I had to take Bella to the ER today. She’s still there as I write this, heart racing, blood pressure through the roof, and hurting so bad her entire body is shaking. They’re going to send her home like this because they don’t know the cause. A few blood tests and a CT, her vitals still way bad, they’re sending her home. At least that was what she was told after her CT just a few minutes ago. Still awaiting the results. These are the days we don’t often talk about, because no one seems to want to hear them. Most days are bad; as in bed bound or in a lot of pain. Any day you see her out and about is a really good day, where she can get around a store or somewhere for an hour or two. Today is a very bad day.
Her blood pressure has been steadily rising, heart rate more and more out of control, as she lays there doing her best not to move. When she moves it all gets worse. The pain is way more than we can take care of at home, with nothing even helping to take off the edge.
Her heart rate has been in the 150’s and 160’s laying down. She updates me as constantly as possible because this whole time, she’s also not getting help. She’s been there for over 4 hours as I write, and other than seeing the doctor when she first came in, has barely seen anyone. Just to take her blood and get her to a CT (3.5 hours in). She’s been paging because it’s just uncontrollable and too much for her, but no one comes. I keep trying to call to get status updates, and make sure they don’t forget her. I’m not sure if a lot happened and there’s a bunch of trauma patients or something but it’s just not right. Especially since we know what’s wrong, but can’t get treatment, or at least can’t get the right doctors to do so. Even if it’s not 100% everything that’s wrong, they should treat her.
She’s afraid, and has every right to be. I’m going to figure out how to put all her doctor recordings up so people can hear it all. For years us bringing it up, testing and being brushed off. The only doctors willing to help having their hands tied, figuratively speaking, by “hospital policy”. The little help we are getting is treading very lightly so as not to lose their job as well. It’s not right. I feel helpless to watch it all, not being able to make even a little bit of a difference. I don’t know how to move forward. We have perscriptions from an out of state doctor, who doesn’t take insurance, but can’t afford the medications. The ones perscribed here, are just the begining, and already not being covered by insurance and as much as we keep trying, it just isn’t working. We don’t know what else to do.
This was at home, before we took her in to get help. She wasn’t doing anything but trying to sleep at that point, just to try and escape the pain. However it was too much, and against our better judgment and with no other ideas of how to stabilize her at home, we had no choice. Still nothing. Just waiting for the doctor to come back in and discharge, unless their mind has changed, but in her history of ER visits and Hospital stays, they don’t care. They can’t pinpoint the cause so it must not be that big of a deal… It’s deplorable. We’re losing everything. Our house, our ability to keep her stable, our lives… I don’t know how much longer we can do it all. We’re fucked, but fighting hard. Every single day we face a challenge like this. Most of the time we can at the very least keep her home, even when most people would have called 911 near the beginning. We know they can’t help, but sometimes we have no other choice. We do our best to at the very least keep Savayah out of the hospitals as much as possible. Luckily our friend Steve was able to go with her today, or else it would have been our little family trying to hold it together in a small room. She likely would have been worse off with Savayah’s hyperactivity, and we would have been fighting some virus or infection she picked up for the next week or two, and that part is still a possibility, but lesser now at least.
Let alone it’s almost time for her medicine. If they fuck around or don’t get it too her in time, she may not be coming home tonight. She tends to get much worse, massive headaches and even paralysis from the neck down just an hour or two past time. We don’t know what to do, or how to do it. I’m trying my best, but I’m unable to do it on my own. Please share. Please if you’re able donate so I can afford not only her medicine, but to keep us alive. I don’t know what else to do… Thank you for reading.
Pray for her