Update from Paul: July 25th
Hello everyone,
I tried to go through my e-mails from last year to get some of the more significant ones to send everyone some of the latest information regarding Karen. If you know someone who might be interested to know that I didn’t’ send this message to, please feel free to forward it to them.
Karen has had what we hope will be a minor setback, and will be corrected successfully with the procedure she is going in for on Friday morning. She has been plagued recently with some rather nagging and persistent headaches. Her neurosurgeon suggested another scan just to be sure. As a result of that scan, it appears that the shunt that was put in Karen’s head shortly after her birthday party last year is no longer working properly, and causing excess accumulation of fluid in the ventricles of her brain. They are going to have to go in to find out why, and are likely going to have to replace it with another one.
They are saying she will be in the hospital for two nights, assuming everything goes as planned.
I know she would be thrilled to hear from all of you, so if you could send her a card, or give her a call sometime, that would be great. I should know by Friday evening what room she is going to be in at Mt. Vernon Hospital, so shoot me an e-mail or give me a call and I will be happy to pass it on. If you send a card, just send it to her home, and her dad or I will make sure she gets it.
She has been really working hard to get back to a somewhat normal life, and I am amazed at not only her progress to this point, but how she continues to stay so positive all the time. I don’t know how the hell she does it. I do know that she is a bit nervous and scared about this procedure, but as usual, she is being a real trooper about it.
That’s all for now, I’ll keep you posted.
Paul
Karen Update! April 2, 2007 ...1 year anniversary!
It’s hard to believe, but March 26 was the one year anniversary of my accident involving a ruptured brain aneurysm. It has been a good year, considering I began it in intensive care in a coma. Then, when I regained consciousness, I had to learn to talk, think and eat again. I couldn’t have done it without some special people: my Dad, who allowed me to move back in with him, installed a chair lift so I could move from one level of the house to another and still manages my finances and medical/therapy care.
Last but not least is my boyfriend, Paul, who helped me to finally conquer my fear of the stairs and also got me to give up the wheelchair, the walker, and the quad cane because of his support and belief in me. I now get along in a normal manner although I confess that escalators still get the best of me. My balance just isn’t there yet!
In the meantime I enjoy a rich and rewarding life due to the support of my friends, relatives and worship to the Lord. They make sure that my busy week is filled with therapy sessions that will enable me to return to work and enjoy an independent life again. I do not know exactly when that will be, but I am working hard to make that possible within the year. We shall see, as it’s in my hands and in those of a higher authority.
Finally, during a wonderful visit from Helen of the running forum, I now have the new address, so expect to see ‘Wildflower’ again soon.(link to e-mail)
Karen's Feb 19th Post - Re: Gov't Leave Donations
Sorry that it has been so long since I updated my blog, but I have been really busy lately. I still have weekly physical therapy to help improve my walking ability and to restore some of the muscle and tendon damage to the left side of my body. I also do daily exercises on my own to help speed up the recovery process and hopefully, reduce some of the pain to my lower back, left leg and foot. I also just started a pretty intense study of the Biblical book of Daniel at the chapel at Fort Belvoir.
I addition, I also make a one hour trip to the Stroke Comeback Center in Oakton, VA where I attend individual speech therapy sessions twice a week and four group sessions on Monday afternoons. One of the groups is a book club. We have read some real duds. But the current one is much better, Kite Runner.
I also check my e-mail daily
(link to e-mail) so please feel free to send some at your convenience, but keep it short: my typing is pretty bad (but, getting a bit better) so long replies are impossible.
One last plea. I am about to run out of sick and previously donated leave so if you are a Federal employee or know any Federal employees, leave donations would be appreciated. If you have already done so many thanks! Your leave donations and the continued paychecks have enabled me to hold on to my condo for my eventual return.
Best wishes to you all.
Love, Karen
Post from Karen: January 25th
Hi everyone, I’ve been a bit remiss at posting updates on my blog.
My days fill up pretty rapidly. I still see a physical therapist and recently began sessions with a personal trainer at my gym.
I also go out to the Stroke Comeback Center in Oakton, VA for individual speech therapy sessions and for a long afternoon of group sessions, which include a book club. Unfortunately, the books we have read so far are real duds. We are just starting on Kite Runner, which I am approaching optimistically given all the reviews I’ve seen.
In addition to the sessions that we attend outside of the house I also continue with physical therapy on my own at home in between the formal sessions with a therapist.
Karen
Post from Karen: January 7th
Greetings to friends and family, the holidays took me away for my blog for abit. But, now that 2006 is in the history books, I’m taking some time to reflect.As you all know 2006 was absolutely terrible for me and those who care about me. But, for the first time in a long while, I am looking to the future with optimism. My long term goals for the New Year are to get back to work at The Library of Congress and try to get back to running and swimming a little bit.And also to enjoy the company of so many friends who have supported me throughout my ordeal and recovery. I’d love to hear from all of you, so please send an email (link to e-mail).Karen
Update from Karen: Nov 27th at 9am - Good news!
Hi everyone! Welcome to another installment of Karen’s Blog.
I am doing very well. I had another angiogram last week to see what has happened to my aneurism and also the tears in the veins in my neck. This was the first one I have had since being released from the hospital. The procedure consists of the radiologist entering a probe into the blood vessel in my groin area and then releasing dye into my brain to capture images of the circulatory system.
It was all good news! The aneurism was gone and the tears in the corroded arteries in my neck were healed. What amazing news! The radiologist indicated that this was unusually good news and he cannot explain the reason for the healing. It certainly is reason for celebration.
I thank you all for your prayers and interest. Feel free to contact me any time; I try to check my e-mail daily.
(link to e-mail)Your friend, Karen
Labels: angiogram tests positive
Post from Karen: Monday, Nov 6th at 5pm
Greetings friends and family, I’ve been touched by all of your responses from across the country. My left eye surgery went well. I was scared going in but they gave me so many drugs that I don’t remember a thing. I went back to the doctor the following day and could see from my left eye. During an appointment the following week they tested my vision and I could see 20/20. It was better than before my injury in March. YAY! If you want to contact me, I’m online at (link to e-mail).
Karen's Post: Oct 24th at 12:30am
Hello friends,
By the time you are reading this, I’ll be just about recovered from the eye surgery I had on October 24th for a clot in my left eye. I’ll let you know how the surgery went in a few days. I hope it will be good news. Prayers are always welcome. If you want to contact me, I’m online at (link to e-mail).
Bye,
Love, Karen
Karen's Blog Update: Oct 14th
Hello everyone and thank you for reading my blog so faithfully and a big thank you to Paul who updates it on a regular basis.Good news, finally, I am cane free and am recovering well from the last brain surgery. A few weeks ago, a doctor suspected that my left eye is no longer seeing clearly so, he sent me to an eye doctor. A quick and painless examination revealed blood clots in my left eye. So on October 24 I am going into the INOVA Outpatient Surgery Facility for minor surgery. The surgeon claims that it will not hurt but I will have to wear a patch for a short time after surgery. So Paul claims that I will have to be a pirate for Halloween. That I can do!
I would love to hear from all of you. I am now living at 703 780-etc and my e-mail remains "hotmail" (click here). (Please email me and I'll forward you my phone number.) Bye for now but check back for more updates from me and thank you for the many donations of annual leave and funds for my medical expenses...
Love, Karen
"Hello" from Karen's Post!! (w/Video!) October 3rd, at 2:50pm
Dear Friends:
I want to thank all of you who were involved in the run for Karen. I feel so honored that the wonderful people in the NOVA Club held that race for me. I only wish that I could have been there to thank everyone in person. But, unfortunately, I was still in the hospital, recovering from a second brain surgery. I can’t wait until I can run again. I miss it so much. Perhaps one day soon I will pass you on the trails and say hi! The good news is that I am walking with the help of a cane. Sometimes, I can do it without the cane. Wow!
All: Karen/Paul have sent me the latest video of Karen walking unassisted!! Enjoy the video.....amazing! Steve T ('blogmaster'). (click
here for video)
(Note: The video is approx 8MB-30 sec in length, so download time for those with 56K modems is approx two election cycles (Paul speak :-); All other connections will be less then a minute. Also, the video is in "mov" format, which is an Apple Quicktime/iTunes application. If you don't have this on your PC/Windows computer, you'll need to go to the Apple site and download the software -- approx 30MB. This may be a good idea in that any following videos will be in this format)
Paul's Update: Sept 29th at 9:30am
It has been too long since my last post, and there is much to update you on.
Karen continues to amaze us with her progress. In the past few weeks since my last post she has gone from rarely using the wheelchair to never using it at all. She quickly moved to using the walker as the exclusive means of getting around. Within a couple of weeks she began using her newly acquired quad-cane and stopped using the walker. The walker now sits in the spare bedroom, collecting dust with the wheelchair. Now, after moving away from the quad-cane, Karen uses a lightweight standard cane as the primary method of assistance. However, this is only used as stability when walking over uneven surfaces.
She has begun walking totally unassisted for periods of time (video coming soon), and I would expect she will be discarding the cane altogether in a few weeks as she continues to build her strenght and stamina.
As a result of her increased mobility, Karen has started getting out a bit more. We have actually gone out on a couple of Saturday night dates. Just last weekend we were able to go see a movie and eat dinner in Shirlington. She had a good time, and keeps saying how nice it is to get some of her life back to normal.
Although these are all fantastic developments, and we are always amazed by her recovery so far, we must consistently be reminded that she still has a long, long way to go. She still has significant paralysis in her left arm.
We see improvement in the use of the left arm and hand as a key element to her ability to go back to work sometime next year. We are encouraging her to participate in activities that promote the use of her left hand and arm, and ones that exercise her mind.
As for me, many of you know that I run a political consulting business in Alexandria. Election years are always busier for us, and the period between Labor Day and Election Day are particularly busy. This limits the amount of time that I am able to devote to updates on the blog, as evidenced by the number of days since my last post on the 2nd.
With all of these things in mind we are going to start something new with the blog, beginning next week. I will begin sharing my blog posting duties with Karen. She will submit her first post early next week, and our hope is for her to update you all with her progress and observations a couple of times a week. This way you all can get more regular information, from her perspective, as well as mine with the occasional posting that I will provide.
Look for it next week, along with an extraordinary video clip of Karen walking on her own just this week after we met for lunch in Old Towne.
Paul's Update: Saturday, Sept 2nd at 12pm
At around 3:30pm on Thursday of this week I rec'd a telephone call from Karen herself on my cell. She called me to let me know that she had just been "sprung from the hospital, and was home" at her dad's house.Her spirits have been much better since she got home, and her dad and I both agree that we have seen a marked improvement in Karen this week. We can only attribute this change to the surgery on Monday, and the effect it had. She looks great, is much more positive and the headaches that she had been experiencing before the surgery appear to have gone away.She still has some pain from the surgery, but hey, wouldn't we all if someone had just drilled four holes in our heads.One of our concerns at this point is Karen's annual leave. You all have been so generous in your gifts, however, Karen's leave balance at this point only runs until the end of this month. If you know of anyone who works for the federal government, and has some unused annual leave, please encourage them to gift a few hours to Karen. It would be a shame for her to have to go on unpaid leave at this point in her recovery process. The links for annual leave forms and instructions are posted to the right. -- Thanks!
Paul's Update: Aug 30th: Karen's Post Surgery
According to the doctor who performed the surgery it went well. Karen is still in the hospital, but we expect she will be released to go home in a day or two. I will let everyone know when this happens.
Essentially, what the surgeon did was to remove the blood clots that had formed on the outside of her brain. He informed us after the surgery that there were both newly formed and older clots, but he believes he had gotten them all.
Karen is sporting a stylish new bandage on her head that I refer to as her turban. She also has a new haircut, but we haven’t had a chance to see that yet, and won’t until they remove the bandages. Karen is getting a little antsy being confined to a hospital bed, and understandably she is anxious to go home.
Hopefully, she won’t have to endure anymore surgeries, and can quickly get back on her road to recovery.
Paul's Update: Aug 28th - 9:20am; Karen's Surgery today
Saturday marked two very important milestones in Karen's life. First, it was her birthday. In order to avoid catching Karen's wrath, I won't disclose her age. It was a wonderful day to celebrate Karen's life, and the joy she brings to ours. Karen thoroughly enjoyed it. For those of you who were at my house on Saturday, thanks for making it such a happy time for Karen. She has been talking about how much she enjoyed it over and over again since that day.
Thanks go to Kristin, and Jill for giving me so much help in preparing and putting the whole thing together. I also want to thank my brother John and his wife Maryanne. I don't know how I would have been able to do it without your help.
And thanks to all of Karen's wonderful friends who took the time to visit with us, and to battle the heat and the hoards of flies. I don't know where the flies came from, but I can assure you they we not invited.
The second milestone for Saturday was that it marked exactly five months since Karen's injury. to those of you who have had a chance to see her and visit with her lately you will agree that her progress is nothing short of extraordinary. Each day we see more and more of the Karen we all remember.
It's hard to believe it has been five months since that horrible day. For me, they all seem to run together sometimes.
There were the early days when we thought she wouldn't make it, and the days when she made terrific leaps forward. We've watched her progress from barely being able to sit up, to where she is today, which is on the verge of walking on her own, unassisted.
Throughout this time we were told by all of the doctors and therapists that it would be a long, long road to recovery, and there would be some bumps in that road. We have seen several with the clotting in her legs and arms, the hydrocephalus, and others.
Unfortunately, late last week we were presented with another bump in that long road. Karen has developed some clotting in her head as a result of the shunt that was put in back in the spring. According to the doctors this is not too unexpected, and does happen to patients from time to time. However, they believe it is the likely cause of the persistent headaches that have been troubling her in the last couple of weeks, and they also believe that it needs to be corrected right away.
So, late this morning
Karen will be admitted to Mt. Vernon Hospital again, and will undergo surgery to remove the clots from her brain. If all goes well, she should be out of surgery in a couple of hours, and will spend about three days in the hospital. After that, she will go back home, and hopefully pull through it just fine. Then, she can continue with her therapy, will be relieved of those pesky headaches, and continue to impress us with her amazing progress.
I will provide you with additional posts tonight and this week as the information becomes available to keep you all informed.
Reminder! "Karen's Run" on Thursday Aug 31st!!!
Just a reminder that Karen's running club, the Northern Virginia Road Runners Club (NOVA) is hosting a 5K run & 1 mile fun walk for Karen's benefit. As of this writing, approximately 50 have signed up -- so it'll be quite the event! Note that all proceeds will be donated to Karen's Medical Fund.
As for the course, it's flat & fast starting at Bluemont Park on the W&OD trail. There will be food/drink after the race along with random prizes.
Click
here for the race flyer with further details. Contributions above and beyond the registration fee are welcomed. Note, you can go to the NOVA web site (click
here), click on "NOVA News" and register over the net via Active.com. See you there!!
Paul's Update: Aug 11th at 7am
It has been a pretty good week with Karen, so I thought I would give a quick update. She goes everywhere with her walker these days, and rarely uses the wheelchair now, especially when she is at home. This Tuesday, many of you who were there to see that Karen attended the weekly gathering of her running club at Genereous George's. Although I wasn't there, I heard from Eric and Deborah that she enjoyed it immensly and was rather keyed up when she got home. In fact she didn't want to go to bed at the usual time. She couldn't stop talking about it the next day, and kept telling me how wonderful you all treated her that day. I am sorry I missed it. It was the first outing in which she didn't even bring her wheelchair with her in the car. Earlier in the day she had a doctors appointment too, and used the walker to get there as well.For those of you who were there at Generous George's, thanks for making it so memorable for her. I think you will agree that the little movie that was included with my last post is quite outdated already, and that was taken on July 25th.With this progress, not all improvement is with her motor skills. Karen's mental condition is improving as well. She gets a little feisty at times, but hey, that just means she's getting back to normal. We try to do a crossword puzzle together most evenings that I am there, and I can see the improvement there too.Karen does get bored sometimes when she is confined to the house so much.This is understandable, and one of the reasons she enjoys visitors. So, please check in to arrange a visit.
"Run for Karen" 5k & 1mile - Thurday, August 31st, 6:30pm
Karen's running club, the Northern Virginia Road Runners Club (NOVA) is hosting a 5K run & 1 mile fun walk for Karen's benefit. All proceeds will be donated to Karen's Medical Fund. It's a flat/fast run starting at Bluemont Park on the W&OD trail. The race will have food/drink after the race along with random prizes. Click
here for the race flyer with further details. Contributions above and beyond the registration fee are welcomed.
Note, you can go to the NOVA web site (click
here), click on "NOVA News" and register over the net via Active.com.
See you there!!
Paul's Update: Aug 2 at 2pm
“It’s been four months now since Karen’s injury. The video speaks for itself (click
here for video), and although it is brief (approx 30 seconds), it shows how much Karen has improved. She has even progressed since these pictures were taken. She can walk from one end of the house to the other with very little assistance from anyone, and very often she will opt for the walker rather than the wheelchair when going to the bathroom, the living room, or to bed. Given her continued progress, will believe she will be transitioning to out patient therapy within a few weeks.”
(Note: The video is approx 10MB-30 sec in length, so download time for those with 56K modems is approx two to three eternities; All other connections will be less then a minute. Also, the video is in "mov" format, which is an Apple Quicktime/iTunes application. If you don't have this on your PC/Windows computer, you'll need to go to the Apple site and download the software -- approx 30MB. This may be a good idea in that any following videos will be in this format)
Paul's Update: July 21st at 7:30am
Karen's recovery continues to be steady. She is getting much better atwalking with the walker. She can stand and walk virtually unassisted foralmost the full length of the house. She does tire quickly, but we can seeslight improvement each day. Karen actually looks forward to the our walking sessions each evening when I come to visit. Some days she walks farther than others, but she does make an effort every day.
I keep telling her that this weekend we are going to tackle the stairs, butshe is quite scared of the stairs when she looks down them. This is quite understandable given the view from the top.
Karen does get a little bored some days. Especially the days in which no therapists show up. They only come twice a week, and when they all come on the same day she often will have no visitors at all during the other days, except for me.
It also seems as though the number of visitors that have been stopping by has dropped considerably. This could be due to the fact that it is summer, and many folks are away on vacation. So, if you are in town and you find yourself with some free time, please consider coming to visit Karen. She enjoys seeing each of you, and we see it as a critical part of her therapy. She keeps a journal of everything she does each day, and likes it when she can put in her journal that someone paid a visit.
Paul's Update: July 13th at 10pm
I just returned home from my nightly visit with Karen, Ken, and Kai. Man, there are an awful lot of K's there now. I haven't had an opportunity to see them as much lately because I have been working or traveling, but the absence allows me to see more readily the progress that Karen makes each week.
She is getting better, and showing us more and more of the Karen we all knowand love. She gets a little feisty at times, but heh, that's part of the Karen we all know and love too.
Although her left side is still not back to normal, she is getting more range of motion in both the arm and especially the leg.
Tonight, as I do every night that I am there, I encouraged her to try and use the walker to walk down the hall. Tonight she was able to walk the entire distance without me touching her to steady her, not even once. She used only the walker to maintain balance and move her feet forward. Just last week I had to stand behind her and hold her up to make sure she didn't fall backwards. Tomorrow we'll do it again.
She also is getting very good at getting in and out of the car, chair, and bed, to and from her wheelchair.
Sometimes, she also surprises us with her capacity to remember people, events, and places.
All together, her progress continues to be extraordinary to us. She does get a bit disappointed, and bored at times, but we try to keep her in good spirits and looking forward to the day she walks again, unassisted.
Paul's Update: July 2nd at 9am
Karen is home. She was discharged from the hospital without a hitch. As aparting gift, we were able to secure an entire case of "Magic Cup" deserts. For those of you who have been at the hospital you know that Karen had acquired quite a taste for the orange creamsicle tasting cups.
She had one final physical therapy session before leaving, and with the assistance of the special walker that they devised for her, she walked over twenty feet. I'm sorry I wasn't there to see it, but her accomplishment doesn't surprise me.
She is getting settled into her new room, and is having to get used to the silence at home while sleeping. So, no more trips every day to the hospital for her dad. She is in the comfort of her parent's home, and is getting thefull attention of Kai, her new best friend.
...and she is looking forward to your visits :-)
Paul's Update: June 29th at 3pm
Karen is going through the final preparations for her release from the hospital. So far, everything is go for her release on Friday afternoon. Her dad and I have gone through specific trainings at the hospital in order to get us comfortable with transfers, going up and down stairs, etc. Her dad also has retained the services of a home health care professional, and she has been attending many of the training sessions as well. Kai (sp. ?) seems very nice, and Karen likes her. They should do very well together.
Karen has been making significant improvements since my last post. Her therapists all agree that she is coming along quite nicely. Some of the things we are seeing . . . reduction in the swelling of her left leg and arm. She is gaining greater movement in the left arm and hand. She still has considerable pain there, but is able to grasp some objects and raise her arm when she wants to. The physical therapist has been focusing pretty intently on getting Karen to start walking. She has Karen taking some steps with the assistance of a walker, transferring from the wheelchair to a bed on her own, and going up and down some stairs with someone aiding her.
I think we have seen some improvements mentally as well. I have been doing crossword puzzles with her on some nights that I visit, and she as able to follow quite intently, answering most of the clues pretty quickly. Heck, some of them I don’t even know the answer to, particularly when it comes to literature. Gee, there’s a surprise.
She is definitely ready to go home, and is getting a little antsy. I suspect she will continue to exceed some of our expectations, once she is at home and getting more focused attention, and therapy. We are all looking forward to it as well.
Paul's Update: June 20th at 11:30am
Ever since Karen was told that she would be going home we all agree she seems to be buoyed by her approaching discharge date. She seems more alert, extremely talkative, and sometimes a bit ornery. She also continues to improve with the movement of her left arm, and is beginning to move the left leg as well as put some weight on it.
She is scheduled to be fitted for a wheelchair on Thursday. Apparently, it can take several months for the custom chair to arrive, so she will be using a temporary one until then. However, Ken and I suspect that by the time it comes she may not need it much anymore. I hope that is the case.
We are also making plans for some alterations to Ken’s home to make it wheelchair accessible in anticipation of Karen’s arrival.
On Sunday, we obtained authorization for a “day pass” to take Karen out of the hospital for a few hours. We drove her to her condo, where we met her friend Barbara Paulson. I cooked a nice Father’s Day dinner for the four of us. We had a wonderful time just hanging out. It was the first time Karen had seen her place in almost three months. I think she enjoyed being in her own home again. The photo was taken while she was relaxing in her recently purchased recliner.
Since Karen has DSL in her place, I took the opportunity to show her the blog. She spent some time reading through many of the posts, and was quite amazed. She was also quite touched by some of your comments. I asked her if she would be interested in posting something for everyone to read. She dictated the following to me:
“I am here at my condo, having just finished a nice dinner of salmon with Paul, my dad, and Barbara Paulson. We also just finished looking at the blog. I appreciate all of your kind words expressed.
My heart was touched by seeing you at my mother’s funeral.
I love you all and I can’t wait to see you again. Feel free to come and visit me when I get to my dad’s house. I really look forward to seeing you all soon. Just don’t come all at once ;-) ”
Along with the photo I took of Karen, I shot a short video clip (click here for video) with my digital camera. I thought many of you who haven’t been able to visit her would like to see it. She was being a little silly when her dad (who was sitting to her left) asked her to wave to the camera. It’s classic Karen.
In all, we were gone almost 5 ½ hours. We all had a great time, and Karen didn’t want to go back to the hospital.
A Happy Father’s Day.(Note: The video is approx 3MB-10 sec in length, so download time for those with 56K modems is approx 10min; All other connections will be less then a minute if not seconds)
Paul's Update: June 14th at 4pm
We had another “Family Meeting” today at the hospital. These meetings are for the purpose of informing the patient’s family (and significant other) as to the patient’s rehabilitation progress or lack of it, their overall condition, and the plans for their immediate future. In Karen’s situation it was to discuss her upcoming discharge from the hospital.
Currently, the plans are for her discharge to be Friday, June 30th. This is by no means written in stone. The plan right now is for her to live at her parent’s house. She would have in home care, and receive therapy at the house. We all agree that this will probably be the best thing for Karen’s recovery in the long run. However, I want to make sure everyone understands, particularly those of you who haven’t had an opportunity to visit Karen recently, that even though she is going “home” Karen has a very long, long way to go in her recovery.
I have mentioned before that Karen in currently experiencing, among other things, severe pain and swelling in her left leg due to blood clots. There is no immediate danger for them traveling to her lungs, because she had a filter placed in her main vein. However, this is hampering her rehabilitation efforts, causing great discomfort, and pretty much making things miserable for her. It’s amazing she keeps the positive attitude that she does. It is also prolonging the time until we are going to see her walk again.
They are telling us now that it could be anywhere from several months to over a year before Karen is able to walk again, but they do believe she will do it. I prefer to believe it will be the sooner timeline of course, but the point is it will be a long time and we have no way of knowing exactly how long it will be. This is a little disappointing for a lot of us though, since we all know how much running, swimming and biking were a major part of her life. All we can do now is help her with her rehab and make sure that she remains positive and doesn’t get discouraged.
It’s also important for me to deliver the following message. A great deal of Karen’s care will now fall on the shoulders of her dad. I think now is the time for all of us to be prepared to pitch in – again for many of you, with some of the duties. As the Rehab Team explained to us today, even though Karen is likely to get more acute care at home, since she is not competing with other patients, that care comes primarily from her dad since she will be living with him. Ken will need some relief almost daily to deal with other things, and frankly to get a break from caring for Karen. We will be devising some sort of scheduling mechanism in the coming weeks to track a schedule of visitors, rehab sessions, doctor visits, etc., so we can offer Ken the relief he both needs and deserves, as well as the stimulus Karen will need after staring at the two of us every day. We’ll keep you posted.
To all of you who have helped out already, paid a visit, sent a card, sent money, or donated leave, we couldn’t have gotten this far without your help. Thank You.
I also want to give a very special thanks to Steve Teslik. He set up the blog from the beginning, and has been maintaining it ever since. All I do is write the posts. He takes care of all the rest. It has been a valuable source of information both from the viewpoint of me delivering it, and from those reading it. --- Thanks Steve.(P.S. Actually Paul, speaking on behalf of Karen's community of friends, 'thank you!' for allowing us to be a part of Karen's personal trials, recovery and successes. Furthermore, it's the least I can do as being a geek comes naturally :-)
Paul's Update: June 9th at 2:30pm
Karen continues her daily routine of therapies, and she has been working very hard since her mother’s funeral services. As many of you were aware we were able to take Karen to the services. Karen fully understood what was going on and frankly surprised her father and I with the degree to which she both understood, and wanted to participate.
Even though she still gets a little confused about the timing and sequence of events, we are sure she still fully understands what has happened. She seems to be handling it as well as can be expected.
I want to thank Missy and Martha for helping me with everything in getting Karen to the Chapel. I simply could not have done it without them. I also want to thank all of you for coming to the service. I know it meant a lot to all of us, especially Ken, Karen, and Eric.
In the last week since my previous post there have been a few changes. It is clear to me that Karen’s mental capacity and intellectual thought have improved. Her sharp wit and intelligence are more apparent every day. She does continue, as I mentioned earlier, to have a bit of trouble connecting a timeline of events that have occurred, often mixing them up in order. She is also very stubborn if you call her on it, insisting she is right. Sound familiar to anyone?
Her physical rehabilitation continues to be of concern. She still has significant pain in her left arm and leg due to some clotting. The pain and the swelling have hampered her progress in this area simply because it hurts her to do some of the exercises. We are hoping that this all subsides soon, so she can get the maximum benefit out of her therapy sessions. We all want to see her walking on her own as soon as possible. And I think the person who wants that more than anyone else is Karen.
I know she gets a little down at times when she is limited in what she can do, and gets very disappointed at the prospect of not being able to run again any time soon. If you have an opportunity to visit with Karen and the subject comes up, please be as positive as you can about the prospect of her resuming her running activities soon. She seems to take comfort in the idea that is “definitely going to happen”.
She still is sporting a very hip and funky haircut. The “peach fuzz”, as I like to refer to it, is slowing growing back. I’ve tried to talk her into the Sinead O’Conner look for the rest of her head, but she isn’t buying into it.
Keep the cards and pictures coming. She reads and looks at them all.
Karen & Judy Rasmussen: June 1st, 11am update
Karen seems to be recovering well since her surgery. Thankfully, she has returned from the surgical recovery floor at the hospital to a room on the 5th floor’s rehabilitation wing. She has already begun rehabilitation sessions again. We have been noticing increased movement in her left foot and greater alertness these days. However, sadly there has been a development in Karen’s life that may have a significant impact on her recovery in the coming days. We are hopeful that the impact is only temporary to her recovery progress, but are aware this will be a very difficult time for her.
As most of you have known, Judy Rasmussen has been battling lung cancer for over four years. Unfortunately, Judy lost that battle earlier this week. Karen was informed of her mother’s passing Wednesday morning and took it as well as could be expected. She seems to have understood it all, and is obviously very sad about it. Hopefully, with the help of friends, family, and the wonderful people at Mount Vernon Hospital she will come through this difficult time without any major setbacks.
The Rasmussen family has made funeral arrangements with Everly Wheatley Funeral Home in Alexandria (1500 West Braddock Rd, Alexandria; Ph 703-998-9200; click here for web link, click here for map). There will be a viewing Thursday evening at the funeral home from 5-8pm.The memorial service will be held at the Belvoir Chapel (enter Tulley Gate from Rt 1 and proceed on Pohick Rd; special note: permanent ID required) on the Ft. Belvoir Base just south of Alexandria on Friday morning at 11am (click here for Ft. Belvoir web link and general directions). I have attached a map and instructions to the Chapel (click here for "pdf" version - approx 2.5MB or click here for the "jpg" version - approx 1.2 MB; see below for "text" instructions).
The family has asked that in lieu of flowers a donation be made to Karen’s Medical Fund (see sidebar to the right for information) in memory of Judy. Karen will be attending the funeral services along with Ken, her brother Eric and myself. We are hopeful that all of you who are interested will be able to attend as well. There will be snacks and beverages available at the chapel immediately following the service, however Karen will be returning to the hospital once the service has concluded.
We apologize to many of you who are just finding out about this, but we hesitated to spread the news of Judy’s passing until we were able to safely inform Karen about it. We did not want Karen to find out about it from anyone but Ken. We also wanted to consult with Karen’s doctors to ensure there were no negative effects in Karen’s condition if we didn’t do it right.
If I may, I’d like to take a moment to express my condolences to Ken, Eric, and the rest of Judy’s family and friends. In the last two months I have gotten to know both Ken and Judy quite well as a result of the many hours we have spent together watching over Karen. Like the rest of us, Judy was devastated by what had happened to her lovely daughter. Possibly even more so, given her own unique circumstances. Judy’s main concern quickly became Karen’s welfare not necessarily her own, ensuring Karen receives the very best care available, and that she recovers fully from her injury. I know she truly wanted to see Karen through to victory. Unfortunately, she won’t be here to see it, but she can rest knowing that Karen is in good hands, and has many friends and family like all of you who have helped, and will continue to help us in the weeks, months, and years ahead. Judy will surely be missed by all of us. But, I feel fortunate to have had the opportunity to get to know her better in the last two month. If only it had been under much happier circumstances.Text Directions to Belvoir Chapel: To gain access to the base, you must enter the Tulley Gate from Route 1. This entrance is located across the street from the Hess gas station. Once you have entered the base, proceed on Pohick Rd. This will bring you all the way to the Belvoir Chapel. The Chapel will be on your left hand side at the intersection of Belvoir Rd. Also, as of June 1st, visitors can proceed directly to the vehicle search area. While in the vehicle search area, visitors will be required to produce a permanent form of identification, such as a driver's license, DoD identification card, or Common Access Card, before proceeding on to the installation.
Paul's Update: May 26th at 3:30pm
When Karen first had her injury - today marks two months since it happened, we were told it would take a very long time for her to recover. We were also told that progress would be slow and there would likely be setbacks along the way. Well, we experienced one of those setbacks this week. Unfortunately, due to a sudden lack of continuing progress in Karen's rahabilitation, the Doctors suspected and confirmed with a new CT scan that Karen had developed Hydrocephalus (water on the brain). This is due primarily to the bleeding that occured two months ago causing an obstruction in the body's natural process of flushing out of the fluid in one's brain. So, yesterday the neurosurgeon placed a Ventriculo-Peritoneal Shunt in Karen to reduce the pressure caused by the excess fluid. For those of you who are interested in these things, you can get more information by going to http://www.preemies.org/buckwal/shunt.htm. The surgeon told me yesterday after the surgery that all went well, and she should be able to resume her rehabilitation sometime after the holiday weekend. Hopefully, this will correct Karen's recent lag in the rehabilitation progress, and she can quickly get back on the road to recovery and resume the amazing progress she has previously shown. I saw Karen this morning and fed her lunch. She seems to have come through the surgery OK. She just has one hell of a headache and a really interesting haircut. I can say she has been the typical, tough Karen through this whole thing. I suspect she will come out of it just fine. I will keep you all posted, ofcourse.
Paul's Update: May 22nd @ 10:30am
I think, as we move into this period of Karen’s recovery you are likely to see fewer blog postings. There just isn’t much to report on a daily basis. I will try to give you all something a couple of times a week, unless there is big news.
Karen has had a pretty good week since my last post. She continues to regain a bit more movement in her left arm, but still can’t use it for much. Her left leg however, continues to be an area of concern. She continually complains of pain in both her left arm and left leg. The doctors are aware of this and have begun to treat her with medication.
I will say though that the last time I helped her out of her bed and into the wheelchair that she was much stronger and was doing a great deal of the standing on her own. I told Karen over the weekend that I would expect she might be standing on her own in two weeks (most likely assisted with a walker).
She continues to get a full schedule of rehab every day. In fact, Ken and I were commenting just last night that she will have a very full day today with 5 therapy sessions. Karen seems motivated though, and her stamina is improving.
Her spirits are good, and she has become quite a chatterbox at times. These days however, you can understand every word she is saying.
Paul's Update: May 16th at 6:30pm
Karen has had a fairly good set of days since my last post. There is nothing huge going on, just a tiny bit of progress each day with no major setbacks. One item of note is that late last week they removed the feeding tube from her abdomen. Apparently, it was rather painful for her, but it is a good development.
She continues to get her daily regiments of therapy – occupational, speech, physical, and now some recreational (it’s not exactly what you would think). She usually is pretty beat by the end of the day, but we can see her stamina building.
There was a meeting today with all of her doctors and therapists. I attended the meeting with Ken and Judy. It was very informative, and we got some answers to some questions that basically confirmed what we already knew. There was nothing terribly troubling in what was said, which was a good thing for me. They did say two things of note. First, they expect Karen will be in the rehab facility for another 5-6 weeks. Second, they still would like to keep the number of visitors to a minimum, especially before 4pm. What they are finding is that if she receives too many visitors early in the day she will be too tired to get the full benefit of her therapy sessions. With that in mind, we would like to limit visits on Monday through Saturday to after 4pm, and Sunday after 11am. We also would like it if you would check in with either me, or Ken and Judy before you come to the hospital. We will try to keep somewhat of a schedule so she doesn’t get overwhelmed with visitors on any given time/day. Karen is particularly susceptible to sensory overload with multiple visitors, and this tends to tire her out. She also is likely to remember less of your visit with her.
I want to thank everyone for the response so far to the last post. We are already seeing both monetary contributions and leave contributions. You all have been very generous, and we all appreciate your support for Karen.
Paul's Update/Special Requests - May 11th
Each day is another small step towards Karen’s recovery, and we all continue to be pleased with the progress she is making. However, it is obvious to us now that Karen’s recovery is going to take a long, long time. It could be a year or longer before Karen is able to go back to work.
Karen’s parents and I have been touched by the response from her friends and associates. We tell her about the blog, and how everyone is rooting for her recovery. We appreciate your kind words and your sincere concern for her.
Many of you have asked us how you can help Karen, so I thought I would take this opportunity to tell you.
The first is by Gifting Annual Leave. For those of you who either work for a federal agency, or who know someone who does, gifting annual leave is an excellent way to help her stay on her feet.
Unfortunately, Karen only has enough leave left to carry her through to May 17th. If Karen’s leave runs out she will have to go on long-term medical leave, and will likely get a significant reduction in her pay. Our hope is to bank enough gifted leave to keep her paychecks intact, and her health insurance in force. If you are a federal employee, or if you know someone who is, there is a very simple procedure to move some of your annual leave to Karen.
Another way to help Karen is financially. For the period that Karen was at Inova Fairfax Hospital – March 26th through April 20th, the hospital bill alone was $168,000. This does not include the bills for the individual doctors, and we expect the total amount to exceed half a million dollars. Thank goodness Karen has very good insurance with the Library of Congress, and most of this will get paid for. However, we are beginning to see some bills arrive in the mail that require co-payments, etc. These bills could ultimately run into the thousands.
So, I have set up a separate checking account in Karen’s name in which we can accept donations to help Karen offset these expenses. Any contribution you can make to this fund will go a long way to help ease Karen’s mind. The last thing I want her to do is begin to stress out about money. Those of us who are close to her know how proud Karen is of her home, and the small nest egg she has worked so hard to build. She would be devastated if she thought it was at risk because of her accident
My hope is to raise enough money to cover all of these expenses, and if we all could pitch in a little bit I know it can be done.
Please see the various links to the right to either gift leave or contribute money.
You have all been so wonderful in you concern for her, and I know I can speak for her parents when I say we have all been touched by the kind words in the blog, your wonderful cards, and the nice gifts some of you have sent. They all have gone to make her recovery the success it has been so far, but as I said earlier, we still have a long road ahead of us.
I also can pass these words on from Karen herself . . . “Thank you”
Paul's Update: May 8th at 1:30pm
I think this was a good weekend for Karen to catch her breath and relax with friends and family. Her good friend Missy came down from New York on Saturday, and spent most of the day with Karen. We took Karen outside for about an hour, and at the same time Karen’s father went home to get their dog Nikki. Karen enjoyed both being outdoors and visiting with her favorite poodle.
Karen also spent about two hours outside on Sunday with her friend Eden. I wasn
’t there during that period, but I’m told Karen didn’t want to go back inside. She always did like being outdoors.
Overall, Karen continues to progress well. She is showing a little more mobility in her left arm, but it is still minimal. We are hoping this week will show us more.
(other photos to follow during the week...please check back).
Paul's Update: May 5th - late evening
I think we're in that period where we may not see huge leaps in Karen'scondition.There hasn't been much of a change since Wednesday's post. They did remove the PICC line from Karen's right arm. She was beginning to focus a lot on it, and started picking at it. They weren't using it to administer anything either. She is now eating solid food, but still hospital fare. She is in pretty good spirits most days, but does get a little down sometimes, probably from sitting in the hospital all the time. We're all looking for a bit more progress on her left arm, but we aren'tseeing much yet.
Home Bistro Update (from Lisa Manion) - May 5 at 2:30pm
Many thanks to all of you who made contributions for the Home Bistro gift certificates for Karen's family and Paul. Your checks were forwarded en masse to Home Bistro and as of yesterday (May 4), the gift certificates still have not arrived. I am following up with Home Bistro to see why the delay. If you have any questions in the meantime, please don't hesitate to contact me via email (click here to email). ....or call if you have her number (as I don't want to post this on the internet).
Paul's Update: May 3rd @ 7am
I think we are probably in a period where we will continue to see minor steps of improvement over a longer period of time.
Karen continues to make progress, but the changes are incremental. For those of us who see her everyday, sometimes they are a little less noticable.
Karen is beginning to use her voice a bit more, and is whispering less and less. However, she is still difficult to hear when there are other noises competing.
We are beginning to see a little more movement in her left arm, but not much at all on her left leg. I am presuming that the more she moves her left arm, the more her brain will recognize the rest of the left side.
She seems in pretty good spirits though, and she smiles often at my stupid jokes.
Paul's Update: May 1st @ 6:40am
There really wasn't much in the way of news from the weekend, so I sort of took a break from the blog.
Karen continues her regiment of speech, occupational, and physical therapies, but gets Sunday's off. I took Friday off and spent most of the day at the hospital with her, watching her through her physical and occupational therapy sessions. I also sat with her during her lunch. All of the therapists have a unique interest in Karen, and seeing her succeed. This is apparent in the way they work with her.
She continues to improve, but sometimes the incremental changes are small. She is definitely getting better though. She still has what the therapists refer to as "left side neglect", where she has not yet regained the use of her left side. She has muscle tone and the limbs can move, but her brain is having some difficulty recognizing them, so she tends to use her right side for everything.
Karen seems to be in generally good spirits, and enjoys being able to feed herself, and drink her water. She still has a pretty good sense of humor, and will crack a smile now a then if she thinks something is funny.
It appears that she can read fairly well, except for the fact that she has difficulty holding a book open with one hand. Yesterday, I was holding a water bottle, asking her if she could read the label as I was pointing to the big letters - DEER PARK. Karen responds by saying "Established in 1947" I take a second look at the bottle, confused as to what the heck she is talking about, and noticed that just below the Deer Park is the fine print.
Seeing this, I picked up one of the books that was brought in for her, and I held it for her. By looking at her eye movement she was definitely reading the page. She seemed to enjoy what she was reading, and I think she somehow recognized the book, but wasn't quite sure. She is also able to write her name as well as others.
I'm certain she will improve fairly rapidly in these areas as she gets more in depth therapy.
Paul's Update: April 27 @ 9pm
There really isn't much new to report, other than yesterday marked one month since Karen's injury. The days all seem to blend together sometimes.
Karen continues to go to her rehab sessions each day. They tend to tire her out, so she has been sleeping a lot. I have been reading more information on aneurysms, and understand that one of the lasting effects of this type of injury is constant fatigue. This could last for over a year, depending upon the person and the severity of her injury.
I also understand that it is not uncommon for someone to have trouble with language skills when there is bleeding in the area of the brain Karen has experienced. This would explain the uninteligible talking that we are experiencing as of late. Hopefully, with continued rehabilitation this will correct itself. Often, this too can take a long time to happen.
She appears to be quite hungry these days though, and is obviously enjoying the ability to eat real food. I know they are trying to get her on solid food now too. Not all the pureed meatloaf and such she has been getting. However, she does seem to like it.
There really doesn't seem to be any indication as to how long this process will go on, but I suspect Karen could be in the rehab facility 2-4 months or longer, and will continue as an outpatient for many, many months beyond that. It probably would approach a year or more. However, we won't really know for sure until we can get the full assessment from the rehab team.
She's doing great, and has progressed a great deal since the first week, but sometimes it's like watching the grass grow, you just want more to happen, faster.
Paul's Update: April 25th at 9pm
Well, the girl never ceases to amaze us. Today was a day of wonder that I never would have expected, and frankly it bought tears to my eyes when I witnessed what I did today. Karen's dad called me at work today and said he thought I should get down to the hospital to see something. He wouldn't say what it was, so I left workearly and headed down to the hospital. Much to my surprise, there was Karen, sitting in her wheelchair, drinking from a cup of water and just talking away. It was as if it was no big deal to her.Now, don't get too carried away with the talking thing, because we couldn't understand all of it. But, we could understand a lot of it, and there were complete sentences. That's just the beginning of things, because a little later they brought her first meal, and she ate it mostly by herself. It was a little sloppy, but pretty darned amazing to us.Karen has become somewhat of a chatterbox lately too. As I said, not all of it is understandable, but there is obviously a lot going on in that head of hers.I wonder what tomorrow will bring?
Paul's Update: April 25 @ 10pm
There really isn't anything new to report on Karen's condition today.I did see her this evening, but she was asleep, and really didn't wake up the entire time I was there. However, I know many of you have been inquiring about when you could come visit Karen. We have had conversations with the doctor and her rehab team regarding visitors, and this is what we have been told ----------The doctor has said that until the therapists have completed their evaluation(s) they are limiting visits to immediate family and very close friends. This could last through to next week. She also went on to say she does not want ANY visitors before 4pm because they are reserving Karen's energy for the rehab sessions. Once we get the okay from the doctors that things have changed I will post something for all of you.Now here are my thoughts about the above. If the doctors say its ok, and the therapists say its ok, I'm still going to defer to one additional authority on this matter. That authority will be Karen herself. At this point, we are all (her parents and I) reluctant to open the doors to what could be a large number of visitors until we have a chance for Karen to express her desires. We believe she should have a say in all of this, and until she is able to express her opinion on her own, it's probably too soon anyway. I truly believe this is not too far off, but until we know she understands fully what we are talking about, we think this is the best way to handle it. We do not want to cause any undue embarassment for her, or make her feel uncomfortable having people see her. I'm sure you all will understand why the doctors are taking this position, and realize that it is only for Karen's well being and speedy recovery. We also hope you understand that we want Karen to make the decision for herself, if possible. --- Thanks for your understanding and patience.
Paul's Update: April 24 at 7am
Wow, what a change in four days!
I returned from my business trip on Sunday afternoon, and after dropping off my bags at home and grabbing a bite to eat, I went to the hospital to see Karen. When I arrived she was sitting in a wheelchair, in front of a window with her mom. She looked so much more alert, and was moving her right arm and leg a lot more. We sat there for over an hour until the nurses moved her back to her bed, where I spent another hour or so with her. She tries to talk a lot, but you can only make out short phrases, and this is only on an occassional basis. I suspect that in a fairly short time though we won't be able to keep her quiet. Won't that be terrific!
She definitely has a lot going on in her head. She looks great, has lost most of the puffiness due to the fluid retention, and she seems much more alert than ever before. However, it is clear that this process will be a long one for Karen. Even though I saw a big difference from when I left her on Wednesday at the hospital, by no means is she able to get around on her own, and she has yet to start communicating in a way that is constant or fully understandable. But, we all know the tough, stubborn (this is good) person she is.
I am sure she will be just fine, given the necessary time. The tough part is that we just don't know what the necessary time is going to be.
Karen's Parents Update #2: April 21st at 10:30pm
Karen has arrived at the Mount Vernon Hospital’s INOVA Rehabilitation Center.
The regimen will be a very intensive therapy. At Fairfax Hospital she had 30-45 minutes of therapy per day and at Mount Vernon Rehabilitation Center she will have three to four hours of therapy throughout the day. She will be supervised by a team led by a physician who is board certified in physical medicine and rehabilitation and will receive occupational, speech, physical and other forms of therapy on weekdays. Due to the schedule and her need to become acclimated to her new surroundings her Doctor suggested that visitation be kept to a minimum for the first week and then after 4 PM on weekdays. They schedule the one hour sessions through out the day to give the patients time to rest in between.
We are encouraged as this is the premier rehabilitation facility in Northern Virginia. The entire staff at INOVA Fairfax Hospital worked very hard to make sure Karen qualified for admission. We owe them our gratitude for their help and expect great things from Karen.
Ken and Judy Rasmussen
Update from Karen's Parents: April 21st at 1pm
In keeping our promise to Paul to update the blog during his absence, here is the latest news.
Karen is still making "baby steps" in her effort to regain her abilities and it will be a long fight, perhaps 6 or more months of rehabilitation. The good news is that she has progressed enough to leave INOVA Fairfax Hospital where she has been since her admission on March 26. She will be transferred and enrolled as an inpatient at the intensive rehabilitation facility at INOVA Mount Vernon Hospital. I will give more details once we arrive there and Karen is assigned a room.
This has been a very emotional experience for her mother and me as Karen has beaten the odds in first surviving and then slowly progressing with rehabilitation. There are good days and bad days and we have been advised to expect plateaus in progress, too. She has many months of tough times ahead to restore her ability to stand, talk, feed herself and comprehend her surroundings. At this time she remains on a feeding tube. Knowing Karen's energy and toughness, I know that she will do her best. How far she is able to progress is to be determined. The wonderful care at INOVA Fairfax Hospital saved her life and started her on the path to recovery. Also due a big thanks are the three Fairfax County EMS Paramedics who restored her breathing on the running trail. They are true heroes! And also deserving of our thanks and gratitude are you, her friends and fellow runners, who have sent expressions of support.
Thank you!
Judy and Ken Rasmussen
Paul's Update: April 19th @ 8pm
Karen continues to hold her own during the physical therapy sessions. Today they worked more on her sitting up on the side of the bed, and this time they let her go to balance on her own. She performed wonderfully, and the therapist were themselves very exited about how well Karen was doing.
They stood her up for a few minutes, but this was very hard for all. Tomorrow they are going to try it again.
After the session was over, they put her in the chair again and we wheeled her out to the lobby where she could look out through the windows to a lovely view of the roof, and the helicopter pad. Hey, when you’ve been cooped up in the hospital for three weeks even that can be pretty cool.
She was getting tired and I took her back to her room. I left to go to work shortly afterwards, and her parents came for the afternoon shift. They said she seemed a little tired and she probably was, given the workout I observed.
I leave tomorrow for a business trip for a couple of days. I will try to post based on the information I get from her parents. For those of you who do see Karen, feel free to post your own observations. If you don’t see a post from me, don’t freak out. I’ll be back online Sunday when I return.
In the meantime, kick some butt Karen !
Paul's Update: April 18 @ 10:40pm
Well, just when you think you've seen it all the woman keeps on amazing us.
It's funny sometimes when certain things happen. You just have to tell yourself there must be a reason for this. I don't really know what, but I decided at the last minute today to drive to the hospital to see Karen during lunch, instead of going tonight. Much to my surprise, when I walked into the room, there she was, sitting upright in a chair with her eyes wide open. She had just finished her therapy session for the day, and they wanted to leave her in the chair for awhile. It was amazing.
She was more alert than I had ever seen her, and she had that sparkle in her eyes again. The nurses were all talking about how much she had improved in such a short period of time. She had been talking a bit more, even constructing short phrases. She also has begun moving her right arm more -raising it to scratch her nose, etc. I was told by her mom that the social worker we got to know in the ICU who was in charge of Karen's case came to visit today. When she arrived and saw Karen sitting in the chair looking at her she was so amazed at what she was seeing see started to weep.
It seems as though the therapy is working wonders, and doing exactly what they said it would. We are all very excited about it and can't wait until tomorrow to see what surprises are in store for us. Hopefully, they will all continue to be good.
Paul's Update: April 18th at 7am
Karen continues to give us little surprises each day it seems. She is awake more often now, and her eyes a little brighter than they have been. She is receiving occupational and physical therapy daily. I believe her increased alertness is attributable in a large part to this increased activity.I also think Karen is much more alert and active in the mornings. For those of us that know her well this is not too surprising. I have switched back to my nightly visits due to work, but Karen's parents go during the day.Yesterday morning Karen spoke again. This time Judy was the recipient of Karen answering "Judy" when asked if she knew what her mother's name was.From where I sit, this is bigger news then her answering the question with a yes on Saturday. To me this confirms not only that she is there, but her memory is definitely intact.More in the coming days, I am sure.
Paul's Friday/Saturday Update: April 15 @6:30pm
The Doctor that is overseeing Karen's care had told Judy and Ken that we might start seeing some changes by Friday, once she was moved to her new ward. He had said that she really needed to get some physical and occupational therapy going in order for her to progress to the next stage.
Karen started her sessions with the therapists on Friday. There wasn't much to report as a result of yesterday's session, and when I went to see her last night she seemed quite tired and was sleeping a lot. She had been awake several times I was told, and particularly during her session, her father said she had her eyes open the whole time.
Today I went in to see her at 10am when visiting hours started. I was there for a while by myself and with Karen's friends Susie and Pete from NYC. The physical therapist came in and asked if I would help her out this time because she wanted to get Karen sitting up in the bed. We sat her with her feet hanging over the bed, and Karen was immediately opening her eyes and clearly trying to focus on the activities. The therapist asked me to sit in the chair in front of Karen so she was looking at a familiar face. We took some photos off the wall and showed them to her. She was definitely focusing on the photos, recognized the one of the two of us when we were on a camping trip, and tracked them with her eyes when I moved them from one side to another. The therapist was pleased with this, and said this was definitely a good sign. I don't think she really needed to tell me this, since I was already about to burst with excitement as I was watching.
Karen soon tired, and the therapist was concerned she was getting dizzy, so we put her back in the bed. As we laid her head back on the pillow the therapist, concerned that Karen was perspiring a little from obvious fatigue, matter of factly asked Karen if she was OK. Well, without skipping a beat Karen spoke her first words and said very simply, "yes". Well, I about fell on the floor, but there was no mistaking it, and the therapist confirmed that I wasn't imagining things.
This may not seem like that much to the average person, but all of you know we have been looking for some solid evidence to prove without a doubt that Karen was in there, she just needed to get out.
We tried to get her to say my name, but she was very tired and fell back asleep. I was quite satisfied with the day by then, and was willing to take that little gift to the bank along with the big one I received before anyone else arrived. While I was sitting with her, I was talking to her about many things and it seemed clear to me that she was understanding what I was saying most of the time. I even thought she had nodded her head when I asked her a question. But the big gift of the day for me was when I asked her if she could give me a kiss. Well, I have to tell you, she puckered those lips right up, and I accepted it with a big smile, and a few tears. When I left her for the day I got another one for the road.
So, all in all it was a banner day, especially Karen. Hopefully, we will start seeing more and more of these, and in time we will all be having regular conversations with her.
She is still not out of the woods, and the cloud of the aneurysm still looms overhead, but this was about the best Easter gift we could have asked for.
Happy Easter to all !
Project "Karen from A to Z"
We are calling on all family and friends of Karen for your help with this project. We are putting together a book/album for Karen and hope everyone can contribute.
The book will be a photo album with 200 slots for 4x6-inch photos/stories. The album cover is a yellow background and bright blueflower, looks like it was made for Karen in particular. What we would like to fill the album with is your stories that help us celebrate all the special traits, events, qualities, memories and favorites that we all cherish or have enjoyed experiencing with Karen. Any photos that illustrates your story or a favorite about Karen are welcomed too, as well as, favorite photos of Karen too. When writing your stories, please keep in mind that each slot can only accommodate approximately a 4x7 piece of paper or photo, so try to keep the stories short, sweet and to the point when possible. You can e-mail your contributions directly to the PROJECT KAREN email link (click here) or request to receive a mailing address through the e-mail link.
As the stories are gathered, the book will be built into an encyclopedia format. Your stories will be the entries in the book and will help celebrate our special girl Karen, from A to Z. You do not need to worry about what letter of the alphabet your story will fulfill, but if anyone has a few good q, x and z fitting ideas they are most welcomed. If we are short stories to fill the book after the initial sending, then we will make follow up pleas. If one subject is submitted my many, than that subject may have multiple entries in the book or one compilation entry credited to all submitters. After the book is completed, it will be sent immediately for Karen, Paul and her family to enjoy....so send your stories as soon as you can. Our hopes for this book is that it will help celebrate all that we love about Karen and help Karen remember all the fun things and maybe even learn about some of the traits and qualities that we love about her that she never realized we knew or saw.
So who is going to tell us about poodles or Coach or tapas or Penn State?
Paul's Update: April 13th at 10:45pm
Karen continues to be in what I referred to her Doctor as a period of “regression”. She isn’t opening her eyes as much, and not really moving as much as she was a couple of days ago. I asked the Dr. about this, and he said it is normal to see periods where the patient will be less active. He also reiterated that it will just take time.
Karen has begun her sessions with the occupational and physical therapists, and is likely to see them even more now that she had been moved out of ICU. She is in a ward where there are four patients for each nurse.
We will provide visiting information in a couple of days, as soon as we get a better handle on the visitation rules.
Here movement out of ICU is somewhat of a double edged sword for us. She was very well cared for in the ICU, and we grew accustomed to the attention she received. We hope she receives the same level of care in her new situation, but we don’t know for sure.
Paul's Update: April 12th at 11:45pm
Not much activity on Karen's part today. She is spending a lot more time itseems with her eyes closed, and not moving much. The Doctors did remove the feeding tube from her nose, and put an abdominal feeding tube in. They also removed the central line from her neck and placed a PICC on her upper right arm. She did seem a bit more comfortable this evening when I saw her. They still intend to move her, once a bed is available in the other ward.
Not much else to report.
Paul's Update: April 11th @ 11pm
Karen's brother, her parent's and I have sort of been splitting duties at the hospital lately. It's an incredibly busy week for me at work, so I have been taking the evening shift and going in at 8:30pm. This is usually a pretty quiet time, but unfortunately as many of you who know Karen will agree, it's a pretty quiet time for her too. What I mean to say is that she's usually zonked out by 9-9:30 on any normal evening, so these days she'd pretty out of it by the time I arrive. She'll never be able to complain about me snoring again.
Anyway, Eric has been taking the morning shift, and her parents have been doing the afternoon. They all get to see much more in the way of activity, and are able to get a lot more information than I do at night. So, I have to rely on them for much of my information the last couple of days.
Here's what's going on lately. Karen has been dealing with some blood clots in both her arms and legs. They are treating her for them and watching her very carefully. They are concerned, but I don't think alarmed at this point. We'll see how that goes. They continue to do tests each day, but have not come to any difinitive conclusions as to her long term mental/physical condition. We do know that she continues to move her right arm and leg more, and has begun to move her left arm and leg a little. She is doing well with her breathing off of the ventilator. They have put off changing the feeding tube for now. I'm not sure why. They are planning to move her in the next few days out of the ICU and into another ward as soon as a bed becomes available.
This is a good sign, and I know they want to move ahead with some rehab to get her exercising her limbs. This in no way means that she will be doing any of this on her own -we are still not there yet. However, I am told that today both Eric and a nurse believe that Karen made an attempt to talk. Hopefully she will continue to do this more and more. We will certainly let all know if this happens. Obviously, this would be a major development if it were to continue.
Stay tuned . . .
Paul's Update: April 10th @ 11:30pm
There really isn't much to report as of late on Karen's condition. She still continues to open her eyes periodically, but no real indication as to what she understands. It looks as though tomorrow the doctors will be removing the feeding tube from her nose and replacing it with one that leads directly to her stomach through her abdoman. I suspect we will have days go by with very little change. Hopefully, we will see her begin to understand and communicate with us soon.
Update Status: Monday April 10 @ 12:30pm
All: The most recent post I have is the one listed below. As soon as I hear from Paul I will post immediately. - Steve
Paul's Update: Friday/Saturday April 7th/8th
The procedure to remove Karen's breathing tube was rather uneventful yesterday, but went well. We were all very pleased to see that it went without a hitch and with almost no discomfort for Karen. She seems much more relaxed now that she is able to breath on her own without a tube in her throat. She also seems much more peaceful when she sleeps.
I visited her last night again, and I saw a noticable difference in the way she looked compared to my visit that morning. The swelling in her lips had gone down already, and the redness from the tape that was used to hold the tube in place was already going away.
That's the good news.
I can't speak for the rest of Karen's family, but I think they would agree with me when I say that we were probably a little naive in our expectations of what would occur after the tube was removed. I had in my mind that since Karen was under sedation to keep her more comfortable while the breathing tube was there, that once they took it out and stopped sedating her we would see more than we did. It was pretty hard reality check for all of us.
Karen appears to have suffered significant trauma to the brain as a result of the aneurysm, and it will take some time for us to truly understand what the extent of the injury is. We all believe Karen is there, but for now, she is trapped inside and can't get out. Even though she will open her eyes, she doesn't appear to focus on, or track what it is that she is seeing. I think she hears us when we speak to her, and probably knows who we are when we do. The nurses have told us there appears to be some paralysis on her left side, but the extent or how permanent this will be is still unknown, and probably won't be for a while. I keep telling myself that the important thing to remember is that she has made it this far.
My goal with these updates has always been to keep everyone informed as to her progress, but I also want to make sure everyone is aware of the true picture. I know we are all thankful that she has made it this far, and that she is still with us. Tomorrow will be two weeks from her injury and she had beaten all odds at this point.
The Doctors and Nurses at the hospital have been extraordinary in their care for her, and they should all receives medals for what they have done up to this point. However, I think we all know that a good part of Karen's success so far is a result of Karen and the stubborn fighter that she is. Hopefully, these factors will continue to bear fruit down the road, but it is clear that this is going to take some time. Possibly, this will take a very long time.
I have been reading your comments to my posts, and I know Karen's family have been reading them as well. We all appreciate your kind words, your wonderful cards, and all of the music you have been sending. We are keeping track who sent evrything, so Karen will know who it came from. Keep them coming. I believe they help all of us, especially Karen.
For now, I think it is simply a waiting game to see what is going to happen. I would imagine that in the coming week or so she will be moved out of ICU and into another ward where more visitors are allowed. I will keep you informed as to when this happens.
In the meantime, I will continue to post updates, and hopefully I can bring more good news.
Paul's Update: April 7 - 12:30am
There were only two things of note today, but both of them were very good
news.
First, the vasospasms appear to have ended. This morning's venal doppler of Karen's head confirmed what they saw yesterday, so it was the last one she will have. They are no longer needing to elevate her blood pressure, so today her pressure was back down to a more normal level.
Second, we were informed that tomorrow/Friday morning they intend to remove the breathing tube to allow Karen to breath on her own. The Doctors feel she is ready and they are anxious to see how she does. Once she has the breathing tube out, they can remove all sedatives and do a more complete evaluation of her condition, both mentally and physically.
So, Friday and the two or three days that follow should reveal many things.
Paul's Update for Wednesday April 5th
Karen continues to do a little better each day. They continue to periodically reduce her sedative to see how she is going to react, but each time she gets agitated. We believe this is because she is aware of many things, and probably doesn't know what has happened to her, or frankly why she has a tube stuck down her throat. Ideally, they would like to fix all of that by taking the tube out. That may happen here either Thursday or Friday. We will see.
The Doctors and Nurses have indicated that they believe that spasms have subsided or stopped. This is great news.
The big news of the day though is the great pair of Converse All Stars that her
brother Eric bought her. The Nurses indicated that her feet were beginning to drop from lying in bed for so long, and some good high topped sneakers would take care of this. So, now she is sporting some white ones with checkered green and black tongues and laces on the top and a bright yellow stripe around the edge. Very appropriate for Karen I would have to say. I think she'll get a real "kick" out of them when she realizes they are on her.
I have purchased an inexpensive CD player that now sits on the table in her room. So, bring the music on. You can send it to the hospital, but it may be easier to send to Karen at my office:
Karen
c/o Political C.F.O.s., Inc.
201 King Street, Suite 200
Alexandria, VA 22314
Paul's Update: April 4th at 8:30pm
Today was a rather interesting one. Without going too much into detail I will fill you in on the most important details. The Doctors are preparing to take Karen off the ventilator. They feel it is an important step in her recovery, but want to make sure they do it at the appropriate time. I would expect that this could happen rather soon.
Part of this process has been both to periodically turn the respirator off, so she breaths on her own for several hours at a time. This is partially to build up her stamina. They are rather pleased with her pulmonary progress, and attribute it to her physical condition. All that running does pay off. Another part of the process is to reduce her sedative to see how she reacts.
This morning, I was there when the were reducing her sedative. I am convinced now that Karen knew that I was there. I also believe that she sensed something was wrong, because she appeared rather worried about her situation. It seemed as though she calmed down a little when I spoke to her and told her that everything was going to be ok. However, I think her frustration was in part due to that fact that she could not respond. These are all good things of course, but we just don't know the extent of her capacities, and won't know for a while.
For those of you who have sent cards, they are all being taped to the door leading in to Karen's room for all to see. Thanks so much for sending them.
Providing Support to Paul & Karen's Parents
Dear Friends of Karen -
As a way of providing support to Paul and Karen's parents, we'd like to purchase gift certificates for them from Home Bistro (www.homebistro.com), a company that specializes in "Chef-prepared meals delivered to your door nationwide. From Freezer to Table in About 10 Minutes." The meals are vacuum sealed and flash-frozen, packed in dry ice, and shipped in a special insulated cooler.
If you're interested in making a contribution towards these gift certificates, please send your check (payable to HOME BISTRO -- please write your phone number on the check) to:
Lisa Manion
P.O. Box 25322
Alexandria, VA 22313
We're aiming to purchase the gift certificates by the end of next week, so please mail your check by Tuesday, April 11.
Thank you!
Paul's Update: Monday, April 3rd at 10:40pm
The weekend seemed to drag on forever. Without work to keep me occupied it was all I could do not to think about Karen stuck in a hospital bed. Especially with the weather as nice as it was, and how she was so much looking forward to Spring's arrival.
Karen continues to make it through each day without any major problems. Saturday was particularly difficult though, since we saw very little activity. There wasn't much to report, and the Dr.s didn't provide much in the way of encouraging news.
Sunday, however was a completely different story. Karen's brother, Eric has flown into town from California and was there with Karen's mother and me for the later part of the afternoon. Karen had begun to open her eyes briefly several times during the day. While her eyes were opened she did not appear to focus, or track anything, but it was a very positive sign for all of us. Even the medical staff were encouraged. When we saw this happening we began speaking to her. We all agree that it seemed as though she knew we were there, yet she was frustrated that she wasn't able to communicate in anyway. This went on for about five or ten minutes while we were there, until she appeared to tire and go back to sleep.
Today, the nurse said she has been moving her arms on both sides more, andeven raised her right arm off of the bed once. These may seem like small and trivial things, but we'll take whatever we can at this point.
She continues to improve her breathing, and is generally breathing on herown with only slight assistance from the respirator. They are considering the possibility of taking her off the respirator sometime in the nextseveral days if she continues to grow stronger.
This is good progress, but they are still very cautious about the risk of spasms. They say that the spasm risk runs from about the 3rd to 5th day through the 10th to 14th day. So, we are looking at as late as next Sunday before we are through this very critical period.
That's about all I have to add at this time, but I wanted to take a momentto reinforce what I have tried to express in my earlier posts. Karen isextremely sick. Even with the events of this weekend and today, she has along, long way to go and she is not by any stretch of the imagination out ofthe woods. Even if we assume that there are no setbacks - and there will besome, Karen is looking at spending two to three months in the hospital.Then, if all goes well, she will likely need a very long time for rehabilitation.
Karen has beaten a lot of the odds up to this point. Frankly, very few individuals in her position ever make it to the hospital alive, much less past the first week. We are thankful that she is still with us and fighting. We are not surprised that she continues to fight hard. She does however, have many tough battles ahead of her.
My goal in saying this is to make certain everyone fully understands the severity of Karen's situation.
If you haven't yet gone to the links for theBrain Aneurysm Foundation I would encourage you to do so.
Paul's Update: March 31st at 6pm
Not much change to report today. She is breathing more on her own with the respirator, so the pulmonary progress is good. Other than that, we still are in a holding pattern with the vasospasms. I will see her Saturday and Sunday, but may not update until Monday.
Update from Paul - March 30th at 5:26pm
Karen continues to be monitored for vasospasms. This is a very critical time for her as you will understand if you have taken a chance to visit one of the aneurysm websites. We are told it can take as long as ten days or so to make is safely through this period. The risk to Karen for a possible stroke is very high in her particular case. Since the neurologists were unable to successfully complete the “coil” procedure, her aneurysm is being left to heal on its own.
Here’s the catch with Karen, the way you control the vasospasms is with medication that elevates the blood pressure, forcing the blood to flow through the vessels. Elevated blood pressure could cause the aneurysm to bleed again. Obviously, this would be a serious setback. So, they are watching things very closely, and she receives daily dopler sonograms to measure the velocity of the blood flow in the blood vessels in her head.
Today, they said there has been a slight elevation in the velocity (higher velocity means restricted flow), but that she was “being a good girl”. We will be counting the days of course, praying that she makes it through this critical time safely.
We did see some VERY limited motor activity, but the Doctors are reluctant to get too excited about it. From our perspective it was more than yesterday. She still remains unconscious though, which is very frustrating for all of us.
Update from Paul; Wed March 29th, 6:40pm
I will try to give everyone updates each day, after I am at the hospital to visit Karen. Since often times there is no real change in her progress. My only report may be that there is no change.
I am not going hold anything back here. Karen is in very serious trouble. I would encourage anyone to go to the link for the
Aneurysm Foundation. They have a wealth of information.
Currently, we are in a holding pattern, waiting to see how she does in the next ten days or so. If you go to the Aneurysm Foundation’s website, you will read about
vasospasms occurring immediately following the aneurysm. They are treating her for this possibility, and running daily tests to check for vasospasms.
As of today, she is not awake, however yesterday we all believe she responded occasionally to our calls to her by moving her head slightly. We are all hoping for some improvement soon.
Karen's Friends (FOK) Happy Hour: Friday 6pm....
COCKTAILS for KAREN
Friday, March 31
6:00 PM
Stardust Restaurant (608 Montgomery Street, Old Town Alexandria)
You're invited to join other FOKs (Friends of Karen) for cocktails this Friday at Stardust Restaurant. As you all know, Karen is a terrific person and wonderful friend and I thought it might be good for all of us to get to know each other, since undoubtedly our paths will be crossing in the coming weeks as we support Karen through her recovery.
Please RSVP to Lisa Manion (703.975.2725) as reservations are required at Stardust.
Thanks -- see you Friday!
Lisa
When Karen gets well I will......
(Input what 'activity' Karen can look forward to with you once she's up and about again. E.g., shopping, NOVA Happy Hour, a dinner out, a dinner in, or ...??? Creativity is of the essence :-)
Jill's email (March 29th)
Hi everybody- not too much to report right now. Everything is pretty status quo with Karen's condition. I just got back from visiting her after meeting up with Paul. The doctors are keeping her very sedated while they continue to treat the pneumonia, although she has responded to Paul’s voice. No decisions regarding surgery will be made until the pneumonia is cleared up.
So – things are still very serious, and it will be some time before next steps are taken.
It looks like Karen will be in the hospital for several weeks. It would be best at this point (next week or so) to hold off on visiting – there will be plenty of opportunity for this further down the road, when Karen is awake.
On a different note – does anyone have experience setting up blogs? Paul was thinking that would be a good way to share information and also allow friends to post notes to Karen that she can read later. Anyone?
Hope all is well with you –
Jill
Jeannie's email (Mar27th)
I will call you in a little while. I FW'd your message to several RWOL forumites and RTB members (like Sarah and Abigail) who I am sure would want to know. If there is ANYTHING we can do, let us know. I've already added Karen to the prayer vine at church and we'll pray for her by name at all the Masses this weekend at church.
Jeannie Craig
