Several people said we need to get her out of Evans (an army hospital) and get her in Memorial (a civilian hospital). Well, we went to Memorial to do her MRI, because she had to be sedated. As soon as we got there, the nurse there said thank god I was still nursing her, and told me about a mama that was nursing her 3 year old with cancer. Everyone at Memorial was pretty appalled at the way she was being treated at Evans, and they immediately tried to help us get her transferred.
Unfortunately, the doctor at Evans (Dr. Williams) doesn't want to transfer her for some reason. I don't understand at all, because she was trying to send her home yesterday morning, even though she couldn't eat or drink, stand or sit or talk. Williams wanted to send her home and have us force feed her popsicles until she snaps out of it. At that point, we didn't know we could take her to another hospital, so we thought the only options were bringing her home and have her starve to death, or get them to keep her in Evans. So we fought and had them keep her. That was yesterday morning, and then last night when we were trying to transfer her to memorial, Williams didn't want to let her go. I don't fucking understand at all.
The Memorial staff said they'd have to call up Dr. Williams and i'd have to request to stay at Memorial. So we did that, and Dr. Williams started yelling at me, telling me that we can't do that, that we have to come back to Evans because Joon is her patient, and we are only at Memorial for the MRI and had to come back to Evans immediately. Williams said she wasnt going to let us leave, and we'd have to sign out Against Medecal Advice, which would make Tricare not cover anything, and we'd have to pay for the entire hospital stay, cat scan, mri, ambulance, etc, and it would cost us upwards of $50,000, and then Memorial wouldn't take her. I started crying and handed the phone to my mom, and she went off on Williams, and told her we were going to transfer because she was incompetant and was just going to let Joon die.
After that, Memorial said they couldn't do anything for us while Joon was still Dr. Williams patient. They said all we could do is go back to Evans, and then complain to higher-ups in the morning, and if that doesn't work then just keep escalating it, and call our congressman and/or the media. So we had to go back to Evans, and my husband has some of his officers raising hell. But Joon is still at Evans, and Dr. Williams is still her doctor. I asked if we can just refuse to see Williams, and request another doctor at Evans, and they said we'd have to pay if we do that.
When we got back to Evans, we talked to one of the nurses that had seemed to be more concerned about Joon. She acted like she was on our side, and said she understood and she'd make sure she was in our room when Dr. Williams came to talk to us. Dr. wIlliams came up, and she brought some Sergeant with her, obviously to be a witness as she said all the right things and made us look like bad parents. She lied and said that she had never said to stop breastfeeding, she kept saying it was great that I was nursing and getting some nourishment into her. It was all complete lies! And she kept saying that she was trying to do what's best for Joon, she said that all signs point to viral ataxia, but she "wasn't going to take it at face value, and that's why I'm doing all these tests, to rule out everything else." But the thing is, she wasn't doing tests until we insisted. She just immediately assumed it was a virus, and stuck with that, and didn't do anything for three days, then tried to discharge her yesterday, and when we wre like "WTF NO!" then she started with the cat scan, MRI and spinal tap. But now she has this witness to all of her lies, and I'm scared it's going to make it imposssible to fight her, because it looks like she didn't do anything wrong.
I don't know what to do. I'm so scared they're going to kill her or cause permanent damamge. It feels like they're holding her hostage, and it's going to cost us $50,000+ to get her out of there. I was all ready tio just leave Against Medical Advice, and then deal with the money problems later, but then she said that Memorial won't take her if we do that. So then she'd be stuck without a hospital, and she'd just die at home. So I don't know what to do. I'm just terrified, there seems like there's nothing we can do.
Some of the things people here suggested were encephalitis, meningitis, and lead poisoning. There were a couple of other ideas, but I couldn't remember them whne I was talking to the doctor, so I'm going to write them down and ask when I can.
The cat scan, MRI, and spinal tap they did today are suppposed to show if she has encephalitis or meningitis.
I looked up the lead poisoning (just on wiki, because that's all I could do on my phone), and it sounded exactly like what she has, including several symptoms I didn't mention here before: loss of appetite, abdominal pain, vomiting, weight loss, constipation, anemia, irritability, lethargy. She has all of those. And yet the doctors didn't even consider lead poisoning. Why? Because I didn't mention living in an old house. So they didn't consider it, and waited for us to bring it up, and then tried to dismiss it, and we pretty much had to force them to test for it, and they only agreed because "Well, I guess it couldn't hurt." Yeah, it can't fucking hurt for you to DO YOUR JOB.
We asked about doing the protein drip in the IV, and she said couldn't do that because they'd have to use a larger diameter needle. I'm going to see if they can do that, but I'm scared to have them do it at Evans, because they are really shitty at placing IVs, they always take several sticks to get one in, and they've ruined all the veins in her arms and hands. When they sent us to Memorial for the MRI, memorial staff had to put the IV in her foot. Thankfully, that one is still in, so the people at Evans didn't have to stick her again. But I don't know how long that'll last, and I don't want her to still be there when she needs a new one.
I desperately want to get her out of Evans before they kill her, I just don't know how to do this. Deos anyone have any advice.