WHA-?!?!

today we went for our regularly-scheduled cardio appointment in london. and all in all, it was... um... interesting. but in a good way, don't worry. {wink}

first, we went in for the pacemaker check. no problems there. awesome.

then, the ECG. which asher did himself. he got the leads, attached the stickies, and put them all on his chest, legs and arms. sure, the tech told him where to put them, but he put them on. you know you spend a lot of time in hospitals when... haha

then the fellow came in. he's working toward becoming an adult cardiologist, but to become an adult cardio, you have to do a two-month rotation in paeds because, in the words of a fellow from a couple years ago, "some of these kids grow up, and we need to be prepared for when they do." frankly, i prefer buffo's explanation: "if neither of us [paeds cardios] is available, the adult docs can come and check him out, and they'll have some idea of what they're dealing with." a much more palatable explanation, if you ask me (and yes, i'm choosing to ignore the idea of all paeds cardios being unavailable). anyway, dr chew asked a bunch of questions and listened to some of my answers, and listened to asher. and before you ask, yes, he heard the murmur, but said that it wasn't very loud, so it's not too concerning. um, ok... anyhoo...

then he went and got dr w, our cardiologist. she came in and checked asher out, and said that he looks pretty good, and since HCT is for failure, she's comfortable with dr russell's decision to stop it. i told her that dr russell had said that, if he got too puffy without it, he might be one of those kids who needs it every other day, and that since asher, having missed two doses, is now getting pretty puffy, i'm going to do the every-other-day thing. so she looked at him and said, "yes, his eyes are looking a little puffy." and she didn't argue with my dosing decision, so i'm going ahead with it.

and let's see, what else?... hmm... i was sure there was something else to report about the appointment... what was it again?... oh, yes, i remember!

ASHER DOESN'T NEED TO GO BACK FOR SIX MONTHS!!!!!!!!

this, my friends, doesn't happen in asherland... at least not in cardio province. and yet... here we are!!!!! is anyone else doing a happy dance right now, or is it just me??

so we got back in april for an ECG, echo, pacemaker check, and holter. ugh, the holter. the bane of pacer-life. i hate holters. pain in the arse, they are. but, ah well. so it goes. i do what i have to do, and hey, it's not for six more months, so really, WHO CARES?!?!?!

after the appointment, i had to rush to make it to an appointment for myself. i've been having some health issues of my own lately (nothing too major, but needs to be dealt with... blerg). so we flew back to st thomas, i dropped asher off at his dad's, and raced to my appointment. i got there a few minutes late, and then waited for the doc to arrive. once she did, she was very nice, and well, i'm heading back to her office on tuesday for an ultrasound, bloodwork results, and hopefully, a plan.

so when you're praying next time (and whenever you think about it thereafter), please thank God that asher has improved so much in just a few days. sure, the murmur is still there, but cardio isn't concerned about it, so that's wonderful! and then, when you're done with that, please pray for me. i'll admit, i'm a little freaked out right now, so please pray that i'll have peace and that doc will have some answers for me. also, please continue for my friend shawna, who is having some pretty major health issues in and of themselves, but now she has also been diagnosed with some complications with her pregnancy. please, please pray for her and the baby. it's a scary situation, so please pray for her, the docs, her husband and their children, including the one on the way. thank-you.

the update you've all been waiting for

ok, so we went to cardio in toronto today. here's the low-down:

1. the echo showed nothing wrong, other than some minor backflow through the arch (some blood flowing the wrong way through his aortic arch, so... back toward the heart instead of out to the body). but it's only minor so she's not concerned. basically, the symptoms do not appear to be caused by his heart.
2. asher now weighs in at a whopping 14.6 kg (32 lbs). this is roughly a 16% gain over his weight in may. to give you some perspective, this would be proportionally the same as if i had gained approximately 30lbs in the same period (which, thankfully, i didn't). when i mentioned the weight gain to dr russell, she was very concerned. she recognizes that he needed to gain it, and he is now nicely proportioned between height and weight, but she said that we can now back off on the uber high fat diet, and just go with "a little higher fat than normal." because this kind of weight gain over a longer period of time will not be good for his heart.
3. asher's bloodwork showed that his liver is doing well, and his protein is good, so that's a good thing. but... the results showed that he's on the dry side (which he often is). so she stopped the HCT (the diurretic) for now, adding that if he begins to get really puffy, that he probably only needs it every other day instead of daily. we will discuss that with london cardio on thursday. i already know that nephro (who put him on it originally) is comfortable with stopping it, but he left it up to cardio. so it looks like everyone is on board with that.
4. i told her about asher's newest diagnosis (epilepsy) and all the seizures he has (average of 2-3 absence seizures a day). she was very concerned about this. she asked a lot of questions about why we had consulted neuro, so i told her about the seizures with fever. she told me that, if neuro wants to medicate asher for the seizures, that they should feel free to do that.
5. since any and all cardiac issues have been ruled out, she said that asher's paediatrician should now "feel free" to investigate "general paediatric issues." so, basically, we have ruled out the heart, but other than that, she doesn't know. but it's not heart.

basically, we covered a lot of ground in just a few minutes. and given that asher and i hit the road just after 4am, it was a very long day today. i am exhausted now. asher got to nap all the way home (no, i'm not bitter or anything). but thank-you to my wonderful friend (and asher's new girlfriend) diane for having lunch with us. definitely a good end to the appointment. 

some musings here... nothing urgent about asher. just me and my faith journey. so don't feel you need to read if you don't want to. LOL

a quick heads-up before you read: please don't misunderstand me, here. i'm not out to criticize anyone's faith, i'm not trying to say that i'm right and "they" are wrong ("they," for lack of a better term). right now i'm thinking about my own faith, and merely using other people's as a foil for my own. nothing more. also, i think i ramble a bit... ok, a lot. sorry. again, don't feel that you need to read this post if you don't want to. i'm just thrashing my way through some faith-type questions. ok, you may proceed to the rest of the post now, if you so choose.

i've been reading a few other blogs lately, and i find myself wondering today...

about my faith in God...

not "do i have faith," because i do... but maybe more like... i don't know...

here's the thing:

i'm sure there are people out there, probably who read this blog, who pray that God will heal asher, that he'll have a whole heart and he'll be fine and grow up strong and healthy.

but i'm not one of those people. i asked God for that "big H" healing, and He said "no, that's not the miracle I'm going to do here." so i don't ask God to heal asher.

i've also accepted the 70% chance that asher will grow up. i live in the 70%, but i still hold that 30.

i don't see asher's complications and bouts of failure and infections and weird what-nots as being the work of satan, as some people see illness. i see them as the natural results of HLHS and a compromised immune system and mildly wonky kidneys and epilepsy. i see them as semi-expected (albeit loathesome) bumps along asher's path. and i see them as opportunities to look for God (and find Him)... which i do.

i don't know... is there something wrong with me, that i simply accept that this is the way it is? that i don't see evil forces at work when asher gets sick? and i'm being honest here. sometimes i look at others' faith and go, "why don't i believe like that?" and even, if i'm honest, "should i believe that way?"

but every time i start to think that way, i hear a still, small voice that says, "your faith is just fine. keep this faith."

maybe i'm tired right now, and that's why i'm wondering. i mean, just this morning when i posted, i asked specifically that you not pray for a miracle, but rather that asher would continue to show these symptoms tomorrow and they would find something.

again, please don't get me wrong. i want asher to be healthy. i want this to pass. i want this to never, ever happen again. i want him to grow up and be strong and not have to worry about high-fat diets, and high-iron diets (sometimes his haemoglobin is a little low), and high-protein/carb diets (he might be hypoglycemic, on top of everything else), and low-sodium diets. i want his heart - this heart, the heart he was born with - to carry him through a long life. i want this heart to stop failing. i want him to get married and have children and grandchildren and great-grandchildren. i want him to stay out of hospitals - even out of emerg - for ever, going back only for yearly check-ups. i want him to hate echoes and ECGs and BP cuffs and sat probes and stethoscopes. i want him to say, "who's dokker caldarone?" instead of "i not want to see dr russell. she boring. i want to see dokker caldarone." (believe it or not, that's a direct quote from this morning.) i want him to react and to tell me when he's dizzy, short of breath, refluxing, because i want those things to be rare anomalies in his life instead of the norm.

but i know that this isn't likely going to be the way it is. his heart will continue to give him problems. he will always have to be careful. he can't live a fully normal life. sure, he'll come close, because that's the type of person he is. but he won't be able to race motorcycles (he told me the other week that he wants to do that when he grows up). and he can't go on roller coasters, and his endurance won't be like other kids (no soccer or cross-country for him). there are days i wish i didn't know what it was like to get bad news from a doc. i wish i didn't have the number for SickKids memorized (sadly, i do, and it's in my phone just in case i get too flustered to recall it). i wish he didn't know that emerg = popsicles and stickers. i wish i didn't know what each cardio's specialty is, and that i didn't have favourite emerg docs.

and yet... this is our reality.

and i accept it. i roll with it all.

and i still maintain that it is God who set this journey for us, who "allows" these things to happen. this is how i see CHF, etc. it's like the weather. God set up these systems to function a certain way, and so they do. sure, there's crappy weather systems like hurricanes and floods and ice storms and droughts and so forth. but they're called "natural disasters" for a reason. it means that these are simply the natural way that weather works sometimes, even though they're harsh. well, it's the same with CHF, for example. asher was given a heart that is not designed to sustain life. and even with all the surgeries, it is still pretty much par for the course. when you have half a heart, you will run into trouble from time to time.

but i see God in these things. God can be and is right there, even in the middle of "natural disasters." i don't believe that God is some distant "intelligent creator" who made these things and then sits back and watches how it all plays out. i believe that God is real, present, and personal. i believe that He is active in asher's journey. i mean, really, how can i not believe that, when i know that asher should have died so many times already?? i see God everywhere along this journey, so i simply cannot brush Him off and say, "look at the crap He left us with."

but... since i believe that God is active in asher's life... i don't know... what does it say about my own faith when i don't ask God for huge miracles anymore? what does it say about me that i don't give satan credit when asher gets sick? i mean, other people seem to see the devil at work in HLHS, so... shouldn't i?

and yet, here's the thing: i am actually cool with my faith. i enjoy it; i have peace and assurance of God's presence with me when we walk through the valley of the shadow of death. and sure, it may not work for everyone, but it works for me. i know that no two people's faith are going to look the same. my faith in God has carried me through some pretty dark times, and not just with asher, either. i don't know...

maybe i should just stop reading other blogs. (right. because that's gonna happen.) or maybe i should just accept my weird faith for what it is... a lifeline, a comfort... maybe a little off of the mainstream, but it gets me through the day.

i have accepted asher's condition. and i trust God completely with my littlest man's life and "health." when God said "no" to the healing, i had one request: "You made him this way, so You sustain him this way." and so far, he has. i can (and do) give credit to the docs and surgeons and nurses and dietitians and so forth and to asher himself for getting us through CHF and sepsis and feeding issues and illnesses and surgeries... but i also know that, if it isn't God's will for asher to get through all those things, he won't.

please don't think i'm ok with the idea that my son won't grow up. i'm not. it breaks my heart every time i think about it. (so i don't think about it very often, and it's one reason why i just focus on the day we have instead of some horrible, heartbreaking, unknown future.) i want my baby to grow up, and i will fight like hell and do everything i can to make sure he does. yes, i'm aware of that 30%... but i live in the 70. that's the number i cling to. that's the number i remind myself of. when everything seems to be going wrong and my baby is dying and i'm scared out of my mind that i'll lose him, that 70% helps me to breathe one more time... and once more after that... and once more after that.

i almost wrote there, "God is in that 70%." but then i realized... that's true... but...

God is in that 30%, too.

which i guess leaves... if my math is correct (and math was never my forte)... and i think i'm right here...

0% room for satan, if God is in the whole 100%, right? is that weird? does that make sense to anyone else? am i just burying my head in the sand about the devil here? i mean, so many other people see him at work in things like failure and sepsis and CHD in general. is it strange that i don't?

i cling to two verses for this journey, and they kind of answer what i'm trying to thrash my way through here today. so i'll leave you with these verses, to ponder and enjoy as much as i do:

I praise You because i am fearfully and wonderfully made;

Your works are wonderful, i know that full well.

                            Psalm 139: 14

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

                            Jeremiah 29:11

the plan for tomorrow

the cardiology clinic at SickKids called this morning, and i now have the times for our appointment.

we have to be at bloodwork for 8am (it's usually very busy there, with a long wait, so we need to get there bright and early). after that, we're scheduled for an echo at 9. once that's done, we'll likely have an ECG and then we'll see dr russell.

all this means... asher and i will be hitting the road around 4am. (in case you're wondering why we wouldn't just stay in hamilton overnight... i'm weird. i love driving the 401 in the wee hours.)

i will update tomorrow with all the details. and yes, i'm packing a bag. just in case. last time we had one of these "emergency" appointments, we were admitted, and i believe it's because i hadn't packed anything. haha so we're warding off the "admission spirits" by coming prepared. haha (ok, i'm not actually a superstitious person. but our pattern has been that, when i don't pack anything, we get admitted. when i come prepared for a few days' stay, they send us home. every time. haha) so please pray for us, that we will travel safely, that the appointment will go smoothly, and that asher will show these symptoms. or, if you're more inclined, you can feel free to pray that asher be healed. but since i don't believe that that is the miracle God will do/is doing with asher, i will be praying that he has these symptoms tomorrow.

he actually seems to be getting worse as time goes on. he doesn't have the usual amount of energy, and hokey doodle is he ever irritable!!! (he's usually very laid back and happy, so this is a huge change and pretty difficult, stressful and heartbreaking to deal with.) he's also still puffy and pale. so please pray for us tomorrow.

and some other prayer requests:

please pray for my friend shawna. right now she is on her way to mt sinai hospital for the second day in a row with some very concerning symptoms. she has a lot of health problems at the moment, and what she's facing is terrifying. my heart is just breaking for her. so please pray for her, and for the doctors, and for her family (she has 7 children at home). things are not looking good on a number of fronts for her right now. frankly, i'm really scared for her. i'll keep you updated on her, as well.

a lovely little baby hannah, whose parents i met at SickKids in the spring. hannah has TGA and a couple other heart defects, and well, she's not doing very well at the moment. she has also been in and out of emerg over the last week or so, with some very concerning symptoms. they expect that she will need another surgery in the near future, but they're waiting for it to be absolutely urgent. it's a stressful, frustrating, freaxiating thing to have to watch your baby's health deteriorate before they operate, so please pray for rachel and nick (hannah's dad). please also pray pray pray for hannah.

i think that's about it for now.

can you believe, we actually got to see a couple DOCTORS this weekend!!

so, yesterday, asher wasn't doing so well again. after some humming and hawing (did i spell that right?) yesterday, i took him in to emerg in london.

they took us into Ambulatory Care (a rarity in asherland... lately we've been in J-bed. sometimes i think they should just put up a sign that says "asher's bed"... oh, wait, that would imply we're there all the time. so... scratch that). after going through asher's whole medical history with the med student (so it's a miracle we're home already, haha), dr helleman came over. i have to say, i really like her. first off, she loves asher. second, she's awesome. when asher comes in, she listens to my concerns, and she is very careful to investigate fully. and she's not afraid to consult cardio, if need be. (translation: she calls them every time she sees asher.)

during her assessment, she heard the murmur. it concerned her a bit, since she remembers distinctly not hearing it when she saw us in august. so she ordered a chest x-ray and ECG, both of which were "unremarkable." then she called the on-call cardiologist, who was, you may recall, dr rauch.

uh-oh, i thought. this could be weird. i hope he's cool.


turns out, he was. he told her that he wanted to see asher and do an echo today, so we were to meet him outside the clinic at noon.

cut to today. asher slept in and wasn't in the best of moods, but he was tolerable. so off we went to church. he was looking ok, and i wasn't too concerned about him, so i put him in his class, but told them what was going on and to call me if he did anything "asher-ish."

i didn't get called. phew!

after church, however, he was pretty tired. usually he's running all over the church after sunday school, because he has a great time and is so energized by the crafts and singing and playing with the other kids. today, however, he walked, following at a distance, and complaining because we were going too fast.

off we went to the hospital. (good to know: it only takes about 7 minutes to get from the church to the hospital. believe me, i was watching the clock.) we parked across the street, where parking is free. {wink} but that meant that we had to walk across the street. sigh. i should have known, asher cried and wanted to be carried the whole way. i compromised with him, and carried him in the intersections. (he's now up to 15.2 kg - 33 lbs... ish... i'm metric only with this kid, so i'm guessing at the conversion there - and i was in high heels, so there was no way i could carry him the whole way.) but wow! was he cranky!!! and puffy, actually. those eyes just aren't right. that has nothing to do with the fatigue and irritability, but it's worth noting, so there you go.

but we got into the hospital, and the kids automatically got themselves some hand sanitizer, and asher flipped out on me because he wanted to get his own without help. of course, he had trouble with that, and he got more frustrated, and then it was foamy, which he didn't like, so that was another tantrum.

we got to the clinic a couple minutes early, so the kids sat and chatted (asher complained but stopped crying, though he did snap at bram a couple times), and i pondered the interaction of hypoglycemia, heart function and seizures. sadly, i'm not even joking. i know, i'm a nerd. haha

dr rauch arrived and chatted with the kids for a couple minutes, introduced himself to all of them, and let us into the clinic. he took asher into the echo lab. asher co-operated and laid down on the bed. he wasn't thrilled, but he was calm. he wanted to help with the echo, and dr rauch joked that maybe when asher's a bit older, he can do his own echo and doc will have coffee with me. haha but the echo went well, asher was very patient, and doc explained to me everything that he was looking at. honestly, i don't remember the last time anyone ever did that, probably not since the first few post-hybrid echoes with pepy and buffo. so things look a lot different in there now.

at one point, i made some comment like, "i told dr welisch we wouldn't make it till our next appointment." and he said, "when are you here next?" "thursday," i told him. "but you're going to sick kids on tuesday, right?" "um... yes." now, here's what's interesting about that. our paeds didn't tell him that. i didn't tell him that. and i don't remember telling dr helleman about that last night. so... um... how does he know that?? my theory is that dr russell called and told him, since SickKids is much better at keeping london in the loop than london is at keeping SickKids in the loop. not that it really matters, i'm just saying...

anyway, when he was done, he told me what he thought. he couldn't see anything on the echo that could be causing all the symptoms. asher's liver seemed fine, and his urine last night showed nothing out of the ordinary (urea and creatinine were fine, no infection, and he's not leaking protein there). he also told me that sometimes fontans can leak protein through their gut. "ah, PLE," i said, "trust me, i'd be telling a cardiologist if asher had diarrhea." and since asher is pooping just fine (c'mon, you know you were wondering. haha), PLE is not a problem, either. "basically," quothe the doc, "i don't know. but we've eliminated some big things, so that's good."

so, a lot of time in the hospital to hear, "i don't know." sigh.

i'm now feeling much more relaxed going into our appointment in toronto on tuesday. even if dr russell doesn't find anything on the echo, i am confident that she will continue to investigate. she knows us both well enough by now to know that, when i say there's a problem... it means there's a problem.

the thing is... this is all so familiar. this has happened before, and london saw nothing on the echo, and dr russell saw nothing on the echo... but she believed me and admitted asher, and ended up doing a cath. and they found problems with function and pressures. nice.

but like i said, i'm feeling better about all this now. last night, i'll admit, i was pretty upset about all of this. i was scared and crying... yeah, it wasn't pretty. but i prayed some, and this afternoon, i'm feeling better. asher's not, mind you, but i am. so, at least i can help him through the next little while, and advocate effectively for him.

so there's the update for today. i'm hoping there won't be anything else to report until tuesday. talk to you later!

days like this... i wish there was no such thing as CHD

when i turned on my computer this afternoon, i saw the news on facebook.

little ewan, who was only two weeks old and was born with tetralogy of fallot, passed away last night.

if you want to check out his story, you can visit his blog. as for me, there's nothing i can say, other than...

CHD sucks.

please hug your children a little tighter tonight. asher's getting all the hugs he'll let me give him.

what a difference a pacemaker makes

saturday marked six months since asher was admitted to london's PCCU with severe bradycardia. when active (read: awake and playing a bit, since he wasn't nearly as energetic as usual), his heart rate was in the low 50s. last night was the half-anniversary of the scariest night in asher's life. his heart rate was sitting at 30, he was hands down the darkest shade of grey i'd ever seen him (only slightly lighter than charcoal - and i'm not exaggerating here at all), he was sweating like a pig so that he soaked through his bedding in just a couple minutes, and his nurse couldn't wake him up. there was a vial of atropine at his bedside and the intensivist was scared out of her mind and actually said, "this kid needs a pacemaker right now. get him out of my unit; i don't want him here." i was terrified that asher wouldn't wake up in the morning.

and it didn't improve much over the next week or so. he didn't get his little battery-pack for over a week, and that whole time, i was disintegrating emotionally. i must have cried every day. now, granted, i made some great friends, and the lunches with D were a very welcome (if surreal) distraction, but every time i looked at asher my heart broke. every. single. time.

and if i'm honest here, i have tears in my eyes as i write this post. it was probably the darkest time in asher's life. sure, the first admission, when he was diagnosed and had his hybrid... that was terrifying, too. but don't discount the beauty of shock and ignorance. when you have no idea what's going on, you don't know just how scared to be. but by now, i have some knowledge on my side. i know what it looks like when a heart is failing and shutting down. and by now, i know asher, and i know what we would have lost if his heart got the better of him.

and now, here we are, six months later. as i type this post, asher is at school, playing with his friends, playing on the computer, singing songs and learning and... well, living. i'll admit, in april, i would have told you that this likely wouldn't happen. and yet... it's happening!!!! asher is alive!!!!

so i want to take this opportunity to thank all of you, our wonderful readers, for all your prayers and thoughts and love. you have given us both so much strength and courage to get through all the horror, and the grace and joy to fully embrace the normalcy. thank-you so much. we couldn't do this without you.