Hmm, it's late here, and I should be asleep.
In the middle of all the joy though, I can't help being scared about her heart stopping again. It's done this several times before. And we still have no clue why.
We've done every test imaginable on her heart, and not found anything wrong, nothing structural, no syndroms, no dx or anything genetic etc. that could explain it. Of course, that's good. But also scary, not knowing also means not being able to do anything about it.
Her dx on it is unspesific heart-issues, whatever that means. But it includes arrhythmias, and her pulse being very unstable. Sometimes racing, sometimes dropping very low, for no obvious reason.
It seems to be linked to seizures and infections, but we can't really find a patern or something to put our finger on that is the same every time.
I know I should probably just be very happy and greatful she is awake and breathing on her own, with her that is so not a given at all, and I am, believe me I am. But I can't help but to worry as well, and be scared about this issue.
I think it's also this fear I have of loosing her that's kicking in, it's so deeply rooted in me. I've been like a zoombie more or less when she was on the vent and sedated, just being in a boble and only focused on my girl and how she was doing in that very moment. And not really following the outside world, or anything else, but now it's all just back to hitting me in the face.
Ok, that was all just a long, rambling vent, I think I needed it, now I'm going to see if I can get some sleep.
In the middle of all the joy though, I can't help being scared about her heart stopping again. It's done this several times before. And we still have no clue why.
We've done every test imaginable on her heart, and not found anything wrong, nothing structural, no syndroms, no dx or anything genetic etc. that could explain it. Of course, that's good. But also scary, not knowing also means not being able to do anything about it.
Her dx on it is unspesific heart-issues, whatever that means. But it includes arrhythmias, and her pulse being very unstable. Sometimes racing, sometimes dropping very low, for no obvious reason.
It seems to be linked to seizures and infections, but we can't really find a patern or something to put our finger on that is the same every time.
I know I should probably just be very happy and greatful she is awake and breathing on her own, with her that is so not a given at all, and I am, believe me I am. But I can't help but to worry as well, and be scared about this issue.
I think it's also this fear I have of loosing her that's kicking in, it's so deeply rooted in me. I've been like a zoombie more or less when she was on the vent and sedated, just being in a boble and only focused on my girl and how she was doing in that very moment. And not really following the outside world, or anything else, but now it's all just back to hitting me in the face.
Ok, that was all just a long, rambling vent, I think I needed it, now I'm going to see if I can get some sleep.
It's so rough to see your child in danger like that, and you go into that damage control mode. When things start to calm down again, that's when you start actually processing, and the mind starts its cyclical "what if" kind of thinking.
:
Follow Mothering