Never ending

Just a quick little update. Bella was feeling worse the day she was discharged, they brushed it off because it had already been so long and they couldn't do anything. Last night she developed a fever, 102.9F. We gave her fluids, rotated tylenol and advil, and even gave her a detox bath just to try... Continue Reading →

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... Continue Reading →

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... Continue Reading →

Can’t help feeling hopeless…

Hopefully this all makes sense. I haven't been sleeping well at all, as well as very little. More and more each day we lose faith. Every single day we reach out for help, hoping the doctors will finally do anything. We're losing our battle and there's nothing we can do. I didn't make this but... Continue Reading →

Short and bitter

Things are getting MUCH worse for Bella this week.. Throat swelling shut, whole body welts happening literally in front of our eyes. Now the severe brain swelling is Back that takes her sight, hearing, any comprehension of where she is, who she is or who I am, severe MS-like speech.. Which then takes all her... Continue Reading →

Updates and allergies

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... Continue Reading →

Happy New years.. I guess

Sorry it's been a couple of weeks since I've written. Nothing has changed for the better sadly. Everyone, including myself, has been sick on and off with Bella staying pretty much consistently worse. She's now having anaphylactic reactions, and we're not sure what exactly from. Her throat has been closing making it hard to eat,... Continue Reading →

Letters to the doctor

Bella is doing worse and worse. There's nothing we can do to stop it at home. She just writhes in pain, hoping something will take the sickness down until she literally cant take it anymore and has to be seen. She's too weak to speak, can barely lift a cup to drink, can barely eat... Continue Reading →

2 steps forward, 3 steps back

Its hard to keep writing when it feels like everything is just happening the same over and over. We found a new IV pharmacy and talked to them, had Bellas doctor send her orders, and just today we found out that theu wont take Bella. theu determined her care innappropriate for home infusion... all the... Continue Reading →

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