I’m so frustrated right now because I don’t know what we are supposed to do with Gavin. He’s showing the very same signs and symptoms that ended him up in the hospital, twice in the last 30 days.
There are no instructions or standing orders as far as an autonomic crisis, partly because they are so uncommon.
This evening Gavin has presented with blurry vision and chest pain.
I have him on a heart rate monitor, so we can have a real time gauge of where it’s sitting at. In the past hour, Gavin resting heart rate has increased to about 107 bpm, up from about 90 bpm.
When he stands up, his heart rate jumps up about 20 bpm.
This is not necessarily a reason to go to the hospital but the fact that the baseline is climbing is worrisome for us. Plus, when he stands up he gets a headache. As far as I know, that’s something new.
When I was a paramedic, we had standing orders. Standing orders were a set of instructions on how to handle most conceivable medical emergencies. If I ever found myself in a situation that was outside of my standing orders, I would call medical control and receive instructions as to what I should do.
Unfortunately, I find myself in a similar situation, only this time I have no medical control because there isn’t a whole lot known about autonomic disorders.
The only thing going we can do is stay home or go to the hospital.
That may seem like and easy choice but in reality, it’s anything but. The hospital is about 20-30 minutes away. We also have to have someone for the other boys, which isn’t easy. Even if we come home within a few hours, everyone is thrown off and overstimulated.
If we end up having to stay, which is what has happened the last couple of times, that throws chaos into mix as well.
Making the choice to stay home or go to the hospital can have a domino affect of the entire family, including Gavin. We don’t want to put him through needless blood work and testing of it’s not necessary. The poor kid goes through way to much as it is.
So…My conclusion is that I need an instruction manual for this whole autonomic disorder crap. Something that says, if A, B, C or D happens, take him to the hospital.
Life would be so much easier if it came with instructions……
**Thanks for reading**
-Lost and Tired
Please join our Autism Help Forum
Look for “Autism Help” app at the Google Play Store
This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.