Uncertainty

I’m staying up to date this time! That’s about it for good news however. Bella has been admitted the last two days, with an uncertain discharge day. Today started with a plan to put a band-aid on the situation and try to get her to see the headache clinic, and maybe a few other people to move forward and move on with our lives, as best we can. However the band-aid stopped working. So I’m going to start the blog today with how Bella describes her headaches as they come on in her own words.

In Bella’s own words:

Starts and spreads with severe crushing pressure.
extreme nausea and pain 1000/10
Brain starts to burn like fire
Crushing 100/10 pain spreads from base of skull to just above left eye
Black eye feelings severe from the pressure
I stutter severely with sudden onset and stays for duration of headache
SEVERE HEAD PAIN. Feels like skull is breaking apart under the pressure
Altered reality
(pushed on spot on skull, vision turned to blue)
Forget where I am and who I am and who I see
Pours sweat
(Past catatonia. Total paralysis, loss of hearing and sight)
labored breathing
happens at rest, with lower heart rate
Chest pressure and back pressure
head popping like channels opening all around head that makes ears and nose leak
NEVER GOES AWAY. Steroids only dampen it.
Pure Hell

This list was made last night when we were finally able to dampen her headache with the use of steroids. We’re not sure why, but last night and the one before the only way to get her any reprieve was that alone. However I should also say that every day with this intense headache, or pressure or whatever it is, has been worse than the last. Higher amounts of pain, longer duration, and every time it’s so heartbreaking to see. Bella’s said that she would rather go through the ablation surgery from last week constantly for the rest of her life, than the pain afflicted by whatever this is.

Tonight as we’ve been trying to keep the pressure from building and the fires burning all day, we’ve run out of relief. The steroid is having no effect anymore, and we’re hoping we can keep her ok through the night. Hopefully the doctors will think of something else that could work, but we still aren’t sure of what’s causing the pain.

A new thing we may have caught, which is surprising a little to me, is that we have thousands of blood test results that are pretty unremarkable, which is a pain because if something easy could be found I probably wouldn’t be writing, and the peculiar part is that she’s had confirmed infections that were cleared up with normal meds where her tests didn’t show she was fighting off an infection. Her white cell counts are always in the normal range.

I bring this up because, while in the ER, she had a CT of her chest and sinuses. The CT showed an acute sinus infection and inflammation; her blood tests showed no infection. For those who don’t know, doxycycline is a more continuous part of Bella’s treatment to treat long term infections, as well as it proving to be one of the few things to give her some relief in life. It pretty much just takes the edge off. Bella is showing signs of infection based on her vitals and the CT, but her body isn’t reacting. Judging by her bloodwork over the last few years, just about every single time she had an infection or some acute illness, her body didn’t react.

This is a simple new discovery, that was overlooked because we were looking at the larger issues, like the tachycardia, the headaches, and overwhelming pain on a daily basis. We were waiting for her infectious disease consult to come back to try something new, like maybe treating the sinus infection, especially since the steroid isn’t working and her immune system isn’t seeming to respond to it, and we’re looking for any way to get rid of this headache from hell. There’s no guarantee it will work, but anything is worth a shot.

Other than that we have a recording from our meeting with the doctor earlier today. In it we have her saying that one of the doctors she consulted and looked over Bella’s file quite extensively does not believe we will figure it out here, and that her doctor in Stanford who’s also working on research for patients like Bella would be her best bet, other than the NIH. So we don’t get a break, and we have to raise the money we’ll need to travel to Stanford, get Bella her testing, and maybe even a treatment plan set up. They were willing to give her enough steroids to get there and take along the way and whatever else she might need for the trip. They’re also going to try to get her medical transport and transfer her care there, but we were assured it’s a very long shot.

Looks like we aren’t getting out of the hospital tonight, we may still be able to see the infectious disease consult again since he rounds late, and if not tomorrow. We’re hoping tonight to try and see if we can get this under control with something else. Also trying to see if there’s a reason for her body not reacting to infection or if that’s something else.

Sorry I’m not more organized, and I hope people can follow a bit of this. It’s been a long few days, and things just keep popping up new or different. I just wanted to make sure to keep anyone who reads informed. So I’ll end this for now, and anything new I’ll update the post or start a new one tomorrow. Wish us luck tonight. Thank you for reading, and as always please follow #helpthehero on Facebook and Instagram for Bella’s updates and relevant posts. If you’re able to help donate to our travel fund please hit the link on the homepage, anything at all is appreciated and if I ever come to a position of power I’ll make sure you all get special privileges, within reason. Thank you for reading, please share far and wide, and remember I love you.

sincerely,
Brett

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