Disappointment abounds

Today Bella couldn’t take the pain anymore. We went to the ER. Her head was in a pain saying headache or migraine couldn’t even begin to explain. The pressure and pain making her feel like her head was on fire.

I usually have pretty low expectations when going, but at the very least they provide assurance that there’s nothing else going on we didn’t know about. Some thing easily treated like an upper respiratory or sinus infection. Today, even I was surprised.

The doctor came in after talking to Bella’s PCM. Listened to Bella describe the pain, barely able to get the words out, pleading for help. The doctor said it’s a chronic condition, she’s not going to be able to help, and she’s not running any tests. Just asked what drug Bella thought would help. Like that’s why we came… She went for help and was more or less refused.

We don’t know what to do anymore. We’re left on our own, and even if there’s something new or way too much for us to handle, we have to figure it out ourselves… All we get anymore is “I don’t know”. Even with the IV pharmacy we don’t have anymore. Bella needs her supplies, or she’s a huge infection risk, because we don’t have the supplies to keep her going. We can’t keep the PICC site clean. We cant do it on our own, and “I don’t know” isn’t cutting it.

We’re lost and trying to figure it out on our own. Trying supplement protocols, trying to find a way to get the IV pharmacys to start giving us supplies again, trying to even get the doctors to listen… Researching, asking, pleading, crying….

That’s not even counting normal life. I’m so tired writing this, I can only hope it even makes sense. It’s all building to be too much and we don’t know what will happen. We’re scared. I don’t know what else to say tonight, so i think I’ll leave it at that.

Please share our story, maybe someone out there could help. Maybe someone might see this and be able to help… Thanks for reading.




Savayah lost her other front tooth. So now she has both missing and it’s the most adorable thing ever. Ended it on a happyish note. Even in all this hell around us. Goodnight all, I’ll write again soon.

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