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
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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.