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

 

---

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

 

---

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

---

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

---

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

 

 

---

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

 

 

---

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

---

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

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

 

 

---

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

Wednesday, April 6

The head to toe scans last night showed no broken bones or internal bleeding so we are very thankful for that. They have done an additional CT scan on her shoulder for a closer look because she is having so much pain there. We have not heard results back on that. They have put a cervical collar on her neck (a bit uncomfortable) just as a precaution until they get results. She isn't feeling so good right now

The blood transfusions were completed late last night and that seems to have addressed the anemia for now.

They have now ordered an abdominal CT scan. We aren't sure why but think this is to check out further the Pancreatic cyst which was discovered back a month or so ago when she was in ICU, but appears to be a bit larger now from yesterday's scan. At that time (month or so ago) they said they were going to leave that alone but guess they want to make sure there are no issues with that contributing to her anemia.

She will be spending another night in the Day Hospital. Thanks again for your prayers and support! I will post another update tomorrow when we know more.

Rusty

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

Tuesday, April 5 - Small Setback

Karen has been getting weaker over the past several days (we believe from anemia) and this morning while we were getting ready to head to dialysis, she fell down in the house.  She said she felt wobbly and her knees buckled under her.  She hit the wall and hurt her right shoulder/back and skinned her leg pretty badly.  She also thinks she hit her head, but we haven’t found any sore spots or bruises there.  We were able to get her to dialysis and get that treatment done and then headed over to see the transplant doctors.  They have admitted her to the “Day Hospital” at Baptist.  This is a floor at Baptist where they send transplant patients for blood, IV fluids, special tests, etc.  but you are not officially admitted to the hospital.  They plan to do head to toe scans of her to check for broken bones as well as internal bleeding.  Since she is on blood thinners they have to be careful with bleeding.  After the scans they will be giving her two units of blood to treat the anemia.  We expect that she will spend the night (even though they call it “Day Hospital” it is a 24 hour operation and you can spend the night).

 

Right now the biggest concern is her shoulder.  She uses her arms a lot to help her get up/down stairs, and it hurts when she uses her right arm.  We are hoping nothing is broken.  That would complicate things significantly.  Also we are hopeful that once she gets the blood, she will begin feeling better.  Please pray for a positive outcome about her shoulder and increased strength from the blood transfusions.

 

Rusty

---

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

Saturday, April 2

There are no big changes since Monday's posting, but we expect recovery to be a bit slow after all she has been through. Karen is still very weak and has no appetite and has good and bad days.

I have had a number of people ask some questions that I thought others might want answers to:

- Q: Can Karen have another transplant? A: Yes. But she will need to regain her strength before that is even considered. She needs to be strong for any surgery. We are thinking this would be at least a matter of 6-12 months (unprofessional opinion!).

- Q: Is she still on the transplant list? A: Yes. Because the last transplant failed, she did not lose any accrued time on the list. We also have a couple of possible live donors (friends) who appear to be a match for a future transplant.

- Q: Will she be able to do dialysis at home again? A: Yes. Right now she is doing hemo-dialysis at the dialysis clinic three days per week. Once her abdomen heals from all the surgeries, she should be able to go back to peritoneal dialysis (every night at home while she sleeps).

- Q: Is there any residual impact from what she has been through? A: Other than the weakness and loss of appetite (which should go away), there should be no lasting effects.

- Q: What caused the rejection and the blood clots in her lungs (pulmonary emboli)? A: They determined that she has a blood clotting disorder which is being treated with medication.



Please continue to pray for improved appetite and strength. Thanks to all who have assisted with transportation and brought us meals! Hope you all have a great weekend!

Rusty

Rusty

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.