wow, i don't really know what to write here today. i don't really know exactly how i'm feeling right now. tired? hungry? scared? lonely? freaxious? i don't know...
it's two days till asher's surgery. and i want to cry, but i don't think i'm scared or anything. and i don't feel particularly stressed. although i am fully aware that on tuesday, i will hand asher over to the OR staff, and i will be sitting down the hall while they do disgusting things to my baby's heart. and i will be hoping and praying that at the end of it, the surgeon will take me out into the hall and tell me that my baby is still alive. maybe right now i feel an awareness that this time wednesday i may not have a baby anymore. that might be it. and living in that awareness, i want to just hold asher close and not let him go and just hold him. hold him close to my heart and hope he knows how much i love him. because he will be going into the OR without me. i can't protect him while he's in there. i just have to walk away while he works to stay alive even when they stop his heart... while they turn on the bypass machine and inject his heart with poison and stop it so they can do what they need to do.
maybe it's harder for me this time because he's so healthy and strong right now. every other time that he has had surgery, he's been so weak, so sick. he needed surgery. it's hard for me to look at him today and know in my heart that he needs this.
and yet i do know in my heart that he needs this. sure, he is strong right now, but how long could that last without the surgery? i don't know. i have no idea. so if we do this now, he has a better chance of pulling through quicker and more easily. i've told him that he can and should take all the time he needs to recover from this. but it's hard, you know... i know a few kids who were home in a matter of days. but i know of one little boy who came home five months later with a new heart. that's hard to plan for, that whole, "how long are we going to be gone" question...
what is even harder is knowing that i can't plan. and i probably shouldn't plan. i should trust. just trust. trust God, trust Asher, trust Dr Caldarone, trust the docs and nurses and therapists... but he's my baby!! shouldn't i have a say in this? shouldn't i be able to control something, anything?? and yet i can't. i have no say. i have to let go of my baby an entrust him to other people. and let go of my baby and trust him and his strength and will to live. because he does want to live. you can tell just by looking at him. this boy of mine lives. and frankly, it would be really nice if that continues...
i've been struggling a lot this week with trust and control. i keep wanting to trust, and i do manage to let go of my need to control. but then i find myself trying to control it all again. i just... i don't know. i know i can't control any of this anyway, so shouldn't i just stop trying and trust that in the end, everything will be ok? it sounds so easy, doesn't it? trust. that's it, just trust. a cardiologist told me once, "don't try to control what isn't in your hands to control. one way or another, he has always found his way." and i remember what i shared at the EMMCO women's conference, that patience in prayer is just God asking if we trust Him, and then He waits patiently for us to say "yes." it just all sounds so easy. so why isn't it?
i want to trust that Asher will be ok. actually, no. that would be hope, not trust, and i've got that. i want to let go and be able to deal with whatever happens. i want to have peace with whatever happens, however heartbreaking it may be. i don't have to like it. it really is out of my hands right now. actually, it has always been out of my hands.
i don't know... this is hard for me. it's easy at times. it's easy to let go of it. it's harder to not take it back. and that's what i'm struggling with this week. the continuous letting go. i let go of one thing four times yesterday alone. and that was nothing compared to what i'm facing with asher...
sigh...
and what's funny is that right now, as i'm sitting here typing and watching the kids play together, i just hear those wise words... breathe in Jesus, breathe out the crap.
easier said than done? maybe. but i'm working on it. one of these days i'll get the hang of it... i hope.
Sunday, February 28, 2010
Thursday, February 25, 2010
prayer for asher
on sunday, 28 february (that's this coming sunday, for those calendar-challenged types among us), we will be gathering for prayer for asher after the last service. the service begins at 11:15, so we'll be gathering around 12:15 (give or take, but they've got the timing of these services pretty much down to a science). we're getting together at the front of the main auditorium.
the church we attend (the kids and i) is Forest City Community Church in London. it's on Bostwick Road, and it's a very big church. really, you can't miss it.
i hope you can join us. this is our last sunday there before we head to toronto for asher's surgery. and you know what they say: "where two or three are gathered..."
the church we attend (the kids and i) is Forest City Community Church in London. it's on Bostwick Road, and it's a very big church. really, you can't miss it.
i hope you can join us. this is our last sunday there before we head to toronto for asher's surgery. and you know what they say: "where two or three are gathered..."
Monday, February 22, 2010
lessons learned on pre-op day
1. if you pull out of your driveway in st thomas at 4:48am, you will pull into your beautiful parking spot near the elevators on P1 at SickKids in toronto at 6:58am. and you will be half an hour early for bloodwork.
2. if you pull into the drive-thru at timmy's at 4:53am, you are too early for a breakfast sandwich, so you have to get a bagel with cream cheese instead. ah, well, it served its purpose.
3. shoppers drug mart at sick kids does not, in fact, open at 7am.
4. asher is a little too well-known at sick kids. the clinic nurse today actually said to me, "i don't really need to teach you anything, do i? you've been through this all so many times before. if they gave out frequent flyer points here, you'd have tons!" yeah.
5. i look fantasic. LOL i saw the research nurse who followed asher during the last few months of the enalapril study back in the day. last time she saw me, i was fat, crazy/depressed, my hair was longer and blond, and now i'm none of the above. LOL
6. i heart medical research. yes, i signed asher up for two more studies, to be done in the OR prior to bypass and in the two days following surgery.
7. the surgical fellow has a great sense of humour. he liked my idea of sending asher to live with the surgeon for a week and then decide if the fontan is a good idea. more oxygen = more energy. nuff said.
8. i could have done the informed consent bit myself. stroke, heart attack, death, bleeding, chylothorax, etc... yup, i knew them all, including what causes them, and what to do about them.
9. legally, the surgical fellow has to go through the informed consent bit with me.
10. asher doesn't smoke, nor is he pregnant, but he does have heart disease. (if you've filled out the questionnaire for anaesthesia, you're laughing, i know.)
11. when the surgeon says that he'll be there at 11:30, he really means that he'll have to be paged at 4:15.
12. being low on T-cells is not the same as being immunodeficient or immunocompromised, but still needs to be treated as though it is the same. because if you're T-cell deficient, you need irradiated blood products. but if you're just low on T-cells, you're not T-cell deficient, but you still need irradiated blood products, and a follow-up with immunology. even though you're not immunodeficient, just lacking some T-cells. WHAT?!?!?!?!?!?!?!
13. i don't understand immunology. (ok, so this wasn't a new lesson i learned today, but it was most definitely reinforced for me today. CAN ANYONE EXPLAIN IMMUNO TO ME?!?!?!?!?!?!?!?! GAH!!!!!!!!!!!)
14. nothing beats a 9 cent venti chai latte. except, perhaps, an 8 cent venti chai latte.
15. and especially except a lunch of carbs, gravy, salt, deep-fried trans-fats, and hot dogs. mmm... lunch....
16. asher has more energy than anyone i know.
17. the surgeon is not keen on taking asher for a week. hmm, wonder why???
18. the word "routine" can be used to describe asher's heart stuff!!!!! can you believe it?!?! "this should just be a routine fontan." i have tears in my eyes just remembering dr c saying that.
19. asher, the ham, who lives to perform... will not perform on cue. he's been looking forward for days to telling dr c that "i not hab tube anymore" and when dr c walked in the room, asher did his "hmph" and wouldn't look at him. but he did pick his nose. asher, that is, not dr c.
20. that when you're sitting in clinic, 8 days before the final stage... nothing else matters. the realization that this is actually happening is heartbreaking, terrifying, thrilling, nauseating, and leaves you not knowing whether you want to cry or vomit. or maybe both. so who cares about all those stupid, meaningless, non-fontan questions you have. they don't matter. what matters is that in one week, you're handing over your baby to someone you've only met a handful of times, and he's going to do disgusting things to the only non-redundant organ in your baby's body, with no room for error. and you're going to sit down the hall all day and wait for the surgeon to come back early, but praying to God he takes all day. and that now, even more than ever before, the clock is ticking, time is running out... and all you want to do is hold your baby and watch him and cherish every breath and memorize everything, learn every freckle and ticklish spot, and beg God that you never forget, just in case...........
21. if you pay for parking at 4:48pm, you will turn onto the street 5 minutes later. and you will arrive in hamilton at 8:31pm.
yeah. long day. ugh.
but thanks for being there, diane. you helped more than you know. :)
2. if you pull into the drive-thru at timmy's at 4:53am, you are too early for a breakfast sandwich, so you have to get a bagel with cream cheese instead. ah, well, it served its purpose.
3. shoppers drug mart at sick kids does not, in fact, open at 7am.
4. asher is a little too well-known at sick kids. the clinic nurse today actually said to me, "i don't really need to teach you anything, do i? you've been through this all so many times before. if they gave out frequent flyer points here, you'd have tons!" yeah.
5. i look fantasic. LOL i saw the research nurse who followed asher during the last few months of the enalapril study back in the day. last time she saw me, i was fat, crazy/depressed, my hair was longer and blond, and now i'm none of the above. LOL
6. i heart medical research. yes, i signed asher up for two more studies, to be done in the OR prior to bypass and in the two days following surgery.
7. the surgical fellow has a great sense of humour. he liked my idea of sending asher to live with the surgeon for a week and then decide if the fontan is a good idea. more oxygen = more energy. nuff said.
8. i could have done the informed consent bit myself. stroke, heart attack, death, bleeding, chylothorax, etc... yup, i knew them all, including what causes them, and what to do about them.
9. legally, the surgical fellow has to go through the informed consent bit with me.
10. asher doesn't smoke, nor is he pregnant, but he does have heart disease. (if you've filled out the questionnaire for anaesthesia, you're laughing, i know.)
11. when the surgeon says that he'll be there at 11:30, he really means that he'll have to be paged at 4:15.
12. being low on T-cells is not the same as being immunodeficient or immunocompromised, but still needs to be treated as though it is the same. because if you're T-cell deficient, you need irradiated blood products. but if you're just low on T-cells, you're not T-cell deficient, but you still need irradiated blood products, and a follow-up with immunology. even though you're not immunodeficient, just lacking some T-cells. WHAT?!?!?!?!?!?!?!
13. i don't understand immunology. (ok, so this wasn't a new lesson i learned today, but it was most definitely reinforced for me today. CAN ANYONE EXPLAIN IMMUNO TO ME?!?!?!?!?!?!?!?! GAH!!!!!!!!!!!)
14. nothing beats a 9 cent venti chai latte. except, perhaps, an 8 cent venti chai latte.
15. and especially except a lunch of carbs, gravy, salt, deep-fried trans-fats, and hot dogs. mmm... lunch....
16. asher has more energy than anyone i know.
17. the surgeon is not keen on taking asher for a week. hmm, wonder why???
18. the word "routine" can be used to describe asher's heart stuff!!!!! can you believe it?!?! "this should just be a routine fontan." i have tears in my eyes just remembering dr c saying that.
19. asher, the ham, who lives to perform... will not perform on cue. he's been looking forward for days to telling dr c that "i not hab tube anymore" and when dr c walked in the room, asher did his "hmph" and wouldn't look at him. but he did pick his nose. asher, that is, not dr c.
20. that when you're sitting in clinic, 8 days before the final stage... nothing else matters. the realization that this is actually happening is heartbreaking, terrifying, thrilling, nauseating, and leaves you not knowing whether you want to cry or vomit. or maybe both. so who cares about all those stupid, meaningless, non-fontan questions you have. they don't matter. what matters is that in one week, you're handing over your baby to someone you've only met a handful of times, and he's going to do disgusting things to the only non-redundant organ in your baby's body, with no room for error. and you're going to sit down the hall all day and wait for the surgeon to come back early, but praying to God he takes all day. and that now, even more than ever before, the clock is ticking, time is running out... and all you want to do is hold your baby and watch him and cherish every breath and memorize everything, learn every freckle and ticklish spot, and beg God that you never forget, just in case...........
21. if you pay for parking at 4:48pm, you will turn onto the street 5 minutes later. and you will arrive in hamilton at 8:31pm.
yeah. long day. ugh.
but thanks for being there, diane. you helped more than you know. :)
Sunday, February 21, 2010
ok, i know this is obvious, but...........
it just hit me that this is it.
the fontan.
the surgery we've been waiting for for over three years. this is it. after this, he's done. well, done with this course of surgeries, anyway.
after that...
i don't have to wait for the axe to drop, so to speak, er, write. that's it. the fontan.
THE FONTAN!!!!!
and believe it or not, i'm excited about this. yes, freaxious (fear + dread + anxious + nauseous, for those new to the blog), but excited! asher will officially be a fontan!!!! not a glenn!!! A FONTAN!!!!!!!
i'm glad this is hitting me now, right before pre-op. takes the edge off, a bit, you know?
the fontan.
the surgery we've been waiting for for over three years. this is it. after this, he's done. well, done with this course of surgeries, anyway.
after that...
i don't have to wait for the axe to drop, so to speak, er, write. that's it. the fontan.
THE FONTAN!!!!!
and believe it or not, i'm excited about this. yes, freaxious (fear + dread + anxious + nauseous, for those new to the blog), but excited! asher will officially be a fontan!!!! not a glenn!!! A FONTAN!!!!!!!
i'm glad this is hitting me now, right before pre-op. takes the edge off, a bit, you know?
gah! it's too close! it's too close!!!!
just a quick "fyi" post today, folks.
tomorrow is pre-op clinic. asher and i have to arrive at 7:30 am (apparently there's a 7:30 in the morning now... who knew?!?!) for bloodwork. then it's a day of chest x-ray, ultrasound (on his right femoral vein, checking for clots), and meeting with the nurse, surgery nurse practitioner, anaesthesiologist, surgical fellow, and surgeon. wow, i just about threw up, there.
a week from tuesday... 9 days from now... is surgery day. the fontan. excuse me while i vomit.k, back. yeah, surgery in just over a week.
it's strange. i'm not nearly as worried about this surgery as i was about the coles, and since i'm not mourning, i'm not in the same head-space as before the glenn. but... i don't know... i was talking to someone at church this morning, and she asked how i can hand asher over to the surgeons, knowing what they're going to do. my answer? "i don't know." because i don't. she looked heartbroken just thinking about it, and yeah, it is heartbreaking. (no pun intended.) i don't know how i do it. i just do what i have to do to keep asher alive, i guess. blech.
heart parenting isn't easy, folks. it's hard. brutal, in fact. stressful, dehumanizing, crazy-making, frustrating, heartbreaking... an emotional roller coaster on a good day! on the other hand, like i wrote to dr caldarone, there are i times i forget that asher even has a zipper, and those are the best moments, because it means he's a normal kid. let me tell you, i live for those moments.
well, i said this would be a quick post, and before this gets too long, i'm gonna sign off. i'll post tuesday and let you know how clinic went.
tomorrow is pre-op clinic. asher and i have to arrive at 7:30 am (apparently there's a 7:30 in the morning now... who knew?!?!) for bloodwork. then it's a day of chest x-ray, ultrasound (on his right femoral vein, checking for clots), and meeting with the nurse, surgery nurse practitioner, anaesthesiologist, surgical fellow, and surgeon. wow, i just about threw up, there.
a week from tuesday... 9 days from now... is surgery day. the fontan. excuse me while i vomit.
it's strange. i'm not nearly as worried about this surgery as i was about the coles, and since i'm not mourning, i'm not in the same head-space as before the glenn. but... i don't know... i was talking to someone at church this morning, and she asked how i can hand asher over to the surgeons, knowing what they're going to do. my answer? "i don't know." because i don't. she looked heartbroken just thinking about it, and yeah, it is heartbreaking. (no pun intended.) i don't know how i do it. i just do what i have to do to keep asher alive, i guess. blech.
heart parenting isn't easy, folks. it's hard. brutal, in fact. stressful, dehumanizing, crazy-making, frustrating, heartbreaking... an emotional roller coaster on a good day! on the other hand, like i wrote to dr caldarone, there are i times i forget that asher even has a zipper, and those are the best moments, because it means he's a normal kid. let me tell you, i live for those moments.
well, i said this would be a quick post, and before this gets too long, i'm gonna sign off. i'll post tuesday and let you know how clinic went.
Friday, February 19, 2010
yup, it's time for the fontan...
so, yeah, asher hasn't been doing so well lately. all week, actually. he's not sick or anything... unless you count heart disease, in which case, he's one sick little boy.
i took him to see the paediatrician yesterday. all week, asher has been blue, lethargic (on wednesday, he fell asleep on the couch at 5pm and slept straight through till morning... in his bed, though), irritable, not eating as much, sweating in his sleep, puffier than usual, and his hands and feet are cold. actually, i think he's cold all over lately; he never wants to take his coat off anymore. so i took him in, and when she assessed him, she found that he's not tachypnic (breathing fast) or tachycardic (rapid heart rate), but his liver is low. and she knows, because she checked it last week when i took him in. so it has definitely lowered.
(who cares about his liver, you ask? when the liver descends, it is an indication of heart failure. the heart swells from working too hard and the influx of blood to help increase function, and this requires more room. so the liver gets pushed out of the way. it's not as low as it has been in the past, mind you, but it's working its way down, enough to be concerning.)
so, basically, the fontan is coming just in time. please pray/cross all crossables/send good vibes/whatever you do that asher remains otherwise healthy, since clearly this surgery is needed right now. if he gets sick, they will have to cancel, and that will be bad.
and it's 11 days till the fontan. click on the title of this post and scroll down till you see "The third stage of the Norwood: the Fontan operation." that tells you what you need to know, if you're curious about what is involved.
i took him to see the paediatrician yesterday. all week, asher has been blue, lethargic (on wednesday, he fell asleep on the couch at 5pm and slept straight through till morning... in his bed, though), irritable, not eating as much, sweating in his sleep, puffier than usual, and his hands and feet are cold. actually, i think he's cold all over lately; he never wants to take his coat off anymore. so i took him in, and when she assessed him, she found that he's not tachypnic (breathing fast) or tachycardic (rapid heart rate), but his liver is low. and she knows, because she checked it last week when i took him in. so it has definitely lowered.
(who cares about his liver, you ask? when the liver descends, it is an indication of heart failure. the heart swells from working too hard and the influx of blood to help increase function, and this requires more room. so the liver gets pushed out of the way. it's not as low as it has been in the past, mind you, but it's working its way down, enough to be concerning.)
so, basically, the fontan is coming just in time. please pray/cross all crossables/send good vibes/whatever you do that asher remains otherwise healthy, since clearly this surgery is needed right now. if he gets sick, they will have to cancel, and that will be bad.
and it's 11 days till the fontan. click on the title of this post and scroll down till you see "The third stage of the Norwood: the Fontan operation." that tells you what you need to know, if you're curious about what is involved.
Wednesday, February 17, 2010
yet another specialty for me to learn about... (because we all know i will!)
http://www.childrensdiscovery.org/content/chdc/featuredarticles.htm?page_id=51&inCtx13news=2&site_id=1&inCtx13view=2&inCtx13news_id=1&minor=0&major=1&inCtx13pg=0
when asher was first diagnosed, his glucose was waaaaaaaaay off. i figured (as did the STEGH docs) that it was due to dehydration (from vomiting and refusing to nurse all night). but now this has me thinking... and digging through my medical dictionary... and wondering if i can call the doc i know who specializes in paeds diabetes (and immuno. yeah, same doc, lotsa specialties. my kind of doc! lol). i'm thinking i need to learn more now...
if you have any books on endocrine stuff that i could borrow while in toronto, please let me know. i'm not joking (though i am laughing at myself as i type this).
when asher was first diagnosed, his glucose was waaaaaaaaay off. i figured (as did the STEGH docs) that it was due to dehydration (from vomiting and refusing to nurse all night). but now this has me thinking... and digging through my medical dictionary... and wondering if i can call the doc i know who specializes in paeds diabetes (and immuno. yeah, same doc, lotsa specialties. my kind of doc! lol). i'm thinking i need to learn more now...
if you have any books on endocrine stuff that i could borrow while in toronto, please let me know. i'm not joking (though i am laughing at myself as i type this).
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