Sorry I wasn’t able to update yesterday. I was just too exhausted. Today isn’t much better, but I have too. Yesterday the hospital took Bella off her medications to observe what would happen. They had a PCNA sit in her room with her all day, and we had her write down the symptoms as they occurred. Bella was shaking in pain. Her speech slurred more and more to the point of being completely unintelligible. Her brain felt like it was on fire. She even started to go paralyzed before she finally couldn’t take it anymore and “tapped out”. That’s not even the half of it. Right now as I write this, I feel kind of defeated…
She’s always done exactly what they tell her. The tests ordered, even the ones we had to pay out of pocket for, were all ordered by the hospital. She’s been poked and prodded, made intentionally worse, had unnecessary surgery, they took her appendix and gall bladder, more medications that I could possibly start to list… Everything asked or tried we have done to try and get to the bottom of what is going on.
The only tests that ever came back positive for anything is Lyme disease and a few co-infections. They’re called co-infections because they often come together, usually from the same bug bite. Usually a tick. However, somehow, her doctors don’t believe it could be these things. All of her positive tests, according to her team for the stay, are false positives. From multiple labs, testing in different ways, including their own labs testing, are all false positives. Honestly we would be fine with that if they had anything at all to suggest otherwise.
All we were told is that they don’t think it’s Lyme or any of the other infections that tested positive. They don’t know what it is, and can’t suggest anything else. They won’t even attempt to treat because they don’t agree with the results. Even if they don’t know, and have nothing else to go forward with, to them it can’t be this… What can we do?
Their only suggestion was to get more doctors opinions if we don’t agree with theirs. They suggested doctors at Ohio State University, because it’s the only hospital we haven’t gone too. We’ve been to the top hospitals in the USA, as well as all of the local hospitals, and the only ones who can help us are either out of pocket for everything or unable to prescribe due to hospital policy and the department they work in… In other words we can’t afford to fix her, and the ones who could help can’t without losing their jobs and possibly their licences.
It’s just not fair. The system has failed Bella, and we’re just hoping at this point that her PCM doesn’t end her antibiotics. It’s the only thing that keeps her somewhat stable enough to keep out of the hospitals that don’t help her anyway. I think I’m going to get it wrong, but to quote Sir Arthur Conan Doyle, “Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.” Unless you’re a doctor, then that can’t be it either…
It’s just frustrating.
Oh and one of the residents came in last night saying they were thinking it’s a neurological infection, yet today when the team came in to say they don’t know she was the only one not there. They also said they don’t think it’s an infection and have no clue how or why the antibiotics help but told her not to stop them at all, yet they won’t help with them. It won’t hold up much in court or even telling any of you but it happened. Bella was almost happy just to hear they thought it was a neurological infection, but that changed to I don’t know for some reason. No new testing, no new ideas, just that they don’t think it’s Lyme.
Where do we go from here? Drive four hours to see a new doctor and start over completely? How do we do that? She is so bad her brain is on fire, going paralyzed from the neck down, head pressure and pain so bad, she loses her sight and heating, her body and muscles lock up and seizes, her speech so bad its not even words anymore. THEY SAT IN AWE AND SADNESS WITH ME WATCHING HER BODY FAIL AS SHE TRIES TO CRY OUT FOR HELP BUT HER WORDS AREN’T EVEN WORDS, BOTH DOCTORS DID SEVERAL TIMES THAT DAY, each hour worse and worse, one doctor setting up an ICU TRANSFER TWICE, KEPT TRYING TO GIVE HER RESCUE MEDS TO TRY TO SAVE HER LIFE, as the other doctor said no, let’s see how far this gets.. It was like something out of a horror movie, it all seems to be in slow motion in my brain now.. We can’t afford to live and see her doctors close by, and their only suggestion is to either move to where a doctor can help, or go somewhere else… One of the top hospitals in the world says go to a college teaching hospital because we haven’t tried them yet…
She has the diagnosis, but no one will treat it. The Doctors who do, we can’t afford to even see, let alone have continuous treatment. We’re stuck because they simply don’t want to treat her. We even asked for them to write it down. I want them to admit, not just say, that they wont treat her. That it can’t be any of the things she popped positive for multiple times.
Her discharge paperwork when describing what happened when they took her off her medicine just said she had an elevated heart rate and headache. No mention of the above mentioned things that happened, they didn’t look at the 3 pages the PCNA wrote as we watcher her body fail in horror, and when we asked them to fix it the discharge paperwork, the Doctor refused. They didn’t write anything about them not thinking it was any of the things we brought to them. Nothing, just that they suggest outside doctors, and they suggest these meds, that they have already tried and discontinued because of how much worse they make her, even life threatening. Most drop her blood pressure to a level she passes out with any movement, others cause her heart to be both too fast and too slow, and others have no effect at all. To control her heart rate, no mention of fixing anything else, and all of which is thoroughly documented to be ineffective or destructive.
They couldn’t say it was just anxiety or something like that this time, because it happened while she slept. Her heart rate spiked shortly after the missed dose and she woke up in decline…
They even tried to push it all off on cardiology, knowing that her cardiology team signed off that it isn’t a cardiac issue. We’ve been down this road so many times, we’re just tired. We’re willing to do anything, and have done every last thing asked of us, to be told they don’t think that’s it because her infectious disease doctor has treated Lyme and babesiosis before, though admittedly not one chronic case… They wan’t to classify it under a multitude of syndromes, but not one offers a treatment plan, and most don’t even fit. They keep saying it might not be one thing, like we’re even suggesting it is. We have a list of like 10 positive infections, the one’s she’s popped up for many times, but even that they don’t think is probable that she has those infections.
These are fatal even when treated properly and immediately. Right now, and we don’t know for how much longer, we can keep it at bay. Anyone else feeling like she does while it’s at bay, would be in the hospital. The amount of pain and horrible symptoms she endures to stay home, most people would call EMS. Most people would be in the ICU. But people think because she forces a smile, it’s not that bad. No one else see’s the amount of suffering she goes through because if we didn’t try to hold out hope, and force a smile we would be swallowed up and probably not be here anymore.
We’re struggling, and we need help. Please share, and hopefully we can figure out some good news one of these days.
Bella wanted me to add a message:
First day a d dimer was taken came back negative. Then 4am they rush up to tell me the machine broke and they re ran the same old blood and it came back over 2000 when the cut off is 500. I told them to take new blood and re run it since the machine was the blame and I am FIVE TIMES MY RADIATION EXPOSURE FOR MY LIFE TIME, THEY ARE CAUSING CANCER.. they told me no.. so they placed TWO 18 gauge needles in my arms.. one blew my vain right away.. the second leaked into my arm (later leaking medication into my arm as well).. i got taken down to mri 2 times at 4am then the contrast for the second time this week which is poison and HURTS.. there was no blood clots.. I begged for a repeat d dimer and was told no until 2 days later after they took my meds and watched my body convulse and my loose my ability to speak or move… they re ran it again to play nice because they saw how bad i got and they wanted to act compassionate.. the test..it was NEGATIVE 100%
WE JUST GOT THE RESULTS OF THE CT .. IT SAYS 3MM SPOT ON MY LUNG.. BUT IT IS ‘UNCHANGED’…we never ever on any CT saw this in the results.. so we go look at the one from this month on the 17TH.. ITS NOT THERE.. WTF
I don’t know what to do to make it stop. Pray for us. We’re going to upload some video to YouTube and post an update with that and some audio soon. Thanks for reading.