Bella has been at the hospital since my last post. She stays there, and I bring Jack wheb I come in the morning. The nights are long, with increasing issues and little to no help. She’s been having cluster headaches every day, they couldnt get her diet orders correct for the first few days, and it’s just been hell.
We have the doctor overseeing her recorded saying that he doesn’t know her case, and basically refuses to learn it, or give her access to the saline as per her request to try and stop some of the autonomic issues. Since she’s admitted due to the SVT episodes she keeps having, they basically are ignoring the other things that keep happening. Luckily after a long battle, she got a quick nerology consult, which im still not entirely sure what the outcome was. However they’re not going to try anything unless they change their mind or think of something else. MRI, MRA and MRVs have been ordered as per her PCMs request, but it’s one of those we’ll try to get to it, and see what happens type of things.
They’re pushing a new med to try and keep her heart rate under control, theoretically to stop having the SVT and Tachy episodes so often or to stop them entirely. She tried it this morning, ni real change in HR or anything, but it did make her weaker and more tired. Theu want to try a few more does to see how her body handles it, but we’ll see.
Bella has been trying her hardest just to make it through the days, and it’s always frustrating with a new doctor. They admit they don’t know and refuse to learn because it’s not their usual. He did call her PCM and a Cardiologist she’s worked with for years, however he’s pretty much just putting it on them, while they’re not here, and he’s uncomfortable writing an order she can ask for as a preventative.
Worst part is it isn’t like a pain pill or something addicts are looking for, it’s salt water, to which they don’t even need to give her an IV or anything for, because her port was accessed the same day before her initial visit to the ER. It’s been documented many times that it’s helped her, it’s in practitioners guides, we have provided to the doctors, and she’s both warned that these autonomic attacks can occur without notice, and that’s the quickest and easiest way to stop it, but the doctor is unsure and doesn’t feel comfortable unless of of her other doctors will write it. Which we can show him her home order for fluids and supplies, but he doesn’t care, so if and when she crashes again, they have to hopefully get a hold of who’s on call quickly before she has too severe an attack..
I hate hospitals, and Unfortunatly they’re a nessessity when she’s beyond the care i can provide at home. I can’t stop or prevent SVT, the cluster headaches are becoming more frequent, and her overall quality of life is going way down, and it’s not that high to begin with living with this chronic condition.
We need to travel. California for Stanford’s ME studies. Alabama for a genetics research and personalized medicine based fully on her genetics. New York for a special neurologist, who may be able to fix everything if she has a specific condition that fits with all of her symptoms and current diagnoses. The NIH is still waiting on a few more tests that were ordered wrong and resent. It’s alot on a person who’s healthy, let alone that can barely get out of bed most days.
Its been a long 5 days so far. With the introduction of the new medicine, because the next step for them would be an ablation, and how she reacts to it being the determining factor of how long her stay will be. As we try to coordinate everything else we need to accomplish because we know the likelihood of this being any help is rather low, and judging by today’s trial its not going to help anything.
But that’s enough for now, i just wanted to let everyone know how her stay has been thus far. It seems like they’re trying to push her out probably tomorrow, but that all really depends on if she keeps having an adverse reaction or if things get worse. I would say also if things get better, but they’re not even listening to us, who have been going through this for over 5 years. I fight hard to keep her stable and in as much comfort as possible. When they specifically deny these things we know help…
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Love you all,