Hospital stay part 1

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.

45978

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.

45979

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.

45980

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
-Brett

 

3 thoughts on “Hospital stay part 1

Add yours

  1. The d dimer ran last night that was negitive.. that the lab then said the machine was broken.. re ran the same lab with the by then old blood and it came back over 2000 (the cut off is 500) which means a clot. I was asleep 30 minutes when they came in to tell me all of this mess with the clot and mandatory CT I asked for a redrawn d dimer to run it new and hopefully correctly with the correct timed blood.. I was pushed into the CT and they didnt re do it.. Then I told them they need to add a line, I am told to protect ny port. They didnt listen and wheeled me down, for CT to wheel me back up, they placed a 18G when this CT requires a 20G… missed and then bleed ALOT second attempt.. the contrast made me VERY SICK. I am over 5 times my life time for radiation exposure and I told them. I ALSO had a CT 7 days ago.. same IV contrast too.. then they come in with IV potassium and start setting it up. I ask what they are doing and we were told drs ordered it bc you a a bit low on potassium.. I then as for oral.. IV BURNS LIKE HELL FIRE WITH POTASSIUM. They agreed. I also drank an entire pom juice as it will more than balance the potassium itself. Hours later they come with more potassium.. I ask why am I being given so much without checking the levels.. they just walked away and didnt come back.. I requested normal labs todsy to check on it.. it has never happened.. on to being in potassium phosphate.. no warning.. indication or plan.. I say okay try to run it through the IV already placed.. IT STARTS BURNING.. AND SWELLING AND RED.. I ask for them to stop it and pull the line.. it was painful.. so i allowed them to put it in my port.. INSTANT PAIN I MY chest.. I told them right away.. the nurse told me to give it time to see if it got worse… so I did.. it got WORSE… and harder to breathe and throat tight and chest pain, so I hit my call button.. waited about 7 minutes (which is FOREVER WHEN THIS IS HAPPENING) and paged again… no one came.. I clipped it to stop it from flowing in more.. 48 minutes later my nurse comes into see why my button was on.. its a new nurse I havent met.. I explained and asked WTF (but very politely and concerned) and they apologized.. a student came in.. (no students without their teachers on my case) looked at us for one second and yelled at the nurses for stopping it. I pipped up and said I STOPPED IT… I have known drug allergies.. this was very bad for my body visually and he walked out.

    Its been 24 hours.. no check of labs.. no check to see if d dimer was lab error (and if it isnt where is this clot that is big enough to spike 2000), no check of potassium or phosphate (phosphate can be low because I was not allowed to eat fkr so long… over 11 hours because waiting for my bed and then hkirs for any staff to come see me)… this is dangerous.. I keep asking… with logic to no resolve..

    Still no idea if I will be treated for my diagnosis of this (even in my chart diagnosed) we arent even looking for a diagnosis anymore.. we are looking for treatment of the diagnosis.

    My brain is on fire right now.. I am tachycardic and fever.. I cant speak without a stutter.. I am so over all of this

    THEY MISSED THIS FOR 5 YEARS AND RUINED MY LIFE.. ALL OF OUR LIVES… WE SEE IT NOW.. EVEN WITH A THOROUGH DIAGNOSIS FROM THEMSELVES they say… “hmm idk.. nah..” Not one taking this and treating me… these are not a joke.. these are HIGHLY fatal.

    Wtf is happening.. not even close to basic care is happneing.. do I have a clot or did the broken equipment and old blood throw a positive after it saying negative!? If their is a huge clot.. where… how is my potassium… and phosphate… why hasnt my loop recorder been investigated like it should.. why do they keep pulling me off my meds to watch me crash over and over and over and over? Oh.. bonus the room I got took over 2 1/2 hours just to CLEAN I asked why.. on a gastero floor.. the nurse hinted about C diff and how its okay they use UV lights to help clean thats why it takes time… awesome for the diarrhea I got second day that no one has acknowledged.. okay.. awesome… why dont I have the same doctor.. at all.. why do I have to explain it for over an hour for different doctors on the same team, that never individually believe me or my chart and each have to see me crash to even get them to blink an eye… then the night team has NO IDEA WHO I AM.. and the things I was told to just wait for that the day team where working on that keft for the day.. the night team has NO idea about… I sit in agony with not even basic easy to find answers..

    Where is the dr whi admitted me who knows me who doesnt believe in lyme and co infections (like its a religion and not a physical visual bacteria and Parasites)
    Why isnt he more in charge with even basic labs? Who is in charge.. who am I suppose to ask questions to and expect answers from? Nothing absolutely nothing not one single communication is taking place now..

    Its time to get the media and news involved.. a 17 year old boy just died from misdiagnosis of babesiosis.. I have the diagnosis and am being DENIED treatment..

    Like

  2. Oh the arm that was painful and swelling and had the IV.. when it was taken out the pain stopped.. over 6 hours later.. pain came into my whole arm, from hand to upper arm.. a deep pain.. a pain that cant cant be ignored even if you try.. I told the nurse 3 times.. (once paged, then twice more when she just stopped in for what ever reasons), she just doesnt know..
    Soo.. awesome..

    Is this all real… this doesnt seem normal care… it cant be right!?

    The rash on my face and hair and neck that peels and then has so much clear liquid it pours off me.. spread to my face… and is RED and HOT and spreading.. is completely ignored so far no matter how much they see it or I ask..

    Like

  3. My heart goes out to you both!

    I am so bewildered as to why they do not ‘believe’ in Lyme disease!
    My rheumatologist doesn’t believe a person can have fibromyalgia as well as ME/CFS, so like yourselves we lose out on very necessary treatment.

    Are you able to transfer to a different medical team whom do believe?

    Well, I continue to pray for you all. I did leave a donation yesterday. It’s not a huge amount but hopefully others will follow.

    Much love to you all
    Fiona.
    xxxx

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Create a website or blog at WordPress.com

Up ↑

%d bloggers like this: