2 weeks (mini update)

Bella has been admitted for 2 weeks now. She’s gotten multiple images done, a lumbar puncture(spinal tap) and plenty of blood draws. She’s even caught a cold and continues to do worse every day.

They wanted to send her home Friday, but all the planned home care fell through. Yet again the pharmacy doesn’t like her treatment plan, and don’t like giving her the antibiotics needed. So they’re trying to modify the doctors orders, and not give her the antibiotics, in order to set up IV supplies and fluids and ambulate her home.

The results from the spinal tap will take a little time, some samples sent out to mayo clinic for specific testing and some wasted doing tests they know wouldn’t yield results. As Bella gets worse they don’t want to look into or help anything past what was already done. So tomorrow, unless home care falls through again they’re going to send Bella home in an ambulance and it’ll be up to us yet again to try and keep her going.

It’s just so frustrating. Almost like everyone is actively trying to impede our progress and ensure she doesn’t get better, but we don’t give up. It’s been hard on all of us, but no one cam even imagine the horror she lives every day. She repeatedly goes through these tests to get help, only because we cant afford it without it being covered by insurance. It’s hard enough just buying one medication that’s absolutely necessary. It isn’t fair, but what else are we able to do?

Im sitting here as Bella is finally able to rest a little. I’m still a bit restless but so tired. It’s been a long two weeks. Im sure it doesn’t end after this, especially with them ambulating her home, but I’ll be happy to be home without having to run back and forth.

On top of all of this I’m still doing school, taking Savayah to speech, and trying to save our house. I was able to get the bank to look into it and they found some money that got put into the wrong account but we still owe quite a bit, and they’re not working with us too well. If i could afford a lawyer i would, but since i cant, im going to continue to try and work out a deal. It’s just stressful and im sorry this part is a bit of a mini rant.

Our friend Grace started a new GoFundMe that i have put in the link in the description on our homepage. Please if you can help us in any way, we will be eternally grateful. Also please share so maybe someone can see our story and maybe help guide us or give us new ideas. Either way thank you for reading, and thanks for spending the time. Night everyone, more to come when i can think a bit more clear.


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