Wednesday, May 25

Karen continues to make progress but as we have said all along, progress will be slow.  She went to the ortho doctor last week and they want her to continue to wear the neck brace for at least 2 more weeks, but the two broken vertebrae are healing well.  Karen was able to go to church this past Sunday for the first time in months.  She really enjoyed getting out of the house and seeing all of our church friends.  Her appetite and occasional nausea continue to be an issue with some good/some bad days, but the doctor thinks this will improve as her hemoglobin improves.  After several weeks of low hemoglobin, that has finally started to improve with the medications they are giving her when she goes for dialysis.  Hopefully she will now begin to have a bit more energy and feel better.  She continues to have home Physical Therapy, but they have released her from further Occupational Therapy and looks like this week will be her last week with the Speech Therapist so she is making progress there. 

 

Rusty

 

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Monday, May 16

Karen has now been home for more than a week and continues to gain strength every day. Dialysis is still Tue/Thu/Sat at 6:30am at the dialysis center on Miller Street. She still has her cervical collar on her neck and she goes back to the ortho doctor Thursday. She had a good weekend with a few spells of not feeling so great, but those passed. She is making the trip up and down the steps more frequently now instead of once per day and I believe we are getting close to getting her of the house a little more (store, dinner, etc.).

Thanks to all of you who have brought us meals! That is a real help and we appreciate it so much.

Please pray for continuing improvement in strength and that she can get rid of the collar soon.

Rusty

Monday Morning

We had a very good weekend with Karen home: got her hair cut Friday morning, dialysis saturday morning, dinner with friends on Saturday night, Mother's Day celebration with kids (minus Russ who stayed at State studying for 3 final exams) and grandkids on Sunday night It was great to have her home!

Karen still needs someone to walk with her and to help her with getting up from chairs and climbing stairs, but she is getting stronger every day. We just need to be cautious until she is very sturdy on her feet. She also is still wearing the neck brace. Home PT, OT, and speech therapy for cognitive issues should start this week as well to make sure she continues her progress.

As always, God is good and we thank Him for he has done for us!

Rusty

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Going Home...But staying On Dialysis

The good news is Karen gets to go home today.  We are just waiting on paperwork and we will be on our way.  Unfortunately, the 24 hour kidney test indicated that her kidney function has not returned so she WILL continue to need dialysis three times per week.  Karen will go back to her Tuesday/Thursday/Saturday at 6:30am hemo-dialysis treatments at the Miller Street clinic starting this Saturday.  While this is disappointing, we both felt like it was a long-shot that dialysis would no longer be needed, and we are fine.  We are just delighted that she gets to go home and thank God for how far He has brought her!

 

Rusty

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Still Waiting

We are still waiting at the Sticht Center to find out about future dialysis and to go home. I will update as soon as I hear more. Karen has now had blood drawn three times today! She is the human pin cushion.

Rusty

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Surprise Possibility and Urgent Prayer Request!

Karen’s discharge from the Sticht Center has been delayed at least one day, but for a very good reason.  The nephrologists (kidney doctors) have been monitoring Karen’s kidney function and now believe there is a possibility that she may no longer need dialysis!  They will be a doing a 24 hour test on her kidney function beginning tonight to determine whether dialysis is still needed.  We think this possibility is a great reason to delay her discharge and worth the wait!   We are trying not get too excited yet, but it is a very exciting possibility.  If this comes to pass, the doctors may have some kind of explanation for this, but we will consider this a miraculous work of God!  I am not sure how long it will take for the doctors to read the results, but hopefully we will find something out sometime Thursday morning.  I will post something on the blog as soon as I find out.

 

I want to ask that you pray a special prayer tonight that this test will show that the dialysis is no longer needed!  

 

Rusty

 

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Countdown to Home - 1 Day Left!

Believe it or not, Karen is 1 day away from going home!  It is hard to believe that she has been at the hospital (with the exception of a couple of brief stays at home) since January 21!  The plan is still for her to go home on Wednesday, May 4 barring something unforeseen.

 

We are now on our fifth day of Karen feeling good (with the exception of brief period Sunday when she didn’t feel so good) and thanking God for this.  They have really been working her hard at the Sticht Center in anticipation of her going home.  We are also making plans to have things squared away at the house to help her with the transition.  I will be working from home for her first week (May 4-11) so that I can be with her and then we will determine what her needs are after that in terms of on-going assistance at home.  I am much more comfortable this time, that she is ready to take this next step. 

 

Please pray that we will adjust quickly to this next step in her recovery and also that things will go smoothly and she will be able to meet the challenges that lie ahead (things like steps!).

 

Rusty

 

 

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Friday - Good News x 2!

It is Friday afternoon and I have spent the whole day with Karen at the Sticht Center getting trained on how to assist her when she goes home.  Karen was feeling better today (after several days of feeling very tired which slowed down her progress a bit).  As a result, they pushed her (and me!) very hard today.  She did a lot of walking, going up/down stairs, getting in/out of the car (there is a real car right in the rehab gym!), stepping up/down off of curbs, etc.  Karen pushed herself extremely hard and all of the therapists were very pleased with how she did today.  The PT said, “You are really showing off today, aren’t you?”  She is very exhausted and so am I (this stuff is hard work!) and she is now resting.

 

We had a conference today with all of the therapists and the case manager.  They gave us an update on her progress in all areas (progressing well but still a long ways to go).  First piece of good news:  they feel like she is to the point where they can send her home this coming Wednesday, May 4 unless something changes!  In order to make sure she continues to progress, she will have home health visits for Physical Therapy, Occupational Therapy and Speech Therapy as well as visits by a nurse.  While this is a bit scary, I feel that if she continues to do as well as she has today, it is time for this next step.

 

Now the best news.  Dr Lovorn (attending rehab physician for the Sticht Center) talked to us and said that yesterday they discovered that Karen’s thyroid levels are extremely low, but this is easily treated with meds.  This would cause extreme fatigue, sleeping all the time, foggy thinking, slowness in healing and all kinds of things like that.  Dr. Lovorn was very excited and described this as a "great discovery" because it is so easily treated (oral medicine) and also explains some of the slowness in her recovery!  She did say it will take several months to get her level where it needs to be, but we should see gradual improvement from week to week.  I told her I was surprised that with all the blood work Karen has had over the past three months this had not been discovered. She said it is a very specific test not covered by other tests. We are just thankful that this was discovered.  I don't know that this will "fix everything" but sounds like this could be a key to getting her recovery moving along at a faster clip!

 

Please pray that this new thyroid treatment will provide the physical lift that she so badly needs and that this will also help to resolve the cognitive issues.

 

Rusty

 

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Tuesday Evening

I mentioned in one of my earlier posts that the speech therapist has been working with Karen on cognitive issues.  As they have worked more with Karen, some issues related to memory (dates, ages of people, etc.) and simple problem solving have surfaced.  These issues are very similar to the types of issues she encountered right after her stroke back in November.  For that reason, they believe that when she fell and hit her head, that could have reinjured the same part of her brain that was impacted by her stroke.  We have been told that the brain has a tremendous ability to rewire itself (with her stroke this happened within a week) and are hopeful the same thing will happen here as well but only time will tell.  Up until this point, we have been assuming that some of the “fuzzy thinking” was due to fatigue, effects of meds and uremia that develops between dialysis treatments.  These certainly may be contributing to her cognitive issues, but we also have to assume that there may be some impact from the fall/stroke as well.  We feel very blessed that her speech, ability to carry on a conversation, and maybe most importantly, her wonderful sense of humor were not impacted.  Just the other day, while I was helping her get up from the bed, she said, “In case you are wondering what that lump was under your foot, that was my toe!”  I was standing on her foot!  The girls and I just about died laughing!

 

Physically, after a good day on Good Friday, Karen has not felt as well since then.  She ran a fever on Sunday as well as this morning and has also been very tired.  The fever was gone by afternoon (both Sunday and today).  We are hopeful that after today’s dialysis treatment, she will feel much better.

 

Please pray that the cognitive issues will resolve themselves quickly and that she will feel better physically so she can continue to build her strength.

 

Rusty

 

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Good Friday Morning

Karen continues to get stronger every day but she still has a long way to go.  Her schedule is quite grueling with anywhere from 3 to 4 ½ hours of therapy everyday plus 3-4 hours of dialysis 3 days/week, but she is maintaining a positive attitude and working hard.  We have seen a good change in her appetite over the last 24 hours.  She just finished lunch and ate a plate full of spaghetti!  In addition to physical therapy and occupation therapy, she is working with a speech therapist who is working with her on cognitive processes.  We continue to thank God for allowing her to be in the Sticht Center.  We are very impressed with the staff and the facility. 

 

Russ came home Wednesday night and will be here through Sunday, so that has brightened things up for her.  We hope you have a terrific Easter weekend and enjoy time with your family.  Don’t take your time with them for granted!

 

Rusty

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Monday PM

As expected, today was a full day of therapy for Karen and she was totally worn out by the end of the day.   Tomorrow will be an even fuller day with her therapy sessions plus 3 hours of dialysis.  We met today with the case worker who will provide weekly updates on Mondays after meetings with the entire care team.  She said that right now the plan is for Karen to stay for 2 ½ weeks more, but that is subject to change based on how she progresses or new needs that are identified.  I don’t expect significant changes from day to day, so I will most likely reduce the frequency of my posts.

 

Please pray for strength for Karen as she faces a difficult day on Tuesday.

 

Rusty

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Sitting in the Sunshine

Karen is feeling pretty good today. Her shoulder is hurting a bit but that is to be expected since her therapy causes her to use it a lot more. Sunday is a rest day (no therapy sessions) so she is recharging her batteries for the new week ahead with therapy.

When she got up this morning the nurse and I washed her hair (at her request) so that made her feel better. We are now sitting out on the patio at the Sticht Center in the beautiful sunshine.

Rusty

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1st Day Rehab

Today was Karen's first full day of rehab plus dialysis so she is pretty worn out tonight. Every day (except Sunday) she has about 3 hours of rehab starting around 7:30am and finishing mid afternoon (with some breaks during that time). She has three different types of therapy every day: physical therapy, occupational therapy, and "activities of daily life".

They are pushing her hard which she needs but is a bit stressful for her. It also makes her more aware of her deficiencies and how far she has to go. In spite of this she has a good attitude and working hard.

I am so glad to have professionals watching her closely and observing the little things that the doctors missed when they buzzed in/out. Before, I felt that a lot of that fell on me!

So far we are very pleased with the Sticht Center and feel that she is exactly where she needs to be. The people here have been great.

Rusty

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Sticht Center!!

Karen has just been moved to the Sticht Center (part of the Baptist Hospital Complex)! It is very nice and the room feels a lot more like home. She will have very full days with therapy and I am sure they will be pushing her hard, but that is what she needs. She is a bit anxious about whether she can physically handle it, but I have assured her that they are used to that and if she was able to do everything now, she wouldn't need to be here.

Karen has been feeling better today so we are very thankful for that. Please pray that Karen will have peace about what lies ahead and not be anxious! Also please pray for strength as she starts this next step in her recovery.

Rusty

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Thursday Afternoon - Move to Sticht Center Delayed

The transplant team decided this morning that Karen is not strong enough right now to be moved to the Sticht Center, so this has been delayed.  In addition, they need to make some adjustments to her clotting levels.  I was not there when they came through so was not able to ask them about what the plan is to get her stronger.  They implied that she will still go to Sticht, but not until she is stronger.  Karen has not been feeling so great the last couple of days, so I have to trust their judgment on this.  Today she is feeling a bit nauseated, but leaving shortly for dialysis, so hopefully that will address the nausea.

 

Rusty

 

 

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Sticht Center Acceptance!

Karen was notified today that she has been accepted into the Sticht Center for rehab!  They are waiting for a bed to become available so we are hoping she will be moved over the next day or so.  We are both very excited about this because we feel that this will be the best course to get Karen back to where she needs to be.  In addition, because the Sticht Center is part of the Baptist Hospital complex, they will be able to get her to/from dialysis as long as she is there and this will simplify things for us.  Our understanding is that they will push Karen pretty hard, so please say a prayer for her that she will be able to rise to the occasion.

 

Rusty

 

 

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Tuesday Evening

Karen didn't feel too good today, most likely because it has been three days since dialysis. Luckily she went for dialysis a bit earlier today so she got back before too late but she is pretty worn out tonight.

No updates on our "application" to the Sticht Center! Hopefully we will hear something soon.

Several of you have asked about whether she is ready for visitors yet. As before, she needs to put all her energy into getting her strength back so we ask for you to hold off on visits. But please know that we appreciate your concern for her.

Please pray that we get our "acceptance letter" for Sticht U!

Rusty

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Monday Evening

No big changes today, just more waiting!

The OT (occupational therapist) came to do an assessment today and is also recommending Karen for rehab . The next step is for the Sticht Center to decide if they will accept her. I don't know how long that may take. As before if they don't take her at Sticht, there are other options available that we plan to pursue.

When the transplant docs came by this morning they had not gotten results from yesterday's CT scan of her head, but Dr. Rogers said not to be concerned. He will let us know if there is anything to worry about, but he doesn't expect to find anything (except a brain!)

Rusty

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Sunday evening

Karen has had a pretty good day today. I brought her breakfast and lunch and Heather is bringing her dinner. She has eaten pretty well today. She has also taken 3 short walks down the hall and done well. She is stonger than before but having a little trouble with balance.

The PT came by today and agrees she needs rehab but also said that the Sticht Center is very strict about who gets in there and you never know what they will decide. Its like getting in to a prestigious school! If that doesn't work out there are a number of other alternatives that case worker will provide. The OT will come by tomorrow as well.

They also did another CT scan of her head just to make sure there was no late developing bleeding from her fall. They were a little concerned with a bit more weakness in her right arm vs left and just want to be cautious.

We are now out on the rooftop terrace in the fresh air and sunshine. Karen is really enjoying it and says she feels like a dog laying in the sun.

Thanks for the beautiful flowers from Erin, Livy, Jean Jones and the Bradfords/Wilsons and all the cards that flow in daily from so many of you!

Please pray for continued healing and a good outcome for rehab.

Rusty

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Saturday Night

No big changes today. We are still waiting for PT and/or OT assessment but sounds like that normally doesn't occur over the weekend.

Rusty

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Friday Evening

The PA from the transplant group finally came by tonight. She was ready to send Karen home but we (Karen and I) both felt that Karen needs some Physical Therapy assessment and possibly rehab. We want to get her home but don't feel like she was ready and able the last time she went home. We want to be more cautious this time. We are not sure how much of that can happen over the weekend so pretty sure she will stay in the hospital over the weekend.

The PA did tell us that Karen is free to get up and move around as long as she keeps the cervical collar on. The last thing we had heard was thursday and we were told to limit movement. Her right arm is pretty weak and hurts to use it from the fall and she really hasn't had a chance to get her strength back from any of this. That is why we think more PT/rehab would be good, even if it means another stay somewhere before going home.

Thanks again for your prayers!

Rusty

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Friday Afternoon, April 8

We have moved from “Day Hospital” to a regular room.  Karen didn’t get much sleep at all last night because of the cervical collar and some pain.  She has been a bit uncomfortable today but doing pretty well.   We haven’t seen any doctors today, so really don’t know what the plan is.  I assume they will keep her here for a while to watch her and help to manage pain, but really don’t know.  I hope you all have a great weekend and enjoy the warm weather.

 

Rusty

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Thursday Night

Karen just got back from dialysis. The ortho doctors came to see her while she was there. The xrays of her neck showed that there was some movement between the two pieces of vertabra C7 (the vertabra that showed some displacement) but they are going to leave it alone for a week and recheck it (vs surgery). They are hoping it will heal with the immobilization collar.
The internal medicine doctor also came to see her and said that they are not concerned about the change in the pancreas. So some better news.

Karen is in some pain (her back)but hopefully meds will help with that.

Rusty

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Thursday, April 7

We got some bad news from the scans yesterday.  Karen has two fractured vertebrae in her neck (C1 at the top and C7).  C1 is just cracked but C7 has some displacement as well.  Right now the ortho doctors are trying to determine if immobilization is sufficient or if surgery is needed.   They checked out her movement and fortunately movement/nerves seem to be fine with the exception of some weakness in her arms when pushing out (using her triceps).  The scans also indicated some changes in her Pancreatic cyst and they will be bringing in internal medicine to take a look at that to see if anything needs to be done there.  They will be moving her from “Day Hospital” to a regular room so looks like we might be here for a while.

 

As you can imagine, we are a bit discouraged right now at these additional setbacks, but still know that God is in control and thankful for the healing that has already occurred!

 

Rusty

 

 

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