Reaching my breaking point

What a week it's been. Considering I am writing this at 1am I think it's safe to assume things aren't great. They are not terrible either. Skyler continues to have chest pains, a tightening in her abdomen and complains of "weird" breathing. Some days the pain is in her stomach and other days her neck, but everyday there is pain in her chest. We have been to the doctors a few times and each time I am reassured that her heart is fine. They have done and echo, ekg, chest xray, blood work and everything checks out ok. Her pacemaker is working well, in fact, the one lead that wasn't working (capturing) is now functioning as it should. So why on earth is Skyler having pain?

Tomorrow a nurse will come to the house and put a holter monitor on her. This way the Dr's can see 24 hours of electrical heart activity. I don't suspect they will see anything out of the ordinary, but who knows at this point.

I think it's her pacemaker. Seems pretty obvious... at least I thought it did. It was the first thing I questioned after her surgery, when this pain first started. I informed the doctors and at first they politely listened me. They brought sky in and listened to her, ran some tests and chalked it all up to post surgical pain. I was 90 percent sure that was a bunch of bullshit, but decided to wait a few more days so I didn't look like a 90 percent fool. Want to know what I learned from that? Moms are NEVER fools! (I suppose some are, but I am not... usually)

So why am I pissed? Sky has been very vocal about what she is feeling. "It's a squeezing in my heart and then just an ache." "Sometimes if feels funny when I breath, like its rough" "My neck feels weird" "It starts at my ear and goes to my chest..." I'm pretty sure I am not in medical school, I have no desire to be a doctor, nor do you I'm guessing, but I think we can all agree that something is going on. Her heart function looks great and ekg is normal. That leaves one thing, the pacemaker. Ok, so maybe it doesn't leave just one thing, I'm sure there is plenty of other things it could be, but google told me it's most likely the pacemaker. :)

I emailed her doctor tonight to tell her that sky came home from school because she was having chest pain and was anxious. The doctor then emails sky's electrophysiologist so they can decide what to do. The cardiologist was questioning whether to admit sky to the hospital for observation. The EP Dr then responds to that email saying, "If she's having chest wall stimulation, it can be treated in the office by adjusting the lead output" Hmmmm chest wall stimulation you say???? Hey that wouldn't be the same thing I questioned 4 weeks ago, would it? Oh, you mean chest wall stimulation would cause pain? Wow! and I bet diaphragmatic pacing would make her diaphragm contract and cause it to feel weird when she breathes! So what you are saying, without saying it, (always the way, huh?) is that chances are this could have been treated weeks ago? Fuck, I think I just graduated med school and didn't even realize it. (If only I could earn the big bucks for my pseudo Med School diploma)

Now it may seem that I am picking on the doctors or that I am ungrateful for the care they provide to Sky, that is not the case. I think they are amazing and I owe my child's life to them! I'm just mad because it has taken them 4 weeks to entertain the chest wall stimulation theory I had at the first appointment. Perhaps it's because I didn't say "Chest wall stimulation", but rather "OMG do you think the pacer could be shocking her muscles and thats the tight feeling???" But come on, we all know pediatric doctors have to take a class in Crazymomenese. In fact, I'm pretty sure they have to pass with an A to graduate. I realize doctors have to rule other things out... that's what makes them doctors. They are taught to breakdown the problem into smaller parts by ruling other things out, starting with the most harmful first I would suspect. But they could have done a full work up weeks ago and changed the settings then. Do they not realize the harm they caused by allowing this to continue? Doctors treat the disease, nurses treat the patient, and mom's must do both.... and then some. I don't think they have any idea of what this has done to my child emotionally. The fear that accompanies the pain, her worrying about dying, the schoolwork she has missed (yes, this bothers me). It's just one huge mess right now.

So it looks like tomorrow she'll get the holter monitor and we'll head to Children's hospital to have her output lowered and then cross our fingers.

I could be wrong (it's just a pseudo diploma remember!) and it may not be the pacer.... that isn't the point though. They stretched this out for 4 weeks when it could have been done in a day (a very long day, but one appointment). And if changing the settings doesn't work then it will now be stretched even longer!

Ugh, post surgical pain my ass... my kid was dancing the week after her surgery, because my kid rocks!