2 hours of sleep on a Wednesday.

Im not sure how much of this I already said, but it’s been a long, long last few days and if i already said it, it all needs to be said again. I apologize in advanced, im going off of very little sleep, and not fully functional currently.

Leaving the hospital on Friday after Bella was admitted with several blood clots and to try and establish an IV pharmacy for home care, we had neither. The doctor we saw once, for about 3 minutes, said the clots are chronic, theyre not going to treat her, and since she’s medically ok at the moment, she goes home… After having to argue because she’s untreated, and after arguing that it’s not safe to send her home with no care for her PICC line, they finally allowed a case manager to come in to help…

The case manager was polite, but said she couldn’t help because the doctor overseeing her stay is not writing any orders, so it again falls on her PCM to figure out. We asked for her supervisor, she had no problem with that. When he came in, he was very soft spoken, but kind of a dick. Said he’d call for us, and talk to the doctor, see what he could do, while at the same time telling us we’re in the wrong, without actually coming out and saying it. Not going to lie, wanted to just slap him.

Bella calls her IV radiologist, who placed her line, and he agreed that we need to stay and get it figured out, because it puts her at too much risk. Also told us to ask for a team meeting, and that we could call him back when they’re in the room, and tell them what he thinks.

Requested it maybe four times before the case manager supervisor guy came back in, alone. Told us that they can not help with the pharmacy, and the doctor has discharged her medically, and we can get our things together and go, or he can call security to escort us out…

So, she still has blood clots in about 6 veins around her PICC and in her arm. With no plan of how to get rid of them, or what to do to help ensure none of them break off and go to her lungs. We still have no supplies, and no way to keep her PICC safe, clean, and functional. It was more or less just a waste of 24 hours, saying good luck, you figure it out… Like we have any power, or we can magic away infection, or materialize supplies. It’s been far too long, it’s too unsafe.

We go to the ER and they don’t even run tests anymore, when they have on record her doctors recommending her to go in. We cant get help even when admitted, because no one wants to take responsibility. No one wants to fight for her, and as much as we do, we fan only do so much. We need a doctor who will fight for her, but it seems everyone is just standing idle. They don’t know, and aren’t even trying to figure it out. Nor do they want to listen to positive test results and our own research. They don’t listen as we scream at their face to even try our way, expecially since everyone is simply at i don’t know…

She’s just left alone, with me and Bbygirl to figure it all out. Our little family, trying to take care of one another, with so much going on, and so little power. It’s left to us to care for her, keep her sites clean and infection free, to keep her stable enough, to fight with insyrance, and pharmacies, and just trying to get the basics she needs to even stay alive.

We had an appointment today with her PCM, who actually made us feel like he’s trying. We still have no IV pharmacy, but we’re trying another option, that gets us half way there if it works, and we’ll go from there. We’re also having her Lyme doctor call to try and see if he can talk one of the pharmacies he uses for his other patients to take Bella as well, but both are kind of long shots. Beyond that we may have no other option than to move or somehow come up with $1300+ per week just to get what she needs from a supplier. We’re stuck between a rock and a hard place, and the walls are closing in. We try every day, and today we fought hard.

Please share far and wide, we don’t know our next move, maybe someone else has a clue. Thank you for reading. Until next time.

With love,

Brett

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