Wednesday, February 23, 2011

technology is great... until there's a glitch. {wave of nausea}

and when the glitch could kill your child... {wave of nausea}

asher's london cardio, dr w, has suspected for a few weeks now that asher's pacemaker isn't quite doing what it's supposed to do. what with the symptoms, like grey spells, it was a possibility.

turns out...

she's probably right.

almost every day for the last few weeks, asher has told me that his heart hurt. sometimes it burned, sometimes it just hurt. and something else always hurt, too, like his throat, jaw...

(ok, a warning: i'm going to try hard to not to vomit while i write the rest of this post. it's just. that. freaxiating.)

yesterday, shortly after noon, i got a call from the school. it was asher's EA (educational assistant). she said that asher told her that his chest was hurting. she also said that he was flushed and several people had remarked that he was puffier than usual. so i asked to talk to him, and i asked him,

"hey, hunny, how are you?"

"not good."

"what's wrong?"

"my heart and my arm hurt."

"your heart and your arm????"


"which arm?" (at this point i realized that he can't show me which arm over the phone. and he doesn't know his right from his left. on to plan B...) "show mrs e which arm hurts, and give her the phone, please... {mrs e comes to the phone} which arm did he just show you?"

"his left arm. why?"

"because he's saying it hurts. he needs to be seen. right now."

a couple phone calls and the school called 911 and asher was rushed to emerg.

the vitals en route were as follows:

  • BP was 116/54.
  • sats were 94% (down a bit off his norm, but not much. not enough for 02)
  • heart rate was 74.

yes. 74.

his pacemaker is set so that his heart rate doesn't go below 80.

his heart rate went below 80.

and when i saw him, he was scared (he never gets scared, especially when he gets to ride in an ambulance), his forehead was grey, and his cheeks and mouth were the brightest shade of red i have ever seen on him. even with a high fever, asher has never been that flushed.

he still had pain in his chest and arm by the time he got to emerg. this was about 40 minutes after i got the call from the school.

so the doc ordered a chest x-ray, bloodwork and an ECG.

asher and i played a bit, and rested a bit.

after a couple hours, his heart rate was up to about 82. and fyi, his usual anymore is 100. but it's over 80. but you'll note, about 20 bpm slower than usual.

in the end, doc didn't have any concerns. quoth he, "if an adult came in with chest pain like this, i'd continue to investigate and look into things like coronary artery disease. but he's too young for that."

to which i almost snapped replied, "he's also too young for a pacemaker, bloodthinners, diuretics, beta blockers and ACE-inhibitors. what's your point?" but i bit my tongue.

i called our amazing paeds dr b once we were discharged. i told her everything, including the uber low heart rate. so she called cardio. then she called me back, saying that dr w wants to see asher on thursday at 1:00, and she'll check his pacemaker.

now, if you know me, you know that i have been thinking about this non-stop since yesterday. coronary artery disease? pacemaker? symptomatic bradycardia? chest pain????????? wha-?!?!?!

never fear, gentle readers, i have figured this out.

sure, there's a possibility that asher may have coronary artery disease. with asher, anything is possible, especially when you take into account the very heart unhealthy diet he's on in an attempt to pack on some pounds. so i'm not ruling that out. but i wouldn't bet on it, either.

no, my money would be on the pacemaker.

and now you're confused. so i'll explain.

chest pain (aka angina) occurs when the heart muscle does not receive adequate oxygen. now, with CAD, plaque builds up on the walls of the arteries, decreasing the amount of blood that can flow through. decreased blood through the arteries means less blood getting to the heart, which means less oxygen getting to the muscle. which means bad.

with symptomatic bradycardia (aka, heart rate is low and affecting function), the heart is not beating fast enough. this means that less blood is being pumped through the coronary arteries. which means that less oxygen is getting to the heart muscle. which means bad.

and with heart block like asher's, his heart rate doesn't always go up with activity. which means that his body (including his heart) needs more blood and oxygen, but his heart can't send it out. this is what causes things like fainting, grey spells, dizziness, chest pain... oh. and the chest pain... can feel like tightness, a weight on the chest, or... burning... yes, angina and reflux can feel the same... making them easily misdiagnosed as the other...

so here's where things stand right now:

asher is not going to school until this is sorted out and his pacemaker is working and his heart is beating and not... um... attacking. it's too risky.

asher has been instructed to tell someone (me, his dad, my mom... whichever adult he's with at the time) when his heart hurts, and if his jaw, neck, shoulders or back hurt. we need to know right away. because if he starts to have chest pain, he needs to go to emerg. right away.

i am trying not to feel guilty. for weeks now, asher has been telling me that his heart hurts. that he gets dizzy. that his neck, throat and jaw hurt. and i was brushing it all off, thinking it's nothing more than a bit of reflux or tiredness. sure, i've been watching him, playing chicken with him, if you will, but still... he's had these symptoms, and i did nothing. ok, i mentioned the grey spells to cardio. and i told dr b about the reflux (or what i thought was reflux... now i don't know...). so in my head i know that i did the best i could with the information i had at the time... but knowing that what i didn't know could have killed my baby... and could still do him a lot of harm until his pacemaker gets sorted out...

i just want to cry.

instead, i'm breathing. and i'm trusting God. i don't know what is going to happen, and i'm scared out of my mind, but i'm trying to trust God. i don't succeed 100% of the time, i'll admit. but i'm working on it. so i'm working on breathing and keeping busy and just waiting for the appointment tomorrow afternoon.

ps - sheryl, i've been thinking about this off and on for the last 6 months... and i think you might be right. at least some times. times like this, for example. sigh...

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