Very Bad Days

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.

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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. 

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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.

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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
-brett

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2 thoughts on “Very Bad Days

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  1. I had my test results IN MY HAND even a print out of what babesia does to your heart from me trying to show them.. Its like 14 infections.. bacterial, fungal, blood parasites, and several severe viruses.
    They ignored me.. told me its chronic and they cant help. I told them its only chronic because they dis not treat it.. that I can not manage a hr that is 160 resting and 190 if i move and blood pressure at 155/120. That I usually have low blood pressure. They told me my he seems to dip down sometimes.. they cant lie.. I have a heart rate recorder implanted in me.. ot rakes less than 4 minutes to download it to SEE my heart rate.. they refused to do so.. then refused my Iv antibiotic.. I told them about it and they told me the spiel about how they stay in your system dor 13 hours, that i wont die.. I told them to check my chart if I miss it by two hours I get SO ILL I go paralyzed, I am not a typical patient.. they are even saying it and saying sorry they can not help.. but then not listening or READING my chart telling them!! I feel truly like death.. the tachycardia is so bad.. the chest pain that are coming are so sharp I lose myself.. my breath, every bit of living for a few seconds, then the chest pain that is 9/10 constant and tight.. HOW CAN THEY NOT SEE ME.. ITS MY VITALS BLACK AND WHITE.. its my labs black and white. An infectious disease doctor I called for help told me 1st the labs were wrong.. I told them they were checked by many different labs. So then he said 2) these dont cause autonomic issues and my heart was a cardic issue.. (strike 2 buddy.. i thought you read my chart) all cardiac doctors top 3 in the world plus top dr in Toledo says its caused by my autonomic system.. So then #3 he says your immune system can just handle all of this itself. *face palm* 3 top hospitals disagree.. 5 years of bed rest, IV meds, Oxygen, Cleveland clinic doctors literally screaming in our faces I was going to die amd they dont know why.. well now we know… and they let me die in front of there eyes as I constantly ahow them.. bleed for them, reach out, DO ALL THE TESTS, THE BLOOD WORK, THE BIOPSIES, THE SURGERIES WITH OUT ANESTHESIA OR PAIN MEDS… I LET THEM BEAT ME TO DEATH… Im not able to even stand up.. or PEE or EAT or BATHE or hold my baby girl.. or walk the dog… or allow my husband to go to work to save our lives without slipping so close to death.
    GOD PLEASE IM NOT A BAD PERSON PLEASE JESUS GOD SEE US.. PLEASE I DON’T KNOW WHAT I AM SUPPOSE TO BE LEARNING.. I AM GENUINELY KIND AND HELP OUT EVERY PERSON I SEE.. EVEN IF I CANT MOVE A MUSCLE.. I SMILE BECAUSE I KNOW OTHERS MAY NEED THAT.. MAYBE THEY HAVE PAIN TOO..
    PLEASE GOD.. please.. Im not living.. it hasnt killed me yet.. please see me please god please.. *tears*

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    1. If something happens.. you raise money to get a private autopsy $5k.. you make sure you test these positive tests and more like it on my brain, heart and cebreal fluid.. it WILL come back positive plus some.. then you hold everyone accountable that stood by and did nothing when we told them years ago.. plead.. wrote papers on it.. went to a lyme dr and got it diagnosed, then when they didn’t help for years like they said they would.. many tests from many different labs confirm as I lay dying at there feet many times.. interns of theres telling us they thought they would never see me again as they thought i would die by the next appointment.. all of them
      .. its all there.. every lab, every note.. every thing and they watch it happen. You make them pay for my daughters life, for taking me out of it when it didnt have to go down this way..

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