Mom is home!

Good News -- Mom was released tonight from the hospital. Her doctors are confident the Heparin/Cumadin combination has done it's job for now.

We arrived in Surprise almost the same time they got home from the hospital. She was able to sit in the chair and chat for 2 hours before we were all ready for bed! She's tired and appears to have pulled a muscle in her neck but doing well.

She needs to rest a lot but can have visitors & calls!

Thanks for your support!

Back In The Hospital

On November 17, 2009, Mom was hospitalized again for blood clots in her legs. These are the same blood clots she's had since she was released in June. Unfortunately, 3 weeks ago, despite a daily regimen of cumadin pills, the blood clots suddenly started getting harder, thicker and more painful.

After a doppler scan on November 16, the Doctor decided to hospitalize her so her could add a IV drip of Heparin in addition to the cumadin. Over the last week, the pain in her legs has lessened a little but not as much as we hoped. In addition, she has developed pain in her neck and shoulders which they are treating with morphine.

Today, while trying to figure out why the pain and too slow reversal of the blood clots, they did a procedure to check the clot filter which was placed in her vena cava while she was on the ventilator. They discovered it is basically clogged slowing down the blood flow which may be why it's taking so long for the clots to break up despite the Heparin and Cumadin. They put a catheter to try to break up the clots by the filter... but with her history, it was decided to take out the catheter immediately.

Unfortunately, because of the concern for a hemarrage like she had last May, they are not sure what they are going to do about the "clog". At this hour, they are continuing the current course of treatment and watching for bleeding from procedure.

So, it does not appear she will be home for Thanksgiving. We will be traveling there so they are not alone... and, lest we forget, to put up the Christmas decorations - UGH! :)

I will continue to update the blog until she is home from the hospital. As always, you can call me for updates - 520-488-8279. Please no calls to Dad or visitors to the hospital at this time. With the amount of pain medication, she is a little out of it. I will let you know when it is ok to call again.

Thanks for your support.
Katie and Sullivan Family

Final Health Blog Posting For Karen

As of yesterday, Karen completed a successful series of occupational therapy tests. She no longer will require any physical therapy. We knew this was coming as she has quickly improved all motions of her upper body, including shoulders, arms, elbows, and hands.

Karen will continue with hospital physical therapy due to multiple problems caused by the blood clots in her legs for at least two more weeks. However, she has made good strides from when she started. She can get in and out of our pool without any assistance. All pillows have been removed from "her" chairs as she can now get up herself without needing a higher spot from which to get up. She continues to require walking with a walker with balance and leg strength are still not what they need to be. I expect her to be able to discontinue the walker use by mid to late August. We're hoping and praying that she can return to her favorite activity, golf, sometime this fall. It will probably require most of her blood clots being dissolved by coumadin, but we're optimistic that will happen sooner rather than later.

We have now finalized our plans for a two week trip to Aruba the last week of September and the firtst week of October. We will be home in time to celebrate our 50th Wedding Anniversary on October 10th. Later on in October, we plan on going to Bonita Springs, Florida for a reunion with her high school friends. We're making up for lost time!

Her rapid recovery has been helped along with all the positive thoughts and prayers from our family, relatives, and friends. We strongly believe that all the prayers on her behalf have been answered with her comparatively quick recovery.

She is now back on her computer, thus there is no need for the continued posting on her health blog. Better that all of you and she correspond directly by e-mail, phone, or personal time together. Her e-mail address is karen-surprise@cox.net for anyone who might not have it. Needless to say, she loves to be "back" to a more normal lifestyle. She looks forward to speaking to everyone ditectly.

Our combined "thanks" for being there for us in so many ways during the journey she has had from the life threatening beginning she beat to her current remarkable recovery. We feel very blessed to have the support of so many people during the last three months.

Love, Bill

Continued Progress

In spite of ongoing leg pain, Karen continues to gain strength and flexibility in her recovery from the blood clot effects. With the additional two concrete blocks on the pool steps, she can virtually get in and out of the pool by herself. I'm always just behind her, in case she has any difficulty.

With temperatures around 115 every day, the water is a welcome place to spend time. She uses the time to good advantage walking and swimming "laps' in our 33 foot pool. The water temperature is in the 92-94 range, but still is somewhat refreshing, though 86-88 would be nicer.

The summer is about half over now. I fully expect Karen to be walking well on her own by the end of August. This, of course, is without any kind of unexpected setback.

She loves to get phone calls and visits. Please feel free to visit, but with a call in advance to inbsure her availability. She still takes some naps, along with the many visits to doctors, thus the need to call in advance of visiting. She loves to hear from family, relatives, and friends.

Love, Bill

Success In Our Pool

I got two concrete blocks (8"X8"X16") and used each of them to make the entry and exit from the pool much easier for Karen. She did it twice, and we felt equally good about this success as it allows her to go into the pool for therapy as many times daily as she wants to. The doctor today re-stated that walking/swimming in the pool is excellent therapy. She will continue with physical and occupational therapy at the hospital for as long as Medicare will support her therapy.

Although the doctor didn't like the swollen, red, and painful legs, he said it was to be expected. He re-iterated the need to keep her legs elevated whenever possible. The coumadin is doing its job, and time is now the only thing we need for the blood clots to break up. In the meantime, her pain should diminish as the clots slowly break up.

Karen is definitely getting stronger. She is determined to be completely mobile again, possibly later rather than sooner, but nonetheless to be able to travel and play golf again down the road. Her faith has played a big part in her recovery thus far, and we know it will continue to do so.

Love, Bill

Good and Bad Day

Karen had her best day at therapy. In both PT and OT, the therapists said she is making progress in spite of her painful legs. She is determined to be back on the golf course sometime later this year. This is a great motivator!

In the months just prior to her lengthy hospital stay, Karen had cataracts removed from both of her eyes. The results were great as both eyes could see at a 20/30 rating. Since coming home from the hospital, her vision has declined. Her opthamologist checked her sight today and got a rating of 20/50 on both eyes. She also sees some double images and glare bothers her. The doctor is having a special test run in two weeks to try to determine what has changed. He found no reason today for such a precipitous drop as well as her other other difficulties. He ventured a guess that the great blood loss in her hospital ordeal may possibly be the reason. He also stated that her eyes may have been negatively affected while she was onj the ventilator. Also the combinations of multiple meds during her three weeks in intensive care may also have affected her sight. She just can't catch a break!

That's about all for now.

Love, Bill

Lingering Leg Pains

On a 1 to 10 scale for pain, Karen's pain remains at an "8". It's really tough for her to do anything requiring leg dexterity. I'm giving her dilaudid as needed, and tylenol between her dilaudid pain pills. It's not what we like, but keeping her out of pain is a priority. Both of her doctors stated as pain-free as possible should be our direction.

The leg pains inhibit her physical therapy, not occupational therapy. Although the PT therapists understand the nature and severity of her pain, they continue to press her to do as much as possible. We both wish she could do more, but it's next to impossible given her pain level. Again, it will take a total of 6-9 months to fully rid her legs of the clots. The coumadin, along with PT and time, are the only means we have to reduce the blood clots as far as we know.

Tomorrow, we make our final visit to Karen's opthamologist in follow-up to her earlier cataract removal surgery on both eyes. Unfortunately, we never did get to make the final follow-up visit as her seven week hospital stay occurred before we could see that doctor. The surgery seems to have worked, except for her continued difficulty reading or anything in print. She will see her her internist on Wednesday, and we'll try to find out if anything additional can be done to combat her severe leg pains.

Megan is with us just about every day since her return from her two week stay with Kevin, Karrie, and the kids. She had a wonderful time and is now looking forward to her trip to Seattle to be with Pat and Mike and their families. Megan has a hard time understanding what is going on with Karen, but I've now got her at the point now where she no longer breaks down when with Karen.

We're still planning our late September/early October time in Aruba. After spending these two weeks in Aruba, we'll be celebrating our 50th wedding anniversary here in Sun City Grand. Again, we're hoping and praying that Karen is OK for these two very special times in our lives together. Please join us in praying that she is capable of enjoying both events.

Love, Bill

Difficulties With Legs

A doppler procedure performed two days ago revealed no additional clots in Karen's legs, which is the good news. The bad news is that her legs are extremely swollen, hard, and constantly in pain. We are trying to reduce the swelling by keeping her legs elevated, little salt in her diet, and daily doses of lasix(blood thinner). The physical therapy is also considered as an additional tool in reducing the blood clots. The major factor is the continued use of warfarin(coumadin generic).The doctor again said that it will be 6-9 months before they are gone.

Karen gets around pretty well with her walker. We've been to a movie, eaten out, and of course visited many doctors without serious mishap. The only real problem we've experienced is getting her up from some chairs which are too low. At home, we have two pillows on all of the chairs she uses. We've also been trying to get to our local community pool once daily. Walking and swimming is excellent therapy for her. We also try to do the prescribed therapy, given us at the hospital, every day we're not at the hospital therapy unit. We've missed the past two days as Karen had her monthly 5-hour infusion of gamma globulin yesterday, and has been in no shape(headaches and exhaustion) to do therapy nor to go into the pool.

She is a stubborn lady, so will not be giving up on the therapy. She "is" going to get better, and is working hard so that she may some day be able to get back out on our golf courses.

Love, Bill

Continued Progress

We saw both Karen's pulmonogist and primary doctor today. Her coumadin is a little high, and the amount is being slightly reduced to bring the level into the proper range. Her legs are very sore due primarily to the blood clots. Over the past several days they seem to have gotten worse. Another doppler of her legs is being done tomorrow. I'll pass on the results when I get them. In the meantime, lasix is being started to remove excess water in her legs.

With Jeannie here, we've gone into our Cimarron Community Pool, every day. It has an ocean entry which eliminates steps, making it much easier for Karen to get in and out. Being in the water is therapeutic and enjoyable for her. Jeannie is making all of our meals and helping us in many ways. We're really going to miss her when she leaves on Friday.

Jeannie, Karen and I had dinner with Katie, Tim, and Caitlyn on Sunday night at Fogo De Chao in Scottsdale. It was wonderful; many varieties of meats arrive at out table to be cut and served to our cooked request. We've been to a franchise in Aruba which is the same as this one. Apparently there are many of these franchises world wide. Wherever they are, all of us recommend them highly.

Our temps are now in the 108 to 115 range. Our swimming is done in the mornings. The girls take naps in the afternoon, while I get a chance to read the paper and do any chores needed.

Love, Bill

Improving Day By Day

Karen got in and out of our pool today with the help of a woman giving her three showers weekly, and some help from me. Unfortunately, I can't do it alone, thus she won't be able to use the pool until she can do it without help. Tomorrow, I think we'll try one of our community pools which has an ocean walk-in, which should work quite well. I'll use the hot tub while she walks and exercises in the pool. This Friday will be the last time for the "shower lady" as Karen feels she can hereafter take her shower without help.

On Friday, Jeanne Clark, our friend from Chicago will fly in and stay with us for seven days or until June 10. This is really a wonderful thing on Jeanne's part. She will help in all areas with Karen, which will be a great help to me. I'm sure she will make some meals as I'm pretty sure she won't consider my cooking among the best she has ever had. Karen is very excited to have Jeanne coming to stay with us for the week.

The twice-weekly physical and occupational therapy sessions continue at the hospital. Though the sessions are only 1/2 hour each, Karen is exhausted after completing the sessions. There has been noticeable improvement each day. However, her legs remain very painful due to the blood clots running the full length of both. The exercising, combined with the blood thinner she is taking are undoubtedly working, albeit very slowly. Her legs are often times warm, and always very hard to the touch. Care must be used whenever there is a need to touch her legs as any touch hurts pretty badly.

My thanks again to all of you "bloggers" for your continuing thoughts and prayers on Karen's behalf. If you would like to leave a note for Karen, simply click on the word "comments" at the conclusion of our posting, following the prompts as it comes up, and I'll see to it that she sees your comments. The cards and letters do a lot for her psyche.

Love All You Guys, Bill

Pool Difficulties

Mom did great getting into the pool this weekend. It was excellent for her and she was able to move around really, really well. I think the swelling was a little less in her right foot after working the in the pool.
Here's the problem -- she could get in no problem... but can't get out without help. Tim and I could get her out without issue but she can't do it on her own. Dad can't help her without hurting himself. So I gave Dad a suggestion of seeing if we could get an aide who would be willing to get in the pool. He's going to explore that tomorrow.
She's a little down as she really wanted to be able to get out on her own. Hopefully, the aide deal will work out.
It was great to be there... and have both of them home. I was able to get Dad out to the Transformer movie... it as fun.

Hospital Therapy

Karen completed her first sessions of OT and PT this week. She has the most severe problem with her legs, thus the physical therapy will be the most important of the two therapies for her. The occupational therapy will be concentrating on improving her strength in her shoulderrs and arms. She has the full range of motions, but is pretty weak in the upper torso. She is unable to get up from regular chairs and/or lazyboy rockers without two pillows under her when she gets into each of the chairs. The wheelchair also needs a lift in it for her to get out to her walker. The blood clots in both legs remain painful, but not as severe as the pain in them a few weeks ago. The therapists are pushing her quite hard, always reminding her that she will have to push through each exercise, regardless of the pain she might encounter. This is sometimes hard for her to accept, but I know that she realizes she has to work hard to have a chance to use the pool, and certainly to ever get back out on the golf course.

Katie, Tim, and Caitlyn are with us this weekend. They are going to try to find a way to be able to get Karen in and out of the pool, without any help. This will be an interesting exercise. I hope she can do it, as she really enjoys swimming in the pool. They are a big help to us in many ways, and we really look forward to having them here. I'm sure Caitlyn misses Megan not being here.

Megan is with Kevin and Karrie for two weeks. This was supposed to be a trip we were to make, so she is standing in for us. She loves being with Fiana and Liam, as she gets down on the floor with them and plays with them as she does with all of her nephews and nieces.

Please continue to keep Karen in your thoughts and prayers. She is facing a long and arduous journey, and needs all the help she can get.

Love, Bill

Home Therapy

Since coming home on Friday, Karen has been trying to walk arouind the house as much as she can(with a walker). She is limited, as she gets very tired quickly. We've had some difficulties with getting up from chairs, but we've found out how many pillows are needed on each chair to insure she can get up.

We start physical therapy at the hospital this Friday. The following week, she is scheduled for both physical and occupational therapy. We chose the hospital for therapy as it has more equipment and good staff than home health has. When Karen broke four bones a year and a half ago, we chose home health which included nurse visits, therapy sessions, and showers twice weekly, all of which was covered by Medicare/Blue Cross-Blue Shield. We were disappointed in the care and service she received from the home health people. Out-patient physical and occupational therapy is covered, but nothing more. We felt the hospital therapists and facility will be far better than the services offerred by home health. We have a private pay caregiver coming in to give her three showers weekly.

We see the doctors later this week in f0llow-up to the hospital stay. Her legs, ankles, and feet have noticeably swelled up, thus the visits will be timely. We believe it's from the walking with both legs still full of multiple blood clots.

If anyone wishes to visit Karen, just call in adsvance to insure we're home and available.

Love, Bill
.

Life At Home

Happy Father's Day to all you Dad's out there -- including my own!
Life at home is going to take some time before it returns to normal. Mom is having some real difficulty getting out of chairs... but she is so happy to be home and sleeping in again!
Many of you have asked how you could help... home cooked meals for my parents would not be turned away. Dad is too proud to ask -- but I'm not so if you would like to help out this way that would be great. No one should feel obligated but Mom may soon get tired of Bertolli Meals out of a bag!
There won't be as many updates from here on out now that she is home and taking phone calls. If anyone would like to email me at katiechoal@hotmail.com I will send you a personalized update.
I hope this blog was helpful to all of you. It was very helpful to my dad as it saved him a lot of time and repetition at home. Thanks again for all of your support.
Katie

At Home - Finally!

She's now at home... and very happy to be there.
Nurse Bill is running around like a chicken with his head cut-off getting prescriptions, special push up seat for chairs, etc. But he's also happy to have her home.
She says she is up to taking phone calls... but keep them short.
She also says she will take visitors but CALL FIRST and be aware when she is on medication she is not always herself. Don't be offended if you are turned away by the guard dog (Dad :))
She is not able to check email... at least not yet.
We are so thankful for your support -- thank you so much for being there for her and my Dad.

Heading Home Today

Mom should be heading home sometime today... I think the plan is for after lunch.
I know she is really looking forward to it. She had a nice long shower yesterday and PT.
Please keep in your prayers Mom's sister - Kathi - she is having surgery on her spine -- to fuse some disks in her neck. the same surgery mom had some years back.
I'll let you know when mom is home and whether she's up to phone calls.

Reality

Karen and I both got a big dose of reality today. Moving around a home is very different from moving around in a hospital room. Not only did she get pooped after half of the "home evaluation", she was unable to get out of some of the chairs in our home. The bed, toilet, and shower were handled quite well. Her computer chair, kitchen chair, lazyboy rockers, and lawn furniture presented significant difficulties. I've got some work to do in the next two days to make everything "ready" and will be getting some help from Gerry Heck, our wonderful friend. As they leave for three months on Tuesday, I'll have to work him hard in the next few days. Judy Heck will be cutting and styling Karen's hair in our home Saturday. Two great friends!!

Use of the pool will be delayed several weeks. She could probably get in OK, but getting out would be next to impossible. She and I agreed that she will have to be very careful in all of her movements and transitions. I'm unable to offer her much help, so she will need to err on the side of extra care in all new efforts.

Love, Bill

Officially Going Home

Mom will be going home on Friday. But after the home assessment today, she realizes she has a long recovery ahead of her. She can't get out of most chairs in the house... and definately no pool. She will return to the outpatient hospital therapy several times a week and Dad will hire someone to come in to help her with a shower a couple of times a week.
We all agree staying another week in the hospital would help her physically... but mentally she needs to come home. Both Mom and Dad are very happy about that -- and Mom has agreed to the restrictions around the house.
I'm sure Dad will update you all tonight.

Home Assessment About To Start

The home is assessment is supposed to happen at 10am.
Expected to take at least two hours.
I'll let you know what happened as soon as I can.

Ready for Home Assesment

Mom had 3 hours of PT today. She did well.
Dad got everything needed for the home assessment tomorrow. He needed to get oxygen filled, wheelchair, walker, raised toilet seat etc. He's ready to go.
Keep your fingers crossed that it goes well.

Anxiously Awaiting Coming Home

To say that Karen is anxious to come home is an understatement. Today marks the seventh week she has been in the hospital. She can't wait to come home!! Anyone who has been in a hospital knows a good night's sleep is impossible. She is always tired. The therapy combined with the lack of sleep have really been tough on her. Her food for the first five weeks was pureed/chopped due to a perceived swallowing problem they felt she had. It "cleared" up two weeks ago allowing her to have a regular diet, albeit it a diabetic diet.

They weighed her this afternoon. She has lost 15 pounds since being admitted to the hospital. She wanted to lose weight, but this was not a good way to do it. Our pantry and freezer are well stocked with Jenny Craig food which she had purchased just prior to becoming ill. She intends to continue losing weight, but hopefully not as fast as in the hospital.

She is looking at a long recuperation time. We've already cancelled a late June trip to Chicago to visit Kevin and his family. Megan will be going in our place. We still are planning a trip to Seattle in August and two weeks in Aruba in late September/early October in celebration of our 50th Wedding Anniversary. If we can't do Seattle, I'm sure Megan will love to go again in our place. We really hope to do the Aruba journey.

We feel so blessed to have such wonderful children, their spouses, and grandchildren. They have been very supportive through this battle. Our friends, relatives, and neighbors have been there for us throughout. We are facing a long, tough road back for Karen. We feel fortunate to have all of you praying and thinking of her. We ask that you continue to do so out ahead, as prayers and good thoughts are positive reinforcement to medical and therapy assistance.

We Love All Of You, Bill

Monday AM Update

Mom is working hard at therapy today... the plan is still for a home assessment on Wednesday. If it goes well, she'll come home on Friday.
Her headache from the IVIG is now mainly gone... so no IV's now.
Not much new.

Sunday PT

Back at PT today. Mom did have a bad headache from the IVIG yesterday... but not as bad as it normally is at home. It may have to do with the speed at which it was pushed into her body -- 16 hours at the hospital, 5 at home. Who knows?
Regardless, she was able to work hard at several sessions of PT today. She really, really wants to go home on Friday and she's definately motivated to make that happen. The home test/assessment is Wednesday.

Infusion Day

Not much new to report. She's doing well... but no PT because she is getting her monthly infusion. We are still on track with a Friday discharge if all goes well this week.

Noon Update

Karen returned to regular therapy sessions this morning. All tests were negative. There is no concern for any heart related difficulties.

A tentative schedule has been established for next week. Assuming her continued progress, a trip home for a "home evalustion" is scheduled for next Wednesday. Therapists will accompany us home to check on her ability to get in and out of the car, go into and out of the house, get in and out of bed, in and out of a chair, on and off the toilet, in and out of the shower, and in and out of our pool. This sounds very detailed, but given my inability to assist her due to my back problems, the therapy group said that they have to know and view if Karen can do all of them without assistance. If she shows that she can do them, with some slight additional therapy, we will return to the hospital and she will be released next Friday. If she is unable to "pass these tests", further therapy will be required. At that point, all of the possible options will be considered.

Needless to say, we both hope and pray that she will pass this test run. All hospital therapy will be aimed at these functions from now until Wednesday. While sounding easy, these activities are very difficult given the continuing difficulties Karen has with her legs.

Tomorrow, Saturday, Karen will get her evbery-four-week IVIG, which is the infusion of gamma globulin which takes the place of her immune system. She will be unable to do any therapy tomorrow as she is always left with severe headaches when she gets this six hour infusion. Not sure how much therapy she will be able to do on Sunday.

Both of us again want to thank all of our family, relatives, and friends for the support you've given Karen. I give her all the cards, e-mails, prayers, and well wishes you have extended to her. Please continue to keep her in your thoughts and prayers as she is now facing a tough battle in her fight to return to full mobility.

Love, Bill

Setback Resolved

Karen's chest pain has ceased and the EKG, blood tests and enzymes were all negative. Her doctor thinks it might have been skeletal, perhaps caused by her efforts in the therapy sessions. He has authorized re-starting therapy tomorrow, after not allowing therapy today due to the possible concern of some heart involvement.

I can't imagine that losing one day of therapy would change the opportunity to come home next week. She has continued many round trips to the bathroom, which is therapy inb itself. I expect to have an indication tomorrow, after the conference(staffing) which day she might be able to come home.

Love, Bill

Setback - Hopefully minor

Around 6am this morning... mom woke up with terrible chest pain. With obvious concern for heart troubles, they ran an EKG which thankfully was negatives. Now they are doing blood enzyme tests to see if there is any heart damage... 2 of the 4 negative... also good news. Unfortunately, because of this, no PT today... but she's still walking to and from the bathroom... and trying to do some exercises in bed. After a couple of nitro pills, she feels fine but they want to make sure nothing else is going on and try to find out the cause of the chest pain.
I probably won't have anything new to report on this until tomorrow as we await the results of the tests. But if I get anything tonight -- I'll update the blog.

Good News!

Karen continues to recuperate quickly. She is now getting up for all bathroom calls and walking in and back with the aid of a walker, with an assist therapist with her. She is also getting up 5-6 times daily for physical or occupational therapy. She walks in her room and in the hall, always with a walker and a therapist trailing behind. Everyone is amazed at the very quick progress she has made in the last three days. She is fighting her way through the pain knowing that this is the quickest way to get home.

The charge nurse told me this afternoon that Karen's therapy doctor will be holding a "conference" with all medical staff and therapists Friday morning. She said it's quite possible she may be released next week and be able to come home. All of this assumes continued progress in her therapy sessions, which everyone expects to not be a problem. She still has constant pain in her legs, but it 's probably at a "4" level today. It looks like she won't have to go to a nursing home with semi-acute therapy capability. I can't tell you how much this means to both of us.

Our backyard pool will be "just what the doctor ordered". Everyone has said that walking in a pool might be the best exercise she can do. Karen will have no trouble with this, as she used the pool 3-4 times daily when she was healthy.

The cumadin(blood thinner) is at a level where the doctors are confident that it is doing its intended job without danger of hemoraging. She will continue to take one pill daily for the rest of her life. She will also need to continue on oxygen 24/7.

The Sun Cities have a "helping hands" facility which I've used for medical equipment in the past. I'll need to get a wheelchair, walker. raised toilet seat, and a chair for the shower. All they ask is that equipment be returned to them in three months, and that a donation be left when the equipment is turned in. What a great service!

Karen has come a long way since we almost lost her when first admitted to the hospital. I'm sure her quick improvement has been aided by the prayers and thoughts all of you have said for her. It's made us realize how blessed we are to have such a wonderful family and great friends. Don't stop now as we still have a ways to go before she can return to her former lifestyle.

Love All Of You, Bill

Maybe Home Soon??

Mom walked 100 feet... and getting to and from the bathroom on her own today. Her doctors and therapists are very happy with her improvement over the last week or so. The credit her improvement to a change in medication, time and mom's willingness to do therapy. If she continues this improvement she MAY be able to come home next week.
Mom would prefer to have no visitors or calls until after she comes home.
Dad is a little worn out today... and maybe a little sick so he went home this afternoon to rest and will not be going back to the hospital tonight. It's good for him to get this break.

Blogging Info & Assisted Walking Success

Here are answers to two questions I've recently received. At the bottom of the current page of posted blogs, you may view earlier postings by clicking on the "Earlier Posts". This will allow you to view all posts since we began Karen's Health Blog. The second question has to do with responses by bloggers on specific postings. At the conclusion of each posting. "comments" may be clicked on to allow anyone to respond to the posting if they wish to do so.

Today was Karen's best day of therapy. She made three trips to the bathroom and back to her bed. She was also able to get from her bed to a gurnee in the hall for a test, and return to her bed. All of these "walks" are with the use of a walker and the wearing of a safety belt and a therapist holding it for safety. These "walks" are a real positive in her moving to increased mobility. I'm not sure how long Karen will be able to remain in the hospital acute therapy wing, but every day is the equivalent of three days in a semi-acute therapy facility, as they only give one hour of therapy daily as opposed to three hours in the hospital therapy facility. Medicare will make the final decision on the length of her stay based on her progress as reported by the Therapy Team. Also, Medicare has a maximum number of days in the hospital and/or in therapy. She has now completed five weeks in the hospital, including two weeks in therapy.

The pain in Karen's legs has somewhat subsided. It's down to a 5 versus the 8 it had been. There appears to be no doubt that the blood clots are causing the pain. The doctors have said that the clots will probably remain in her legs 6-9 months before they are totally gone. This makes sense as the clot in her left arm two years ago didn't disappear for 6 months. Both legs hurt all the time, and the pain increases with use. It returns to a "5" as soon as she returns to bed. She is fighting through the pain, which is what she has to do to get independently mobile. I'm unable to assist her physically, gi9ven my back problems. She will have to be able to navigate around our home without assistance.

Thanks for your continued support with cards, thoughts, and prayers. She feels really good with all the support she is getting.

Love, Bill

Good Morning -- Maybe even Great!

Today was a really good morning. Mom was able to get off the bed... grab the walker... get into the bathroom... transfer to the toilet... and back again. The PT person was there in case she got into trouble but she did it all on her own.
This is the first time she was able to do that... and she was very happy when I talked to her this morning. She had two days of rest over the weekend which may have helped but she said the pain in her legs wasn't as bad this morning.
Hopefully, this is a sign of things to come... pray for the continued motivation of pushing forward.
BTW - the MRI was clear so all doctors believe the pain is from the clots in her legs which are always going to be there. She just needs to push through it.

Day Of Needed Rest

Karen had no therapy scheduled for today. It's probably a good thing as her legs are always in a great deal of pain, and today has been especially bad. Perhaps it's because of all the therapy she had this past week. A neurologist this aftertnoon ordered an MRI of her back, as he says some of the pain may be eminating from her back and not only cauised from the blood clots in her legs. It was thought that neuropathy could be a possible cause but the pain is not the kind caused by neuropathy. I believe the blood clots are the culprit, but something else could certainly be adding to her severe discomfort.

Karen still can't take any phone calls or visits, as she remains in a lot of pain and is constantly being tested for one thing or another. Her blood coagulation level is critical a/c her vulnerability to clotting. Blood too thin has caused hemoraging so the cumadin needs to be adjusted at least once daily, sometines more often. She would love to be able to speak on the phone and/or have visitors, but she still isn't up to it.

Megan comes with me once daily, and is great with Mom. Having her so close has been great for us. She's very upbeat, and that is something Karen really enjoys. I may be pushing Karen too hard on the therapy, so it's nice to have Megan with me to counteract me pushing the therapy.

Love, Bill

Shower Day

Mom finally got to take a shower -- which of course -- zapped her of any energy to work on other PT stuff. They wheeled her into the shower room... and let her get cleaned up. She was very happy about that! No walking today though just too beat. Hopefully tomorrow.

Baby Steps

Mom had a good morning -- she actually took 4 to 5 steps (with help of course). That's pretty good progress. She was definately tired this afternoon. But we are certainly encouraged by her progress today.

Therapy Success

This has been the best day Karen has had in therapy. Speech, occupational, and physical therapy have all shown definite improvements. For the first time, she stood alone for a few seconds. She did this five times and transferred to a wheelchair, which isn't as easy as it may sound. Her arms and hands are in full use, and she is now beginning to use her legs as in the standing exercises. Her goal for this week is to transfer from her bed into a wheelchair, then proceed in the wheelchair to the bathroom and transferring back to bed. All of this it is hoped will be with only one therapist assisting her. She has been unable to take any steps yet, but today she rolled around the room in the wheelchair, alternately propelling herself with her hands and feet.

One of the remaining difficulties left over from the time on the ventilator has been the difficulty she has had in swallowing. Her food has been all pureed or chopped up leaving a plate not too enticing to look at and not very tasty. All of her liquids have also had to be thickened, which also hasn't tasted very good. Today, she had an MBS(modified berium test), which she passed with flying colors. She will now get "normal" food, except low in sugar, as she has tested positive for diabetes, another residual from the incubation time.

All of her antibiotics have been stopped. She retains a pic line to allow easy access for the daily blood draws needed to measure the coagulation rate of her blood. With her penchant for blood clots, and the earlier hemorhaging experience, the doctors closely monitor this important item.

Karen and I thank everyone for keeping her in your thoughts and prayers. The medical folks are doing their part, and I'm sure all of your concern and prayers are aiding in her return to good health.

Love All You Guys, Bill

Another Good Day

Mom is working hard today... and while her legs are still very sore... she's feeling better and making some progress.
Dad will be posting a lengthy update tonight.

Working Hard

Today is a better day. The upset stomach and much of the dizziness were gone by bedtime last night. So she is working hard at PT today. It's still difficult with the painful legs but it's a better day than yesterday.

Struggling with PT

Mom is really struggling with Physical Therapy... it's very painful for her... and she remains dizzy and has an upset stomach too. It's frustrating not to be able to help her but there's not much we can do except encourage her to try. She did not make much progress today... I hope that changes by the end of the week.

Start of Intense Therapy

Today was Karen's first full day(3 hours) of acute physical and occupational therapy. The therapists appear to be tough taskmasters, but this is the only way she can expect to regain the use of her legs. Without going into a lot of detail, suffice to say the blood clots in her legs cause any motions to be quite painful. If sufficient progress, as measured by Medicare, isn't made, it will probably result in a forced exit from the acute therapy wing in the hospital. She knows she will have to gut her way through these sessions, but it will be difficult.

There is no longer any concern with her kidney function nor any infections. Her speech is returning to normal with occasional lapses into confusion. Breathing therapy may be discontinued sometime this week. She will remain on oxygen 24/7 for the rest of her life. She will undoubtedly be taking cumadin or other blood thinner for the rest of her life also. The three blood clot occurrences in the last 3 years make that decision an easy one. Her blood will have to be checked routinely to insure it remains at the proper coagulant level.

She isn't too enthralled with hospital food. It's too dry, and she doesn't want to eat much of what they put before her. I am into bringing her food I know she likes and which meets the restrictions imposed by her doctors and dietician. Everything has to be sugar free and easily digested.

She is still unable to stand and hasn't walked since five weeks ago as today is her fifth week "anniversary" of being admitted into the hospital. She longs to come home, but knows it will take a lot of effort to get to that point.

As she still has many things going on in her days, I would continue to ask that no calls or visits with her be made until I advise everyone that she can take calls and have visitors.

Both Karen and I thank everyone for the cards, letters, thoughts, and prayers which have been so forthcoming from our friends and relatives. We know prayer has helped her to this point, and we ask for it to continue as she faces the battle of her life to return to the kind of lifestyle she wants and deserves.

I'll continue to keep you posted through this blog. Katie will probably do so as well. Please feel free to pass on the link to anyone interested in Karen's progress.

Love, Bill

Nothing New

As she had a free day today... nothing new to report therapy wise. She was a little crabby throughout the day but as she really only gets cat naps that is perfectly understandable. She's just tired... hopefully she'll sleep a little better tonight.

Free Day

Today is a free day for mom -- no PT today. She's pretty happy about that! She's doing ok today. They are continuing the heparin along with the cumadin. Once the cumadin level gets to the right point they will stop the heparin which will be good. She may even be ready for short visits with visitors. Dad will let you know.
Dad got some rest the last two days... and we were able to get him to the movies and out to dinner. The other kids will appreciate this -- we cleaned out the freezer and found food from 2005!
We head back to Tucson today after the TV repair man comes out.

Week's End

As promised... PT really started pushing her to do more. She was sound asleep by 8pm tonight -- they really wore her out. But that's good news for the long run. She's going to have a rough couple of weeks as her legs are so sore... and she still has some dizziness but she needs to push through it during PT so we can get her home.

Better Morning

The assessment of her headache and dizziness is inner ear damage by the anti-biotics. The good news is it's treatable... the bad news is the way they treat it is by getting her up and moving her around. Basically her brain needs to re-learn to function and the dizziness will go away.
The doctors all met and have decided to keep her on the acute PT floor. Medicare is giving her until the 9th to show some improvement or they will force her to move to another nursing home type facility. So the PT staff is really going to start pushing her beyond her comfort level to try to get some improvement.
She remains on heparin and cumadin -- and will most likely be on it now the rest of her life. They are watching the levels very carefully.
She is actually doing better today than yesterday. The headache and dizziness is a little less, she got some sleep and ate all of her breakfast. She also a little less altered... so all in all a pretty good morning.
Dad really appreciates the support he's received from all of you and is grateful you are reading this blog. It is helping him to not get calls -- as it's allowing him to rest when he's home.

CT Scan results

Mom had a CT to see if anything in her brain was causing the head pain and dizziness. Good news -- all clear. Still no definitive answer on why the pain... checking meds. They are doing a test in the morning for a type of vertigo.
Bill

New Problem

Just saw mom as we came to Surprise for a couple of days. She is now experiencing dizziness and head pain. The doctors believe it to be a side effect of some medication but they are not sure. So they are trying to figure it out. It's a bummer because with the severe head pain she is taking major pain medication which in turn means little to no therapy. With us here... we'll give Dad a little break from the hospital and make him stay home and play with Caitlyn! :) Mom got to see Caitlyn too as we brought her up there when we arrived in town... hopefully some motivation to get moving although she's still pretty altered. Hopefully we'll get the head pain figured out and back on the PT track. Some minor good news is her kidneys have once again started functioning normally.

Doctors Confab

The doctors will meet Friday morning with the Social Worker to discuss whether mom can remain in the hospital or is moved to a nursing home for the remainder of her recovery. We hope she stays there as they work with her 3 times a day... and it's closer for dad. Obviously Medicare wants an update as she has now been in the hospital for 4 and a half weeks. We'll keep you posted.

Therapy Continues

Not much new this morning... The Physical Therapy continued today... but still minimal. Mom is motivated because she wants to go home but her legs are still very painful. She is still taking serious pain medication so she remains a little altered -- just so you understand what that means I'll give you an example. Mom said, "The FBI took my cellphone for 12 hours yesterday -- I want it back." Obviously the FBI was not in her room. It's funnier now that we understand what's causing it (the pain medication) which is why if you do get to talk to her take everything with a grain of salt and get the real updates from us.

Background Information

For some new folks, following is Karen's update from the start of her medical difficulties. On Monday, 4-27, she was admitted to the hospital with abdominal pain and breathing difficulties. She was diagnosed with blood clots in both of her lungs. Blood thinners were prescribed, but resulted in hemorhaging 48 hours later from her mouth and nose. She was immediately moved to the Intensive Care Unit. She had great difficulty breathing and had significant blood loss. She was intubated and surgery was done to stop the bleeding in both her lungs and sinuses. The doctors told me it would be a good idea to have all the family here as her condition was so fragile. The kids came in, and two days later the vent was removed. The doctors said she was stable, but remained on the critical list. The kids went as she was then in no imminent danger. Given all the sedation during her time on the ventilator, she came out with severe mobility, speech, confusion and infection concerns. Her speech, mobility, and blood oxygen were monitored for three weeks in the ICU; she remained critical for the entire three weeks. She needed many blood units and plasma to help coagulate her blood. Unfortunately, but not surprisingly, she picked up two infections which have been cleared up with antibiotics. On 5-22, after 21 days in the ICU, she was moved to the acute rehab unit to get speech, occupational, breathing, and physical therapy. After two days, the pain in her legs was so acute that a doppler was prescribed to check for blood clots in her legs. It was confirmed that both legs have blood clots from above her knees to her ankles. Needless to say, care is being exercised to use thinners to treat the blood clots given her experience three weeks ago-there is a concern that she might hemorhage again. Therapy is now being given with her legs being gingerly treated. Don't know how long she will require therapy; all they say is "we take it one day at a time". The physical therapy people speak in terms of several weeks or two to three months before she has the use of her legs. It's possible she may have continued therapy in a semi-acute facility(nursing home) depending on her progress. Her speech has come around nicely and the upper parts of her frame are in good condition.

Having the support of so many friends and neighbors means a lot to both Karen and I. Your cards, letters, thoughts and prayers are helping carry us through this difficult time.
Bill

Still Struggling

While Mom's pain is a little less it seems the blood thinners haven't done much yet to break up the clots in her legs. She's still on pain medication but she was able to do a little PT today which is good as she's so weak. The Doctors will give us no time table on how long it will take but they are being very conservative with the blood thinners due to the major bleeding she had a few weeks ago. Dad is doing ok -- pretty stressed but hangin' in there.

Noon Update

Doctor changed one of Karen's meds as it seems to cause an altered state. Her pain has eased a little bit. Now monitoring to see if the blood thinner works.

Bill

No Calls Please

Dad is holidng up ok... but asks friends to refrain from calling him at home or on his cell unless it's urgent. He is trying to nap at weird hours when he's not at the hospital. One of us will try to update the blog regularly. Or you can call my cell if needed 520-488-8279. Katie

A Setback

After working in PT for 2 days, she complained of severe pain in her legs. A doppler imaging test revealed the return of blood clots throughout both legs. This is not great news. She is now back on blood thinners although at a much lower dose. We are hoping this will break up the clots. She remains on the PT wing but on pain killers -- so no visitors.

Memorial Day Updates

As you all know -- these 4 weeks have been rough. Mom was hospitalized 4 weeks ago today with blood clots in her lungs. Too much blood thinner -- and two days later she nearly died. After 2 days on a ventilator, she began the long slow recovery process. 1 week later she contracted pneumonia. She recovered from that but was still altered and extremely weak. Another week goes by and she's moved out of ICU into telemetry. On 5/20/2009, she was moved into physical therapy and seems to be going in the right direction.