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Hello,
Our mom Suzanne, had a brain stem stroke on May 23, 2008.
She has made some great progress considering the condition she was in 4-5 months ago.
Our mom is on a G tube, and can not swallow at all. Due to not being able to swallow, she has coughing fits now and then. From coughing so hard she therefor can not catch her breath and then panics and stops breathing.

She has been very strong, positive and eager to get better.
Though now she seems to be getting very frustrated, a bit depressed and we are worried she might be giving up, or perhaps just does not have the strength to keep working on her recovery.
It has been 6 months since the day she had her Stroke.

She had asked me the other day, If I could find someone that has had the same stroke, as well as the same after math of the G tube, not being able to swallow and feeling flu like. That she could talk to via emails

If anyone who has had this sort of stroke, and or has a loved one with the same stroke and side effects, PLEASE email me with some hope, direction, answers, so that I may print them out for my mom.
Thank you in advance!
Barrie
Please read below for older post.
Posted: 06/10/08 - 23:07 Post subject: brain stem stroke
We are hoping to find some information or direction.
Our mom, Suzanne, who is 71 had a stroke on the back of her head, on the brain stem on May 23rd 2008. All of her memory and the part of her brain that makes her who she is, is all there. Thank god!

Suzanne was diagnosed with a stroke 7 1/2 hours after being rushed to the emergency room. My family and I found this a bit odd since she had every symptom of having a stroke.
And we all know that it is vital to get help and diagnosed as soon as possible, when a person apperes to have had a stroke.

Suzanne was unable to swallow before she even got to the emergency room and still can not swallow 18 days later.

Our mom was put on a respirator 2 hours after being diagnosed with a stroke and within four days she was making great process. She was able to breath on her own, with out the respirator for 48 hours, her strength was good, her speach was good, and the droop on the right side of her face was getting much better.

Since she was doing so well the Doctor said " she is going to be fine, and she would be going to the general care unit and start physical therapy" This was at 8:00 PM on May 27th.

On May 28th at 9:00 am they started physical therapy in a chair, with simple leg lifts. Our sister, Bridgette noticed that our moms color did not look good and ran out of the room yelling for help from a doctor.
My mom had stopped breathing as a result from the stroke. The part of her brain that make/tells her to breath had stopped telling her to breath.

Suzanne was then taken back to the intensive care unit (ICU) where she still is today, June 10 2008.
We are getting mixed feed back from the many "rotating" doctors we have been dealing with for the past 18 days.
Some basically saying " get a living will and decide wether you want your mom in a nursing home, or if you want to keep her at your home" reminding us that keeping her at one of our homes is not a pleasant way for us to live and a nursing home would be better, or letting her go back to her home and have 24 hour, home health care.

We are certain that our mom is going to be discharged from the hospital. We are so confused and don't quite know where to place her. We are hoping to find a place that will take stroke victims, that can't swallow, can't breath 100 percent on there own, sees double unless one eye is covered, and that has basically not been out of bed for 18 days, other then the past 3 days sitting in a chair for 2 hours at a time with 2-5 minutes of physical therapy.
Our poor mom is on a feeding tube, (directly to her stomach) and on a respirator through a trach, at least 65 percent of each day. We are asking for anyones help!
For anyone that has had a family member, friend, loved one that has had this kind of stroke and or any doctors that can give us any information, hope, and direction.
Thank you in advance!
Barrie, Shane, Bridgette, and Dakota

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Barrie,
My father suffered a brain stem stroke on December 17, 2007. He also doesn't have the ability to swallow and it has been almost a year. He has a feeding tube that goes directly into his stomach. Not being able to eat has been the hardest part for him, but he has not lost hope. He is dizzy all the time and has double vision. He has been going to UNC Chapel Hill for procedures that may be able to help him swallow one day. I keeping praying and hoping that this will happen soon. It's been almost a year. Please email me at _[removed]_ I'm sure my father would want to talk to someone who is going through the same thing. You can't imagine what it's like until it happens to you or someone close to you.

Best Wishes,
Lindsay

_[removed]_
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I completely understand what you are going through, in fact I promised my Dad before he died, Mom would never be in a nursing home, but after she had brain surgery, was doing great for a few weeks, she had a relapse and we were no longer able to care for her medically. She doesn't have a lot of money, but enough to hire 24-hour care for about a year, but her symptoms worsened and we felt we were not doing her a good deed keeping her at home because she began to have what I believe were seizures and delusional fits in the wee hours of the morning. In short, we took her to the emergency room, she stayed seven days and then was taken to a care center where after fives days of being in a heavily medicated state of unconsciouness, she woke up today and said a few audible words. A small victory, but a step forward. We have hired sitters to stay with her during the day until about 7 p.m. and they are wonderful. Money is an issue, but we will worry about that later. She does not qualify for help, but does not have enough to pay for years of car, but the focus is on getting her better and ensuring she is clean, taken care of and not afraid of being alone. Nursing homes are not most people's choice of care, but if you can, hire a kind sitter who will see she gets the care and respect she deserves. We simply could not care for her medical needs, but I guarantee you, if love heals someone, she will return home as soon as she is able. Don't feel guilty. I did, but I was really doing her a disservice trying to care for her at home.
Good luck and blessings to you. Miracles do happen. Even if she doesn't fully recover, most importantly talk to her like a human being and don't allow others to talk about her while in the room. I know my mom can hear dismal conversations about how "bad" she looks and that certainly does not add to her sense of well-being.

Loving and missing mom.
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