Ok, so this post is going to be a bit of a rant, so I’ll apologize now, and warn you before it gets ugly…… I am running on a poor night’s sleep and a stressful day and a half…..deep breath.
So I have a 10 year old son who has had seizures for most of his little life. He takes medication for it and for the most part it is pretty well controlled. If he has a seizure, we have a rescue med to give if it doesn’t stop after 5 minutes and for years have been doing this. Only twice before now, we have had to call an ambulance and go to emergency because the med wasn’t working and he could go into what is called status epilepticus, a dangerous condition in which epileptic seizures follow one another without recovery of consciousness between them. Anyhooooo, this is what happened yesterday, so here we are again. We were taken into emerg where they had to give him an IV and another dose of the rescue drug but he kept waking up seizing, so finally after 4 hours or so they loaded him up with an anti convulsant and finally he slept. We were in the trauma room for 8 hours. One uncomfortable chair to share, no food, no coffee and damn it, the docs wouldn’t even give us any meds to make us feel better either, lol! I am NOT complaining, mind you, about the care in emergency… it was top rate, although it did take 8 hours to get a bed in paediatrics….. but whatever…we got there. This morning is when I lost it a little:
So a paediactric doctor on call came in and proceeded to say to me, “You know that you have to bring Ben into emergency every time he has been given his rescue drug…”
And I said, “Pardon?” That’s not gonna happen. I proceeded to tell her that we have been giving him the rescue drug probably once a month for 9 years and he almost always comes out of his seizure afterwards….. and this is where I wanted to become violent…
she says, condescendingly, “Well, did he THIS time??
I answered, (quite calmly, I might add), “Well, we are here THIS time, aren’t we?”
If we had to bring him in to emergency every single time he was given his rescue drug we would have spent almost 900 hours waiting in emergency for a paediatric doctor to come and see us and then send us home. That is nuts and I wish sometimes that some doctors would give us parents a little credit for what the heck we have learned about our kids conditions over the years… we actually DO know them better than any physician and we know when to bring them in …. we can list off their meds and what they do, their dosages, their symptoms, I could go on….. we tend to even lean on the side of caution more often than not, in my opinion. Now, over the years, we haven’t had many physicians treat us this way, but when we do, I instantly get irritated. It’s hard enough dealing with the day to day stresses of a disabled child but don’t “order” me to follow ridiculous instructions when you haven’t even done your homework on this kid. OH boy, Mama bear is out.
Ok , so rant over. Thanks for listening. I just needed to get that out there……. I feel better. And we are being released soon!
j (crazy sleep deprived mother)