Waiting for Care After Catastrophic Brain Injury: Rita Part Five
Blame it on bean counters who want to cut costs – blame it on bureaucrats who want care to fit care into pigeon holes – blame it on neurosurgeons who don’t believe in the power of their own miracles, but a Catch 22 too often arises after catastrophic brain injury. At a time the brain is in the deepest crisis, in a struggle between recovery and decompensation, care may be denied because the brain isn’t fit enough to handle a predetermined amount of rehabilitation. That was the justification for keeping Rita “parked” on a floor, only one flight of stairs away from talented therapists who were not overworked. Rita’s mom is waiting for care after catastrophic brain injury and it isn’t happening when it could be.
Was the fifth floor a rehab floor?
No. It is just a trauma floor is what they call it. And it was, it was terrible because she just laid there for five months after that. I mean, they tried to, they had minimal, you know, speech, occupational …
I look back on it now – I didn’t realize it at the time, but I feel like they just thought she wasn’t going to do much, and they didn’t, you know… They told us that there just wasn’t money, they weren’t there to do physical therapy, that’s not what they do. We are here to make sure the person is medically safe and that’s it.
She had a feeding tube. She had a trach. And the social worker came down about a month later, so the end of February, and said okay, it’s time for her to go home now. And we actually thought about it for a night.
I called my friend at the TBI support group. This is why support groups are so important. They said don’t you dare do that because once you take her home, you will never get back in the system, such as the system is.
Well, I found out that there are no, there was no place for her to go. There was no nursing homes because none of them in the area take anybody with a trach. So that was a huge problem. That’s why she stayed there for five months.
Does Bayfront Medical Center have a rehabilitation unit?
Yes, they do.
Why didn’t they move her there?
Because they said you have to be able to withstand three hours of rehab, and they said she couldn’t do that.
Was she doing anything?
Very little. Very little.
When did she first speak?
I know the first word she said was “stop” because we were exercising her legs, and she screamed out “stop.”
Is this when she is on the fifth floor whilewaiting for care after catastrophic brain injury?
Oh, said “stop, ouch” and yes. It was March 20th.
So from the 13th of January to the 20th of March, she was showing some cognitive functioning>
First words near the end of March?
She was following commands. You tell her to do things and she started doing that.
For example, what kind of command would you give her?
I have here on February 22nd, “follow command by putting hand on railing of chair and down again.” So we’re saying put your hand on the railing, okay, and take it off. She was doing that.
Was she recognizing people?
Yes. She knew who we were. Yeah. And my sister and her brothers, yeah.
Did she ever show any positive emotion when she saw you or I should say when did she start to show emotion?
Gosh that, that’s a hard question. I don’t know if I know the answer because that’s still something that’s kind of missing, you know, is the emotion.
From the time she said “stop” on March 20th, did the words start to come out again?
Over time, but it was very slow. Very slow.
Did you get anybody’s attention with the fact that she actually could speak?
Yeah. Yeah. We were like thrilled. Uh, nobody in the hospital was. No. No. They, that’s just, you know.
And you were stillwaiting for care after catastrophic brain injury ?
I would say once a week, maybe, we saw somebody. We were, my husband and I really wanted to get the trach out, so we were on them because how they do it slowly. They make it tomorrow, tomorrow, and then they cap it off, and, the speech therapist was involved in that. And she like once a week, tried to do something with her.
My husband and I drove 50 minutes (each way) every single day for five months to that hospital, and we spent all the time there with her, and we learned. I mean, they would tell us what to do, and that, we were the ones doing it.
Did you ever confront anybody as to why there weren’t therapists in the hospital who could come in and work with her?
Well, yeah. They, they said they weren’t there to do that. They told me they were not there to do that. They were there to make sure she was medically safe. There was not enough money to do physical therapy. She had to go up on the sixth floor, which is the brain rehab department, but she wasn’t ready to do it because she couldn’t withstand three hours of therapy.
And they didn’t have anybody who could come down to the fifth floor from the rehab unit on the sixth floor to give her therapy that might have gotten her off the fifth floor quicker?
But there was money to keep her on the fifth floor indefinitely waiting for care after catastrophic brain injury? Not money to help her get her off the fifth floor?
Her medical bills were being paid by Medicaid?
As Medicaid was paying her bills – that means the hospital, that couldn’t inconvenience its own therapists by asking them to take an elevator ride, wrote off 80% of the charges for that five months. It also means that we taxpayers paid the other 20%. If more active therapy would have gotten her to the 6th floor even 40% faster, that would be at least a six figure saving, just from the economic end. The human end of delaying treatment to Rita and forcing those two hour commutes each day to her parents, was far more.
We must demand more common sense, compassion and better bean counting for survivors of TBI. Had Rita been still covered by private health insurance, I believe the hospital would have found her more capable of handling rehab. Medicaid means hospitals think in terms of doing less, even when doing more would cost the hospital less. When there is private pay, the hospital can make a profit. But not losing money needlessly, also improves profitability.