Sorry it’s been a while. Bella has been admitted to the hospital for the last week. She’s not able to make it to her appointments. She’s unable to do anything much anymore. Her throat closes when she tries to eat just about anything. We’re down to about 4 things that she’s able to tolerate. Every day i go home and make her food so she can at least get something in when she’s able.

Nothing is really being done. There’s a patient manager that’s trying to get Bella her IV pharmacy going again, which is still uncertain, but hopefully that works out and that’ll be one less stress. Other than that however it’s mostly just trying to keep Bella alive. We got her admitted to run tests she needed done, but was unable to make it to as well as figure out a home care plan. Because as of now there really is none.

The biggest thing we needed done is Bella’s lumbar puncture(spinal tap). It was supposed to be done in radiology to make it as safe as possible, so they can test not only her Spinal fluid for infections, but they can also check the pressure and check for any possible leaks, as Bella is prone to them, and Unfortunately we’ve been unsuccessful in catching enough to perform the test when it leaks from her nose or ears.

While admitted hospital policy is that it’s done bedside first. Only if there’s complications that they’d go to radiology. Which means the CSF leaks will not be assessed or the pressure of her spinal fluid which could explain a bit of her symptoms. Also with her unable to heal well from the EDS, it’s possible that the procedure can cause a leak as well. So we have until tomorrow to decide if she goes through with it or not, and they’re unflinching with the policy in this instance. It’s Definatly more unsafe, especially as Bella is already so bad… We don’t know what to do.

We’re essentially just trying to prove yet again what’s wrong and though the doctor over Bella’s care this stay has been wonderful and is listening, the hospital policies are making it much more unsafe. Not to mention allergy saying the only way they can really assess what foods she can have is to set her up in the ICU and have her take small bits of different foods with an ENT team on “standby”. Took me outright saying it for them to admit that they are there in case she needs a trach tube…

Lips and throat swollen, body covered in hives, no answers to why. Happens with all but 4 foods that we can find. List growing smaller and still unexplained.

The Ombudsman came in to talk about Bella’s open cases, and also said we were dictating her care. Which may be us refusing the things she’s allergic too? He stumbled and said yes, but to also tell them when they do that too.. we asked him what he was saying then and he didnt know. But also I’m not allowed to change her PICC or Port bandages while she’s admitted, which the hospital and Bella’s doctors trained me to do because the home nurses refused to learn how to use her special order needles and bandages. Since the hospital has messed it up so bad before. We had permission from the doctor overseeing her, but I guess others didn’t like it. We’ve never had a problem before, but i guess now if it come around to it again, Im only allowed to supervise.

The last time “they” changed her PICC line.

Bella got much worse last night. The emergency response team (EMeT team) was called again and came in around midnight. Bella’s hear rate in the 190s and 200s with no exertion. Her spine and head feeling like they’re on fire and ripping out of her body. Almost losing touch with reality unable to do anything but crunch up into a ball of pain. She crawled into my lap put her head on my chest, and just started crying as i held her.. thats when they called emergency services, we didn’t even know they did until they rushed in. I don’t know if i ever dealt more helpless. Unable to console her or be able to fix anything. Unable to even take a little of the edge off her pain. I can feel her body giving up and how hard she is fighting it, right on my chest..They gave her fluids and didn’t even want to monitor her heart knowing they couldn’t fix it with beta blockers. Just easier not to deal with it… The nurse looked at me and said that is not ok or safe and made them monitor her

We don’t know how to get help without making her worse. Without being safe and avoiding risks that can easily be done, but they won’t because “policy”. As much as we fight and ask for help and prove every little thing, do our own research, do every possible thing to move forward… Still nothing is done, nor will be done unless it’s at the expense of her. With every positive test they ran, with all the imagining that needs immediate help. Video below:

https://vm.tiktok.com/qJeCVL/

We’ve been trying to get Bella treated for 6 years now. Every day i watch as she gets worse, and as much as I try to do to help, we’re just not making it. We’re losing everything, and we’re alone together. We’re losing hope. We need help now

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