What do we do when no one believes us? How does Bella get treatment?
Bella was admitted yesterday. It was a rough start (that’s an understatement) especially since it was a planned admittance. It took over 5 hours for them to find her a room, and they still tried to put her in with 3 other people. Which is a big no no with her autoimmune problems. On top of that her diet was put in as no food or drink at all, and it was about at the 11 hour mark before it was changed. Her medications weren’t put in due to a misunderstanding, and she declined hard in front of the doctor. I was on the phone at the time, so it’s actually recorded. I still need to figure out how to upload the audio recordings, but I’m working on that as well.
Today wasn’t too much better. Savayah was cooped up in the room with us, and it took the doctors about 4 hours past when they said they’d be there to finally come. This morning I was trying to hold off as long as possible to go to the hospital because today was when we were going to hear the plan for her stay and all of that. You can only keep a hyper 5 year old in a room so long. On top of that there is like 0 communication between the doctors…
So Bella’s infectious disease doctor comes in, about 5 minutes later the attending doctor, and her assigned nurses, and it’s like the 4th time she has to go over everything to this point. Whole story out there, to get help. I had to leave about half way through to walk with Savayah, and I wish I hadn’t.
Tomorrow morning they’re stopping her medicine, just to see what happens. We don’t know what they’re looking for, I don’t think they do either, and either way it’s not going to be a good day. This stay we will either get help or have it in writing that they don’t know what to do and refuse to treat what she has already been diagnosed. It wont help her get better, but it’s better than us holding out hope that someone will help.
She’s been to hell and back. She always does the testing they want. We’ve never done a lab, out of pocket or otherwise, without someone ordering it. The tests and labs performed by the hospital and the outside labs are all ignored. The specialist we saw in New York, so we could get her diagnosed and a treatment plan, all ignored. They’re the one’s who recommended we see the specialist. The hospital suggested the labs. Her doctors ordered them so we could do them. The more we prove Bella has Lyme, babesiosis, bartenella, etc. the more they seem to say that’s not what it is… But they’re not suggesting it could be anything else.
Right now this entire hospitalization is a shot in the dark for them. It’s to hopefully find something else to blame for her symptoms. Even though she’s already diagnosed. Even though we have every test under the sun all saying what she has. Why does no one believe it? Why is no one helping her? The only reason she’s on an antibiotic now is because it keeps her from going paralyzed and catatonic. They didn’t perscribe it for lyme. The last time she was hospitalized in January, all of that occured, and they said they didn’t know what to do, or what it was, but they can’t help. We kept pushing, kept going, and now it’s just a repeat.
Yesterday it was already too far gone. They didn’t put in her meds because the doctor who was there over her case, thought that we were starting right away. Without us knowing the plan or that it was going to happen. She got so bad she couldn’t talk without losing her words, and stuttering profusely. The doctor sat with her and finally ordered her meds, almost 2 hours late. It was a steady progression as things got worse. From more to intense pain. from being able to talk clearly to being practically unable to get a word out.
We shouldn’t have to fight this hard for someone to believe her. For someone to treat her.
It’s looking more and more like this will all have to be out of pocket, and we can’t afford that and still live. We’re not going down without a fight, and this stay we will either get help or written admission that they are refusing to treat her. No inbetween. She’s gone through too much already, and we can’t handle any more just because the doctors we see don’t believe in Lyme, or the co infections.
Last year Lyme Carditis was placed in her chart by a doctor who is no longer at the hospital. The CDC called and said it needs to be treated even if it’s just suspected. It is fatal. The hospital responded by saying that they don’t diagnose it, so they don’t treat it… that’s pretty much the story of our lives. Lyme doesn’t exist in Ohio… It’s an epidemic in PA, but for some reason her doctors don’t think it crosses state lines. Though they do admit that animals can carry ticks, especially deer and birds, and eventhough they migrate and don’t quite stick to one specific area… I’m going to have to stop myself before I go down a sar-casm.
Right now Bella is laying in her hospital bed, in severe pain. She’s laying there untreated, soon to be ripped off the one thing keeping her somewhat stable. Just to watch her go paralyzed, catatonic, be in severe amounts of pain, her entire body freak out and all for what? This will be the 3rd time they witness all this, just this year. There’s no plan to treat or rule out anything specific, as just about everything else under the sun has already been ruled out… WE KNOW THE PROBLEM. Since her doctors don’t believe in Lyme and it’s co-infections she is left to worsen.
We’ve been told countless times that she was going to die. That she wouldn’t last anywhere near this long. More than once they were going to ambulate her home because they don’t know and there’s nothing they can do. We know, in our mind without a doubt, what this is. She’s still told they don’t know, they don’t believe, they can’t explain… How much can we take? How long does she have to suffer?
Bella deserves so much better than this. Something has to give. Yet tomorrow, she’s going to be pushed back to the brink and past it. If they do in fact want to go ahead with the spinal tap, I don’t know if her body will be able to handle it. They want her off them for at least 3 days in order to draw basic labs off antibiotics. From what we can understand is they aren’t looking for anything, just hoping something pops up…
We don’t know what to do, and we’ve done every last thing asked of us. Her heart surgery the doctor apologized to her for. The loop recorder placed incorrectly. We’re losing our house to pay for labs out of pocket that they all just ignore.
Please share our story. We don’t know how to make it through. Please donate if you’re able. We’re in a bad place and as much as we hate to ask, we have no other choice right now. Thank you for reading, and please share, it doesn’t cost a thing.
I’ll keep you updated
Please pray for her