Another appointment with Bella’s PCM yesterday. We’re out of supplies, can’t get more without a pharmacy, and don’t know what else to do. Doc said he’d work on it, but it’s been about 3 months now without them being able to figure it out, even with us doing most of the legwork. It’s not even the biggest annoyance anymore. It’s just going to mean more trips to the ER due to hypovolimic shock and other complications on the horizon, until they finally admit her until he safety is more assured. We’re working on it.
Bella’s throat has been swelling and closing on and off the past few days, for hours at a time. She’s been unable to eat much of anything, can barely take her meds or even get water to go down without feeling like she’s suffocating. Which we’ve even been to the ER for over the weekend. Got an ENT referral, but it doesn’t help in the mean time.
After the ER visit Bella also started developing what i can only describe as hives. They’re all over her body, legs and back. It might be the reason her throat has been closing. It’s also not the first time an ER failed to recognize Bella was having an allergic reaction… Losing more and more faith in emergency medicine, but at the moment we’re at a wait and see point of time. Waiting for her doctor to give us a call back since we sent over images of her hives. We may even be told to go back to the ER when that happens. Everything is just piling up. It’s more than we can bare and figure out on our own, but more and more we’re realizing that the only way to move forward is to so it ourselves, and hope for the best.
Other than that, we want to slowly start a protocol from Bella’s Lyme doctor. He more or less have us guidelines to what we’re aiming for treatment wise, but we have to go on the meds slowly so it doesn’t mess up her system more than it already is. May take a month or two just to get up to the “starting” dosage. Possibly longer, but without any of it being IV Bella’s body cant process it, not to mention her throat closing or if she has a bad reaction to anything… But we have to do something but no plan for that is given no matter how much we ask. With out her IV medications she wont survive a day in hypovolimic shock and without the pharmacy to supply the lyme medications we have nothing we can do at all.. I have begged and pleaded and laid it out for her doctors and they all know and even fully agree yet don’t know what to do to get a pharmacy to give her her medication written and even covered by her insurance. Yet they also have NOT kept her safe or gave us a plan to keep her safe in the absence of her life dependent daily IV medications either. We don’t know what to do.
Hopefully we won’t spend most days in the ER or admitted, but again it’s all on us to figure out no doctors helping, even when and if we get the IV medications. What’s a side effect, what’s an allergy, what is just making things worse… How to distinguish between them is up to us, so that should be bad too..
Also Savayah has dental surgery on Friday and we’re just trying to make it to then. Her teeth have been hurting from her grinding, and making it hard for her to sleep, and due to sickness she’s already missed the surgery once. Just gotta make it to Friday. Then make her as comfy and happy as possible through the weekend, while also trying to keep Bella balanced enough to stay home.
I really don’t know what else life can throw at us at once. We’re still trying to save the house, but outlook looks thin on that one. We have nothing left to give, nothing left to lose but ourselves, and desperately are reaching out for help. We don’t know what else to do, but doing nothing is only making things worse. We need help, we need guidance, and we need friends. It’s just so hard to do any of those things from home, especially when most other social media sites don’t allow us to link to here…
We’re having a mold inspection today as well just to rule that out, and if it happens to be mold, i don’t know where to even turn at this point. Even the camper has a gas leak, and in winter we are going to need heat.
Sorry about the rambling, I’ve been exhausted and weak for the past few days, with a touch of hazy mind. My doctor didn’t seem too concerned, but we’re all still pushing forward. Please if you can help do, either monetarily, or even just some encouragement or advise would be nice. Even if we cant take it because we’ve already tried or it just won’t work. We appreciate you reading and sharing our story/life. You guys are awesome.
With love, Brett