asked how asher did with the surgery and all the details from that (including his little, "you know they'll have to take the rest out at some point, it can't stay there, you know" and my little "yes, i know" ugh, this is what our conversations are like every time we see each other. i complain, but i'll miss him), then we started chatting about the effects this life has on behavious in these kids, and how you can't really trust studies about that sort of thing, because of all the variables (that was actually an amusing conversation; i think he has the wrong idea about me, although i can totally understand why he thinks that). but i know longer think he thinks i'm an idiot, since he commented that asher's doing really well, and that the parents' IQ plays a large role in the child's well-being (as terrible as that sounds, it's usually true). then he told me that he hopes he won't see us in emerg before he leaves. he offered to give me his schedule so i'll know when he's on call. ha ha, very funny! although, it would be helpful. lol

then, off to echo. judy the tech was very impressed about the article dr caldarone sent me about the new technique he used to reconstruct asher's arch, and she made a copy for herself. (i read the article during the echo. it was fascinating. needless to say, i'm very interested in all that, given the issues asher's having with his arch right now: too much scar tissue, and it's getting really narrow - stenotic - in there, and the pressure's really high, which is not good. needs to be dealt with before the fontan.) anyway... echo was fine, but it was weird not to be blinded by the glare off the stent! at one point, i asked judy what she was looking at, and she said, "the left atrium." i didn't even recognize it! how bizarre! then the ECG... that was fine, too. so nothing exciting to report there.

then off to bloodwork and x-ray. they needed to check his heparin level, make sure it's therapeutic (blood clots in the atrium are bad: they lead to strokes and heart attacks and all kinds of nasty stuff). basically, this was the part of the day when we wandered the hospital for an hour or so, and asher cried a lot. oh, the joys of clinic.

then we came back, chatted some more in the waiting room with dr buffo, who swears his son will never get into thomas (asher was playing with tank engines on the floor) because it's too expensive (said the cardiologist) and then he crowned me cheapest person ever. he put up a valiant fight, but his mexican-ness just can't beat "scottish-mexican mennonite." lol so he conceded, and i told him that yes, the wooden thomases are ridiculously expensive, but the metal ones are much cheaper and just as fun. that's right, this is how often we're there, that we can just stand around and chat and joke like this. i'm going to miss it. maybe i'll make a trip out to winnipeg at some point. lol

then in to see liz. asher's sats were, well, i don't want to say beautiful, but 82% is higher than it's been in months! they were all impressed that he's (finally) so pink; it's a delightful change from pale/blue/grey. but they're not impressed by his blood pressures. the top numbers (systolics) were 133 and 122 in his right arm and left leg. in case you're wondering, that's way too high. the 133... yeah, that's about where mine is, and i'm an extremely stressed out adult! and they changed his captopril to enalapril, which does the same thing, but is only twice a day, not 3 times, so that's better for us. we like sleep, and so does he. so, thank-you, dr p, we like enalapril much better. liz wants to see us again next week for a BP check, and then at the beginning of june for echo and x-ray, making sure there's no clots before coming off enoxaparin. so, we'll get to see the docs at least a couple more times before they leave. that gives me some time to come up with something to give them. yikes! nothing like a little pressure, eh?

by the time we got home, it was almost 3:00, and we were late for respite. but, the nurse stayed, and i napped. asher played. then, when i came downstairs at 4:30, his tube was clogged. and i mean clogged! so much so, the only thing that would fix it, was to replace it. so back to london we traipsed. see, when we were in toronto, and asher was fluid restricted (due to puffiness), they weren't giving him his usual laxative, which is diluted in water. they gave him another one, which is, essentially, syrup, only thicker. and when i mentioned to them (in london) that asher had been refluxing and actually vomitted formula while we were in toronto, they said, "well, that's suspicious, isn't it?" the theory is that the tube got bumped or something during the surgery, and no one did anything about it in toronto. and why would they, really? it's not like he needs the tube to stay alive or anything. oh, no, wait a minute... that tube feeds him, so it is colossally important. but it's not a heart, so they don't care. (you think i'm joking, but ask any heart parent who's had to deal with toronto cardio. that's their attitude. truly. nice, eh?)

so, a marathon in cardiology, a new tube. 2 trips to london, and a nap. that was friday. hopefully, we won't have many more "daze" like that any time soon. sorry it took so long to post about all this. and so, to make up for it, a picture of asher, taken while i wrote all this. have a great day! :)

"What is a CHD?" by: Anissa Speight

You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked....."What's a CHD?"

I could quote terminology...
There are stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, aspirin, Captopril. ...
It's wondering... Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths, x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his pediatrician. ..
(She knows me by name...I'm a mom on a mission)
It's winter's homebound... and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over... (I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected....
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I' ve stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...We'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD.

my reply to a friend, a fellow HLHS-mom

logic never helps. forget logic. it sucks. HLHS sucks. all of it sucks. it's ok to feel that way. and you know what? i think it's good to prepare ourselves for the worst. quite often, even now after this surgery, i often find it hard to enjoy asher and love him the way i love the other two. i'll admit, sometimes i downright resent him (though i'd deny that if you ever told anyone!). i love him so much, but i'm just tired. it's this life. this is what it does to you. we have to live in constant fear and dread and anxiety and nausea. yup, a freaxious lifestyle, this heart parenting. i have hope, and i cling to that hope, but it's hard. so it's ok to be scared. that's part of this life. if you weren't scared, you wouldn't care. you're scared because you love your baby. i wish i had some words of wisdom for you tonight, i really do. but i don't. my only relief came when dr caldarone told me asher was alive at the end of the glenn, and once we made it up to 4D after the glenn. even now, i'm consumed by anxiety most days, and i've needed so much more help than i have ever wanted in my life. (i'm far too independent and stubborn for my own good). i guess the only thing we have to help us through is each other, other heart parents who know what it's like. unfortunately, most of the other parents i've talked to, they don't fully understand, because their kids aren't as severe as asher, and don't have nearly as many other issues as he has. and they don't know what it's like to have actually friendships with emerg nurses and inside jokes with cardiologists - they just aren't there that often!
i am usually really positive, too. a long time ago, i think asher was a couple months old, i came across a quote, and i like it. "Oughtn't we to be prepared for the best, too? it's just as likely to happen as the worst." (LM Montgomery). it's a good thought, although it doesn't always help. not when you're choosing charities ahead of time for people to give to in the event that....
i think the worst part of all of this for me was that i gave up so much that i believed in. my other 2 were both still nursing when asher was born. i haven't been able to nurse him since he was 3 weeks old, and even then it was a struggle. i had to give that up b/c he needed more calories, and i just couldn't pump. It turned him into a project, and i wanted a baby instead. i've given up everything about attachment parenting - he doesn't sleep with us, he hates the sling (reflux, tube-feeds, etc), i have no more boundaries. I’ve lost myself in a sea of meds and doctors and tests and hospitals and formula. I’ve lost myself in pools of antibacterial everything, due to his stupid crappy immune system. I’ve lost myself in a pile of frozen dinners and convenience foods, because i have no time to cook because of so many appointments, and no energy to cook on our days off. I have overcompensated with my other kids, buying them way too many toys and plunking them in front of the TV for too many hours. I’ve isolated myself, and not always voluntarily. Hospitals are lonely and dehumanizing, and i spend most of my time there. I’ve had to give up too much that i love, and in return i’ve gotten too much that i hate and resent.
I have nothing for you tonight except this: you’re not alone. I’ve been right where you are right now. i’m going through it again, on some levels. And i’ll leave us both with this:
Lord God, look at us. We’re scared, and we’re tired. Help us. Give us rest. And help us find it in ourselves, or in You, to enjoy these babies we have, for as long as we have them. And let us have them for a very long time, because it’s too hard to think about losing them. Amen.

the week in review

i'll have another post tomorrow, after post-op clinic (in london), so i thought i'd post tonight, too, and get you caught up on the rest of our week at home.

we got home late monday evening, tired but elated to be home. it was wonderful! i got to sleep in my own bed for the first time in a week. and as nice as the beds are at the Delta, my bed is better. :)

tuesday was exhausting. it's been so long since an admission, let alone a surgery, that i guess i'd forgotten just how tiring admissions actually are, and that it takes me a couple "daze" to recover. so, yeah, i got nothing accomplished on tuesday. but i had a visit from a good friend, asher's "aunt tiena" (who attended his birth way back when!), so that was lovely. hospital admissions are pretty dehumanizing; you're torn away from everything that's yours, and stuck in a building where the windows don't open, but you don't want to leave, especially once you're in parent care. and CCCU. and step-down. ok, really, you don't want to leave. you're alone and tired and the bed sucks, but you stay because there's no where else you'd rather be. anyway, a visit from a friend. that's what i accomplished. and i bought some music and a book online. that was my day. oh, and racing around to get his prescriptions filled. wow! what a rambling paragraph. i'll try to do better.

yesterday (that would be wednesday), we had a somewhat busier day. we got some grocery shopping done, which was good, because we had almost no food in the house. not even bread or milk. we also had a quick trip to the paediatrician in the afternoon. that wasn't so fun. here's the details:

well, we have to have a post-op assessment with the paeds doc anyway, but yesterday, we noticed that the bottom 1/2-inch of asher's incision was opening up. not good. so she had a look at it, and said that if it got oozy i'd have to take him to emerg (it's getting there, but we go to london tomorrow, so i am not making 2 trips in 12 hours, thank-you very much!) so i'll get liz to take a look at it while we're there. the other issue i discussed with her is that asher's back to refluxing quite a bit. i told her that i really don't want to go the fundoplication route now, since asher has recently figured out how to swallow. but she said that she has talked with dr h (gastro doc), and he said there are options before the fundo, like maybe putting in a G-tube (in addition to the GJ), but the G would just act as a drain, removing the extra stomach juices as they develop, so that there's really nothing he can reflux. we'll be seeing him soon, i think. other than all that, she was very happy with how he looks, he's happy and pink and warm. and she was happy with his lung sounds, or rather, the lack thereof! he sounds much clearer now that all that blood isn't backing up into his right lung (thank-you, dr caldarone!)

we also had respite last night. and i had a break-down last night. yup, another one. we came home, and i had to give him his Enox injection. as soon as he sees the needle, he starts to cry, because he knows. that's really upsetting. and after i'd done it, as i was talking with the nurse, i just burst into tears. i'm so tired, so overwhelmed, so afraid and anxious, so drained, so beyond myself anymore. a lot of times i feel like the only thing i can do is cry. so, we talked, and i asked for more respite. (that's right, folks, i asked for help! i was more shocked than you, believe me! but i did it. you proud? lol) i just can't keep going like this. well, we came up with a plan, and we're getting it started as much as possible tomorrow. beyond that, it'll all start in full-force next week. a couple meetings need to happen, and some co-ordination through CCAC, but we're getting more help. i talked with our case manager today, and she's working on it now, and she's going to come over on tuesday and discuss things like Enhanced Respite, which is funding to help us with some more respite and help, and we're going to be getting a social worker, and i think there's a couple other things, too. i don't know. it all happened so fast this afternoon, i don't think i wrote everything down. but there you go. we're getting some more help.

meanwhile, asher continues to do recover nicely. he's having some trouble sleeping at night, though. this is probably because he moves a lot in his sleep, and his ribs and muscles don't like that. but he's really enjoying sitting in his stroller. i think he knows it's the easiest seat to get him out of right now, so it's his little way of helping right now. he's a wise one, that boy of mine. :)

ok, i think that's about it. i'm tired, asher's sore, the rest of us are coping as best we can, and we're getting some help. that's about all i got for tonight. i'll post again tomorrow after clinic and let you know how that went. talk to you later! :) h

WE'RE COMING HOME!!!!!!!!!!!!!!!

that's right, folks, our little man is coming home this afternoon. all the drains, tubes and lines have been pulled (that happened saturday), his blood pressure has started climbing again, but that can be monitored at home, and his reflux is acting up again, but that can also be managed at home. they're typing up the discharge papers now and arranging for post-op follow-up in london for later this week. so, yeah, we're on our way!

asher's sitting with me in the resource centre as i type this - he's been off the monitors since yesterday morning, so he can freely roam the hospital. i'm so proud of him. i never expected him to recover this quickly - or this smoothly! what a HUGE answer to prayer!!!! yay! :)

so, we're on our way home, and some other good news, Yale went home yesterday! happy mother's day, tanna! :) maybe we'll see you in clinic soon! :)

maybe later tonight i'll post a longer update from home, with more details. or maybe i'll just sleep. don't know. but i'll keep you posted. :) h

well, it can't all be easy... but i really wish it could :(

ok, it's friday, ed has just left, and i'm downstairs blogging so asher can rest. he's not having a very good morning. he's a little puffy still, and he's not peeing very well, so they're going to work on getting him a diurretic that will help him. you know, it's not like he's on one at home and they could just continue that. oh, wait a minute... he IS on a diurretic at home! but i suppose that would be too easy, just continuing with a med that has been working for him for over a month. besides, london prescribed, and what do they know? clearly, toronto knows so much better than nephrology in london. ARG!!!! this is why i hate dealing with 2 hospitals, both with ego issues! nephro gave specific instructions for asher to be kept on HCT because of the calcium issues, and what does toronto do? "oh, that's sweet, they want to help!" needless to say, asher has not been getting HCT, but has instead been getting some other med that, oh! surprise, surprise, isn't working!

let's see, what else? ah, yes. he's constipated. because you know, it's not like he has a gastroenterologist who has prescribed a laxative to be taken every day. but - hold on a minute - no, i'm pretty sure... yup! he is on a laxative at home, too! WHAT IS WRONG WITH THIS HOSPITAL????!!!!!!!!!!!! so, asher is extremely uncomfortable from the back-up and the cramps, and whenever he tries to push it hurts his chest so he stops pushing. and he's so cranky, crying and flailing and not knowing what he wants or how to get comfortable. honestly, he reaches for me, and then pushes me away, and then he points at something, but you give it to him and he flips out! this went on for almost an hour this morning. my poor little guy. he's just in so much pain, and he's so tired, and he's not used to this hospital anymore, and he just doesn't know what to do. :(

he's also in quite a lot of pain, and they have no stopped the mega-painkiller and now he's getting tylenol and codeine. the codeine seemed to help, as he's resting now. tylenol, yeah, it does nothing. hopefully he can rest a lot today again. he got so much sleep yesterday. but he's really uncomfortable, so it's hard for him. :(

on the plus side.... the surgery and intubation (breathing tubes/ventilator) doesn't seem to have bothered his swallowing. last night and this morning he's been really thirsty, so we've been putting water on some spongy toothette things, and he's been sucking - and swallowing! - the water right out! he's not gagging or coughing, or turning blue or anything! i'm thinking of getting him a sippy cup, maybe over the weekend or early next week, once his fluid situation is under control, and seeing if he can take some formula that way. i don't think he'd have too much trouble with it, really. he's swallowing water without trouble, and that's the thinnest liquid i could give him, so something thicker like formula shouldn't be too much trouble.

and the best part... ok, so, asher's in step-down right now. when we came up yesterday morning, we had the room to ourselves. but not for long, because shortly thereafter they brought up another little guy. and guess who it is? YALE!!!! so, hey there, tanna and yale! it's nice to finally meet you! well, yale's doing really well, they hope to go home in a couple days. he's really progressing with his feeds, which hadn't been going so well in the last couple months. but i think the plan is to try to take his tube out and try just feeding him orally, and see how that goes. GO YALE GO!!!!!

we also had a lovely dinner last night with our friends from heritage, scott and kathryn, and their 2 adorable children, Anna and Joseph. it was nice to get out of the hospital for once, and to spend time with people who aren't wearing scrubs. it was a nice break. so, thanks, scott and kathryn, for the lovely time and delicious dinner.

so that's about it for today. i don't think i'll be able to post over the weekend - i think the resource centre is closed on saturday and sunday. but i'll try to post early on monday, and get you caught up. so, have a great weekend (i know i will - mom's bringing blithe and bram up tomorrow).