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Originally posted by CHAS:
SK:

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I think that’s probably premature and I can’t help but wonder why the doctor said this, is he trying to keep us from getting out hopes up?

I think they do that. Maybe it keeps them from attacks from failed expectations. They do not want to say anything that could be seen as a broken warranty

Based on my personal experience, different doctors approach serious conditions with very different attitudes.

During my long journey with my knee and the persistent infection, I certainly found this to be true. The orthopedic surgeon was always upbeat and optimistic, even as things were worsening. The infectious disease doctors, one in particular, were advising me that I might lose my leg or perhaps my life to the persistent infection. Other specialists such as a cardiologist and a nephrologist focused on their specialties and didn't really comment on the knee. The plastic surgeon was, to my mind, the most objective. She kept me informed about what she was doing through the long sequence of surgeries and what both good and bad results were happening. She was very persistent in continuing to work on my knee while she saw the possibility of saving my leg. After finally eliminating the infection and successfully closing the wound, she said that she had never performed so many surgeries on an adult, although she had done so on children where there was a large upside in terms of lifespan and quality of life if they could recover.

In short, some doctors hope for the best, some try to prepare you for the worst, some are neutral, and finally, one or more will put exceptional efforts into treatment as long as there is some expectation of success. I hope your brother has one or more of the exceptional doctors engaged in his care.

I'll continue to keep him in prayers.

Big Al

Thanks for all those comments, Big Al! What an experience you've had! How are you doing these days?

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I hope your brother has one or more of the exceptional doctors engaged in his care.

Yes, I hope so too! I think he does, but I get a little nervous when I think about some of the things my mother and sister-in-law share with me...

Also, now he's on a different floor and so the team of nurses are all different, although I think most (all?) of the doctors are the same.

Anyway, one day at a time...

I wanted to give an update about my brother... He is doing "ok," although his recovery continues to be very, very slow.

They took him off of the hemo-dialysis, which is a really big deal bc it means his kidneys are working (yay!) and it means he doesn't have to have that tube in his neck.

He still has the trach in place but they think that might be able to be removed soon. Fingers crossed. He is able to talk, sort of, even with the trach in place, which is really good. It's like a little whisper, but it makes such a difference. He can say short sentences, he makes jokes, it's such a huge improvement!

He still has a feeding tube in his stomach, but they think the damage to his esophagus may be healing, so we are really hoping he can start to have liquids soon. I think he gets very uncomfortably thirsty, and it would make a big difference if he could have some liquids going down his throat.

He remains, however, too weak to do the kind of rehab they want. So they do some modified activities in his room.

He still can't move his left side, but he's hardly doing the rehab/therapy consistently because it seems like every other day he's had to have some procedure and that makes it hard for him to get into a routine. But as they reduce the number of tubes he's hooked up to, this should get easier.

My mom is quite worried bc it's still not clear what his neurological situation is, and it's unclear how much better he can get once he's better able to do rehab.

The other concern is that right now they're wanting to move him to a different hospital, which is causing a lot of distress and worry to my mother and sister-in-law bc it would mean he might be in a town anywhere from 2 to 4 hours away.

But why the move? He's no longer sick enough to be in ICU or whatever the level one below that is. This is great of course. But he's too sick (and too weak) to be at the level of care where he's doing rehab three hours a day. Apparently there's something called transitional care, but the hospital he's at doesn't have a transitional care facility... this doesn't really make sense to me... But any way, they were going to send him to a hospital 2 hours away, but then that hospital said he's not "sick enough" for their transitional care, so now they are trying to figure out if there's another place he can go.

This, to me, seems really awful because he is very, very depressed, and seeing his wife, mother and daughter are hugely important. But if he's farther away, it's going to be really hard for them to visit him. Right now, my mom and sister-in-law tag team so that one of them is there a lot, usually my mother is there twice a day, once in the morning and then again once in the evening, she likes to go when the nurses change their shift. And my sister-in-law goes every day, usually after work. Also my mom is helping my sister-in-law by driving my niece to and from school and so on. And, btw, my sister-in-law works full time, and my mom is 79 years old... So if my brother is some where far away, it's just going to be a big challenge for that aspect... and maybe they won't be able to go every day, and certainly not twice a day like my mom does.

Sorry, this got quite long...

There's not a minute when he isn't on my mind. I wake up in the middle of the night thinking about him. One of the first things he said when he started to talk a little bit was that he felt sad. He hasn't said too much about his condition, but my mother said he clearly knows that he can't really move on the left, and he's too weak to move much on the right either. My heart breaks for him.

But, to end up on a high note... He has been in the hospital for almost two months now, and today, they were able to take him outside first the first time. My mom said the weather was wonderful, a beautiful spring day, and the hospital has a roof top garden. They gave him a shave, and he, my sister-in-law and my mother went up there and they all sat in the garden, with the gentle spring breeze and lots of plants and flowers. <3

Oh, my goodness, the idea of him going outside and sitting the spring air brought tears to my eyes.

The idea of moving him hours away is just maddening.

I'm glad to hear of the improvement and hope so much that it continues.

Thank you MA!!

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The idea of moving him hours away is just maddening.

Ugh, and I just got a note from my mom that it's pretty much all decided. They're going to move him to a hospital that will be about a 1.5 hour drive (one way) from either my sister-in-law's house or my mom's. Sigh. She said they think he could be there for maybe three weeks, and then he would come back to the hospital where he is now. At least he won't probably get moved until after the long weekend.

But, looking on the bright side, if this new facility will be able to do consistent rehab with him, and give him the absolute best care in that regard, well, really, that's the most important thing.

The distance is a problem because you need to stay on top of the new place. Really examine the new "transitional" facility. Some are better than others. My mother-in-law was in transitional care a number of times. None of them were what I would call a good experience. Pay close attention to the kind of support they offer and how closely they monitor the patient. You say it's a hospital. That's different from a rehab facility. Maybe that's a plus.

Good to know about the improvements. That is great. Thanks

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Originally posted by Piano*Dad:
The distance is a problem because you need to stay on top of the new place. Really examine the new "transitional" facility. Some are better than others. My mother-in-law was in transitional care a number of times. None of them were what I would call a good experience. Pay close attention to the kind of support they offer and how closely they monitor the patient. You say it's a hospital. That's different from a rehab facility. Maybe that's a plus.

+1

Thanks P*D, I'll encourage my mother to follow up on these details, and ask about the facility. I think it's a hospital, but I could be wrong. I will confirm, though, this is an important detail.

He's had such good care so far, really excellent. It would be a shock and huge set back if this new place isn't at the same level.

But it also seems like he doesn't have any choice in the matter at all. Which is super frustrating.

They are basically saying he can't stay there right now because he's better enough to no longer fit in their ICU or advanced care facilities, but he's not strong enough or recovered enough to be in the next level that they have. I suppose in terms of economy of scale, it makes sense that this one hospital would not have all these different specialized facilities, but yeah, the whole thing is not IMO patient-centric.

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They are basically saying he can't stay there right now because he's better enough to no longer fit in their ICU or advanced care facilities, but he's not strong enough or recovered enough to be in the next level that they have. I suppose in terms of economy of scale, it makes sense that this one hospital would not have all these different specialized facilities, but yeah, the whole thing is not IMO patient-centric.

Yes, that was exactly my MIL's situation. We were fortunate to have a Dr. in the family who could ride the transitional facility to ensure proper care, and move her when we deemed one of the facilities was more of a warehouse than a rehab center. They're often overworked, over-stretched, and under funded.

I really don't know anything about the institutions in that area. I have no facts. I'm just emphasizing the importance of keeping "your eyes" open and being strong advocates for the patient who cannot effectively advocate for himself.

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more of a warehouse than a rehab center.

What a nightmare that must have been for you all

I'm praying, SK.

Human life seems so fragile, random, and cruel sometimes.

I wanted to give an update about my brother, and then I'm probably going to delete this thread....

So, he's doing ok-ish, and in some ways is making great progress. But we're now at the stage where getting insurance approval for things is becoming an issue, and my mom and sister-in-law are really having to fight for him.

But, here are the good things: he no longer needs dialysis (yay!!). They removed his chest tube as well. And hopefully (fingers crossed!!!) they'll take out his trach in a few days. There's protocol they follow first, and that has been put in place, so I think it's going to happen.

That would mean the only tube he has left in him is the feeding tube. And this will go eventually as well.

He is able to talk now (the trach has a valve in it), which is also great.

He is still weak but getting stronger. Before, when they sat him up in a chair, he couldn't hold his head up, and now he can. A few days ago, my mom told me he was sitting up in his chair for three hours, this was a huge advancement.

He can have food (small amounts, very soft, but food nonetheless) orally as well, which is a pretty recent development, and also hugely important for his recovery.

So those are the good things....

The bad things include:

He still can't feed himself (although now I think this is only a matter of time).

He is so weak that he can't move himself in the bed, and you know the problems that causes. Again, this will resolve over time.

Also, because he's so weak, it's hard to tell which mobility issues are due to weakness (and therefore temporary) and which are due to damage from the stroke. He is not able to do much with his right hand, but he can move it, which is good.

And here's perhaps the worst one. He is not moving on his left side at all. Although there were glimmers a few weeks ago of him moving his left hand, that has stopped completely.

Because of this, my brother has periods of being very sad, depressed, angry... And this is heartbreaking.

So, now for the problems that relate to the kind of care he's receiving....

Because he was so sick and so weak, and also with all the tubes he had, they didn't/weren't able to start PT/OT (physical rehab)...

My mother feels that there were things they could have been doing, and they did a few times do some rehab stuff with him in his room, so she saw that there were activities they could have done with him but didn't, and she's worried that maybe he's lost the chance to regain mobility on his left if there was some window of opportunity that has now closed.

She thinks a big part of the problem is that the hospital is so rigid in its approach... for example, when he was on the ICU floor and the post-ICU, he had very good care bc the ratio of nurses to patients is quite low. But, those floors are not designed for patients to be there for a long time, so they just don't "do" rehab. A few times she was able to get someone to come to his room, and what they did was obviously helpful, but it was never daily or even close.

Then when he moved to the floor where he is now, the ratio of patients to nurses suddenly jumped, and she felt there was a big drop in the quality of care. This floor also is not geared toward treating longer-term patients, and not geared toward rehab. So they were going to move him to a different facility (I think I wrote about that) but then it turned out that the facility wouldn't accept him because he didn't fit their patient profile... So again, maybe a week passed of no PT/rehab because he wasn't well enough to move to the rehab floor of the hospital he's at, even though there were things they could have been doing with him, if only the rehab people could just get on the damn elevator and go up a few floors....

Now, finally, the doc has cleared him to move to the rehab floor. But, the insurance has to approve it first. Hopefully that won't be a slow process, but it's been a nightmare so far. My mother has actually consulted with her lawyer and is getting a referral for someone with a specialization in this area, bc she anticipates having to fight every step of the way.

Basically, she is absolutely furious about the whole process, it is not at all patient-centric, but completely constrained by insurance restrictions, which are based on algorithms, not people. She said it seems like they don't care about stroke victims, they just write you off, because the kind of care need for recovery and rehabilitation is so labor intensive and expensive. And everything has a pre-determined model (e.g., a four-week rehab course with specific parameters, and if the patient doesn't fit those parameters, there's no adjustment, they just get nothing) and that model is not based on the patient in front of them, but on these set descriptors. If you don't match, too bad for you.

There's more but you get the idea ... and this has gotten quite long.

The point is... he's getting better but it's hard and it's really hard to tell how much he can recover... and it's both heartbreaking and infuriating to think that his recovery may be (may have already been) inhibited because of these procedural problems.

If you read this far, thank you. Continued prayers and good thoughts are much appreciated.

does the state he lives in have an insurance commissioner? I would call the state insurance board (they provide oversight of insurance companies operating in the state), and discuss with the commissioner what is going on and see if they can intervene.

if not, i would also call the state attorney general's office.

i have had help from the former in montana, and from the latter in dealing with a medical care matter in the state of NY.

even if there is no clear path to recourse from this avenue, it is worthwhile to talk to these agencies to find out what path your family does have to getting your brother the care he needs.

and then you may need an attorney.

but you could also find out if the hospital has a patient advocate on staff and bend their ear.

He continues to be in my prayers.

I know something about how insurance can be infuriating because they don't want to pay for long-term rehab services, particularly if they judge that progress in recovery is not happening at a pace they deem satisfactory.

I don't have specific advice beyond the continual advocacy and appeals that your mother is making along with related interventions by doctors and therapists with the insurer. I hope for the best.

Big Al