Don gave me links to some pictures of Linda, so we finally have some. I know that not everyone who is concerned about Linda actually knows what she looks like.
After many different attempts to do this, the best was to do it as links, as you will see to the right of this page.
As Dr. Woehlk noted in an email earlier today, Linda has decided to go to Rusk Rehabilitation Center in Columbia.
rusk rehabilitation center
315 Business Loop 70 West
Columbia, MO 65203
1 888 215-6437
"Rusk Rehabilitation Center has achieved a reputation throughout Missouri as a leading facility for rehabilitation and physical medicine. As mid-Missouri's only center dedicated solely to rehabilitation care, Rusk offers a range of comprehensive services, including inpatient and outpatient programs and specialized treatment for brain injury, stroke, arthritis, spinal cord injury, chronic pain and industrial injury. Rusk also offers a specialized pediatric rehabilitation program in conjunction with Children's Hospital. Because injury or illness can affect every aspect of a person's life, Rusk faculty and staff work as a team to treat the whole person.
As a result of an agreement between the University of Missouri Health Sciences Center, the Department of Physical Medicine and Rehabilitation and HealthSouth Rehabilitation, Inc., a new, state-of-the-art rehabilitation hospital has been built on 7.3 acres of land next to Ellis Fischel Cancer Center on Business Loop 70 in Columbia. The new hospital increased inpatient care space at Rusk from 40 beds to 60 beds and accommodates an outpatient clinic, a therapeutic pool and a gait analysis lab for analyzing patients' walking patterns.
HealthSouth jointly owns, manages and operates the new facility, while physical medicine and rehabilitation physicians and psychologists direct medical care and oversee medical education programs at the center."
for Linda to be able to go to Rusk, she had to be able to track her eyes, and to be able to communicate yes and no.
Linda probably will not be moved to Rusk until Tuesday. I base this on the fact that she does not yet have a feeding tube inserted; they will do this tomorrow at the hospital, and probably monitor her over night.
Linda had a great many visitors yesterday, which she seemed to appreciate, but it also was greatly tiring, as you can imagine. In addition to Kirksville people, her brother, sister-in-law, don's brother, his wife, Don's mother, Linda's mother, Mary, her husband Phil, Ellie were all there; then two women showed up from Athens, Georgia! Today, she had cousins from Michigan, Truman friends from Kansas City-- it's really incredible the lengths people are going to visit.
However, it is also really exhausting.
To the extent that our little community can, I would suggest that due to the fact that we are not going to be using our care schedule to bring Linda home, that instead we create a visitation schedule to make sure that Linda has regular visitors, but not twenty one day and none the next. We will also have to wait and see about what her days at Rusk are like. They will be working with her extensively for the next six to nine months.
And what exactly is the rehabilitation like?
They will work with her to get her to move her eyes from side to side. Don was explaining this to Linda, so I played the sitcom role of asking the stupid questions to make sure he was explaining it as fully as he could:
"How can they get her to move her eyes from side to side when she can't do it?"
"They get her to try to do it and see if that eventually enables her to do it."
"Like laying down neural pathways?"
"Something like that."
Don's main concern is what Linda's life will be like when she is not in therapy. She is a very intelligent person. What measures will be taken to insure that she is not bored? Will she be able to somehow turn on a television at night if she is bored?
I realized after talking to some visitors that people still have questions about what exactly has happened. I have had to ask some questions over and over and I hope that I am explaining this correctly:
A stroke occurs when a blood clot travels to the brain and cuts off the blood supply to that portion of the brain, causing tissue death. In Linda's case, the blood clot traveled to the brain stem, which is tiny, about the size of a fifty-cent piece, according to how Don held up his fingers. Linda's stroke occured on both sides of the brainstem-- basically damaging all of it. The tissue has died. In some instances of stroke in the upper lobes, one part of the brain can eventually take over and compensate for lost functions. However, there is not enough brain tissue around the stem for this to happen. That is why this is the very worst place for a stroke to happen, and the fact that it was on both sides-- well, it is the very worst type of stroke. Linda was placed on blood thinners a couple of HOURS after the stroke began, which means that the clots were cutting off her blood supply without abatement for hours. It took a long time for swelling to go down and the clots to dissolve in order to determine what kind of damage had been done. However, the nature of the stroke and size of the clot led the doctors to their diagnosis early on.
The brain stem controls movement, coordination, breathing. Linda is extremely fortunate that she can breathe on her own.
However, the damage to the brain stem is what can lead the doctors to make predictions about her prognosis. It *is* too early to tell exactly how much of the brain stem has been damaged, but that is not the same thing as saying we can expect significant recovery. Don told Linda that *significant* recovery would be that someday she could manage an electric wheelchair. We do not have any idea at this point, though, how much recovery is possible. By saying that we do not know how much of the brain stem was damaged, I mean that there may be little tiny undamaged portions that would enable her to raise an eyebrow, move a finger, etc. I do not mean to imply or suggest that the brain stem has not been significantly and profoundly damaged. Brain tissue does not grow back. Once it is dead, it is dead.
At Rusk, they will work with her to see whether she might someday be able to swallow, whisper, and perhaps gain enough hand movement to either feed herself or manage to type on a modified keyboard with a modified program that would make it easier for her to key. However, the work she will be expected to do to accomplish these aims will be grueling and exhausting. And if she does not progress at Rusk, they will release her.
I think it is far too early to speculate about where she will go after that release. Of course, that does not stop me, but it would be irresponsible to do that here, perhaps.
In addition to some eye movement right and left (which is subtle-- I didn't notice it this morning, Don told me), she is also coughing much more like she used to-- it sounds more like a cough.
I have also noticed some vocalizing-- and it seems to be deliberate. She cannot cry, but she can make a very anguished sound when she is sad. And I'm sorry to say that I heard that when I was speaking with her this morning, because I asked her if there was anything she wanted to talk about, anything she was worried about, and when we spoke of Ellie, I believe she cried. I felt bad for upsetting her, but the simple fact is that she cannot communicate unless we ask her questions. Sure, we can just sit there and not talk about anything, but she wants to talk-- and right now, not a lot about this is not upsetting.
Another thing I wanted to address is that I have heard from various people that they thought discussions about the feeding tube were premature last week. However, the doctors need permission from Linda, because of risks of infection, aspiration, and the fact that she does not have one, in order to give her a feeding tube. Last weekend, the situation was so grave, that it truly was not premature to have that conversation. It would have occurred sometime this week, and it would have been cruel to keep her in the dark about her condition and delay it.
I do wish other people would post, because I don't want to be all doom and gloom all the time-- I am basing these posts on conversations with the family and what they are thinking about. However, I have received reports from people about their hopes and prayers for miracles. I think someone else should take a turn to post more positively, or you will continue to get news from Jen's lens, which is grateful Linda is alive, but trying to be cautious in my expectations. I would rather be pleasantly surprised.
Linda is not a religious person. She is not holding out for miracles from God-- which of course does not mean that a miracle will not happen anyway. I am not the best person to speculate about such things.
I do know, however, that most of my conversations have been with the Bindners. I also know that Linda's family has a different mindset, and that they very much believe in the possibility of full recovery. Mary was reading to me yesterday about a woman who had a stroke worse than Linda's, was in ICU for six weeks, couldn't move from the forehead down, and within six months was showering.
I did not ask how much of the brain had been damaged, how soon blood thinners had been administered, etc. etc. etc. I let her tell me, and I told her I thought it was great. And surely it is.
A few years ago, my dad gave me a book to read called The Diving Bell and the Butterfly
by Jean-Claud Bauby, who wrote the book through a system of blinking when he was locked in. It's a quick read and may provide some insights. Somebody who works at the hospital gave a copy to Don. He said he'll probably read it. I can't say it paints the most positive picture though, although it is promising for Linda as a writer that he was able to do it.
I spent most of the afternoon yesterday playing with Ellie, who wore me out! My children are older and don't demand quite so much of my attention. It began when we were making some posters for Linda to look at, and Ellie went from tracing her hand to coloring on her hand, to coloring on my hand... So, I took her to the gift shop, hoping she'd want some nice stuffed dog or something. No. She went straight for the bouncy balls. Fortunately, the ones (I had to insist that one was enough) she chose were big enough not to get lost, but still very bouncy.
We played with that ball for the next two hours, sitting on the floor, rolling it back and forth, then she'd kind of throw it. Then she looked at birds out the window. Then we did ring around the rosy. Then, we went upstairs, and she had some apple juice and we rolled the ball in the family room for awhile. Then, she found phones on the wall, two side by side, so she picked one up to "Call Mommy," and instructed me to do the same. After we had called Mommy three or four times, "Hi, Mommy? Are you still sick? Are you tired? I love you, Mommy, bye bye" a very cross woman informed me that the phone Ellie was using called the ICU nurse to have her let people in, simply by picking up the phone... And then she proceeded to explain it even more.
For anyone who thinks I'm a particularly nice person, let me just correct you now. I cut her off with, "I'VE GOT IT."
She started to chide me more, "They're really busy, they don't like that, blah blah blah."
I fixed my coldest stare on her. "You could have told me that before she picked up the phone four times."
"There's a sign on the wall. You can read."
The sign on the wall indicates nothing of the kind, and I do not live in the hospital. B*7^$.
I thought about launching into an icy, dramatic lecture about the fact that this little girl had a mother who, well, you all know, so she'd feel really bad, but I did not-- she was obviously suffering for someone there too, and Ellie certainly didn't need to hear anything. But I still think that woman was an obnoxious *&%^$.
Then, out to the hall to roll the ball down the hall and run after it over and over and over. I kept trotting behind saying, "Shhh," and she would dart back, "No, quiet, Jen!"
Finally, Uncle Dennis and Aunt Jo (sorry if I spelled that wrong) rescued me with a game of hide and seek so I could collapse into a chair by Don's mother.
Right now, Ellie is fine. Of course she has a difficult road ahead, but right now she is getting a lot of attention from a lot of different people. Same with Don. But they do have a long road ahead:
In addition to schedules of visits for Linda, I know many people have offered to provide meals and are worried for Don and Ellie.
I would like also to schedule meals for Don and Ellie for the next month or so, and also get volunteers to host Don and Ellie for dinner one or two nights a week-- let's say Thursdays-- so that they get social interaction and good cheer. I mentioned this to Don and he liked the idea very much. I know that we all want to provide continued support; I come from a background that suggests that this support will be the most possible and the most enduring if we go ahead and put it on our calendars.
I don't when exactly Don is returning to Kirksville, but I'm guessing they will need an invitation for Thursday. Don is speculating also that he will be able to come to the fundraiser on Friday night.
There is a group of Truman students organizing a babysitting effort so those of us with kids can attend the benefit. Last I heard, Leah Reschly was organizing something at the Newman Center, as well. More details as I get them.
I will send around an email for scheduling purposes later-- I really prefer to post updates on the blog though, as it takes forever to create a database of group emails through my work email, and so I have to keep finding old emails I have sent and cutting and pasting addresses, which is inefficient, because I always miss someone. The blog is the most reliable source for information, and Don now knows how to blog, so look for more information from him.