OT...update on our Lynne Mann

PurplemoonApril 3, 2013

Her DH hasn't posted on her Facebook in awhile but now has done a LONG one. She is STILL in the hospital, and its heartbreaking to read all our sweet friend is going thru from her surgery several months ago. Here is what Tom said...

"Hello, Family and Friends,

Yes, it's been a while, and no, you haven't missed any updates. In a way, it really has been the "No news is good news" situation. Not to worry, here's one tonight, and again, we really do appreciate all of you who have been asking how things are going.

Overall, things have been going along pretty smoothly these last couple weeks. Fort...unately, there's been no more major setbacks to alter any progress that has been gained. Lynne has been on a soft/chopped high protein/high carb diet for the past 2 weeks, and is ever so slowly regaining an appetite. She's found that some things just don't appeal to her right now, while she's finding some new hospital favorites (baked salmon, roast turkey, chicken noodle soup, strawberry yogurt). One of her breakfast favorites is oatmeal with butter and half a pack of brown sugar, and any of the egg combinations we've tried so far. When we're there to put in the order, we try to mix it up just to keep it from getting too repetative.

Lynne hasn't been up and walking yet, but using the lift, they've had her up and sitting in the room chair a couple times, and this afternoon, when I got there, the lift was in the room, but Lynne was nowhere to be found. It seems that one of the Nurse Assistants put her in a wheelchair and took her out for a 'ride'. I finally found her down on the main floor of the hospital over by the UNC Children's Hospital Unit... smiling and laughing. Mary had taken her into the children's chapel, and said that the music in there almost put Lynne back to sleep, so they moved on in their tour of the lobby. Turns out that that little cruise was for over an hour. Then she sat up with me for another 20 minutes or so, before getting back into bed.

While she hasn't been walking, sometimes her mind and her body aren't on the same page. Sunday night, I got a call from the hospital saying that Lynne had tried to get out of bed and took a fall to the floor. She bruised both her cheeks, her left eye, and her right wrist. They took her down for a precautionary CT scan, since she's still on blood thinners as a result of the blood clots last month. Fortunately, that came back negative. Apparently today, even with a sitter in the room with her, she tried again. She even tried late this afternoon when we were rolling her in the bed... her legs naturlly tried to swing over the edge of the bed. Right now, her mind wants to tell her that she needs to get up (like to go into the bathroom) but she can't remember that her legs aren't good enough to do that yet.

They're still making small adjustments to some of her meds, trying to get her to sleep more solidly through the night, but not so much that it interferes with her daytime schedule. Lately, she's been waking up around 2-3 in the morning, but then falls into a solid sleep for a few hours later in the morning.

At times, she's communicating well - in full sentences, slowly but clearly, saying things that make perfect sense. There are a lot of times, though, where she's really confused trying to talk, yet she knows she's confused. She'll give a wrong answer to a question, and immediately say "No, that's not right". One time, she even pointed to her head and said "Everything is in there, it just won't come out right".

We had a meeting with the doctors last Friday to hear from everyone involved with Lynne, and when we went to go to the conference room to talk, Lynne told Ruth and I , "No, you can't go there". When we asked why not, she said "Because I want to be a part of it, too". Very insistant, very adamant, very much Lynne in charge of Lynne! Ruth and I loved it! So, our conference with the surgeon, neurologist, nutrition and social worker and 8 family members was held in her room, because Lynne wanted it that way.

At the meeting, we officially learned that Lynne's diagnosis for this neurological problem is being treated as "Wernicke encephalopathy" - brought on by a Thiamin deficiency. Of course, other problems along the way - a compromised liver, kidney issues, electrolyte imbalances, various infections, it seems that they all piggybacked on to each other to create Lynne's current overall status.

There's not much more the hospital setting can do for Lynne at this point. The incision wound has almost healed over, and the fistula and drainage is being managed very nicely. Soon, and possibly very soon, it will be time for the next major step - being transferred to a rehabilitation facility, where she can get more intensive therapy on a regular daily schedule. Not just physical, but speach as well as neurological help. With the assistance of the social worker, we're now getting recommendations to facilities that will best meet Lynne's near-term and long-term situation, and Dawn and Lee will be visiting some of those starting Thursday. Our granddaughter Celeste continues to bring her books and read to her Grandma on weekends when Kevin and Jenn visit. Our niece Tracey continues to help 'translate' a lot of the 'doctor speak' into something we can understand a little better.

We're all looking forward to this next transition, or as Lee has mentioned a few times, this metamorphosis that Lynne is undergoing. We want to be sure that not only will Lynne be getting the therapy and continued medical care she needs, but will be in a setting that will also be conducive to her overall well-being. This next location will be her 'home' for an unknown length of time, and we want to be sure that she's in a place that will have that feel.

Again, all of us want to thank you for all your continued prayers, thoughts, comments and well wishes, cards and calls, and your overwhelming love shown towards Lynne and the family. It has been a greuling 3+ months now. We've driven home at night to 4 rising full moons, seen the entire Winter come and go, missed holidays and birthdays, and we have no doubt that your support has really helped carry us through.

God bless you all as we continue this journey together.

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Oh my goodness! Lynne and her family need prayers
from everyone. So much to deal with and I'm sure all
of this is so draining on them. I can't imagine going
through this and still dealing with all the other daily
chores. Love it that she still has a strong mind and
her family cares. Smiled about that meeting coming
to her room. I'm sure it meant the world to her.

Thanks so much Karen for posting this. Will keep all
of them in my thoughts and prayers.


    Bookmark   April 3, 2013 at 9:23AM
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Thank you for the update on Lynne, Karen.
I hope the worst is over for her and she continues on the path to recovery.
I will continue to remember her and her family in my prayers.

    Bookmark   April 3, 2013 at 12:11PM
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This is so heartbreaking .
I feel for Lynne and all she's going through and for how stressful this must be for her family. Thankfully though, she seems to moving slowly but surely forward.
I will continue to pray for her and her family.
Thank you Karen for this update.

    Bookmark   April 3, 2013 at 8:05PM
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Thank you, Karen ...I will pray for guidance for the right rehab facility ... it will help her so much if she is comfortable & has the knowledge that she is working toward going home. I was so fortunate after being hospitalized for two mos in a hosp two hrs from home & then able to be transferred to a wonderful rehab center just 20 miles from home...so I hope & pray the same for Lynne. Thank you again, Karen. Jeanne S.

    Bookmark   April 3, 2013 at 11:25PM
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Marlene Kindred

Thanks Karen, for posting this update. I have to say that it made me cry....such a very long, hard road for Lynne and her family. My heart just breaks for her because I have had some experience with long term illnesses and care.

I wonder if there is something we could do as a group to help cheer her up? I know that on the garden forum once we made ornaments of different types to send to one of our members to hang on a tree in her room. They were gardeny or something to remind the person of the sender. I think you even sent one in purple to the person. Just thinking out loud here.

Thanks again for letting us know what's going on.

    Bookmark   April 4, 2013 at 1:23PM
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Yes, Marlene. I remember each of us made a special ornament and sent to Sylvia when she had cancer surgery. (and thankfully she is healthy and doing great).
I made a purple moon ornament ;o), and did the words "I see the Moon and the Moon sees me, God bless the Moon and God Bless Me" along the moon in small print. Sylvia loved her little tree and had it in her kitchen area I think after she got home. Neat you remembered that! And neat idea if we could come up something special for Lynne from us!!
any ideas, anyone?

I just can't believe all the complications she's had from the surgery and all these months in the hospital. She got such a short time back at home, then everything just went bad. Her husband is a rock, and a blessing to her.
I know its has been so hard on him too. I keep sending prayers daily for both of them.

hugs, Karen

    Bookmark   April 4, 2013 at 7:24PM
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wow. I can't even believe how messed up this whole thing is and that the doctors can't get it "right"! It's sounding a little like a rare brain problem that a friend's wife had a few years ago.... all the doctors misdiagnosed it as a SINUS problem and they almost killed her.

Marlene and PM, re ideas for sending something to cheer her up, I immediately thought of sending something like garden seeds because it would give her something to look forward to. But whatever you decide as a group -- like homemade ornaments, greeting cards, whatever... -- I'll go along. JLMK! and, of course, I'd need a mailing address.

    Bookmark   April 5, 2013 at 7:41AM
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I don't know who Lynne is, but she seems to be a very nice person in need of prayers and well wishes at this time. It is apparent that she has a very loving husband - and for that we can all be grateful. Best wishes.

    Bookmark   April 17, 2013 at 2:34PM
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