Colleen[6]: WTF??!

[mdlbear]

Colleen was doing fairly well when I saw her this evening: bored, but getting resigned to a long stay. But now, it seems, they are getting ready to send her home with some kind of portable IV pump. WTF??!

Update: 11/22 2pm She'll be moving to a skilled nursing facility, no earlier than Monday or Tuesday, and will stay until it's safe for her to be at home with less than 24-hour care.

OK, I know it's possible, in theory. People do it -- I've seen people walking around with PICC lines, now that I know what to look for. BUT: she can't care for herself at home -- she isn't even able to walk the distance from the front door to the bedroom by herself at this point -- and there isn't going to be anyone home during the day to care for her. We're going to be gone during Thanksgiving weekend. The bed's too high for her to get in and out of safely. She needs a walker when she's this weak, and she can't handle both that and the IV pump.

And when something inevitably goes wrong, it's an ER visit.

They don't even know at this point whether it's going to start healing or whether she's going to need surgery. I have no idea how long this is likely to go on. Or what to look for to see whether anything is going wrong.

The last time they sent her home too early it was a freaking disaster. The time before that it was merely a nightmare.

NOT a happy Bear.

Update: Saturday 08:30 It looks as though they're going to send her home tomorrow. It's probably going to be impossible to fight it, so my plan now is to ensure that she can use a walker or a wheelchair without having to also deal with a pole full of IV crap, make sure it's safe for her to be home alone for most of the day. We'll either have to cancel LOSCON or arrange for someone to stay with her. She may have to stay in the sewing room for a while if the bed is too high.

Comments

wrong, but common

[carmiel.livejournal.com]

blame the bean counters at the insurance company.
Sorry to hear this. Is there a patient advocate you can talk to?

Re: wrong, but common

[mdlbear]

They may not be there on weekends. Will try.

Re: wrong, but common

[capplor.livejournal.com]

Ask for the ombudsman. I think they're required to be reachable in emergencies. YOU define emergency in this kind of case.

For that matter

[capplor.livejournal.com]

Remember THESE words: "Let me speak to your supervisor"

Good Grief!

[lisa-marli.livejournal.com]

Definitely keep her in there until after Thanksgiving. They might be thinking "It would be nice if she could be with the family at Thanksgiving." Improve the morale, even though it is an EATING holiday and she can't Eat! Mutter! But to add insult to stoopidity, you weren't planning to be home of the holiday, so it is completely unsupportable. The fact that Colleen wants you to go to Loscon says even though she'll miss you terribly, she wants the family to have its regularly planned activities. And sending her home before Thanksgiving would make the Planned Holiday of Travel impossible.
I know - Hit Them Below the $$$$ Money Belt. Definitely tell them, No Way! Unless they are planning to give her 24/7 In Home Care!
And the home bed is not safe for a convalescent Colleen because it is so high. So you will need a Hospital bed, and a spot to put it.
And that 24/7 in home care.
Wouldn't it be cheaper to keep her in the hospital?
Also remind them, you have a LONG house. She needs to be able to walk the length of the hall in the hospital and back again, before she will be strong enough to live at home.
So at least until she's strong enough to walk through the long house and climb safely in and out of sleeping mountain you call a bed :D, you want her to be safely in the hospital.
She might actually make that point before she is through healing, but I'd say that it is 2-3 weeks off, earliest.
And by-the-by, yes people do IV feedings at home all the time, many people have weird intestinal states and need IVs to keep going for the rest of their lives. And they want to lead almost normal lives outside a hospital. So it has been made to work. But one does need to be in an otherwise normal healthy state, except for the IV feeding part. Colleen isn't there yet.
Big Harold got his IV antibiotics through his Central Line for a number of weeks after we left the hospital. We even traveled by car from Denver to home with IV antibiotics. Giving them to him in the morning before we left for another day of driving. His only problem was the dosage was too strong and he had a bad reaction to that. But the IV antibiotics part of the process went just fine.

[tetralizard.livejournal.com]

I would definately Hype up your concerns if she would be going home to an empty house. Talk to someone right away. The main dr may be gone on the weekends, but you can always get a 2nd opinion. Ask the What IF's of Questions. Also if she was at home she would probably end up doing something, lifting something, cleaning, straightening something, and hurt herself even worse. Og and I are definately praying for you two & kids.

[braider.livejournal.com]

Would your insurance cover a nursing home? There, she would have 24 hour trained staff, but it's got beds in slightly less-high demand.

[mdlbear]

Kaiser covers it for a while; we don't (through my stupidity) have separate long-term care insurance.

[randwolf.livejournal.com]

They sprung the discharge plan on you? Oh, lovely. My sympathies.

[joecoustic.livejournal.com]

I'd look into what braider mentioned. When my mother broke her hip she ended up going from the hospital to a nursing home that also housed one of the better rehab facilities in this area. If your insurance covers it and someplace might be available it might be a perfect solution.

I agree that you should try to talk to someone at the hospital as soon as possible.

[drewkitty.livejournal.com]

I agree with everything that lisa_marli said.

There are two lines of attack here.

1) Assert categorically to Kaiser that taking her out of the hospital will cost them a LOT more money in the long term. Talk to the ombudsman. Think about a lawyer. This is not a time when raised voices would necessarily be out of place. The point that no one will be there during the day to care for her is a cogent one. You are the only breadwinner so you simply CANNOT do this by yourself.

A powerful argument is this. The patient, in her own home, will be horribly tempted to eat. If she eats, she will get sicker and quite possibly die. Sending her home is quite literally setting the patient up to fail.

2) If taking her home is inevitable:

a) Refuse to take her home until YOU are convinced that you and another family member (Chaos by default, perhaps someone else) are completely briefed by the medical professionals on what care is required, how to accomplish this care, and who to call when help or advice is needed. All of this should also be in writing.

If they are unable to provide this, clearly it is not safe to take her home.

b) Put together a care plan for making sure people are there to help take care of her. While some people you know are likely to volunteer to help, a 24-7 caretaking schedule should be established and arrangements made for both professional nursing and respite (caretaker rest) care.

Having her alone in the house at any time is Simply Not An Option.

c) Talk to your HR / Employee Assistance Program / etc. on Monday to see if there are any other resources you can draw on.

This is not a time for Mr. Nice Bear. Best wishes to all your household in this time.