Tuesday, May 4, 2010

for deirdre, in hopes that you'll read this before wednesday...

what timing. i mean, really, what ridiculous, back-stabbing timing asher has...

i was looking forward to seeing you on wednesday. now that the fontan and the bradycardia are behind us, i was going to regale you with tales of normalcy. not our "creeping normalcy," but actual, honest-to-goodness normalcy. i've lost the extra pounds i put on in the hospital, and i've started working out again, and physically, i feel great. sure, i'm still exhausted, but that's ok. i can nap with asher in the afternoons, and i can go to bed with the kids now, because asher doesn't get meds at midnight anymore, just at bedtime. the kids are happy to be home, and they're playing so well together (usually), and asher is quickly re-learning how to share and play with others again. (he'd been on his own - other than me - for 7 weeks, so he'd gotten used to playing on his own, and all his toys were only for him, and he didn't need to ask bram for that train or car and blithe didn't take his toys for her barbies... but he's adjusting.) we've only got a few days left of the fat-free diet, but i've discovered that fat-free cream cheese makes a great cream sauce for pasta, especially when you throw in some spinach and sundried tomatoes. i've done dishes and laundry and tidied up. i've gone grocery shopping. i have spent time with my friends, and i've read a couple cheesy romance novels and on friday night i went to see my friend's band play in london. i have a job lined up, just waiting for funding right now. i was planning on returning to my spirituality group and getting started back with the music team at church. money's tight, but it always is, and we get by. last week i started prepping the garden for planting, and there's garlic coming up from last year, and i think i want to grow tomatoes and zucchini and herbs and spinach this year, maybe some hot peppers, too. i had those a couple years ago and they were great. and today, asher and i were working on potty training, because he's "a big boy now" and "big boys go to da baffroom" so asher "not need pull-ups anymore, just underwears." and he was doing so well. only one accident all day; my dream was that he'd be fully trained by the end of the week, since he's so determined.

i imagined sitting down with you and filling you in on our normal life, our stable life, and you'd be so happy to hear it all, and you'd be amazed at how asher could go from a heart barely beating anymore to completely stable in such a short period of time.

and then came naptime. and he was short of breath from climbing up the stairs. (he hasn't had that problem in months.) and once he fell asleep, he started sweating again. a lot. i could have wrung out his thomas pillowcase. and he was pale. very pale.

i called our paediatrician's office and told them what was going on, and please tell me she'll wait to see him tomorrow, because "other than the shortness of breath and paleness and sweating, he's fine and not distressed." (you might not get that, but please tell dr c that i was laughing while i said that, totally joking, because he'll see the humour, i'm sure.) she sent us to emerg instead. oh, why, God, can't a doc just brush off some symptoms once in a while? is that too much to ask?

so off we went. ash, me and the kids. (and yes, it's like i have two families. there's asher, and there's the kids. rarely are they grouped together. it's what this kind of life does to you.) we were greeted at triage by name and the nurses were amazed by his sats, which are now gloriously normal. he sounded clear, and even though he's pale today, they could all see how pink he now is. i joked that it's amazing what some oxygen and heart that beats can do for a kid. they didn't realize that he'd gotten a pacemaker, but of course, they know him, so they weren't surprised. we went to register, and the nurse there knew asher and called him by name. another mother looked at us funny, and i just said, "we're here a lot, can you tell?" and we laughed. we got into emerge, and another nurse came over because he'd seen asher's sats on the monitor and he saw asher's colour from the nurses' station and needed to see him for himself, figuring asher had had the fontan but he didn't know for sure, and he was really happy to see asher looking so well, and recommended that the kids try hot dogs with peanut butter, which personally i think sounds disgusting, but bram is all excited to try it now. delightful.

the resident came over and asked if asher had a fever, runny nose, cough, any cold symptoms, and i told her that if he did we wouldn't be there, because that's just a cold and he'll get over it. she looked at me weird. but i was honestly hoping to hear that i was paranoid, that it was humid today, and that asher is otherwise fine. so she ordered a chest x-ray and ECG, and i expected they'd find nothing.

the x-ray was ok. asher didn't want to go, but he hurried through his popsicle and was excited to show blithe and bram the fish in the radiology waiting room. he was so funny during the x-ray. they had to do each shot twice, because he moved during the side view, and during the straight-on shot, just as they were taking the pic, he put his hands up and asked if we were done. haha, no. but then we were, and he got some stickers for himself (thomas, percy and james) and got some for bram (thomas and james) and some for blithe (snow white). and i got to see his x-rays. i hadn't had the chance to see his pacemaker yet, so i wanted to see it. it's so cool! there's the generator, which you can fully see in the side-view pic, and i saw the leads attached to his heart. wow, i love hearts! and i noticed that there was no fluid accumulating, which is why they wanted the x-ray, just to make sure, even though he sounded clear. when the resident came to discuss it with me, she said it looked ok, and i replied, "yeah, i didn't see any fluid on the x-ray," and again she looked at me weird. but whatever. she's never met us before; she doesn't know that i look at all his x-rays in london, and i know what they should look like, and i can pick out the problems before they do.

then she pulled out the ECG. the one asher had helped with, putting some of the stickers on himself and pulling the leads off when it was done. i looked at the report, but it was upside down so i just ignored it, figuring it would look ok (a mom can dream) and we could go home because i'm just not used to how a fontan should behave.

and she said that there was a problem with his T-wave on a couple lines, that they were pointing down instead of up, and they're letting us go home because we're going to be following up with cardiology this week. (i was unaware of an appointment this week with cardio. we were supposed to be free until the end of the month when we went in for pacemaker clinic. so i'll be calling about this in the morning.)

so now there's another problem with asher's heart. and of course, it's electrophysiological. because i don't understand electrophysiology. so obviously that's what he'll go for. something i don't get. and now i'm tired again. wait, tired isn't the word. weary, i think, is better. and so completely sick of all of this. the fontan was supposed to be the end of all of this. and then when it wasn't, that's ok, because the pacemaker would take care of this, and we're done now, and we're going to have normal lives now, for the first time in asher's life, it was all going to be normal. and it was, for a few days there. a few wonderful, miraculous, unprecedented days. what a joke. it was just a tease. like a carrot dangled in front of us for a couple weeks, and just when i started to let myself believe that it was in our grasp, it was yanked away, out of reach.

and i could just cry.

and i just want to sleep.

i cried tonight when i was getting asher ready for bed. bram gave me a hug. blithe gave me her favourite stuffed animal to sleep with because i "need mufu more than i do, mommy," and she wants to sleep with me tonight, so that, if i start to cry, she can just hug me and it will be ok. asher just played and was oblivious to anything being wrong in the world.

and i resent him for that. i hate to admit it, especially publicly, but it's true. it's his heart that's breaking mine right now, and he just carries on as though everything is hunky-dory. that's his little gift, i guess. but tonight, in the mess of this, having been blindsided again, i'm having trouble with that. i'll probably feel better in the morning, and when i see you on wednesday, i'll probably be back to myself again, but for some reason, i wanted to write this tonight, while i'm feeling it, because it's fresh and you want to know what this life is like.

and this is it. honestly.

see you wednesday.


Pete, Alison and Charlie said...

What a nightmare Heather - I can understand how you must be feeling - once the Fontan and pacemaker surgeries are done, you can't help but feel that it's all done and dusted... and then you get hit with something else from left field.
I'm exactly the same as you - I understand Charlie's heart perfectly, but electrophysiology is completely beyond me, and if I don't understand a problem, it stresses me out even more.
Just wanted you to know that I'm thinking of you, and hoping hard that this blip is easily resolved, and you can get back to your wonderful new normal very soon.
With love from across the pond x

ChristophersHeart said...

Oh Heather :( I am so sorry. I thought you'd be free and clear - at least for a while from new problems! I'm hoping it was a one time blip or something they can resolve with some pacemaker tweaking, something easy FOR ONCE something easy.
My heart broke when I read your posts.
I'll try to find you via phone or online today.

Mom said...

Another weird thing in Asher's little heart. Maybe it's a good thing that he seems oblivious and just keeps on living his life the way he wants to. In the meantime, I realize how frustrating and exhausting this is for you. Yet another thing to be concerned about. Hopefully this is something that can be resolved easily and quickly. In the meantime, I'm praying for Asher, for you, and for all those medical type people who need to find out exactly what's going on in his heart and then fix it. Where's Buffo when you need him? Seriously, have you considered giving him a call? I'll talk to you later today.

Anonymous said...

Hoping that this latest thing won't be a real big deal. You are doing a great job.